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!

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.

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!

"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.

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.

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. 

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.

"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!!!

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.

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."

Vent Steps 10/29/2015

Lincoln is back 1485g. That didn't take long at all. That's 3 lbs, 4.5 oz.  Today Dr. Mintzer has switched Link's vent from its original settings to one where in between the normal breaths it gives him, it will support him breathing some on his own. It will not tell the nurses and doctors if he will do well off the vent, but it will tell them if he won't do well. They will then spread the breaths that the machine gives out little by little so Link is more independent.

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!