Today at Noon, Lincoln will get his first shot of Mommy's milk! David and I couldn't be happier, as we know the nutritional and health benefits that this addition can make. He will be getting milk from his third day of life, though he is 12 days old. Each time I pump, the bottles are labeled with the date and time so that Link gets the milk in the order I made it. The female body is brilliant in that it makes milk for the baby's needs. The first week of life it makes colostrum, which is a gold colored milk very high in fat and calories that preps his little tiny tummy for milk. Lincoln will be given all colostrum until it is gone. After that, my body says, 'okay, he's ready for regular Mommy milk now,' and it adapts my milk for his needs. Because he is so young and a preemie, my body will make milk catered to that - probably high fat, high caloric milk. In fact, once pumping further on in the pregnancy, when it is refrigerated, the milk separates into blue-ish watery milk and fat. When that happens, you have to shake or stir the milk to mix it back up to give to him. My milk now (again, he's 12 days old and that should have probably started by now) is so fatty that there is no separation. I've had offers by two fellow pumping Moms (Aunt Lisa and a dear friend Kelly (not nurse Kelly)) have offered milk. Had I needed it, I would have absolutely taken it. But I am a milk machine - a cow, if you will, and happy to be it. But their milk would not have been specialized for Lincoln's needs. Glad my baby boy gets his Mommy's milk.
His nurse Joanne (who has requested Link every time she's been in and gotten him - she's very sweet and I can tell how much she loves him by how excited she is by his progress) just came in to give him caffeine. We joked that we both could use a cup of coffee but Link literally gets his in an IV. The caffeine does what you would expect - increases his heart rate - to give him an extra boost. Starbucks, anyone? (And just so I remember when I return and read this someday - the lines at Starbucks here are amazingly long! I've only partaken once so in 12 days (which I consider impressive) because I've mostly gotten my cup o' Joe in the Ronald McDonald room.)
At IHI Rounds, which I made it in just in time for today, everything sounded very positive for the moment. IHI Rounds are the rounds done by doctors and nurse practitioners (NPs) from each specialty. Dr. Eche is on Lincoln's case for another week, and he said his goal is to grow this baby. When all was said and done as is done each time, they asked if I had any questions. I said, 'Not really, but do we know how and/or why the PDA closed on it's own?" We know the indocin didn't work and maybe is the cause of the kidney issues, so what did it? Dr. Eche said that the PDA is like a faucet that has a leaky hole in the side. By limiting Lincoln's fluid intake, they starved some of his blood from rushing through that hole. That it in itself could have made the PDA start to shrink. Then the dopamine he was on to raise his blood pressure was causing the blood to flow faster through his heart and pump it down to where he needed it in his kidneys, gut, and lower extremities. That would keep more blood from being able to pass through the PDA. With both of things taking place at the same time, the stress on the PDA was lessened, and it was able to close. Dr. Eche said, "That is what I told you I was hopeful would happen." But when he told us that, it was with the reservation that they tell us everything. We had it in our heads that we were going for surgery, so we didn't anticipate that this could actually happen for our tiny boy.
While Daddy & I are at the hospital, the girls are playing at Aunt Laurie and Uncle Mark's today. They love their cousins Sara, Stephen, and Emma, and rarely see them other than holidays, so this is a real treat!
Tuesday, September 15, 2015
Monday, September 14, 2015
What?! Wait?! Really?! YAY!!!
So we got the results of the echocardiogram. Dave was on his way to the hospital to visit our little man as well as find out the results of the morning's test. But he was stopping at a couple of stores first. I was pumping and the phone was sitting next to me. I've memorized the NICU number, so I went ahead and called. The echo showed that Lincoln's PDA had healed!!! NO SURGERY NEEDED!! I cannot even believe the wave of relief that washed over me. All the concern about where to stay while he was there so I could be by his side but still get a decent night sleep, about how I could get my Mom here in time to be with the girls so I know they'd have someone 24/7, about the closing on our house in two days, about missing Elliot's Back-to-School night, and mostly about my baby who was less than two weeks old and under a pound and a half and how we would do in surgery.
We were reminded that this does not mean we don't have to worry about the PDA anymore, it could still reopen. It doesn't mean we're free and clear and Link's just all better. The battle is still long and still uphill. But this is one MAJOR victory!
I bet I sleep better tonight!
We were reminded that this does not mean we don't have to worry about the PDA anymore, it could still reopen. It doesn't mean we're free and clear and Link's just all better. The battle is still long and still uphill. But this is one MAJOR victory!
I bet I sleep better tonight!
Waiting...
Today Lincoln will get a head sono and an echo. His blood results in addition to the results of these two tests will tell us if/when Lincoln's surgery will be taking place. Sitting around and waiting to hear is difficult.
Last night while lying in bed, I started to think of my little guy being moved to a different hospital. One where we don't know ANYONE. Here at SBUH, we know doctors, nurses, security guards, everyone, it seems. Whether we're off to Cohen's, Mt. Sinai, NYU, or Columbia, we don't know anyone. No one has an extra vested interest in our son. I know he will still get incredible care. But when your doctors and nurses know they'll be seeing you for months or even that you live in their neighborhood, I think there is an extra care there. And I picture him being moved into an ambulance. And heading into a new hospital. And having surgery! Surgery. He's 10 days old. He's one pound. I'm having trouble with this. I know it's what is best, so we're obviously going for it. But yikes.
I came into the hospital this morning with Brian, our across the street neighbor. Brian and Sue have been so good to us. Until I can drive, Brian has been taking me to the hospital since he works here anyway. And when I arrived, Kelly had made two more blankets for Lincoln. She had made one a year ago for another friend - a boy blankie and a girl blankie - the friends needed a girl blankie, so the boy one had been living here awhile. It has Batman comic sayings on it like "Pow! Super! Wow!" We get compliments on it all the time. Now, Kelly had found Superman material and animals dressed as superheroes and made more blankets for Lincoln. SO CUTE!
Kelly went to suction him, he builds up mucus and saliva from having a tube down his throat. As she did, his jet vent began alarming. She listened to his heart/lungs, and she couldn't hear the puffs that the jet gives him. She asked another nurse to call respiratory, and within 30 seconds, there were 6 people in the room solving his issue. Luckily, his heart rate was fine and they upped his oxygen to 100 as a precaution. Within two minutes, everything was calm again and working as it should. Because his numbers were fine, I didn't panic too much, and it was incredible to watch this team work together to very quickly resolve the issue.
Will post more after rounds when I know more what the track for treatment is.
*Okay, Dr. Eche says if the PDA seems to be flowing with restriction into his lungs, we will wait and give him more time. If it is wide open (unrestricted), ligation it is. The echo was just completed. We wait now for the results of that to come through.
Also weight is down today - 680 to 665g.
Last night while lying in bed, I started to think of my little guy being moved to a different hospital. One where we don't know ANYONE. Here at SBUH, we know doctors, nurses, security guards, everyone, it seems. Whether we're off to Cohen's, Mt. Sinai, NYU, or Columbia, we don't know anyone. No one has an extra vested interest in our son. I know he will still get incredible care. But when your doctors and nurses know they'll be seeing you for months or even that you live in their neighborhood, I think there is an extra care there. And I picture him being moved into an ambulance. And heading into a new hospital. And having surgery! Surgery. He's 10 days old. He's one pound. I'm having trouble with this. I know it's what is best, so we're obviously going for it. But yikes.
I came into the hospital this morning with Brian, our across the street neighbor. Brian and Sue have been so good to us. Until I can drive, Brian has been taking me to the hospital since he works here anyway. And when I arrived, Kelly had made two more blankets for Lincoln. She had made one a year ago for another friend - a boy blankie and a girl blankie - the friends needed a girl blankie, so the boy one had been living here awhile. It has Batman comic sayings on it like "Pow! Super! Wow!" We get compliments on it all the time. Now, Kelly had found Superman material and animals dressed as superheroes and made more blankets for Lincoln. SO CUTE!
Kelly went to suction him, he builds up mucus and saliva from having a tube down his throat. As she did, his jet vent began alarming. She listened to his heart/lungs, and she couldn't hear the puffs that the jet gives him. She asked another nurse to call respiratory, and within 30 seconds, there were 6 people in the room solving his issue. Luckily, his heart rate was fine and they upped his oxygen to 100 as a precaution. Within two minutes, everything was calm again and working as it should. Because his numbers were fine, I didn't panic too much, and it was incredible to watch this team work together to very quickly resolve the issue.
Will post more after rounds when I know more what the track for treatment is.
*Okay, Dr. Eche says if the PDA seems to be flowing with restriction into his lungs, we will wait and give him more time. If it is wide open (unrestricted), ligation it is. The echo was just completed. We wait now for the results of that to come through.
Also weight is down today - 680 to 665g.
Sunday, September 13, 2015
Keeping Up with the...Jaks
One of the many hard parts of having Lincoln live in the hospital while the rest of the family is home is keeping up at home. When David and I have been home for the last week, we have concentrated on the girls and spending quality time with them. Things like laundry, dishes, unpacking, cleaning become second priority.
This morning, though, I busted ass. I rocked it out. I'm pleased with how much I got done. Dishes, laundry, unpacking boxes, taping the twins' room with the hope of painting it soon, pumping (always pumping!), putting away the twins' summer clothes, sorting all the "girl" diapers from our stash to sell. David, too, was able to get a little done - practicing cello with Elle, unpacking and moving boxes from the garage to the basement. One of these days we'll be able to park our cars in the garage I insisted upon having.
People have dropped off meals, muffins, groceries, or sent gift cards - if you're reading this, and you've helped in any way, we cannot thank you enough. There is so very much to juggle between home, hospital, work, etc. that every small assist is a major major assist. Thank you!!!
This morning, though, I busted ass. I rocked it out. I'm pleased with how much I got done. Dishes, laundry, unpacking boxes, taping the twins' room with the hope of painting it soon, pumping (always pumping!), putting away the twins' summer clothes, sorting all the "girl" diapers from our stash to sell. David, too, was able to get a little done - practicing cello with Elle, unpacking and moving boxes from the garage to the basement. One of these days we'll be able to park our cars in the garage I insisted upon having.
People have dropped off meals, muffins, groceries, or sent gift cards - if you're reading this, and you've helped in any way, we cannot thank you enough. There is so very much to juggle between home, hospital, work, etc. that every small assist is a major major assist. Thank you!!!
The Month Prior
We closed on August 6th on our
new home. It's beautiful and huge upgrade from our old house. Our
old house was wonderful, but we were quickly outgrowing it. On August 9,
we left for vacation in Williamsburg, VA. We returned home on August 17,
but had less than a week until Dave returned to camp and then back to school on
August 31.
I began work on September 1 with Superintendent's Conference Day. It was great to see my teacher friends again. I was feeling great and having fun socializing. I left a little for a doctor appointment at my endocrinologist. They were adjusting my medication - I had been taking 20 units of NPH insulin at bedtime, and we upped that to 30 with 5 of fast-acting before breakfast. My morning numbers have given me trouble with every pregnancy.
The following day the alarm went off at 5 AM. I know, right? In the old house I would put my clothes out on the couch in the living room the night before so that when I woke up, I could sneak out of the room and David could sleep without interruption. That's not to say that I didn't frequently sneak back in the room to get jewelry, shoes, or something else I had forgotten to lay out the night before.
In the new house it's different. We have a en suite bathroom, so I put my clothes in there. I showered and got dressed. I went downstairs, tested my number, made my two eggs with one piece of toast with margarine and cup of coffee with a splash of milk. That was my breakfast every day now, as I knew my glucose numbers were controlled with that breakfast. I had to go back upstairs to do my hair. But then I came back downstairs and relaxed with my coffee and morning news. Then I went back upstairs for shoes and jewelry. This new routine would take me a bit of time perfect so David could sleep without me coming in and out, over and over.
I left for work and stopped at Dunkin' Donuts. I picked up munchkins for my eighth graders - they have to be at school at 6:45 voluntarily - I spoil them the first and last day with donuts. It was rather challenging to walk into DD and not get coffee or a muffin or a breakfast sandwich or a donut or... And I was even good once I got to work - I didn't have even one munchkin when my kids were eating them - I had a baby to protect and I was doing well on my diabetic diet. I knew they would have lots of questions, so on my chalkboard I wrote, "My name is Mrs. Jaklitsch, you can call me Mrs. Jak. His name is Mr Heller (my co-teacher), you can call him Mr. Heller. Yes, I am going to have a baby. No, you may not babysit." I didn't want to announce to each class that I was having a baby. And I didn't want my students trying to decide if I had eaten too many hamburgers over the summer or if perhaps I was pregnant again.
The kids wanted to know everything. When is the baby coming? How long will you be here? Who will our sub be? Is it a boy or a girl? What about the musical? I answered the questions as they came in as politically as I could. They baby was due Christmas Day, but we were expecting more like Thanksgiving. Your sub will likely be Mr. Heller, my new co-teacher. It's a boy this time - yes, after 3 girls we're excited to have a boy. I will be here for the musical, no worries.
The rest of my classes continued along the same track. I answered questions, talked about rules, we sang, I joked, they giggled. Lunch duty was fine - I spent time hanging out and talking with my kids.
I went home from school around 1:00 and then you know happened. If not, read further down the blog.
I do know that some people are asking how we could have possibly not known that Lincoln was making his way that night. I can honestly say that there were no warning signs. I felt great at school. Doctors had no signs, I felt no different until labor started. We knew the baby would be early, but we thought 35 weeks or so, not 23 weeks. I have thought every what if that could be thought. What if I hadn't gone back to work? What if I had had more water? What if I had sat down more? What if I had eaten something different or thought something different or was on bedrest or sneezed to hard or or or... The doctors assure me that it was nothing I had done. And they also tell me that it doesn't matter. He is here, they are doing the best they can for him. Wondering what if isn't helping me or anyone else. So for the little bit of blame I hear coming my way, please keep things positive for us in this challenge. Thank you.
I began work on September 1 with Superintendent's Conference Day. It was great to see my teacher friends again. I was feeling great and having fun socializing. I left a little for a doctor appointment at my endocrinologist. They were adjusting my medication - I had been taking 20 units of NPH insulin at bedtime, and we upped that to 30 with 5 of fast-acting before breakfast. My morning numbers have given me trouble with every pregnancy.
The following day the alarm went off at 5 AM. I know, right? In the old house I would put my clothes out on the couch in the living room the night before so that when I woke up, I could sneak out of the room and David could sleep without interruption. That's not to say that I didn't frequently sneak back in the room to get jewelry, shoes, or something else I had forgotten to lay out the night before.
In the new house it's different. We have a en suite bathroom, so I put my clothes in there. I showered and got dressed. I went downstairs, tested my number, made my two eggs with one piece of toast with margarine and cup of coffee with a splash of milk. That was my breakfast every day now, as I knew my glucose numbers were controlled with that breakfast. I had to go back upstairs to do my hair. But then I came back downstairs and relaxed with my coffee and morning news. Then I went back upstairs for shoes and jewelry. This new routine would take me a bit of time perfect so David could sleep without me coming in and out, over and over.
I left for work and stopped at Dunkin' Donuts. I picked up munchkins for my eighth graders - they have to be at school at 6:45 voluntarily - I spoil them the first and last day with donuts. It was rather challenging to walk into DD and not get coffee or a muffin or a breakfast sandwich or a donut or... And I was even good once I got to work - I didn't have even one munchkin when my kids were eating them - I had a baby to protect and I was doing well on my diabetic diet. I knew they would have lots of questions, so on my chalkboard I wrote, "My name is Mrs. Jaklitsch, you can call me Mrs. Jak. His name is Mr Heller (my co-teacher), you can call him Mr. Heller. Yes, I am going to have a baby. No, you may not babysit." I didn't want to announce to each class that I was having a baby. And I didn't want my students trying to decide if I had eaten too many hamburgers over the summer or if perhaps I was pregnant again.
The kids wanted to know everything. When is the baby coming? How long will you be here? Who will our sub be? Is it a boy or a girl? What about the musical? I answered the questions as they came in as politically as I could. They baby was due Christmas Day, but we were expecting more like Thanksgiving. Your sub will likely be Mr. Heller, my new co-teacher. It's a boy this time - yes, after 3 girls we're excited to have a boy. I will be here for the musical, no worries.
The rest of my classes continued along the same track. I answered questions, talked about rules, we sang, I joked, they giggled. Lunch duty was fine - I spent time hanging out and talking with my kids.
I went home from school around 1:00 and then you know happened. If not, read further down the blog.
I do know that some people are asking how we could have possibly not known that Lincoln was making his way that night. I can honestly say that there were no warning signs. I felt great at school. Doctors had no signs, I felt no different until labor started. We knew the baby would be early, but we thought 35 weeks or so, not 23 weeks. I have thought every what if that could be thought. What if I hadn't gone back to work? What if I had had more water? What if I had sat down more? What if I had eaten something different or thought something different or was on bedrest or sneezed to hard or or or... The doctors assure me that it was nothing I had done. And they also tell me that it doesn't matter. He is here, they are doing the best they can for him. Wondering what if isn't helping me or anyone else. So for the little bit of blame I hear coming my way, please keep things positive for us in this challenge. Thank you.
Holding Lincoln for the First Time
Last night, Mommy got her first cuddles with Lincoln. Daddy gave him his first kiss. All was right in the world. It was quite a production to get Link out of his incubator and into Mommy's arms. I will forever be grateful to AnneMarie, our nurse who was willing to do a lot of work to make this a possibility. (I still remember nurse Kelly who offered to let me hold one of the twins for the first time. Kelly was also the first who let me hold both together first!) It took about 10 minutes for Lincoln to be settled. Not only did HE have to be moved, but so did wires, tubing, a small box that delivers his puffs of air from the jet ventilator, his infusion machine, and so on. I wore a hospital gown over my tank top to bundle him in, and a blanket folded four times was placed on top of him to keep him warm. He got a handsome little hat so he wouldn't lose heat through his noggin.
I was handed a mirror to get to see his beautiful face while I held him. I wasn't able to move much or get too comfy because I was literally taped to most of his equipment. That didn't matter at all. I was downright blissful. Daddy was thrilled to give him his first kiss. And his second and third. Once we finally had him all settled in, I used my mirror to see him as I talked to him. He kept his eyes open most of the time - likely curious about the new world he was "seeing." David and I sang the ABC's to him, Daddy singing the harmony part, because when you have music teachers as parents that's how it goes down. I read Link his first book - The Little Engine That Could - a gift from March of Dimes and also Grandma.
I talked to Lincoln a lot. I told him about his sisters. First Elliot who doesn't break the rules (please follow in her footsteps), who plans on making Lincoln HER buddy because Mommy and Daddy are a pair and Addie and Charlie are a pair and Elliot needs her pair. Then Adeline who has claimed Lincoln as HER baby, and she just wants to HOLD him, and how she's the IMP of the family with no one even coming close. And finally Charlotte who will dress him in tutus, show him how to be animals (Charlie's partial to turning into a frog or dog at any given moment - I'm sorry - PRINCESS frog or PRINCESS dog or PRINCESS baby!), and probably teach him how to climb things.
After an hour, I was quite uncomfortable and it was getting quite late. We prepared for Link to go back to his isolette. So much easier for him to cuddle in than to come out! It took only about two minutes to get him back and settled in. For all the effort it took to bring him out to "play," I am so grateful that at nine days old I finally got to hold my son. And I snuck in one sweet little (okay, big) kiss to his sweet little (no seriously, very little) head.
I was handed a mirror to get to see his beautiful face while I held him. I wasn't able to move much or get too comfy because I was literally taped to most of his equipment. That didn't matter at all. I was downright blissful. Daddy was thrilled to give him his first kiss. And his second and third. Once we finally had him all settled in, I used my mirror to see him as I talked to him. He kept his eyes open most of the time - likely curious about the new world he was "seeing." David and I sang the ABC's to him, Daddy singing the harmony part, because when you have music teachers as parents that's how it goes down. I read Link his first book - The Little Engine That Could - a gift from March of Dimes and also Grandma.
I talked to Lincoln a lot. I told him about his sisters. First Elliot who doesn't break the rules (please follow in her footsteps), who plans on making Lincoln HER buddy because Mommy and Daddy are a pair and Addie and Charlie are a pair and Elliot needs her pair. Then Adeline who has claimed Lincoln as HER baby, and she just wants to HOLD him, and how she's the IMP of the family with no one even coming close. And finally Charlotte who will dress him in tutus, show him how to be animals (Charlie's partial to turning into a frog or dog at any given moment - I'm sorry - PRINCESS frog or PRINCESS dog or PRINCESS baby!), and probably teach him how to climb things.
After an hour, I was quite uncomfortable and it was getting quite late. We prepared for Link to go back to his isolette. So much easier for him to cuddle in than to come out! It took only about two minutes to get him back and settled in. For all the effort it took to bring him out to "play," I am so grateful that at nine days old I finally got to hold my son. And I snuck in one sweet little (okay, big) kiss to his sweet little (no seriously, very little) head.
Saturday, September 12, 2015
Day Nine - Doing Fine
(I can't rhyme every title of a post. But the last two days lent themselves well to it.)
Lincoln could pretty much only go up today. Thank God he did.
He is far more stable now than he was 24 hours ago. Twenty-four hours ago I was praying my son would live. Today, he is pink, he moving more (he was listless and grey yesterday - bad signs...). Again, I lifted the blanket over his incubator and he was sleeping, but as I spoke to him, he opened his eyes. I know he doesn't understand a word I say, and I'm not even sure how much he can hear me through all the plastic, with the hum of all the machines, the beeping of the alarms. But he knows I'm there. He looks in my direction (he can't see me, but perhaps sees a blur that in his mind is his Mommy).
We're not out of the woods - Link's kidney function is still an issue. They stopped the dopamine because his blood pressure is looking better. His blood pressure is a major issue because of his PDA. The PDA is a major issue, but we cannot even address it until his kidneys are functioning better. Of course, they aren't going to function as well without the PDA being repaired.
There are so many vicious cycles here - until Link gets bigger, he can't be transported for the ligation. Without the ligation, he can't eat and therefore won't grow quickly at all. If his kidneys aren't functioning well, he can't be given much in terms of medication and antibiotics, but without the medications and antibiotics, his kidneys won't function well. *sigh* The doctors, NP's, and nurses keep referring to the balancing act. And each act affects everything else. So while we're working on his kidneys, which is the main focus right now, other things are changing and being ignored and thrown out of balance and then checked again and adjusted and...
But the news for now is that he's pink (what a beautiful color on a baby), he gained 20mg since yesterday (690 to 710), he's off the dopamine, he's moving around a bit. He's going back on bili lights as I type, and he's on two antibiotics (Seph(?) and V-something). And for now he's stable. And he is under Mommy's strict orders to continue improving. Because I love him so much. I know you know that. But I love to say that I love my son.
Lincoln could pretty much only go up today. Thank God he did.
He is far more stable now than he was 24 hours ago. Twenty-four hours ago I was praying my son would live. Today, he is pink, he moving more (he was listless and grey yesterday - bad signs...). Again, I lifted the blanket over his incubator and he was sleeping, but as I spoke to him, he opened his eyes. I know he doesn't understand a word I say, and I'm not even sure how much he can hear me through all the plastic, with the hum of all the machines, the beeping of the alarms. But he knows I'm there. He looks in my direction (he can't see me, but perhaps sees a blur that in his mind is his Mommy).
We're not out of the woods - Link's kidney function is still an issue. They stopped the dopamine because his blood pressure is looking better. His blood pressure is a major issue because of his PDA. The PDA is a major issue, but we cannot even address it until his kidneys are functioning better. Of course, they aren't going to function as well without the PDA being repaired.
There are so many vicious cycles here - until Link gets bigger, he can't be transported for the ligation. Without the ligation, he can't eat and therefore won't grow quickly at all. If his kidneys aren't functioning well, he can't be given much in terms of medication and antibiotics, but without the medications and antibiotics, his kidneys won't function well. *sigh* The doctors, NP's, and nurses keep referring to the balancing act. And each act affects everything else. So while we're working on his kidneys, which is the main focus right now, other things are changing and being ignored and thrown out of balance and then checked again and adjusted and...
But the news for now is that he's pink (what a beautiful color on a baby), he gained 20mg since yesterday (690 to 710), he's off the dopamine, he's moving around a bit. He's going back on bili lights as I type, and he's on two antibiotics (Seph(?) and V-something). And for now he's stable. And he is under Mommy's strict orders to continue improving. Because I love him so much. I know you know that. But I love to say that I love my son.
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