Today Lincoln was circumcised. According to his nurse Jenn (one of the many Jenn's), it was a "perfect" job and looks like "one of the best circs she's ever seen."
Two days ago Link had a rectal biopsy (we're really running this kid's privacy parts through the wringer!). We were happy to find out today that he does not have Hirschprung's Disease, which would have meant his body is incapable of pooping on it's own. Lincoln has a lot of trouble pooping, but his body is immature and his tone is low. Because the results were negative...
If all goes well tonight, Lincoln comes home tomorrow! There is a lot riding on tonight. But tomorrow morning we meet the company in Link's room that will be providing the oxygen for home, and we get a lesson on it. We will be schooled in his medication. And we will move out of room A5 for the first time in 120 days!
Wednesday, December 30, 2015
Saturday, December 26, 2015
Christmas Day 2015
We had a lovely Christmas Day. Elliot, Adeline & Charlotte woke us around 7:15, which was far better than what I had expected. We opened presents, too many as always, and had a nice big breakfast of eggs, sausage, and toast. We went outside to play in the incredible 60-65 degree weather. The twins had gotten "motorcycles" and Elliot got a hockey set. We enjoyed a good 30 minutes or more outside in the surprisingly warm sunshine, atypical of Christmas weather around here! We headed inside, and Daddy made popovers (a Jak family tradition) which we ate for lunch. Addie & Charlie headed off for naptime, Elliot exploring her new toys (I believe the Legos won out this time), and Mom and Dad tried to make sense of all the new stuff in the house.
We woke the twins from their nap a little before 4 and Dave and I drove them to his Uncle Tom's house. We dropped the kids there with Grammy and Grandpa, and then David and I headed off to the hospital. We handed off a box of chocolates to our nurse JoAnne who always signs up for Lincoln. We cuddled, fed, and snuggled our baby. Just before his feed, JoAnne agreed to remove his NG tube as Link has now gone over 48 hours of nippling all feeds. That was a nice Christmas gift - one less thing for Lincoln to be hooked up to! We can see still a bit more of his sweet face! After his feed, Dave and I went up to the Ronald McDonald room for dinner. There was (cold) garlic pasta with broccoli, linguine and mussels (we don't eat seafood, so we avoided this one!), baked ziti, and sausage and peppers. All cold. And the microwave there is broken. The kind volunteers offered to take our plates to another unit in the hospital and heat up our meals, but it just wasn't that big a deal, so we ate the cold food. We had dessert as well, then headed back down for more cuddling (and pumping).
I am a huge breastfeeding advocate and I really nursed my three girls for a long time. Lincoln's situation is of course totally different from the girls and I'm just so desperate to have him home at this point, I haven't even tried breastfeeding in at least a week! My plan is to start up at home with one or two feeds a day. I will continue pumping, I truly believe that my breastmilk is keeping this boy healthy and growing. He has to go 48 hours of fully nippled feeds to come home (he's hit that mark now!), and I didn't want to mess with his stats by trying breastfeeding as well. Looking forward to having him home so we can back on the wagon.
Speaking of coming home, we're definitely in the single digits. I'm actually guessing five days. His carseat is in his room, JoAnne is going to do the carseat test today! (An hour and a half of sitting in the carseat to be sure his sats don't tank.) We're waiting on clearance from cardio, his surgeon (for pooping issues), and his oxygen delivery. The end is SO near!!!
We woke the twins from their nap a little before 4 and Dave and I drove them to his Uncle Tom's house. We dropped the kids there with Grammy and Grandpa, and then David and I headed off to the hospital. We handed off a box of chocolates to our nurse JoAnne who always signs up for Lincoln. We cuddled, fed, and snuggled our baby. Just before his feed, JoAnne agreed to remove his NG tube as Link has now gone over 48 hours of nippling all feeds. That was a nice Christmas gift - one less thing for Lincoln to be hooked up to! We can see still a bit more of his sweet face! After his feed, Dave and I went up to the Ronald McDonald room for dinner. There was (cold) garlic pasta with broccoli, linguine and mussels (we don't eat seafood, so we avoided this one!), baked ziti, and sausage and peppers. All cold. And the microwave there is broken. The kind volunteers offered to take our plates to another unit in the hospital and heat up our meals, but it just wasn't that big a deal, so we ate the cold food. We had dessert as well, then headed back down for more cuddling (and pumping).
I am a huge breastfeeding advocate and I really nursed my three girls for a long time. Lincoln's situation is of course totally different from the girls and I'm just so desperate to have him home at this point, I haven't even tried breastfeeding in at least a week! My plan is to start up at home with one or two feeds a day. I will continue pumping, I truly believe that my breastmilk is keeping this boy healthy and growing. He has to go 48 hours of fully nippled feeds to come home (he's hit that mark now!), and I didn't want to mess with his stats by trying breastfeeding as well. Looking forward to having him home so we can back on the wagon.
Speaking of coming home, we're definitely in the single digits. I'm actually guessing five days. His carseat is in his room, JoAnne is going to do the carseat test today! (An hour and a half of sitting in the carseat to be sure his sats don't tank.) We're waiting on clearance from cardio, his surgeon (for pooping issues), and his oxygen delivery. The end is SO near!!!
Thursday, December 24, 2015
40 weeks old
Tomorrow is Lincoln's due date. He's ready to come home. He needs an oxygen tank set up at home as well asnanoortable tank and he will come home with a pulse-ox monitor. He needs to be signed off on by cardio. He needs his circumcision. He needs his ... I can't remember it all. But the wheels are in motion.
Tomorrow is Christmas Day. Lincoln's due date. We'll open our presents, go to Grammy and Grandpa's to open more (missing my family and feeling so homesick), send the girls with their grandparents to David's uncle's house while David and I head up to get some quiet snuggles with our little man.
I'm so grateful for the health of our son. One of his docs this week said that he has had the best possible outcome for a 23-weeker. Everyone today was shocked that a wimpy white boy was rocking out his due date. Now to get him home.
Friday, December 18, 2015
Oh Poop
Lincoln likes to keep us on our toes. Just when we get lulled into a false sense of security (I was back to secretly wishing for a Christmas Eve release...), something new comes our way! Today was poop. Lincoln doesn't really poop on his own. He has be 'stimmed' (Lubricated rectal thermometer) or given a suppository, or most often, both. And still we wait. And after a couple of days, the flood gates open and poops rivers.
Today when it was mentioned at rounds, folks got more serious. A surgical consult was called in. A barium enema was ordered. Potential surgery for Hirschprungs Disease - and a biopsy of his colon to diagnose. Surgeon said no more stimming or suppositories. Barium enema done - injecting contrast liquid so colon can be x-rayed to determine where the problems are. X-rays looked good, so he'll simply be watched for few days by NICU docs and surgeon.
We're still waiting on him,to improve with feeds. He's doing well when nippling every other feed, but he does not have the stamina to nipple every feed - he simply gets too tired. Feeds are what are really holding him back from coming home. He'll come home on oxygen - a big tank for the house and a small tank for traveling to doc appointments, etc. His tone sucks as well, he was a 23-weeker and this is to be expected. It's why bottling and pooping is so hard. He already sees a speech therapist and a physical therapist. Both of those will continue when we leave the hospital as part of early intervention.
Tuesday, December 15, 2015
"The Big D..."
Today for the first time, both our nurse (Kelly A) and our doctor (Dr. D) mentioned "The Big D..." It's been our goal since day one, but one day one and week one and month one I wasn't sure we'd even get to have The Big D... No one will say the word, but they all say The Big D...
Discharge. It's so close I can almost imagine it. It will come with lists and lists of to-dos. It will come with multiple prescriptions and instructions. But it will come. Sooner than later, in fact. Today, Lincoln was moved off his 1L cannula and onto a cc flow. The cc flow delivers pure oxygen (not mixed with room air) but in a much smaller amount (125mL instead of 1000mL). His daily caffeine (to keep A's and B's at bay - which haven't been a problem AT ALL) was DC'ed today. His daily potassium and sodium are being halved.
Dr. D sat in the rocking chair in our room (there because Kelly likes it for bottlefeeding) and chatted with me for 10 minutes or so today. He said feeds are going better, but expects the once the reflux medication really kicks in they'll improve even more. A few days ago someone finally listened when the nurses said reflux. (JoAnne has been telling me for about 5 weeks that he has reflux!) GI came down and put a tube down Lincoln's throat for 24 hours that read the acidity and reflux levels. Dr. D told me that any episode of acid lasting longer than 5 minutes is a concern and considered reflux. Lincoln had one episode that last 13 minutes! Imagine that pain? Poor baby! The medication should be very effective in treating the reflux.
Dr. D explained the other stuff above, too. He talked about what an old man Lincoln is; he asked how many days old he is - 104 - and how many weeks he is gestationally - 38. Thirty-eight weeks is not actually that old, Dr. D said, we'll cut him a little slack. When Lincoln comes home, he'll come home on his CC flow and will follow Pulmonology for his crappy lungs. Eventually pulmonology will wean his oxygen at home, starting with days.
The end is near. I'm ready. But Link can take the time he needs, because we want him to come home as healthy as possible. And because he's coming home, and I could not be more grateful.
Discharge. It's so close I can almost imagine it. It will come with lists and lists of to-dos. It will come with multiple prescriptions and instructions. But it will come. Sooner than later, in fact. Today, Lincoln was moved off his 1L cannula and onto a cc flow. The cc flow delivers pure oxygen (not mixed with room air) but in a much smaller amount (125mL instead of 1000mL). His daily caffeine (to keep A's and B's at bay - which haven't been a problem AT ALL) was DC'ed today. His daily potassium and sodium are being halved.
Dr. D sat in the rocking chair in our room (there because Kelly likes it for bottlefeeding) and chatted with me for 10 minutes or so today. He said feeds are going better, but expects the once the reflux medication really kicks in they'll improve even more. A few days ago someone finally listened when the nurses said reflux. (JoAnne has been telling me for about 5 weeks that he has reflux!) GI came down and put a tube down Lincoln's throat for 24 hours that read the acidity and reflux levels. Dr. D told me that any episode of acid lasting longer than 5 minutes is a concern and considered reflux. Lincoln had one episode that last 13 minutes! Imagine that pain? Poor baby! The medication should be very effective in treating the reflux.
Dr. D explained the other stuff above, too. He talked about what an old man Lincoln is; he asked how many days old he is - 104 - and how many weeks he is gestationally - 38. Thirty-eight weeks is not actually that old, Dr. D said, we'll cut him a little slack. When Lincoln comes home, he'll come home on his CC flow and will follow Pulmonology for his crappy lungs. Eventually pulmonology will wean his oxygen at home, starting with days.
The end is near. I'm ready. But Link can take the time he needs, because we want him to come home as healthy as possible. And because he's coming home, and I could not be more grateful.
Monday, December 7, 2015
Get This Baby Feeding!
In the last few days, my patience has been running thin. That, I'm sure, has to do in part with the return of good old Aunt Flo. It didn't come back this quickly with the girls, I'm sure it's because pumping exclusively doesn't hold a candle to actually nursing. But I'm done - super done - with being at the hospital. I love the people there. I love our doctors and nurses. The NICU isn't a place you can just pop into once you're out to visit old friends. But I need to be out. We're on day 96, and I'm just over it.
So in the last couple of days I've run into our nurse Kelly and our nurse Tina. We haven't had them much for Lincoln (a lot of Kelly early on, but not recently). They were amazing with the twins and getting them to feed so we could go home. I begged them both upon seeing them to help get Lincoln feeding. Kelly was on today with him and had him working.
I worry - maybe unnecessarily - about offending our two regulars, JoAnn and Heather. I love them both, but I know Kelly and Tina will kick Link's butt. JoAnn and Heather love him too much to kick his butt LOL. We'll see how he did with feeds today.
At this point, I think feeds are the key to getting him home. He's still on the 2L nasal cannula, but he's doing fairly well with that. He sucks at nippling from the bottle or me, so that's the major obstacle at this time.
So in the last couple of days I've run into our nurse Kelly and our nurse Tina. We haven't had them much for Lincoln (a lot of Kelly early on, but not recently). They were amazing with the twins and getting them to feed so we could go home. I begged them both upon seeing them to help get Lincoln feeding. Kelly was on today with him and had him working.
I worry - maybe unnecessarily - about offending our two regulars, JoAnn and Heather. I love them both, but I know Kelly and Tina will kick Link's butt. JoAnn and Heather love him too much to kick his butt LOL. We'll see how he did with feeds today.
At this point, I think feeds are the key to getting him home. He's still on the 2L nasal cannula, but he's doing fairly well with that. He sucks at nippling from the bottle or me, so that's the major obstacle at this time.
Thursday, December 3, 2015
3 Months Old - Day 92
Here I am snuggling with my baby boy on his three month birthday. I have such mixed feelings right now. I feel excitement that he will likely be home by Christmas, frustration at finding time to see him (only just over an hour today!), joy that he does so well, anger that this happened at all. I truly try to focus on the positive things. I am shocked and thrilled that he has done as well as he has. At a few different points I was mentally preparing myself for a funeral, now I'm wondering if there will even be any developmental disabilities.i love snuggling and breastfeeding him. His warm little body resting on mine is the greatest, most calming feeling. I just hate that at three months old, here we are, still putting him back in his hospital crib and saying goodbye. I'm trying to get in good time with my girls, because I know that will be tougher once he comes home. I even talked to A and C this morning about how they can't touch him or pick him up without Mommy and Daddy helping.
Link got his first bath in a tub (okay, bucket) today. He's drinking prune juice once a day to keep things moving, but still usually needs some help pooping. He's gaining weight steadily, weighing in at 6 lbs, 12 oz today. He has his Brutus the Buckeye mobile set up on his new bed. We'll keep making him strong and praying for him to come home and complete our family soon.
Wednesday, December 2, 2015
Lactation Cookies
Uh...yum!
These cookies have brewer's yeast, flax seed meal, and oatmeal to help with milk production. I should probably eat a lot of them to help myself out!
Here's the link and recipe:
http://www.food.com/recipe/oatmeal-chocolate-chip-lactation-cookies-by-noel-trujillo-192346
Open Crib!
Lincoln moved into an open crib yesterday! This is a major step toward going home. In an open crib, Lincoln has to learn to maintain his body temperature. He is wearing fleece pajamas today, then is covered up in a two-layer flannel blanket folded twice (so eight layers right there), another flannel folded twice (four more layers), and a hat. It takes a lot for little preemie babies like him to do that on their own. We had been told no open crib until he was nippling most feeds, because nippling burns calories, and he needs those calories to keep warm. Time to bring in our Brutus (Ohio State Buckeyes) mobile!
Monday, November 30, 2015
A Little Backsliding
Lincoln was moved yesterday to the 1.5L cannula. He couldn't tolerate it without low satting, so today he's been moved back to the 2L. He's doing okay on it, but has been all over the map with his sats this morning. There was even talk of moving back more, but it was agreed that they would keep him on the cannula and watch him closely.
I did the 11AM feed this morning, he was nursing pretty well - certainly his best effort yet - but that only means about 2 minutes of active trying. After his feed, I ran a few errands, mostly to get him things for his new room. I hope he likes navy & green, that's what he's getting. I'm back now for the 2PM feed. We'll see if he wakes up enough to eat.
My milk supply is dropping. I'm trying everything I can to get it back up again. Pumping every single hour, taking Fenugreek, eating oatmeal and drinking milk. I've just ordered brewer's yeast to make lactation cookies! I've been drinking water non-stop, and I need to make more of an effort to eat actual meals (not just grabbing something on the go) and healthy food. I will win this and increase my supply!
I did the 11AM feed this morning, he was nursing pretty well - certainly his best effort yet - but that only means about 2 minutes of active trying. After his feed, I ran a few errands, mostly to get him things for his new room. I hope he likes navy & green, that's what he's getting. I'm back now for the 2PM feed. We'll see if he wakes up enough to eat.
My milk supply is dropping. I'm trying everything I can to get it back up again. Pumping every single hour, taking Fenugreek, eating oatmeal and drinking milk. I've just ordered brewer's yeast to make lactation cookies! I've been drinking water non-stop, and I need to make more of an effort to eat actual meals (not just grabbing something on the go) and healthy food. I will win this and increase my supply!
Sunday, November 29, 2015
Six Pounds, Six Ounces and Bottle-Feeding
Lincoln is growing like a weed, taking 55 cc's per feed. Another day or two and he'll be taking two ounces. I'm not nearly pumping that each session, so time to get work pumping every hour, on the hour.
I went to the hospital for the 11 AM feed and the 2 PM feed. He slept through both. He latched for a minute on the morning feed, but didn't do much as he just couldn't wake up enough. I gave the nurses permission to try bottles today. They tried it on the 5 PM feed, and he took ten cc's in 12 minutes. Bottles are easier than breast, so I'm frustrated and worried that he won't breastfeed. I won't give up, especially since he's my last and I love nursing.
We worked on Link's room today as well as decorating for Christmas. Photo of Link's Triforce above his crib...
And a photo of him because he' so cute!
Busy Life!
Life keeps getting in my way of posting. Lincoln has had a HUGE week!
Lincoln went from the bi-nasal IMV to the CPAP and has already transitioned to a nasal cannula. This is major as his terrible lungs are adjusting quickly to the new big changes! So thrilled for my little man!
We've started breastfeeding attempts. He latches well, but doesn't seem to know what to do once the milk is in his mouth. It's a slow process, hopefully bottlefeeding will help. I've given permission for them to try bottles today. I really want this baby to breastfeed (I hate cleaning bottles, I love the convenience and cuddles of nursing!), so I hope bottlefeeding doesn't mess that up.
Lincoln was six pounds, five ounces as of yesterday. He has grown out of his preemie clothes and is now in newborn clothes.
Lincoln went from the bi-nasal IMV to the CPAP and has already transitioned to a nasal cannula. This is major as his terrible lungs are adjusting quickly to the new big changes! So thrilled for my little man!
We've started breastfeeding attempts. He latches well, but doesn't seem to know what to do once the milk is in his mouth. It's a slow process, hopefully bottlefeeding will help. I've given permission for them to try bottles today. I really want this baby to breastfeed (I hate cleaning bottles, I love the convenience and cuddles of nursing!), so I hope bottlefeeding doesn't mess that up.
Lincoln was six pounds, five ounces as of yesterday. He has grown out of his preemie clothes and is now in newborn clothes.
Monday, November 23, 2015
A Few Great Days in a Row!
Things have been so busy around here lately that I haven't had time to post. Lincoln is doing really well! He's eleven and a half weeks old and five pounds, eleven ounces (Elliot's birth weight!). They've been rather quickly weaning his vent, ad tomorrow could be the day he goes on CPAP!!!
We had our drama club show on Wednesday, Friday, and Saturday night. It was really great - the kids performed Mulan, Jr. Then last night I had a sleep study done, apparently I have sleep apnea. When I was in the hospital having Lincoln, my stats were dropping to as low as 80. Tonight I had parent/teacher conferences, then several teachers went to Spycoast for drinks (and some of us watched the Ranger game - 3-0 shutout 😀).
Only a day and a half of school left for me. I'm pretty excited to be done, but feeling guilty at the same time. Link still isn't home, obviously, but he needs me at the hospital frequently soon to do feeds. Wednesday is the second day of parent/teacher conferences, then I'm done! Plus Mom & Dad, Jamey, Constance and the kids are coming for a visit! I'm thrilled!
Wednesday, November 18, 2015
"Better"
Today we got hear that Lincoln's eyes are "better," and next week there will be a follow up.
He's hit five pounds three ounces.
He jumped from 40 to 45 cc's at feeds.
He's on an antibiotic for a lump in his arm, likely cellulitis.
He's still on the Bi-nasal IMV which will then lead to the cpap. Once he's off that, he can begin nippling (breastfeeding and bottle feeding).
Orders were put in today to begin physical therapy. He's getting old and it's time for him to get a workout LOL.
He's 34 weeks, 5 days and 10 weeks, 6 days old.
Sunday, November 15, 2015
Cellulitis, Tranfusions, and 'Really Bad Lungs'
We had an excruciatingly long day yesterday. I woke at 4:20 and crashed after 10 pm. I was so very looking forward to sleeping in today. But the phone rang at 7:00am. It was the hospital. Dave jumped up and grabbed the phone. Our baby was 'doing great,' but they had identified a weird nodule on his arm as cellulitis. They wanted to begin IV antibiotics right away. No problem.
Daddy came to visit. Lincoln's crib is low at 30 and he's getting another transfusion. He's on two antibiotics for the cellulitis. Daddy came because he had a concert at 2. Elle had a cello recital at 2, as well. The plan was for Dadfy, Addie and Charlie to go to the concert while Elle and I went to the recital. My car wouldn't start, though, so Daddy had to skip his concert to take us all to the recital. Elliot did a great job! We are so proud of her!
Tonight I was speaking to our nurse JoAnne about how we seem to have plateau'ed on the vent. She said it's because he's a 23-weeker with 'really bad lungs.' She said he's a miracle baby to be doing so well, but it's still a long road and lots of growing to go.
Thursday, November 12, 2015
10 Weeks Old
Lincoln is ten weeks old today! 71 days of being at the hospital. Ugh.
Today they finally weaned his vent from a respiratory rate of 35 to 30. While I was holding him today, I gave him his pacifier and his oxygen was down to 21%, which is same as the air we breathe. That's a great sign! Even with his new vent setting he was doing really well.
Link got a sonogram on his arm this afternoon. On his right bicep he has a hard lump under his skin. Hopefully we find out the results of that quickly.
Wednesday, November 11, 2015
ROP Surgery
This morning when I came in, our nurse Donna was on break. I came into our little room and set up and started pumping. Donna came in and said, 'Oh hi Mommy. Let me go get Carol.' That should have been my clue. In fact, I wondered who Carol was and why she needed to be gotten. I know Carol, just forgot her name, and as soon as she came in, I knew. Dr. Cody, our pediatric ophthalmologist had already done Lincoln's appointment this morning. The ROP is progressing, so he'll be having surgery at 6PM. Mommy cried. I know it's minor in the grand scheme of things, but damn. Lincoln will be put back into a warming bed (we've been upgraded one step to just an incubator). He needs this bed because the entire top of it lifts up but still helps him maintain his temperature. He needs an IV line put back in. He will have to skip two feeds, and if heeds to skip more than that, he'll have to go back on IV fluids. He'll be sedated with morphine to keep him from moving. The surgery takes about 30 minutes per eye. The morphine will be stopped as soon as the surgery is over.
To make matters more fun, while driving home from Miss Ronnie's yesterday, Addie threw up in Dave's car. I fed her a very bland dinner, and she really seemed to be feeling fine. I went to my Mothers Of Twins meeting and got a text from Dave that she had thrown up in her bed and in the hallway. He got her cleaned back up and back to bed. Around 11:30 PM, she was calling for us and had gotten sick yet again. Now it's a waiting and guessing game for who gets it next. I'm not holding Lincoln today, because I don't want him to get sick in addition to everything else.
Sunday, November 8, 2015
"The Plan..."
This is how I seem to start most of my sentences these days. "The plan is..." For example, "The plan is that you'll go to the hospital and BJ's, while I take the girls to mall for the afternoon." Dave's part of the plan worked out. The mall part for the afternoon, not so much. We went to Macy's and I got Elliot's Christmas dress as well as a Baby's First Christmas outfit for Lincoln (hoping newborn size is not embarassingly big). But the girls were being major pains (Major Pain! (for all my HIMYM fan friends)), so that was our first and last stop. In fact, Addie hid under one of the clothing racks and as Elliot and I, holding Charlie's hand, ran around shouting Addie's name (and I went into a panic spiral as any parent would - certain my child had been taken as the the mall was PACKED), Addie simply popped out after probably only 90 seconds, but maybe 90 years, and said "A BOO!" We went home after that.
So "The Plan is..." that I will work all four days this week. I haven't worked a four day week yet. I rather hysterically told myself that I'd work a five day week before I go on leave. I know now I cannot physically or emotionally handle that. But this week is Veteran's Day on Wednesday. So I think I can pull off two days on, one day off, two days on. Yet I am absolutely screaming inside at going back to work for two and a half more weeks. Why did I even go back to work in the first place?! I think it was partially to prove to myself that I could. I know of myself that I tend to play the martyr. It's annoying, but you can't unmartyr once you've martyred. I was also certain that I was letting David down if I didn't. The money concern is always there, too. But I am super duper ready to be done. This is incredibly hard.
I was actually thinking that when Lincoln comes home (it's so nice to say "when"!), and if - like his sisters - he refuses a bottle, I will have so much free time! No more driving to the hospital! And no more pumping! Those two things will free up at least four hours a day! Think of all the laundry I could do!!!
Speaking of Lincoln - in Lincoln news, he continues to progress. Yesterday I asked during rounds if there was a plan to begin weaning the vent more. He's been hanging out on these settings for nearly a week. I feel like one doctor in particular is more on top of things than others, and we don't have him right now. So we ask questions hoping it will lead some of the other doctors to make changes. Sure enough, they agreed that it was time to wean a little bit, provided Lincoln is not having too many A's or B's. (Apnea and Bradycardia) Since he has had none, he went from 20/6 to 18/6 and his rate stayed at 35. Last night when Dave was there it was decided that they would make tiny weaning changes daily. This morning when Dave was there, it was decided that they wouldn't. This is a taste of NICU life - one doctor says one thing, the next day a different changes "The Plan."
He's gaining weight beautifully - 4 pounds and change now. He looks cute in his big boy (preemie) clothes, but I kind of miss his little diaper body. Also, I'm not kangarooing like I should, because it's easier for the nurses and for me if we just swaddle him and hand him over. No changing clothes for me, no stripping him down. Maybe this week I'll get some kangaroo time in. Today feels rushed since I'm working tomorrow, it's nearly 4PM and I haven't been up yet.
Link's on Pulmacort (a steroid) and Xopanex (for asthma). The Xopanex is an inhaler - he has a cute little mask that he inhales it with - they taught me how to use it as he will likely need it when he comes home still. He's on day 67 of life - I don't how he's that old already and I can't believe we've only been going to hospital for 67 days - it feels so much longer!!!
So "The Plan is..." that I will work all four days this week. I haven't worked a four day week yet. I rather hysterically told myself that I'd work a five day week before I go on leave. I know now I cannot physically or emotionally handle that. But this week is Veteran's Day on Wednesday. So I think I can pull off two days on, one day off, two days on. Yet I am absolutely screaming inside at going back to work for two and a half more weeks. Why did I even go back to work in the first place?! I think it was partially to prove to myself that I could. I know of myself that I tend to play the martyr. It's annoying, but you can't unmartyr once you've martyred. I was also certain that I was letting David down if I didn't. The money concern is always there, too. But I am super duper ready to be done. This is incredibly hard.
I was actually thinking that when Lincoln comes home (it's so nice to say "when"!), and if - like his sisters - he refuses a bottle, I will have so much free time! No more driving to the hospital! And no more pumping! Those two things will free up at least four hours a day! Think of all the laundry I could do!!!
Speaking of Lincoln - in Lincoln news, he continues to progress. Yesterday I asked during rounds if there was a plan to begin weaning the vent more. He's been hanging out on these settings for nearly a week. I feel like one doctor in particular is more on top of things than others, and we don't have him right now. So we ask questions hoping it will lead some of the other doctors to make changes. Sure enough, they agreed that it was time to wean a little bit, provided Lincoln is not having too many A's or B's. (Apnea and Bradycardia) Since he has had none, he went from 20/6 to 18/6 and his rate stayed at 35. Last night when Dave was there it was decided that they would make tiny weaning changes daily. This morning when Dave was there, it was decided that they wouldn't. This is a taste of NICU life - one doctor says one thing, the next day a different changes "The Plan."
He's gaining weight beautifully - 4 pounds and change now. He looks cute in his big boy (preemie) clothes, but I kind of miss his little diaper body. Also, I'm not kangarooing like I should, because it's easier for the nurses and for me if we just swaddle him and hand him over. No changing clothes for me, no stripping him down. Maybe this week I'll get some kangaroo time in. Today feels rushed since I'm working tomorrow, it's nearly 4PM and I haven't been up yet.
Link's on Pulmacort (a steroid) and Xopanex (for asthma). The Xopanex is an inhaler - he has a cute little mask that he inhales it with - they taught me how to use it as he will likely need it when he comes home still. He's on day 67 of life - I don't how he's that old already and I can't believe we've only been going to hospital for 67 days - it feels so much longer!!!
Thursday, November 5, 2015
9 Weeks Old
It's almost 6PM and I haven't been to the hospital yet. Neither has Dave. Luckily, Lincoln can't tell time yet to know that his parents are too busy for him.
Elliot, Addie, and Charlie had dentist appointments today. Addie did great! Charlie has a cavity and a weak spot (the dentist suggested sealant). Elliot got lectured about not brushing well enough and needing to floss as well as needing to brush her tongue. Sealant and loads of visits to the orthodontist were suggested for Elliot, too.
My day hasn't been great. I finally filled out all the paperwork for my FSA reimbursement. It was in my bag on my drive home. My bag tipped over, and my bag of breastmilk bottles also tipped and leaked all over all my stuff. Including my paperwork to get my $800 back. I hope they'll accept it. I hope they think it got ruined in the rain or something. I found the paperwork saying I was approved for the thing I was scolded for yesterday - it had been sent back to me on Monday to add the words "see attached" to, because apparently no one else could write that on there. I didn't work Monday, so I didn't get it until yesterday and I didn't open it until today. That's why I got yelled at. I thought I was mostly done with stuff for Mulan. The first show is in 13 days. But now I think there's more I need to do.
I really need to be done with work. I'm officially over my head.
Elliot, Addie, and Charlie had dentist appointments today. Addie did great! Charlie has a cavity and a weak spot (the dentist suggested sealant). Elliot got lectured about not brushing well enough and needing to floss as well as needing to brush her tongue. Sealant and loads of visits to the orthodontist were suggested for Elliot, too.
My day hasn't been great. I finally filled out all the paperwork for my FSA reimbursement. It was in my bag on my drive home. My bag tipped over, and my bag of breastmilk bottles also tipped and leaked all over all my stuff. Including my paperwork to get my $800 back. I hope they'll accept it. I hope they think it got ruined in the rain or something. I found the paperwork saying I was approved for the thing I was scolded for yesterday - it had been sent back to me on Monday to add the words "see attached" to, because apparently no one else could write that on there. I didn't work Monday, so I didn't get it until yesterday and I didn't open it until today. That's why I got yelled at. I thought I was mostly done with stuff for Mulan. The first show is in 13 days. But now I think there's more I need to do.
I really need to be done with work. I'm officially over my head.
ROP
I meant to blog yesterday, but the day got away from me. After being scolded (by two different people) at work for not doing something I was supposed to do (that I did), I arrived at the hospital. I said hi to our nurse Heather, and another nurse walked into my room. She rubbed my back as she said, "Hi honey. Has anyone talked to you about Lincoln's eyes?" I replied, "No, but I'm guessing it's not good since you're rubbing my back." I was right. Each week Lincoln's eyes get checked by Dr. Cody. Last week and the week before they were "immature." We expect that, of course. Well, yesterday's check-up showed "wonky" growth of his blood vessels. He has stage 2 Retinopathy of Prematurity. Obviously being so very premature affects many things. One of those things is eye development. Stage 1 is mild, stage 2 is moderate, stage 3 is severe. Stage 5 is blindness. Stage 1 can often go away on it's own. Stage 2 has to be watched - that's where we are. That doesn't sound so bad, except that I was also told that Lincoln is younger than when they would expect to see Stage 2. So next week if Dr. Cody sees that it is progressing still, Lincoln will need laser surgery on his eyes. This will protect his central vision. We obviously want that. Unfortunately, it will affect his peripheral vision. One nurse actually said, "But that doesn't matter, because he's never had it so he won't miss it." As a teacher especially I know how important peripheral vision is. So I'm praying for no progression. Also I'm trying to tell myself that at around 8 days old we were supposed to be going for heart surgery to keep my child alive; therefore eye surgery is far more minor and definitely the preferred necessary surgery.
Then a team of four people came in. Pulmonologists. Lung specialists. Luckily they didn't tell me much that we hadn't already heard. Lincoln is wheezing - it's asthma. Hopefully he'll outgrow it. He has BPD, or essentially premature lungs. Hopefully he'll outgrow that, too. Now that he's off the vent maybe that will improve. I should have asked that. But the four people introduced themselves and said to get to know them as they would be following up with Lincoln even after he heads home.
After that team left, I went out of our pod and said to Heather, "If anyone comes to talk to me about immunizations, tell them to run away. Today is NOT the day." Sure enough, as I was leaving, an NP stopped me and said, "What do you want to do about immunizations for Lincoln?" I said, "Nothing today." She said, "I'll put a note on here to do it next week?" I said, "Put a note on there to talk to me about it next week."
Then a team of four people came in. Pulmonologists. Lung specialists. Luckily they didn't tell me much that we hadn't already heard. Lincoln is wheezing - it's asthma. Hopefully he'll outgrow it. He has BPD, or essentially premature lungs. Hopefully he'll outgrow that, too. Now that he's off the vent maybe that will improve. I should have asked that. But the four people introduced themselves and said to get to know them as they would be following up with Lincoln even after he heads home.
After that team left, I went out of our pod and said to Heather, "If anyone comes to talk to me about immunizations, tell them to run away. Today is NOT the day." Sure enough, as I was leaving, an NP stopped me and said, "What do you want to do about immunizations for Lincoln?" I said, "Nothing today." She said, "I'll put a note on here to do it next week?" I said, "Put a note on there to talk to me about it next week."
Tuesday, November 3, 2015
Vent Steps 10/29/2015
I'm struggling to stay upbeat and positive the last couple of days. I've been good telling myself that it's temporary and that our baby is going to survive. But the drivin,g and the hours, and the waiting, and the upswings and downswings, etc. are starting to wear on me. I'm ready for him to be home, so that at least the sitting and waiting and pumping and cuddling are done with the whole family. Right now it feels like such limited family time. I'm trying to keep my positive face on, though.
I do remind myself of how blessed we are, though. A former colleague of mine just had grand twins at 24 weeks. One did not survive at all, the other died this morning. My baby is going to live and I will be forever grateful for that. I don't know why my baby gets to survive and someone else's doesn't, but I am so in love at this point, I couldn't be more thankful.
Two Months Old
I can't believe Lincoln is 2 months old! He's 3lbs, 14oz. He has chins! Multiple!
He is being weaned more from his vent, he is on diuretics, and he's doing really well overall. I'm so proud of him!
It's getting harder to get to the hospital. Link's sisters need us more than before and deserve our time, too. But once Link starts nippling (breast AND bottle feeding) I will need to be at the hospital more. Things will get harder before they get easier.
Lincoln wore clothes today for the first time! Pic to follow!
Friday, October 30, 2015
32 Weeks Gestation
Lincoln is now 8 weeks old and 32 weeks gestation. He's about 3.5 pounds - I should have looked that up today! He is doing really well on his binasal IMV. Dr. Mintzer says immunizations start in TWO days! I spoke with his nurse Heather today, and she said we can spread them out, just let nurses know. I have no problem with him being immunized, but I'd rather he take his time getting them, rather than getting them all in one fell swoop. Now that Lincoln is extubated, he's much easier to get out to cuddle. Daddy and I both get to hold pretty much whenever! He cried today and I caught it on video. This is the third day we can hear him, but the first two days it was so soft we could barely tell.
Yesterday I went to my endocrinologist appointment. It was a follow-up since I had had gestational diabetes. Dr. Miller was not concerned about my numbers told me to stop testing. I do have to go for one final round of blood work to check my A1C. That will tell us if my diabetes went away this time or not. While I was there, I mentioned that my hair is falling out (remember from my hair appointment last week?). He kind of poo-poo'ed it, and I said I knew it wasn't from the pregnancy yet. He asked how I knew that. I replied that with my other two pregnancies my hair had been amazing, then at pretty much 3 months to the day postpartum it had begun falling out like crazy along my hairline. He agreed that that was normal for post pregnancy. I said this time it is different. I predicted that we were having a boy, because my hair was so different this time - very thin, very fragile, etc. The prenatal vitamins didn't seem to help either. As I was speaking to Dr. Miller, he was typing the entire time. So he asked me to show him where I was losing my hair. I showed him the spot on top of my head. He said aloud as he typed, "Not FOS." I asked what FOS stood for, he said Full of Shit. He said a lot of women come in complaining of losing hair, but its due to post-pregnancy or thinning hair as you age. This was neither of those.
Dr. Miller told me I have Alopecia Areata, an autoimmune disease. He told me to see a dermatologist right away (I have an appt for Monday morning.) Essentially, my white blood cells see my healthy hair follicles as unhealthy and attack. So I have four bald patches the size of half dollar coins. I'm doing a terrible Donald Trump comb-over to hide them. The good news is they can grow back, the bad news is they can NOT grow back and more hair can fall out. I'll know more after my appointment with the dermatologist. I don't know if there is medication I can take, but I do know they can try to speed up the regrowth with steroid shots. This couldn't have come at a worse time. I have enough to deal with, and now this on top of it. It's very frustrating, embarrassing, and I want the universe to go a little easy on me right now!
Yesterday I went to my endocrinologist appointment. It was a follow-up since I had had gestational diabetes. Dr. Miller was not concerned about my numbers told me to stop testing. I do have to go for one final round of blood work to check my A1C. That will tell us if my diabetes went away this time or not. While I was there, I mentioned that my hair is falling out (remember from my hair appointment last week?). He kind of poo-poo'ed it, and I said I knew it wasn't from the pregnancy yet. He asked how I knew that. I replied that with my other two pregnancies my hair had been amazing, then at pretty much 3 months to the day postpartum it had begun falling out like crazy along my hairline. He agreed that that was normal for post pregnancy. I said this time it is different. I predicted that we were having a boy, because my hair was so different this time - very thin, very fragile, etc. The prenatal vitamins didn't seem to help either. As I was speaking to Dr. Miller, he was typing the entire time. So he asked me to show him where I was losing my hair. I showed him the spot on top of my head. He said aloud as he typed, "Not FOS." I asked what FOS stood for, he said Full of Shit. He said a lot of women come in complaining of losing hair, but its due to post-pregnancy or thinning hair as you age. This was neither of those.
Dr. Miller told me I have Alopecia Areata, an autoimmune disease. He told me to see a dermatologist right away (I have an appt for Monday morning.) Essentially, my white blood cells see my healthy hair follicles as unhealthy and attack. So I have four bald patches the size of half dollar coins. I'm doing a terrible Donald Trump comb-over to hide them. The good news is they can grow back, the bad news is they can NOT grow back and more hair can fall out. I'll know more after my appointment with the dermatologist. I don't know if there is medication I can take, but I do know they can try to speed up the regrowth with steroid shots. This couldn't have come at a worse time. I have enough to deal with, and now this on top of it. It's very frustrating, embarrassing, and I want the universe to go a little easy on me right now!
Wednesday, October 28, 2015
Day 56
Every day for 56 days we've been at the hospital with Lincoln. He'll be 8 weeks old tomorrow. He's growing nicely, up to 3lbs, 5oz from 1lb, 10oz. He has a nice head of fluffy blonde hair. His feeds are up to one ounce (30mL) every 3 hours. He's still on his vent and we're working to get him off of it. I have officially stopped counting the number of times I've held him as it's over 10 times now.
They switched his vent over to the SIMV setting which makes him do more of the work. Lincoln didn't like that, so he's back on the old setting. They have weaned his PIP to 12 and his PEEP is at 6. The lower those numbers, the stronger he's getting.
Yesterday I came to the hospital after work. It was a nice, but too quick, visit. I pumped, and when I pump, that usually makes the time here too short to hold him. My good friend Trisha was scheduled to be his nurse last night. (Nursing shifts run 7 to 7.) So my plan was to go home, have Dave take Elliot and her friend Sarah to dance, come up to the hospital, and then pick the girls up and bring them home. Then I would go back to the hospital with the hopes of holding Link and hanging with Trish a bit. Dave reminded me that we did that last week and he had a cello student show up. So he stayed home and I took the girls to dance and went back to the NICU to hold Lincoln. When I got Elliot home, we had dinner, did Girl Scout homework, and got her off to bed. I went upstairs to pump while David got ready to go to the hospital. He commented that I hadn't seen Addie and Charlie all day and shouldn't have gone back to the hospital. I didn't even really think about it, because my plan had been to go back when the girls were all in bed, and when plans changed I just bumped up my visit.
I have been feeling incredible amounts of guilt lately. When I'm home I feel guilty I'm not with Lincoln, my newborn, preemie, needy baby. When I'm with Lincoln, I feel guilty I'm not with my girls at home. Dave and I have barely seen each other. We are constantly passing each other, and our longest conversations happen over text.
So when Dave made his comment, I got upset. It's one thing to think you're failing at parenting no matter what you do, it's another thing when your spouse says it out loud to you. Dave and I actually don't fight often. But my anxiety and depression make me really hold onto it a long time. So some angry words were exchanged, and he headed off to the hospital. I was upset. I tried to keep myself together, but after awhile I could feel a panic attack coming on. My heart felt like it was racing (though I don't know if it was or if it was just my brain making me think it was), my skin felt like pins and needles. I felt like I was on fire, but shivering from being so cold. I tried meditation - Dave got me this amazing meditation headband and app called MUSE. I used it. It tells you how much of the time you're calm over the meditation session. I only got 2% for the entire session. I've never seen it so low. So then I really knew the panic attack was coming. I had read that should not take Xanax while breastfeeding. I also felt it was the only way I could get out of this one. I held strong and paced my room - there must be a runway now in my carpet for how fast and long I paced. I crawled back into bed. I got up and got in the shower. The shower was freezing and burning my skin at the same time. I ugly cried and sat on the floor of the shower. I finally got out and up. I turned a romantic comedy on, I can often distract myself out of anxiety, that didn't work - my skin was crawling and I was too uncomfortable. I texted Trisha and asked her if I could take Xanax. I knew this wasn't going away anytime soon. It turns out, after talking to Trisha and Dr. Google, that you can take one low dose of it and just not nurse for two hours; you simply cannot stay on a low constant dose, which is what some people are prescribed. It is prescribed for me simply to help me get out of panic attacks.
I had to take the day off work today, because it takes me a good 24 hours to actually feel back to my normal physical self after a panic attack. I was bummed to take the day off, I had several things I needed to get done and check on, plus the seventh grade is on a field trip which means an extra free period with which to get said things done.
I type all of this not to air my dirty laundry about a fight between David and I. His point was completely reasonable. It's just that people have anxiety and depression and not a lot of people talk about it. So maybe someone reading this understands me a little more, or maybe someone can relate. David and I are all good. This does not mean our relationship is in jeopardy - it's just a normal up and down of a relationship. And frankly, we're both exhausted, worried, and stretched to our thinnest selves emotionally right now, so we're easy to set off.
-----
Nurse JoAnn (I think she LOVES Lincoln - she is always quick to sign up for him, and when she doesn't get him, she comes in to visit with him anyway - and we love her!) just told me that they're electively extubating him today! In less than an hour, in fact. I can't believe it! They kept putting it off and putting it off, I started thinking "next week, I guess," over and over. This is big news. I can't wait to see him without the tube down his throat.
-----
Okay, he has been extubated! He's on a CPAP with bi-nasal IMV, which means they can still adjust the rate of breaths and keep his lungs and airways inflated. He's been extubated almost an hour now, and he's really doing well, satting 100 on 40% FAO2. You can hear him cry - if you stop everything you're doing, no machines are alarming, the door to his incubator is open, and you stick your ear through the porthole. LOL. It's the softest cry ever - very hoarse from having the tube down. The first thing Lincoln did after having his tube removed is to grab his feeding tube and remove it, too. Luckily that one is easy to replace. But apparently, Lincoln opts to not have ANY tubes down his throat now.
Nurses and NP's and doctors will now watch for him to have too many A's and B's - apnea's and bradychardia attacks. If so, he'll be reintubated. But for now, we wait and see how he does.
They switched his vent over to the SIMV setting which makes him do more of the work. Lincoln didn't like that, so he's back on the old setting. They have weaned his PIP to 12 and his PEEP is at 6. The lower those numbers, the stronger he's getting.
Yesterday I came to the hospital after work. It was a nice, but too quick, visit. I pumped, and when I pump, that usually makes the time here too short to hold him. My good friend Trisha was scheduled to be his nurse last night. (Nursing shifts run 7 to 7.) So my plan was to go home, have Dave take Elliot and her friend Sarah to dance, come up to the hospital, and then pick the girls up and bring them home. Then I would go back to the hospital with the hopes of holding Link and hanging with Trish a bit. Dave reminded me that we did that last week and he had a cello student show up. So he stayed home and I took the girls to dance and went back to the NICU to hold Lincoln. When I got Elliot home, we had dinner, did Girl Scout homework, and got her off to bed. I went upstairs to pump while David got ready to go to the hospital. He commented that I hadn't seen Addie and Charlie all day and shouldn't have gone back to the hospital. I didn't even really think about it, because my plan had been to go back when the girls were all in bed, and when plans changed I just bumped up my visit.
I have been feeling incredible amounts of guilt lately. When I'm home I feel guilty I'm not with Lincoln, my newborn, preemie, needy baby. When I'm with Lincoln, I feel guilty I'm not with my girls at home. Dave and I have barely seen each other. We are constantly passing each other, and our longest conversations happen over text.
So when Dave made his comment, I got upset. It's one thing to think you're failing at parenting no matter what you do, it's another thing when your spouse says it out loud to you. Dave and I actually don't fight often. But my anxiety and depression make me really hold onto it a long time. So some angry words were exchanged, and he headed off to the hospital. I was upset. I tried to keep myself together, but after awhile I could feel a panic attack coming on. My heart felt like it was racing (though I don't know if it was or if it was just my brain making me think it was), my skin felt like pins and needles. I felt like I was on fire, but shivering from being so cold. I tried meditation - Dave got me this amazing meditation headband and app called MUSE. I used it. It tells you how much of the time you're calm over the meditation session. I only got 2% for the entire session. I've never seen it so low. So then I really knew the panic attack was coming. I had read that should not take Xanax while breastfeeding. I also felt it was the only way I could get out of this one. I held strong and paced my room - there must be a runway now in my carpet for how fast and long I paced. I crawled back into bed. I got up and got in the shower. The shower was freezing and burning my skin at the same time. I ugly cried and sat on the floor of the shower. I finally got out and up. I turned a romantic comedy on, I can often distract myself out of anxiety, that didn't work - my skin was crawling and I was too uncomfortable. I texted Trisha and asked her if I could take Xanax. I knew this wasn't going away anytime soon. It turns out, after talking to Trisha and Dr. Google, that you can take one low dose of it and just not nurse for two hours; you simply cannot stay on a low constant dose, which is what some people are prescribed. It is prescribed for me simply to help me get out of panic attacks.
I had to take the day off work today, because it takes me a good 24 hours to actually feel back to my normal physical self after a panic attack. I was bummed to take the day off, I had several things I needed to get done and check on, plus the seventh grade is on a field trip which means an extra free period with which to get said things done.
I type all of this not to air my dirty laundry about a fight between David and I. His point was completely reasonable. It's just that people have anxiety and depression and not a lot of people talk about it. So maybe someone reading this understands me a little more, or maybe someone can relate. David and I are all good. This does not mean our relationship is in jeopardy - it's just a normal up and down of a relationship. And frankly, we're both exhausted, worried, and stretched to our thinnest selves emotionally right now, so we're easy to set off.
-----
Nurse JoAnn (I think she LOVES Lincoln - she is always quick to sign up for him, and when she doesn't get him, she comes in to visit with him anyway - and we love her!) just told me that they're electively extubating him today! In less than an hour, in fact. I can't believe it! They kept putting it off and putting it off, I started thinking "next week, I guess," over and over. This is big news. I can't wait to see him without the tube down his throat.
-----
Okay, he has been extubated! He's on a CPAP with bi-nasal IMV, which means they can still adjust the rate of breaths and keep his lungs and airways inflated. He's been extubated almost an hour now, and he's really doing well, satting 100 on 40% FAO2. You can hear him cry - if you stop everything you're doing, no machines are alarming, the door to his incubator is open, and you stick your ear through the porthole. LOL. It's the softest cry ever - very hoarse from having the tube down. The first thing Lincoln did after having his tube removed is to grab his feeding tube and remove it, too. Luckily that one is easy to replace. But apparently, Lincoln opts to not have ANY tubes down his throat now.
Nurses and NP's and doctors will now watch for him to have too many A's and B's - apnea's and bradychardia attacks. If so, he'll be reintubated. But for now, we wait and see how he does.
Sunday, October 25, 2015
Big Weight Loss
We expected a big weight loss today after skipping two feeds yesterday and pooping "for three hours." He's down to 1395. Hoping hoping hoping to get the breathing tube out this week and move on.
Saturday, October 24, 2015
Medical Mystery
Lincoln sent everyone into a tizzy today. While Daddy visited this morning, he started being really naughty. He threw up, and his nurse was very worried that he had aspirated because he was having some bad breathing epidsodes (bradycardia). The brady's were unexplained, the vomiting was weird because he hadn't done that since he first began his feeds. His belly was distended. His O2 sats were all over the place.
The nurses (his nurse Rosemary and NP Pam) decided to find the problem fast. A chest x-ray was performed because they needed to see if he had aspirated or if his tube had moved. A new blood gas was taken, even though one had been performed just yesterday, to rule out any major changes.
Then Lincoln pooped. And pooped, and pooped, and pooped! Rosemary said he pooped for about three hours. And when he was done pooping? Everything went back to normal. *sigh* Boys.
I'm super ready for him to be off the breathing tube. The next step is a nasal cannula which is step back from a CPAP. Essentially, a CPAP that they can still change the settings on like his vent. I think he and I both are ready for that. Maybe this week.
Today I told Pam, his NP, that I need him home two months from today. Christmas Eve. She asked when his due date was, I told her Christmas Day. She said, "Oh, that may be do-able." I'm not asking to have him home super early or to really jump the gun. Just one stinkin' day before his due date. THAT will be my Christmas miracle.
The nurses (his nurse Rosemary and NP Pam) decided to find the problem fast. A chest x-ray was performed because they needed to see if he had aspirated or if his tube had moved. A new blood gas was taken, even though one had been performed just yesterday, to rule out any major changes.
Then Lincoln pooped. And pooped, and pooped, and pooped! Rosemary said he pooped for about three hours. And when he was done pooping? Everything went back to normal. *sigh* Boys.
I'm super ready for him to be off the breathing tube. The next step is a nasal cannula which is step back from a CPAP. Essentially, a CPAP that they can still change the settings on like his vent. I think he and I both are ready for that. Maybe this week.
Today I told Pam, his NP, that I need him home two months from today. Christmas Eve. She asked when his due date was, I told her Christmas Day. She said, "Oh, that may be do-able." I'm not asking to have him home super early or to really jump the gun. Just one stinkin' day before his due date. THAT will be my Christmas miracle.
Friday, October 23, 2015
Haircut
I got the haircut, not Lincoln. Normally, haircuts are no big deal. For me they are a big deal. I am terrible about "taking care of myself," I tend to put my stuff off because I feel guilty leaving the kids yet again for something like that. Plus my hair is straight and boring, and who can even tell when I get my haircut but me? Well, it has been 15 months since my last haircut. I know I need to keep it healthier, and I definitely wanted to get rid of some length, and I knew once Lincoln comes home I'll be even WORSE about things like haircuts.
Teri cut off between 6 and 8 inches. It was a lot of hair, and it wasn't very healthy. When I was pregnant with all my girls, my hair was luscious. It was thick, healthy, and easy to manage. This pregnancy, my hair was thinner than it's usually very thin-ness, oily, tangled easily, and overall just gross. So it was time to get rid of my gross hair.
I always always always have my hair up in a messy bun. It's easy, I like how it looks enough. I dream of other hairstyles, but with thin hair, most of them would never work. So anyway, off I went to Teri. She combed through my hair and found bald spots. Like bald spots. Four of them. Four bald spots. I haven't even started losing my hair yet from Lincoln's birth (with my other pregnancies, three months after delivery my hair started falling out and became my normal thin hair again with a receding hairline which eventually grew back). I'm hoping that doesn't happen this time. I can't afford to lose more hair. I have four bald spots, I'm doing a Donald Trump combover now, and I'm worried about the rest of my hair falling out. Teri said it's likely from stress. I guess it is. Now I'm stressed about having bald spots and a combover at 36 years old.
It was a big topic of conversation at school today, though. Students and teachers alike commented on the difference. They didn't realize how much hair had been cut off, though, because most have never seen it down. In fact, one student said, "Mrs. Jak, your hair is getting so long!" But she's never seen it down, so she didn't realize it was actually 8 inches shorter.
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Lincoln is now 3lbs, 3oz. That's one ounce heavier than Charlie's birth weight. He's doing a nice job of growing. He's off his antibiotic, there was no infection. He's starting diuretics again, the doctors are eager to get him off his vent and he's not really cooperating. The hope is that the diuretics will give him the push he needs to wean off the vent. He had a blood transfusion a couple of days ago, and he's still getting his sodium and caffeine.
Teri cut off between 6 and 8 inches. It was a lot of hair, and it wasn't very healthy. When I was pregnant with all my girls, my hair was luscious. It was thick, healthy, and easy to manage. This pregnancy, my hair was thinner than it's usually very thin-ness, oily, tangled easily, and overall just gross. So it was time to get rid of my gross hair.
I always always always have my hair up in a messy bun. It's easy, I like how it looks enough. I dream of other hairstyles, but with thin hair, most of them would never work. So anyway, off I went to Teri. She combed through my hair and found bald spots. Like bald spots. Four of them. Four bald spots. I haven't even started losing my hair yet from Lincoln's birth (with my other pregnancies, three months after delivery my hair started falling out and became my normal thin hair again with a receding hairline which eventually grew back). I'm hoping that doesn't happen this time. I can't afford to lose more hair. I have four bald spots, I'm doing a Donald Trump combover now, and I'm worried about the rest of my hair falling out. Teri said it's likely from stress. I guess it is. Now I'm stressed about having bald spots and a combover at 36 years old.
It was a big topic of conversation at school today, though. Students and teachers alike commented on the difference. They didn't realize how much hair had been cut off, though, because most have never seen it down. In fact, one student said, "Mrs. Jak, your hair is getting so long!" But she's never seen it down, so she didn't realize it was actually 8 inches shorter.
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Lincoln is now 3lbs, 3oz. That's one ounce heavier than Charlie's birth weight. He's doing a nice job of growing. He's off his antibiotic, there was no infection. He's starting diuretics again, the doctors are eager to get him off his vent and he's not really cooperating. The hope is that the diuretics will give him the push he needs to wean off the vent. He had a blood transfusion a couple of days ago, and he's still getting his sodium and caffeine.
Wednesday, October 21, 2015
A Step Back
Lincoln had some setbacks today. First, his weight is down. I expected that with the Lasix - I was actually telling my coworker Lisa that I suspected something was up because he gained five ounces in two days. Too much, too fast. Then, his heart rate was very high, going over two hundred frequently. Nurse Brianna said that he was likely too hot, and indeed the incubator wan't taking his temp reading accurately. But they ran blood tests anyway. His hematocrit was low, so he's getting a blood transfusion. They're unsure about an infection (something I suspected earlier when I was there because of his temperature), so Lincoln is getting two days of antibiotics to play it safe.
Not much good news today. None, even. This is the trip in the NICU - good days/bad days, two steps forward, one step back, etc...
Praying for a good day tomorrow.
Monday, October 19, 2015
Day 47 of Life
Day Forty-Seven of Life: That's how rounds started today. It's also how rounds started over three years ago, the last day of rounds for Adeline & Charlotte. I keep telling myself we can get through at least 47 days, we've done it once already!
I'm happy to report that Lincoln is doing very well on day 47. He hit three pounds today - in fact, three pounds, one ounce! Also the settings on his ventilator were lowered today. His respiratory rate went from 50 to 40, and his PIP from 17 to 16. Essentially this means that they are expecting Link to do more of his own breathing. I think he'll do well. I hope he'll do well! Blood test tonight at 8:00 to check and see how it's going. Positive thoughts.
I'm happy to report that Lincoln is doing very well on day 47. He hit three pounds today - in fact, three pounds, one ounce! Also the settings on his ventilator were lowered today. His respiratory rate went from 50 to 40, and his PIP from 17 to 16. Essentially this means that they are expecting Link to do more of his own breathing. I think he'll do well. I hope he'll do well! Blood test tonight at 8:00 to check and see how it's going. Positive thoughts.
Sunday, October 18, 2015
It's Temporary
Link was all about being held today. No problems! No idea what his problem was yesterday LOL!
His weight shot up last night - he's now 2lbs, 15oz! He's such a little champ - I'm super proud!
They've weaned his settings on his vent again, but only after having to go up again last night, so we're back to where we were yesterday afternoon.
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I'm actually pretty proud of Dave and I. This is SUPER not easy. There is a lot of guilt - no matter where I am, I feel guilty that I'm not where I'm not. If I'm at the hospital, I feel guilty about not being home; If I'm at home, I feel guilty about not being at the hospital. And driving to the hospital every day is brutal. And emotionally it gets tough. And we're tired. But I keep telling myself it's temporary. Every time I hate pumping, it's temporary. Every time I'm stuck in traffic again, it's temporary. And I'm grateful that the thoughts that I was thinking earlier in his short life are different now. Now I think, "Will he be home in time for New Year's? Christmas even?" instead of, "Will I buy him special pajamas? And how tiny will the casket be? And how do you choose a funeral home?" I can say I feel confident that my little man is coming home. But for now, we put in our NICU time. It's temporary.
His weight shot up last night - he's now 2lbs, 15oz! He's such a little champ - I'm super proud!
They've weaned his settings on his vent again, but only after having to go up again last night, so we're back to where we were yesterday afternoon.
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I'm actually pretty proud of Dave and I. This is SUPER not easy. There is a lot of guilt - no matter where I am, I feel guilty that I'm not where I'm not. If I'm at the hospital, I feel guilty about not being home; If I'm at home, I feel guilty about not being at the hospital. And driving to the hospital every day is brutal. And emotionally it gets tough. And we're tired. But I keep telling myself it's temporary. Every time I hate pumping, it's temporary. Every time I'm stuck in traffic again, it's temporary. And I'm grateful that the thoughts that I was thinking earlier in his short life are different now. Now I think, "Will he be home in time for New Year's? Christmas even?" instead of, "Will I buy him special pajamas? And how tiny will the casket be? And how do you choose a funeral home?" I can say I feel confident that my little man is coming home. But for now, we put in our NICU time. It's temporary.
Saturday, October 17, 2015
FINE - I WON'T Hold You!
Lincoln did NOT want to be held today, apparently. His nurse sweetly asked if I would like to, especially since he had been such an easy baby for her all morning. So Christine handed him over, but we could not seem to find the exact location of the breathing tube that Link was craving. After low satting for about 30 minutes and adjustments being made like crazy, we still could not find the sweet spot. So I made him go back to bed.
In other news, he's up to 2lbs, 12oz! And his vent settings were slightly lowered today. They're planning to wean him slowly off this vent - perhaps if we do it slowly, Link won't notice and give us any trouble.
In other news, he's up to 2lbs, 12oz! And his vent settings were slightly lowered today. They're planning to wean him slowly off this vent - perhaps if we do it slowly, Link won't notice and give us any trouble.
Friday, October 16, 2015
30 Weeks Adjusted
Today we would have been jumping for joy at hitting 30 weeks. Don't get me wrong, I'm still thrilled we've hit 30 weeks. Link is doing great on his new vent now, in fact they were able to lower some settings today. They will do a blood gas test every 12 hours for a bit to see how he's doing on new settings and "wean him aggressively." Great news!
Weight remained the same today. Feeds remained the same as well.
Weight remained the same today. Feeds remained the same as well.
Thursday, October 15, 2015
Six Weeks Old
Linky is six weeks old today! This is when some Moms return to work after having a baby. I went back four weeks ago - boohoo! I am insanely blessed, though, that that was my choice and I can take as much time as I need. In some ways this six weeks has actually blown by quickly - you know the saying, "The days are long, but the weeks are short." That definitely applies here.
We're getting all kinds of reviews on Lincoln's new vent. First we were told we'd be going to the conventional vent, then told maybe we'd go straight to the CPAP. Then I was told we'd be going to the CPAP, and yet when I arrived a couple of days ago, they were talking conventional vent again. Two nights ago, he was finally switched over to the conventional vent. I don't like it for several reasons: 1. I don't understand it. I knew what the settings and things were on the Jet. I thought I would recognize this vent from when Addie & Charlie were on it, but it turns out to be a NEW conventional vent. 2. It says right on it, right at the top "Life Support Device." I don't want to be reminded like that that if we turn it off, my child could die. Let's put that in the fine print. 3. It alarms ALL THE TIME. And because it's new, the nurses don't totally understand what to do (though they're learning quickly). Now I need to learn.
But then, I spoke with Dr. Eche today and he said Lincoln isn't doing that well on the new vent. So he'll be changing him to ANOTHER different vent. I said, "Good, I don't understand this one anyway. I won't waste my time trying to learn about it." But THEN, David went up after me today, and said now Link is doing WELL on this vent and he will likely stay on it. *sigh* WHAT?
He's growing well - 2lbs, 10oz today, which is one full pound bigger than what he was when he was born. I got to hold him again, I think I'm up to 8 times now. I sang to him nearly the entire hour I held him - I made up a ton of songs when the girls were all little and I tried singing some to him, but they all rhymed with "girl" and ended with "world." "Boy" doesn't rhyme with "world," so a lot of my songs ended with "Oy." He may be getting some nice Long Island Jewish feels.
Oh, and RSV season is officially here (which I know, because my friend's daughter is in the same hospital as us WITH RSV, poor baby!), so no more visits allowed for big sis. The twins keep saying they can't wait to be four to be able to go see Lincoln. That doesn't work for two reasons - 1. We plan to have him home before they turn 4, and 2. RSV season doesn't end until April at least!
We're getting all kinds of reviews on Lincoln's new vent. First we were told we'd be going to the conventional vent, then told maybe we'd go straight to the CPAP. Then I was told we'd be going to the CPAP, and yet when I arrived a couple of days ago, they were talking conventional vent again. Two nights ago, he was finally switched over to the conventional vent. I don't like it for several reasons: 1. I don't understand it. I knew what the settings and things were on the Jet. I thought I would recognize this vent from when Addie & Charlie were on it, but it turns out to be a NEW conventional vent. 2. It says right on it, right at the top "Life Support Device." I don't want to be reminded like that that if we turn it off, my child could die. Let's put that in the fine print. 3. It alarms ALL THE TIME. And because it's new, the nurses don't totally understand what to do (though they're learning quickly). Now I need to learn.
But then, I spoke with Dr. Eche today and he said Lincoln isn't doing that well on the new vent. So he'll be changing him to ANOTHER different vent. I said, "Good, I don't understand this one anyway. I won't waste my time trying to learn about it." But THEN, David went up after me today, and said now Link is doing WELL on this vent and he will likely stay on it. *sigh* WHAT?
He's growing well - 2lbs, 10oz today, which is one full pound bigger than what he was when he was born. I got to hold him again, I think I'm up to 8 times now. I sang to him nearly the entire hour I held him - I made up a ton of songs when the girls were all little and I tried singing some to him, but they all rhymed with "girl" and ended with "world." "Boy" doesn't rhyme with "world," so a lot of my songs ended with "Oy." He may be getting some nice Long Island Jewish feels.
Oh, and RSV season is officially here (which I know, because my friend's daughter is in the same hospital as us WITH RSV, poor baby!), so no more visits allowed for big sis. The twins keep saying they can't wait to be four to be able to go see Lincoln. That doesn't work for two reasons - 1. We plan to have him home before they turn 4, and 2. RSV season doesn't end until April at least!
Tuesday, October 13, 2015
A Big Night for Lincoln
When I left the hospital today at 3, Lincoln was prepping to get a blood transfusion, be extubated and reintubated with a larger tube (he's outgrown his last), and be moved onto the conventional ventilator. His hematocrit was low, hence the blood transfusion. Yesterday, Kelly said she could hear an air leak and at one point heard him crying. Those were the signs that the breathing tube he's on now (the one he's had since birth) was too small. They'll remove it and replace it with a bigger tube today. I'm not entirely sure why we're switching to the conventional vent, since the original goal was just to put him on CPAP. I think Lincoln is high-satting and low-satting oooften and too unpredictably to be ready for the CPAP. Link also started Lasix today to help him get rid of too much fluid. Maybe the combo of everything will allow him to wean off the vent.
In other news, Kelly gave him a 'spa day' and he got a good sponge bath. I was shocked to see how much hair he has! Until now, his hair has been kind of matted down, but this afternoon it was fluffy and fuzzy and almost a Mohawk 😉. So cute!
Monday, October 12, 2015
Oh Poop!
Lincoln is doing well. He seems to be growing like a weed and getting stronger. He's had his last dose of hydrocortisone two days ago, and his blood pressure numbers are staying normal. The goal now is to wean him off the jet vent. He's at max feeds - 22mLs. He will start lasix tomorrow for three days. On the third day, he'll begin an oral diuretic. This will rid his body of excess fluid, including his lungs, and hopefully from there he can be weaned off the jet. After the jet, he'll go on a CPAP machine.
Lincoln is looking good. Mommy held him today. We've been holding him more as he gets bigger. Once he's off the jet, he's easier to hold. The jet has a little box that sits in Link's bed that sends puffs of air to his chest. That box has very short tubing, making it very hard to move him. It's a two person job, for sure. When the jet is gone, the box is gone.
It's gotten very hard to leave the hospital. I hate not being here with him, I hate not holding him daily. He's a baby and I'm a Mommy. We're supposed to be cuddling, breastfeeding, and snoozing. Instead, I talk to him (and sing and play music and read books to him) through a porthole. Can't wait to scoop him up whenever he or I want! It's unnatural to leave your baby everyday. Thankfully, the nurses here are amazing.
Oh, funny aside...I was changing Lincoln's diaper today, and when I opened it there was poop galore! When I went to wipe him, he pooped more. I closed his diaper up. I tried again a minute later, same thing. I wiped, he pooped. He finally stopped, so I removed the old diaper with a new one under it, and he immediately started again! Yet another new diaper and we were good to go. Kelly got him ready to hand him over to me, and lo and behold, another poopy diaper. The boy is cleaned out!
Saturday, October 10, 2015
Two and Half Pounds
Linky-doo hit two and a half pounds today! His feeds are up to 19cc's. His max feed is 22cc's, so they're taking him up one cc every 12 hours (at his 2:00 feeds), as long as he can tolerate it, until he hits 22. Growing is one of the best ways to help him, so between his increased feeds and calorie supplement, he's doing well growing on the jet ventilator.
Speaking of the jet, I spoke with Eche again today as I was leaving the hospital. Eche is having an adrenal ultrasound done on Monday, and is hoping to take Link off the jet soon after analysis. He will be on a cpap next. Getting off the vent means no more intubation. While the jet vent is good for Lincoln and the reason for him being alive, it is also damaging his lungs. Link has BPD, which is common for kids on a vent. The vent keeps him alive, but causes damage as well. His lungs are stressed and hyperextended. Getting off the jet and onto a cpap will give his lungs a break.
In other news, the last time I was in our new pool was September 2nd, the day I went into labor with Lincoln. We had the pool closed today. Boo. LOL.
Speaking of the jet, I spoke with Eche again today as I was leaving the hospital. Eche is having an adrenal ultrasound done on Monday, and is hoping to take Link off the jet soon after analysis. He will be on a cpap next. Getting off the vent means no more intubation. While the jet vent is good for Lincoln and the reason for him being alive, it is also damaging his lungs. Link has BPD, which is common for kids on a vent. The vent keeps him alive, but causes damage as well. His lungs are stressed and hyperextended. Getting off the jet and onto a cpap will give his lungs a break.
In other news, the last time I was in our new pool was September 2nd, the day I went into labor with Lincoln. We had the pool closed today. Boo. LOL.
Friday, October 9, 2015
29 Weeks (Adjusted)
Lincoln will be referred to by an Adjusted Age until Christmas day of 2017. Preemies have a real age and an adjusted age. Link's adjusted age right now is 29 weeks gestational. We would have been thrilled to have made it this far in the pregnancy.
I was happy when I got to the hospital and saw that our Kelly was in our pod. She wasn't on with Lincoln, but I knew she'd help get him out so I could hold him. I, maybe not even politely, let our nurse Michelle know I wanted to hold him today. I'm just not in a great emotional place, and I super needed to hold my son. Michelle talked to Kelly and agreed to let me hold him. I held him for about an hour and forty-five minutes. Mommy needed that.
During rounds, Dr. Eche was pleased to see the kangaroo care. When rounds were over, he said, "I'm happy for the TLC for baby AND mommy." Lincoln is at 16cc feeds, going up one cc (mL) every 12 hours until he hits 20, I think. 15cc's is half an ounce. He's being D/C'ed (discontinued?) on his TPN at 5 PM. He will receive sodium twice a day to keep his levels up, but other than that, now that he's on full feeds he does not need IV fluids. His vent settings are up to 420 and 29/11. He went up 5g today to 1090g - that makes him 2 lbs, 6 oz.
I didn't go to work today after originally planning to, because I am not just feeling like I can handle it right now. This is a lot to go through. My mind is always in a million places. Today was too much for me, so instead I headed to the hospital. I knew this would be hard. I didn't expect that even when Lincoln is doing well, which he is right now, I can still have a hard time. Typically, how Lincoln is doing directly affects how I feel. Today I feel a little out of control.
I was happy when I got to the hospital and saw that our Kelly was in our pod. She wasn't on with Lincoln, but I knew she'd help get him out so I could hold him. I, maybe not even politely, let our nurse Michelle know I wanted to hold him today. I'm just not in a great emotional place, and I super needed to hold my son. Michelle talked to Kelly and agreed to let me hold him. I held him for about an hour and forty-five minutes. Mommy needed that.
During rounds, Dr. Eche was pleased to see the kangaroo care. When rounds were over, he said, "I'm happy for the TLC for baby AND mommy." Lincoln is at 16cc feeds, going up one cc (mL) every 12 hours until he hits 20, I think. 15cc's is half an ounce. He's being D/C'ed (discontinued?) on his TPN at 5 PM. He will receive sodium twice a day to keep his levels up, but other than that, now that he's on full feeds he does not need IV fluids. His vent settings are up to 420 and 29/11. He went up 5g today to 1090g - that makes him 2 lbs, 6 oz.
I didn't go to work today after originally planning to, because I am not just feeling like I can handle it right now. This is a lot to go through. My mind is always in a million places. Today was too much for me, so instead I headed to the hospital. I knew this would be hard. I didn't expect that even when Lincoln is doing well, which he is right now, I can still have a hard time. Typically, how Lincoln is doing directly affects how I feel. Today I feel a little out of control.
Thursday, October 8, 2015
Five Weeks
Lincoln is five weeks old today. I'm feeling down. I realized this afternoon that he's been held five times for one hour each time. My child is five weeks old and he's been held for five hours of his life. That's awful. It makes me really sad.
Wednesday, October 7, 2015
Changing Boy Diapers
Last night for the first time I got to take Lincoln's temperature and change his diaper. His nurse Hannah offered and I jumped it on it. I changed my first boy diaper! (Actually, I used to change mostly boy diapers as a babysitter, there was something blue in the water on Robson Rd where most of my families were.) Tonight, I got to do it again with nurse Elyn.
Lincoln is up to 1070g, he's packing on the grams! He's up to 14cc's on his feeds, and as a result they've gone to 1kg of TPN for KVO (keep vein open). The TPN is being used to keep his pic line open for now, tomorrow they will go to something else like saline for that and get rid of TPN and lipids all together. Link goes to 15cc feeds tomorrow which are full feeds, and that means he doesn't need his IV fluids at all. There are still some significant breathing issues going on as a result of premature lungs, we're happy that Dr. Eche is back on with us to deal with them. Dr. Eche even said his goal is that by the end of his two weeks with Link, he hopes to have him off the jet and onto a cannula.
Something is wrong with the keyboard on my iPad that it's not showing up, so impressively, I've typed this entire post by muscle memory and a lot of backspacing.
Tuesday, October 6, 2015
Staying the Course
I didn't post yesterday. My days are so full with working sometimes, getting things ready for the school musical, driving the hospital, spending time with my three beauties, being a wife, and being a homemaker! Luckily, there was not much news-wise to share. And today's news is the same as yesterday's news.
Lincoln's vent settings have gone up some, he had been able to get down as low as 23% oxygen, with room air being 21%. Now he's back up to 30-40%. His jet vent was giving him as low as 240 breaths per minute, but now it's up to 420. His PIP was lowered from 29 to 27, and his PEEP is at 10, I believe. His immature lungs just aren't able to do it all yet.
Link's feeds are currently at 12 cc's of breastmilk with a 24-calorie supplement. I'll have to ask (again) about whether that's 24-cals in a day or in each feed. I've asked before, but always gotten an 'Um...I think...' answer. When his nutritionist is here, I'll ask her.
My Dad, a.k.a. PopPop, whose 64th birthday was yesterday, made us "Keep Calm and Linc-oln" t-shirts. We will try to get a picture of the five of us wearing them. We've also given out a couple to nurses who have spent a lot of time with our little man.
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Okay, I asked about the 24-calorie fortifier. It's a liquid that's added to breastmilk in 25 cc units. For every 100 cc's, 24 calories are added to the milk. Lincoln is getting 12cc's per feed now, so after every 8 feeds, he's gotten a bonus 24 calories. He gets 8 feeds a day, so for now it's an extra 24 calories a day. As his feeds go up, he'll be getting his extra calories more quickly.
Lincoln's vent settings have gone up some, he had been able to get down as low as 23% oxygen, with room air being 21%. Now he's back up to 30-40%. His jet vent was giving him as low as 240 breaths per minute, but now it's up to 420. His PIP was lowered from 29 to 27, and his PEEP is at 10, I believe. His immature lungs just aren't able to do it all yet.
Link's feeds are currently at 12 cc's of breastmilk with a 24-calorie supplement. I'll have to ask (again) about whether that's 24-cals in a day or in each feed. I've asked before, but always gotten an 'Um...I think...' answer. When his nutritionist is here, I'll ask her.
My Dad, a.k.a. PopPop, whose 64th birthday was yesterday, made us "Keep Calm and Linc-oln" t-shirts. We will try to get a picture of the five of us wearing them. We've also given out a couple to nurses who have spent a lot of time with our little man.
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Okay, I asked about the 24-calorie fortifier. It's a liquid that's added to breastmilk in 25 cc units. For every 100 cc's, 24 calories are added to the milk. Lincoln is getting 12cc's per feed now, so after every 8 feeds, he's gotten a bonus 24 calories. He gets 8 feeds a day, so for now it's an extra 24 calories a day. As his feeds go up, he'll be getting his extra calories more quickly.
Sunday, October 4, 2015
Weaning Steroid
Lincoln has been on hydrocortisone for five days now, today is his last day. Tomorrow, rather than just cut him off cold turkey, they will give him half the dose every eight hours for three days, then that same half dose only once per day for three days. He's dropped weight again for the third day in a row; five days ago he was 925g, now he's 915g. I am hoping the extra calorie fortifier he gets, which adds twenty-four extra calories to his feedings and that he is tolerating well, will help him not only gain again, but gain more quickly. He's been on the fortifier for a few days now (first a 22-cal, now 24-cal), but the steroid has been helping to level off some functions, so I hoping that's the reason for weight.
Lincoln sucking on his binky 💜💜💜
Friday, October 2, 2015
Need Good News Today
Today Lincoln is 30 days old. This is head-sono-repeat-day. Incredibly important test today. A couple of weeks ago, Lincoln was diagnosed with two level 1 brain bleeds. Head sonos are done on day 1 of life, then day 10, and again at day 30. Link had an extra one in there after his really really bad couple of days. It was difficult to know that we had to wait until day 30. It's finally here!
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The results are in: The repeat head sono was..."unremarkable." When I asked Dr. Pynn if that meant no sign of the bleeds, she read, "There is no definitive proof of brain bleeds." YAY!!! Brain bleeds above a level one can lead to developmental delays, blindness, deafness, immobility, and even death. We are THRILLED!!!!!! that his bleeds are gone!
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The results are in: The repeat head sono was..."unremarkable." When I asked Dr. Pynn if that meant no sign of the bleeds, she read, "There is no definitive proof of brain bleeds." YAY!!! Brain bleeds above a level one can lead to developmental delays, blindness, deafness, immobility, and even death. We are THRILLED!!!!!! that his bleeds are gone!
Thursday, October 1, 2015
Actually Four Weeks Old!
Okay, I'm so exhausted that I can't count. TODAY Lincoln is four weeks old, not yesterday. No big changes today, just feeds going to 9 cc's and tonight they will start fortifying my breast milk so Link gets more calories. He should really start growing now.
Most importantly, Daddy David FINALLY got to hold his son! 
Wednesday, September 30, 2015
Four Weeks Old and TWO POUNDS!
My little man is doing a great job growing! He finally hit two pounds today, and his nutritionist, who left a bit of a bitter taste in my mouth with the twins, even said she's proud of Lincoln and Mommy! He's staying on his curve of about 35% for his gestational age (28 weeks tomorrow). He was born at 95% in height and weight, but both are around 35% now. That number is just fine as long as he continues to stay at or above that percentage.
Link was started on hydrocortisone last night, a steroid that doctors are using to bring his cell receptors to the cell's surface so when the dopa floats by, the cells grab hold. He's had three doses so far and the results are really showing. He's been able to come down on his dopa dose to 5 so far with a goal of 3 for today. His blood pressure, temperature, and heart rate were all increased which is a sign that the dopa dose is too strong.
Link's also gone up to 8 cc's on his feeds. David says one of the doctors said that 15 cc's would be considered a full feed at this age/size, so we're halfway there.
I headed up to the Ronald McDonald Room for coffee and a bagel a bit ago. We've got a rough road ahead with lots of ups and downs, but being on the Ped's floor is still difficult. As I walked down the hallway into the room (NICU is floor 5, Ped's and PICU is floor 11 along with RMR) there were parents on the phone discussing insurance, discussing their child's change in stool, one woman crying on her husband's shoulder. The world seems to zoom by outside of the windows, but it is a completely different world inside this hospital.
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Here we are again, David and I, back at the hospital for the evening. Lincoln is doing great on his hydrocortisone steroid treatment. His dopamine is down to just 1.67 mcg! They've weaned him as low as he can go and now we watch his blood pressure readings for a while. Dr. DeCristafaro was just here and I said, "He looks good. He's doing well, yes?" And Dr. D nodded and then knocked on wood. LOL - none of the docs or nurses will say it out loud for fear of jinxing it! We asked Dr. D what happens after Link's five days on the steroid. He said if the cell receptors continue responding well, then great. If not, they can do a maintenance round of the steroid. Today is a good day, folks!
Link was started on hydrocortisone last night, a steroid that doctors are using to bring his cell receptors to the cell's surface so when the dopa floats by, the cells grab hold. He's had three doses so far and the results are really showing. He's been able to come down on his dopa dose to 5 so far with a goal of 3 for today. His blood pressure, temperature, and heart rate were all increased which is a sign that the dopa dose is too strong.
Link's also gone up to 8 cc's on his feeds. David says one of the doctors said that 15 cc's would be considered a full feed at this age/size, so we're halfway there.
I headed up to the Ronald McDonald Room for coffee and a bagel a bit ago. We've got a rough road ahead with lots of ups and downs, but being on the Ped's floor is still difficult. As I walked down the hallway into the room (NICU is floor 5, Ped's and PICU is floor 11 along with RMR) there were parents on the phone discussing insurance, discussing their child's change in stool, one woman crying on her husband's shoulder. The world seems to zoom by outside of the windows, but it is a completely different world inside this hospital.
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Here we are again, David and I, back at the hospital for the evening. Lincoln is doing great on his hydrocortisone steroid treatment. His dopamine is down to just 1.67 mcg! They've weaned him as low as he can go and now we watch his blood pressure readings for a while. Dr. DeCristafaro was just here and I said, "He looks good. He's doing well, yes?" And Dr. D nodded and then knocked on wood. LOL - none of the docs or nurses will say it out loud for fear of jinxing it! We asked Dr. D what happens after Link's five days on the steroid. He said if the cell receptors continue responding well, then great. If not, they can do a maintenance round of the steroid. Today is a good day, folks!
Tuesday, September 29, 2015
Busy Day
I can't go to work tomorrow. I'm only now finally having a moment to breathe today.
I went to work this morning. I left when I was done teaching and headed to the hospital. I got a pump and start pumping. Then I fell asleep. Pumping. And our male nurse came into the room and I woke up. Then I went to Miss Ronnie's to get the girls (it was their first day there!) and bring them home. Then to pump. Then made dinner, which we didn't get to eat because it took too long to cook, then scooped up all the girls and Dave and the girls dropped me at Back To School Night. Then back home to pump and now to bed!
I'm going to sleep in tomorrow until the girls get me up. And then maybe take a nap.
Tomorrow Link could hit two pounds. He's at 900g today, 907g = 2lbs.
Blood pressure still a major issue.
I went to work this morning. I left when I was done teaching and headed to the hospital. I got a pump and start pumping. Then I fell asleep. Pumping. And our male nurse came into the room and I woke up. Then I went to Miss Ronnie's to get the girls (it was their first day there!) and bring them home. Then to pump. Then made dinner, which we didn't get to eat because it took too long to cook, then scooped up all the girls and Dave and the girls dropped me at Back To School Night. Then back home to pump and now to bed!
I'm going to sleep in tomorrow until the girls get me up. And then maybe take a nap.
Tomorrow Link could hit two pounds. He's at 900g today, 907g = 2lbs.
Blood pressure still a major issue.
Monday, September 28, 2015
Day 25
As of right now, Lincoln is backsliding a bit. He's had residuals at a couple of his last feeds (milk that hasn't fully been digested and processed), so now they're giving him the balance of 6 cc's. In other words, when they go to feed Lincoln the nurse sucks out of his belly what is left in there to see how it looks - lately it's looking okay, but is not gone. It's a good color, it's partially digested, but only about 3 cc's are gone and 3 are left. So at his next feeds, he'll get his 3 cc's back that are partially digested, then he'll get 3 cc's more instead of 6 more. Heather says this is likely due to him needing to poop. I got to hang out while she did an "anal stim," and I joked that the best part of my job is that I never have to anally stimulate any of my students. Hopefully the stim will help Link poop, and then he'll be able to tolerate his feeds better.
He's a little more dependent on his vent today, and his dopamine dose is back up to five. Neither of those things are great. His weight is 885g, just a few shy of 907 which gets him to 2 pounds.
He's a little more dependent on his vent today, and his dopamine dose is back up to five. Neither of those things are great. His weight is 885g, just a few shy of 907 which gets him to 2 pounds.
Saturday, September 26, 2015
A Surprise Visit from Nana & PopPop
I was excited to be home this morning around 10 AM, because my parents were coming and we hadn't told the girls. Elliot had her well-visit this morning at 9. We got to tell our pediatrician all about Lincoln. He also told us that a foot thing we've been worried about with Elle is simply flat feet, and a good (expensive) pair of sneakers with arch support.
After the appointment, we came home and hung out in the family room until we heard the doorbell. I told the girls to answer the door, and there were squeals of delight that Nana & PopPop were here! Then Dave and I took off for the hospital.
Lincoln is staying on the same track. Nearly nothing has changed, which in some ways a good thing. His weight has gone to 815g today, and his feeds are now 5cc's every 3 hours. Still has the blood pressure issues going on, still going up and down on the vent.
Dave and I are actually going on a much needed date night to our favorite restaurant tonight. Since we have 24 hour babysitting right now, we're taking advantage and going out to dinner then to the hospital to see little man.
After the appointment, we came home and hung out in the family room until we heard the doorbell. I told the girls to answer the door, and there were squeals of delight that Nana & PopPop were here! Then Dave and I took off for the hospital.
Lincoln is staying on the same track. Nearly nothing has changed, which in some ways a good thing. His weight has gone to 815g today, and his feeds are now 5cc's every 3 hours. Still has the blood pressure issues going on, still going up and down on the vent.
Dave and I are actually going on a much needed date night to our favorite restaurant tonight. Since we have 24 hour babysitting right now, we're taking advantage and going out to dinner then to the hospital to see little man.
Friday, September 25, 2015
27 Weeks Gestation
Lincoln would have been 27 weeks today in my belly, so he's now referred to as a 27-weeker. He's still staying the course with everything. Nothing really new to report. Link got a smaller amount of blood today in a transfusion - he didn't need a full ?dose? - and after that was done, he was going to 4 cc's of breastmilk at each feed. He's still handling feeds well with no residuals so they're upping him a bit more. Weight is down to 795, but likely due to get ?lasics? which helps to drain extra fluids from him. Slow and steady hopefully wins this race!
Thursday, September 24, 2015
Three Weeks Old - Oh, Lincoln...
News isn't as exceptional today. Here's the good stuff - he has stayed stable and his weight is up to 810g - our first trip into the 800's. He's grown half an inch in the last three weeks as well, making him a long 13.5 inches. Also his feeds have gone up again to 3 cc's every three hours. Each day of the last three, he has gone up one cc every 3 hours, which is progress that I like. No residuals mean that his body is processing the food, and poopy diapers mean it's making it's way through his little body.
His blood pressure is still a major issue and cannot seem to be explained yet. The doctors had his cortisol levels checked and the results came back normal. Endocrine has been called to do a consult next to see if they know why he's fighting to keep a normal blood pressure. The dopamine is still at 8 mcg, but his blood pressure is falling again. Mommy is concerned.
A chest x-ray was done last night and Lincoln's lungs look "hazy." He was given medication, but his blood pressure is still dropping, so we have to wait and see. When I got here they were performing a kidney ultrasound.
At three weeks old, Daddy has still not held Lincoln. My heart breaks for that. I've held him, only twice. Just want to scoop up my boy and love on him...
His blood pressure is still a major issue and cannot seem to be explained yet. The doctors had his cortisol levels checked and the results came back normal. Endocrine has been called to do a consult next to see if they know why he's fighting to keep a normal blood pressure. The dopamine is still at 8 mcg, but his blood pressure is falling again. Mommy is concerned.
A chest x-ray was done last night and Lincoln's lungs look "hazy." He was given medication, but his blood pressure is still dropping, so we have to wait and see. When I got here they were performing a kidney ultrasound.
At three weeks old, Daddy has still not held Lincoln. My heart breaks for that. I've held him, only twice. Just want to scoop up my boy and love on him...
Wednesday, September 23, 2015
My Son is a Rockstar
Link's doing well again today. His sodium levels are dropping which are a concern, but perhaps related to his low blood pressure issues. He's on 6mcg of Dopamine to help his blood pressure, but he should really be weaning off of it. Other than that, he start at noon yesterday 1 cc of breastmilk every 3 three hours. He had no residuals and he pooped twice :) It's amazing how happy poop can make you! Today, since he's tolerating it so well, he'll be upped to 2 cc's every three hours. Dr. Pynn, the attending on with us for the next two weeks and the doctor the twins had most in their stay, said 2 cc's is still very little, but good for priming his gut for real feeds. Link also gained 60g over the last 24 hours, getting him to 790g. His O2 has been consistently 30-40% over the last 24 hours, down from 50-60%. Room air is 21%, so we're working our way to his being able to tolerate that.
When I arrived this morning, his group of doctors, NPs, and RNs were outside the next babies' room for rounds - we were next - I snuck in just in the nick of time. But then it turned out that a baby was being delivered, and suddenly the hallway just filled with six or eight people was empty, but their rolling desks with binders, papers, laptops and calculators were there, deserted. About 20 minutes later everyone was back. Heather had Lincoln's bed open because she was prepping to put a new IV in. He needed to add phosphate into fluids, but since he's on dopa they can't do a swing line. While she was prepping him and then again after the IV was in, I got some good face time with my little man. We were hanging and chatting (okay, I was chatting, he was looking at me - good enough!). That time with him today will likely be my highlight for today.
Daddy went up to the hospital this evening to see Lincoln. He also got some good face time while Lincoln's dipe was being changed. Dopa is up to 8mcgs, and now Mommy is getting quite nervous about his blood pressure. Doctors are trying to get to the bottom of why it is so low and needing so much dopa to keep it up.
Also, the highlight of my day may actually have been all 3 girls being really well-behaved and good listeners while they got their hair cut one at a time. The woman cutting their hair was impressed by their behavior! Mommy enjoys good listeners and a good compliment.
When I arrived this morning, his group of doctors, NPs, and RNs were outside the next babies' room for rounds - we were next - I snuck in just in the nick of time. But then it turned out that a baby was being delivered, and suddenly the hallway just filled with six or eight people was empty, but their rolling desks with binders, papers, laptops and calculators were there, deserted. About 20 minutes later everyone was back. Heather had Lincoln's bed open because she was prepping to put a new IV in. He needed to add phosphate into fluids, but since he's on dopa they can't do a swing line. While she was prepping him and then again after the IV was in, I got some good face time with my little man. We were hanging and chatting (okay, I was chatting, he was looking at me - good enough!). That time with him today will likely be my highlight for today.
Daddy went up to the hospital this evening to see Lincoln. He also got some good face time while Lincoln's dipe was being changed. Dopa is up to 8mcgs, and now Mommy is getting quite nervous about his blood pressure. Doctors are trying to get to the bottom of why it is so low and needing so much dopa to keep it up.
Also, the highlight of my day may actually have been all 3 girls being really well-behaved and good listeners while they got their hair cut one at a time. The woman cutting their hair was impressed by their behavior! Mommy enjoys good listeners and a good compliment.
Tuesday, September 22, 2015
19 Days Old - Day 20
The NICU counts day of birth to be day 1 since it's their first day of life. So where we say Lincoln is 19 days old, the NICU staff calls him 20 days. Day 20 is looking good for Link. He dropped a bit of weight again at 730g, but we know that is related to being bloated, urine output, etc. His dopamine dose is up to five after easing yesterday down to three, then up to four. But his oxygen is down to 30-40% from 50-60% yesterday. He's comfy hanging out on his belly right now, easily his preferred method of relaxation.
I dropped off Elle's birth certificate and arranged "babysitter busing" for when I work and she needs to go to our Miss Ronnie's house. The stop by district office on the way to the hospital was nice - I was greeted by lots of concerned and caring people who wanted to know how little Lincoln was doing. It also wrapped up a couple more things I needed to scratch off the to-do list.
And as far as the twins: This morning Charlie was at her worst. She had been up in the middle of the night and girl needs her sleep! She was throwing tantrums from the moment she woke up. Char was particularly mad at me for giving her an orange cup when blue is her favorite color. Addie had been given a pink cup, which is HER favorite color, and she sweetly offered it to and fed Charlie from it while she took the orange cup for herself. Addie, for all her faults (like exhausting her parents with her endless wants and whining), is such a little mommy to her sister
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I dropped off Elle's birth certificate and arranged "babysitter busing" for when I work and she needs to go to our Miss Ronnie's house. The stop by district office on the way to the hospital was nice - I was greeted by lots of concerned and caring people who wanted to know how little Lincoln was doing. It also wrapped up a couple more things I needed to scratch off the to-do list.
And as far as the twins: This morning Charlie was at her worst. She had been up in the middle of the night and girl needs her sleep! She was throwing tantrums from the moment she woke up. Char was particularly mad at me for giving her an orange cup when blue is her favorite color. Addie had been given a pink cup, which is HER favorite color, and she sweetly offered it to and fed Charlie from it while she took the orange cup for herself. Addie, for all her faults (like exhausting her parents with her endless wants and whining), is such a little mommy to her sister
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Monday, September 21, 2015
Balancing Act
Lincoln's doctors and nurses often refer to the balancing act - if we lower the dopamine, he can take feeds, but then his blood pressure is at risk. If we give him something to fix his kidneys, it could put a strain on his heart. Everything seems to balance on a thread as thin as a hair.
I'm feeling the same way. I am healthy enough and physically fine to be back at work. Being at work could be good for me because it may take my mind off things and save my sick time for when Link comes home. But I'm so distracted at work thinking of how he's doing and feeling extreme guilt for not being there, particularly during rounds. I seem to have some fantasy in my head where my attendance at rounds affects his treatment. If I'm back at work I miss morning rounds, spend two (just two) hours at the hospital with him after work, and don't return at night because my alarm is set for 5AM for work days. When I'm at work, I think I do a pretty good job of plowing through, but then all my energy is gone for the much longer portion of the day when I'm a Mommy of four. I didn't go to work today, and I still feel like I am half-assing everything I'm doing. I just literally cannot decide whether it is beneficial for me to be at work. Am I doing my students a service or dis-service by being there? I guess I'll keep taking it day by day until I figure that out.
I did manage to get Elle signed up for religion classes today. She will get her first communion this year, one year behind her classmates, as Mommy messed up and missed a year. She's required to go to church 12 times - something Mommy may just enjoy doing with her. We've gone to our new church one time, right after Lincoln was born. Elliot was excited that the priest was talking about welcoming people into the church. I had a hard time as he talked about praying for pregnant women and women who have lost their babies. I'm neither of those things, yet I still feel incredibly raw.
I'm feeling the same way. I am healthy enough and physically fine to be back at work. Being at work could be good for me because it may take my mind off things and save my sick time for when Link comes home. But I'm so distracted at work thinking of how he's doing and feeling extreme guilt for not being there, particularly during rounds. I seem to have some fantasy in my head where my attendance at rounds affects his treatment. If I'm back at work I miss morning rounds, spend two (just two) hours at the hospital with him after work, and don't return at night because my alarm is set for 5AM for work days. When I'm at work, I think I do a pretty good job of plowing through, but then all my energy is gone for the much longer portion of the day when I'm a Mommy of four. I didn't go to work today, and I still feel like I am half-assing everything I'm doing. I just literally cannot decide whether it is beneficial for me to be at work. Am I doing my students a service or dis-service by being there? I guess I'll keep taking it day by day until I figure that out.
I did manage to get Elle signed up for religion classes today. She will get her first communion this year, one year behind her classmates, as Mommy messed up and missed a year. She's required to go to church 12 times - something Mommy may just enjoy doing with her. We've gone to our new church one time, right after Lincoln was born. Elliot was excited that the priest was talking about welcoming people into the church. I had a hard time as he talked about praying for pregnant women and women who have lost their babies. I'm neither of those things, yet I still feel incredibly raw.
18 Days Old
I can hardly believe we've been at this for 18 days. Little Man is doing well today. His weight today is 750g, which is what his birth weight was. He's been all over the map the last few days with his weight, as kidney issues are causing bloating and affecting his urine output. If you could just see him move and groove and squirm all the time, you'd see that he looks good for a 26-weeker. Hopefully the kidney and blood pressure issues we're seeing get better so he can go back to feeds again. He's still getting colostrum care - rubbing the inside of his mouth with a swab of colostrum. But Mommy & Daddy want him eating, because the nutrition in the colostrum and breastmilk will do wonders for him.
Our nurse today, Heather, realized that whoever hung his dopamine line did so with a line with a filter. She is now changing it out for a line without a filter. She said the filter can catch molecules of the medication and keep it from getting to him. This could be the reason that 1 unit was working a few days ago and 7.5 doesn't seem to be working as well as it should today. Lincoln's blood pressure is okay, but on the very low end of okay. They will monitor closely with blood pressure readings every 30 minutes to be sure it is making a difference.
Our nurse today, Heather, realized that whoever hung his dopamine line did so with a line with a filter. She is now changing it out for a line without a filter. She said the filter can catch molecules of the medication and keep it from getting to him. This could be the reason that 1 unit was working a few days ago and 7.5 doesn't seem to be working as well as it should today. Lincoln's blood pressure is okay, but on the very low end of okay. They will monitor closely with blood pressure readings every 30 minutes to be sure it is making a difference.
Sunday, September 20, 2015
I Was Robbed
Today I am feeling a lot of anger. I was robbed. My pregnancy with Lincoln was my last. I knew it was my last, David and I feel our family is complete. My pregnancy was going well. Then something f*cked that up, and my baby came at 23 weeks, 6 days. And now I'm not pregnant. I miss feeling him move and kick. And I miss being pregnant. I even suck at being pregnant - I have gestational diabetes that diet alone can't control and I have to be on insulin. I have to check my blood sugar four times a day and shoot insulin four times a day (though I was only up to 2 times so far this pregnancy). I shouldn't want to be pregnant. But I do.
Yesterday I was pumping gas and there was a pregnant woman a couple of pumps over. I was angry with her for getting to be pregnant and I don't. Dave and I went to a consignment sale on Thursday and it was "special entrance" for women in their third trimester. I had to listen to women talking about how cute this outfit was and what do we still need for the nursery, while what I thought was if I buy Lincoln a bunch of cute clothes with money we don't really have to spare and then he doesn't make it, what do I do with all of these clothes? So we bought four or five little outfits.
I'm supposed to be pregnant and my baby is supposed to be growing and thriving. Instead, I'm not pregnant and my baby is fighting every day for his life. He's stable and doing pretty well today. I'm not.
Yesterday I was pumping gas and there was a pregnant woman a couple of pumps over. I was angry with her for getting to be pregnant and I don't. Dave and I went to a consignment sale on Thursday and it was "special entrance" for women in their third trimester. I had to listen to women talking about how cute this outfit was and what do we still need for the nursery, while what I thought was if I buy Lincoln a bunch of cute clothes with money we don't really have to spare and then he doesn't make it, what do I do with all of these clothes? So we bought four or five little outfits.
I'm supposed to be pregnant and my baby is supposed to be growing and thriving. Instead, I'm not pregnant and my baby is fighting every day for his life. He's stable and doing pretty well today. I'm not.
Saturday, September 19, 2015
Why I Hate the Number Eleven
Ask anyone who knows me well, I was certain Lincoln would be born on November 11. The number eleven kept showing up in my life - mainly when I looked at the clock. There were days I'd look at the clock at 7:11 then 8:11 then 9:11 then 10:11 then 11:11. I figured this was a sign from my grandmother again. That number was going to play into Lincoln's birthday for sure. 11/11 would be a little earlier than I would have liked him to show up, but far better than his actual birthday.
Link was born on 9/3 at 7:53 PM. Weighing 1 lb, 10 oz. 13 inches long.
I still see the number 11 everywhere. What does it mean?
In other news, Link dropped quite a bit of weight today. It could be anything - likely his urine output. And urine output is a good thing. His weight went from 769g to 685g today. When I asked his nurse, we'll call her CA, she said, "He's just so small. When babies get bigger, they weigh more." Profound. Haha!
Other than that, he looks good. Moving around a like a champ. That's my boy.
Link was born on 9/3 at 7:53 PM. Weighing 1 lb, 10 oz. 13 inches long.
I still see the number 11 everywhere. What does it mean?
In other news, Link dropped quite a bit of weight today. It could be anything - likely his urine output. And urine output is a good thing. His weight went from 769g to 685g today. When I asked his nurse, we'll call her CA, she said, "He's just so small. When babies get bigger, they weigh more." Profound. Haha!
Other than that, he looks good. Moving around a like a champ. That's my boy.
Friday, September 18, 2015
"Our Little Miracle Boy is Having a Great Day"
I headed into the NICU around 1PM. I dropped my stuff in Lincoln's room, and headed off to the pumping room to find a pump to take back. On my way to the pumping room (on the opposite end of the NICU from Link's pod), I saw Dr. Eche sitting at the desk. I stopped to say hello, and he greeted me with, "Our little miracle boy is having a great day!" Now that's what I call a greeting!
Lincoln's infection had Dr. Eche concerned that the PDA would re-open, so he ordered another echo. Today's echo showed that the PDA had remained closed and Link's heart looked good. They also discovered that yesterday's pneumothorax (a pocket of air outside of the lungs, perhaps a small tear in his lung had leaked some air out) was gone.
Lincoln is on two antibiotics to get rid of his infection. He apparently does not respond well enough to a two-day antibiotic, so he's on a seven-day antibiotic treatment. That's fine, so long as he keeps getting healthier and growing to be big and strong.
It's amazing to me how down and scared and worried we were yesterday, and then today is such a great day. It's so trite to say that the NICU experience is a roller-coaster, but I can't think of another way to describe it. There is a little hesitation in the celebration, though, as I know tomorrow can be different. We'll keep up our "cautious optimism" for now.
*Someone at work today was telling me about their experience with their preemie today. I hear "other preemie" stories all the time now. This one ended differently, however, and tragically. This person's child was born at 25 weeks and after 13 weeks in the NICU, the baby didn't survive, nor did their marriage. It definitely adds to the "cautious" part of cautious optimism. I know there are dozens of success stories, but it is quite a reminder that no matter how confident and excited we get, the possibility is still there. I just keep praying for my baby boy and hope our story is success.
Lincoln's infection had Dr. Eche concerned that the PDA would re-open, so he ordered another echo. Today's echo showed that the PDA had remained closed and Link's heart looked good. They also discovered that yesterday's pneumothorax (a pocket of air outside of the lungs, perhaps a small tear in his lung had leaked some air out) was gone.
Lincoln is on two antibiotics to get rid of his infection. He apparently does not respond well enough to a two-day antibiotic, so he's on a seven-day antibiotic treatment. That's fine, so long as he keeps getting healthier and growing to be big and strong.
It's amazing to me how down and scared and worried we were yesterday, and then today is such a great day. It's so trite to say that the NICU experience is a roller-coaster, but I can't think of another way to describe it. There is a little hesitation in the celebration, though, as I know tomorrow can be different. We'll keep up our "cautious optimism" for now.
*Someone at work today was telling me about their experience with their preemie today. I hear "other preemie" stories all the time now. This one ended differently, however, and tragically. This person's child was born at 25 weeks and after 13 weeks in the NICU, the baby didn't survive, nor did their marriage. It definitely adds to the "cautious" part of cautious optimism. I know there are dozens of success stories, but it is quite a reminder that no matter how confident and excited we get, the possibility is still there. I just keep praying for my baby boy and hope our story is success.
Thursday, September 17, 2015
Link's Future
David and I have been getting little tidbits about Lincoln all day. Mostly little things that just seem to be adding up and weighing us down. Tonight we had tickets to attend a consignment sale pre-sale. We knew we needed a new high chair as I had sold our other two. We wanted to buy him some cute little outfits and take a look around at what else they had.
We were discussing Lincoln in the car on the way there, and both getting quite upset about all the little things going on today - infection, air outside his lungs, low blood pressure, etc. Everything adding up. And as we went in to look at clothes, I wasn't feeling it. Dave was half-hearted about it, too. I said, "Is it bad that I'm scared to buy him things, in case..." And Dave understood and agreed. I don't want to have to think that way. I'm his Mommy. I want to protect him. *sigh* Now I'm back at the hospital because I want to be with him. Screw sleep - I'll nap on Saturday.
We were discussing Lincoln in the car on the way there, and both getting quite upset about all the little things going on today - infection, air outside his lungs, low blood pressure, etc. Everything adding up. And as we went in to look at clothes, I wasn't feeling it. Dave was half-hearted about it, too. I said, "Is it bad that I'm scared to buy him things, in case..." And Dave understood and agreed. I don't want to have to think that way. I'm his Mommy. I want to protect him. *sigh* Now I'm back at the hospital because I want to be with him. Screw sleep - I'll nap on Saturday.
I'm no Superman!
(Title is a Scrubs reference for Dave)
I went back to work today.
We closed on our house yesterday, we now own only one home again. It's a good thing - mortgage prices where we live are insane. And the taxes are worse. So at 4:00 Dave and I headed off to our lawyer's office for the closing. It went well. Then we went to Panera to pick up dinner (thanks to our friends who have sent restaurant cards, they've been very helpful!) and headed home to eat quickly with the girls and Grampy. As soon as we swallowed our last bite, we went to Back-To-School night at Elliot's school. It was nice being a parent instead of a teacher there. We were given lots of hugs and well-wishes from my former colleagues.
After being at Elle's school, Dave dropped me at home and went to see Lincoln. We like to go together for evening rounds and speak to the doctors. But I begged out because I went back to work today. That means an alarm goes off at 5 AM. Five AM. Five. A. M. I couldn't stay out until 11PM for rounds, because of 5AM. Then I realized that I would be missing morning rounds which seems to be where we really get most of our info on Lincoln. But they're from 9-11AM (evening rounds are 9-11PM). I work from 6-12:30, so no morning rounds. And no evening rounds. No rounds. We can call, ask our doctors while we're here, ask our nurse anytime. But at rounds, everyone is sharing all their info about him, questions are asked, treatments are planned.
Also, my breastpump hasn't arrived. I am renting a monstrosity of a pump, a hospital grade, with no carrying case, and there is no way I'm toting it back and forth to work. I get one free from insurance, but hadn't ordered yet as Lincoln was not supposed to have arrived yet. So I'm now at the hospital pumping, but it's been over 7 hours. And I'm sore.
Also, during zero period, my first class of the day, my phone rang. Actually it rang at 6:30 and I missed it. Then it rang during my class and I missed it again. Then Dave tried to call three times. I still couldn't answer but assumed something was wrong. Sure enough, the hospital had called. That's how to stop a Mama's heartbeat. The hospital, where your sick baby is and you are not, called. Lincoln has developed an infection. His urine output dropped yesterday afternoon and stopped overnight. His white cell count was low. His hematocrit was low. They are starting antibiotics. This is the first time they have called us.
Great, everyone at work is asking me how he is. It's all I can think about. I'm finally here at 1 PM, and he's recovering well - once he peed, he peed 34 mg(?), instead of 3-6 like his normal output. The flood gates had opened. He had to go on dopamine again for his blood pressure tanking, but an hour later he was taken off because it bounced right back up. His coloring is good, he's getting a blood transfusion, he's stable again.
Last night I posted on fb that I was returning to work today. My friend Kelly, a psychologist, texted me to remind me that no one expects me to be SuperWoman. I forget that sometimes. I know now, after a year in therapy, that I am an OCD perfectionist. I'm really battling with whether or not to work right now. I miss my students, and today I was able to jump right in and get them going. It was like I hadn't been gone a day. But there is a lot of catch-up to do. And I use A LOT of energy when I teach, I come home exhausted. Now, sitting in Link's room, I just want to sleep. My students are my students for three years, so I'm really invested in them. We have a great relationship by year three. I don't really want to leave them. We're right in the meaty part of Drama Club and that's MY Drama Club now. It's hard not to be there for that.
And I'm worried about money. Who isn't? I was supposed to work for most of 2015. Not stop in the beginning of September! And with a new house, we can't predict bills yet. And Dave changed his pay option so his checks are smaller now, but come year-round. But now one check does not even cover the mortgage. Ugh.
I should be with my son, but I can't do anything for him so I should be teaching where I can make a difference and make some money. But while I am work I'm so worried about him that I'm not giving my students 100% of me. And this doesn't even begin thoughts of going home to my three healthy girls who want Mommy's attention, too. I'm no Superman, but I wish I had more to give everyone. Including myself.
*Dr. Eche says we have to be careful with infection, especially because it can reopen the PDA. There is a small pocket of air in each side of his chest that is being watched, too.
I went back to work today.
We closed on our house yesterday, we now own only one home again. It's a good thing - mortgage prices where we live are insane. And the taxes are worse. So at 4:00 Dave and I headed off to our lawyer's office for the closing. It went well. Then we went to Panera to pick up dinner (thanks to our friends who have sent restaurant cards, they've been very helpful!) and headed home to eat quickly with the girls and Grampy. As soon as we swallowed our last bite, we went to Back-To-School night at Elliot's school. It was nice being a parent instead of a teacher there. We were given lots of hugs and well-wishes from my former colleagues.
After being at Elle's school, Dave dropped me at home and went to see Lincoln. We like to go together for evening rounds and speak to the doctors. But I begged out because I went back to work today. That means an alarm goes off at 5 AM. Five AM. Five. A. M. I couldn't stay out until 11PM for rounds, because of 5AM. Then I realized that I would be missing morning rounds which seems to be where we really get most of our info on Lincoln. But they're from 9-11AM (evening rounds are 9-11PM). I work from 6-12:30, so no morning rounds. And no evening rounds. No rounds. We can call, ask our doctors while we're here, ask our nurse anytime. But at rounds, everyone is sharing all their info about him, questions are asked, treatments are planned.
Also, my breastpump hasn't arrived. I am renting a monstrosity of a pump, a hospital grade, with no carrying case, and there is no way I'm toting it back and forth to work. I get one free from insurance, but hadn't ordered yet as Lincoln was not supposed to have arrived yet. So I'm now at the hospital pumping, but it's been over 7 hours. And I'm sore.
Also, during zero period, my first class of the day, my phone rang. Actually it rang at 6:30 and I missed it. Then it rang during my class and I missed it again. Then Dave tried to call three times. I still couldn't answer but assumed something was wrong. Sure enough, the hospital had called. That's how to stop a Mama's heartbeat. The hospital, where your sick baby is and you are not, called. Lincoln has developed an infection. His urine output dropped yesterday afternoon and stopped overnight. His white cell count was low. His hematocrit was low. They are starting antibiotics. This is the first time they have called us.
Great, everyone at work is asking me how he is. It's all I can think about. I'm finally here at 1 PM, and he's recovering well - once he peed, he peed 34 mg(?), instead of 3-6 like his normal output. The flood gates had opened. He had to go on dopamine again for his blood pressure tanking, but an hour later he was taken off because it bounced right back up. His coloring is good, he's getting a blood transfusion, he's stable again.
Last night I posted on fb that I was returning to work today. My friend Kelly, a psychologist, texted me to remind me that no one expects me to be SuperWoman. I forget that sometimes. I know now, after a year in therapy, that I am an OCD perfectionist. I'm really battling with whether or not to work right now. I miss my students, and today I was able to jump right in and get them going. It was like I hadn't been gone a day. But there is a lot of catch-up to do. And I use A LOT of energy when I teach, I come home exhausted. Now, sitting in Link's room, I just want to sleep. My students are my students for three years, so I'm really invested in them. We have a great relationship by year three. I don't really want to leave them. We're right in the meaty part of Drama Club and that's MY Drama Club now. It's hard not to be there for that.
And I'm worried about money. Who isn't? I was supposed to work for most of 2015. Not stop in the beginning of September! And with a new house, we can't predict bills yet. And Dave changed his pay option so his checks are smaller now, but come year-round. But now one check does not even cover the mortgage. Ugh.
I should be with my son, but I can't do anything for him so I should be teaching where I can make a difference and make some money. But while I am work I'm so worried about him that I'm not giving my students 100% of me. And this doesn't even begin thoughts of going home to my three healthy girls who want Mommy's attention, too. I'm no Superman, but I wish I had more to give everyone. Including myself.
*Dr. Eche says we have to be careful with infection, especially because it can reopen the PDA. There is a small pocket of air in each side of his chest that is being watched, too.
Wednesday, September 16, 2015
One Step Forward, One-Half Step Back
Yesterday was thrilling. Lincoln is rocking these last couple of days. He began feeds yesterday, a little Mama milk to get him going. Unfortunately, he's having a bit of a rough go with it. Granted when your first meal isn't until you are 12 days old, I guess it's a shock to your system. He's gotten .5mL which is 1/10 of a teaspoon - about 3 or 4 drops of milk. He started at noon yesterday, so noon, 4 PM, 8 PM, 12 AM, 4 AM, and then at 8 AM they realized he's not digesting it well enough. He has "residuals" in his line. Each time they feed him, the nurses suck his belly dry through his feeding tube to see how much he has digested. Then, they send that back to his belly to continue digesting and put in his new food as well. Our nurse today, Jessie, said he had residuals and they are dark in color, so feeds have been postponed.
He is, however, pooping. He's getting rid of the meconium - the black tar that they have in their little baby intestines while in Mommy's belly. The first few days of poop are meconium - hard to clean up from what I understand. All four of my babies have been in the NICU during the meconium stage so I've never had to change those diapers! Jessie also said his belly is soft, which means there shouldn't be painful gas building up in his belly.
I anticipate a lot of poop and putt jokes (we call farts 'putts' in our house) as we now have a son. I'm embarrassed to say that Miss Adeline will be the one teaching Link how funny potty humor jokes are! LOL!
Link is up to 720g this morning from 650g, so big growth since he started feeds.
He is, however, pooping. He's getting rid of the meconium - the black tar that they have in their little baby intestines while in Mommy's belly. The first few days of poop are meconium - hard to clean up from what I understand. All four of my babies have been in the NICU during the meconium stage so I've never had to change those diapers! Jessie also said his belly is soft, which means there shouldn't be painful gas building up in his belly.
I anticipate a lot of poop and putt jokes (we call farts 'putts' in our house) as we now have a son. I'm embarrassed to say that Miss Adeline will be the one teaching Link how funny potty humor jokes are! LOL!
Link is up to 720g this morning from 650g, so big growth since he started feeds.
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