Superman at Home after 128 in the NICU

Nurses had warned us time and again that the end of our NICU journey would be the most difficult. I have to agree, with the obvious exclusion of the first 4 weeks. At the very beginning, Steven and I didn't know if Alex would make it, and the fight for his life continued for several weeks after he was born. But once he stabilized, it became a waiting game. Oh, but we were so content to have him there! He obviously needed to be there, and we loved every visit! Walking through those doors into the waiting area of the NICU was an instant pick-me-up. I always felt I couldn't scrub up and sign in fast enough. Once he was mostly stable and off the vent (towards the middle of January), we were able to increase the time getting him out of the isolette. Steven and I took turns reading to him, holding and snuggling him. Alex became increasingly more social and by the time he hit 38-40 weeks gestation, was acting much like a normal baby. Breastfeeding and bottle feeding, and when he hit 40 weeks, it was like something flipped a switch in him, and he started to have an opinion. He would cry when we changed his diaper, instead of displaying the usual "stop" signs. He would wake up and be hungry. It started to break my heart to leave him there, because he wanted to stay awake long after a feeding or after we put him in his little crib. He needed to be soothed. The necessity for me to be Mom was all of a sudden there, but he wasn't ready to come home yet. This made those last few weeks extremely difficult.

Alex's delay in leaving the NICU was his eating. He ate half of his feeds every day for about a month, but whenever we tried to add more to that, he'd tire out and get set back again. He lacked the stamina and reserve (greatly in part due to his weakened lungs) to accomplish that task. For you or I, if we all of a sudden had to run for a distance, we'd likely be able to, because we have a reserve. But for him, it was as if he were being asked to run a great distance when he was already drained and exhausted. He simply couldn't do it.

As I believe I've mentioned, he had to get 48 hours of independent eating before he was able to go home. We didn't think he'd ever make it, to be honest. He'd do great for 3 or 4 feedings in a row, but then have to be gavaged (tube fed) the rest. Then one weekend, he took off, and did awesome for 24 hours. He had an eye exam the next day, so he had to skip a feeding because of the chemicals in the eye drops. He continued to do great through that day, and even into the next. Until this little stinker ate all his food for an entire 72 hours! This was over a weekend, and on that Sunday, right after all those 72 hours, he pooped out. He just couldn't finish his bottles anymore. 

This was unbelievably frustrating. Steven and I struggled to not place blame on the NICU and the nurses in general. After all, they had said 48 hours, hadn't they? He had gone above and beyond! He was fantastic! Why couldn't he just come home? Were the nurses feeding him wrong? It was already a week after his due date. I was so hoping he'd be able to come home the very first day or week of March, since I had already consoled myself to the fact that he wasn't coming home by his due date (February 24th). I went to rounds on Monday, March 4th to discuss our options. (Steven was back to work in Logan, commuting most days from the Guest Home in Ogden.) I expressed my frustration to the doctors, nurses, developmental specialists, dieticians, pharmacists, etc. that he had done so well, so why couldn't we take him home? They re-explained and confirmed that he just wasn't ready. I knew that this is what they had told us to be prepared for. The staff at the McKay Dee NICU is simply stellar, and even though I was frustrated, I recognized this was part of the process. I asked if they thought he would be soon, and they did. I mentioned that I'd like to room-in in order to be there for all of Alex's care times, to see if consistency of the persons giving him the bottle would help. They were enthusiastic and supportive of this. But unless Alex picked up quickly, he would need to stay until the weekend, because he'd need to be there for the eye exam, and it would cause to much stress on him to take him home Thursday or Friday, just to bring him back to Ogden for his eye exam on Saturday. So we made plans for me to room in on Wednesday, with the hope that he'd eat well enough that we could take him home Saturday evening, after he'd had a chance to recover from his eye exam. They have a couple of rooms with a couch bed and a bathroom for parents to room in with their babies before they take them home. This room is directly outside the NICU, and parents take their babies in there, where they (mostly) independently take care of them.

Alex didn't eat consistently Monday, but started to pick up Tuesday evening. I told myself we had some leeway, because we still had time. He really only needed to start his next big hurrah of eating perfectly on Thursday. But when I went in on Wednesday to feed him and then room in with him, he hadn't eaten anything for that nurse for the past two or three feedings. I was devastated. He didn't usually act completely not interested in his food, and usually ate at least part. Our friends that had a son born the same gestation as Alex but 3 weeks after Alex were going home this day, because their son was doing great with his eating. It took awhile to get the room ready, and so I listened to our friends' departure from their journey at the NICU. I was so happy for them, but so frustrated, and so sad that such a little thing had become such a big issue for Alex. Once things died down, they were able to move Alex and I into our new little room. They switched his oxygen to the wall in there, set him up on the monitor, and said "okay, he's yours!" I sat and held him and cried. I talked to him, and just tried to soak in the fact that I was alone with my baby, for really the first time ever. I couldn't wait for Steven to get there from work so we could be a family, together and "alone".

We called over for bottles which the nurses prepared, and if he needed to be gavaged the rest of a feeding, called back for them to give it to him through the tube. Still on Wednesday, I felt okay with him not finishing every bottle. But towards the evening and then on Thursday morning, we saw that it still just wasn't happening. It was amazing how little sleep we were getting! We were completely exhausted. Not only did we have to be on the ball to feed him every three hours, but we often had to call over and have the nurses bring a syringe to gavage him the rest of his bottle. Every time his monitor alarmed, we both woke up to make sure he was okay. It was extremely frustrating every time he didn't finish his bottle. 

Steven took that Thursday off from work, so he was with me when the doctor came in to talk to us about Alex getting the Synagis shot to decrease symptoms of RSV. He recognized our frustration and helplessness, and after a lengthy conversation about the situation, he asked how we felt about the possibility of Alex going home with his NG tube (tube through the nose into the tummy). I felt an intense wave of hope and relief. He explained that they don't often let parents go home with the tube, but he felt comfortable with that possibility for Steven and I. There's a danger of babies aspirating while pulling out their own tube during a feeding, or danger that the tube can be put down into the lungs. It's a tricky thing, and so they would need to be sure that we and they felt good about it. He said that he would bring it up with the other doctors in the morning, and should they agree, we'd set up plans to get that going. This really brought so much relief. I felt awful every bottle to have to (kindly) shove the milk down Alex, pressuring him because we wanted and needed him home. To know that I could just allow him to eat what he signaled he could handle, was really a wonderful feeling.

A few weeks before, I had overheard some people at the front desk of the NICU talking of decorating the NICU to be cuter, like the Labor and Delivery section of the hospital, and when I overheard this, I volunteered Alex to be photographed for their walls. An awesome tech named Mackenzie Kasper came into that room one night and did a photo shoot with Alex. We loved it! Alex seemed to enjoy the session, and we were very pleased with the pictures.

Friday afternoon they let us know that we were okay to go home with the NG tube, and that they'd train us how to put it down over the course of the next few days, and then we'd take him home on Monday. Hallelujah! I had a date! I had a date, and it didn't matter if Alex didn't eat everything perfectly! This was the greatest gift, and the best feeling. I could finally plan on something, and start looking forward, for real. They had Steven and I each put the tube down Alex twice, which was spread out over the next days. At that point, we were able to enjoy Alex, and enjoy our last few days at the NICU, crammed into that tiny room.

Finally! 128 days after Alex was born at 23 weeks and 6 days of gestation on 11/3, he came home with us on 3/11, at 42 weeks and 1 day of gestation. Weighing 7 lbs and 12 oz. So much paperwork, appointments setup for us with different doctors, feeding instructions, fortifier packets to add to the breast milk, all his decorations and supplies to take with us. Even now I can't fathom the hours, days, months, and effort that has been poured into Alex's well-being. He is an incredible miracle. He has done remarkably well. He has surpassed our hopes.  

Welcome Home, Alex!

Alex was home for almost two weeks with the NG tube. He continued to lack the strength and stamina to finish eating, regardless of what we tried. I took him to the chiropracter to help build his immune system, and was astounded that the adjustment allowed Alex to get rid of all the built up gas and start to eliminate properly. This gave him the desire to eat! Crazy that it's easier to eat when your tummy and innards aren't full of air and poop. The same day as the appointment with the chiropracter he started to eat all of his food, and in the morning before we were to take him to an eye exam, he pulled his tube out all of the way (despite my awesome taping job), and I decided to try and leave it out. I haven't had to put it back since. Admittedly, I still worry, and question whether or not he needs it back, because he still has a hard time finishing his bottles all of the time. But overall, he's doing very well with his food, and getting better all the time.

We had a very small ceremony at home a week later for Alex's blessing on March 30th, to which came immediate family and our bishop. Steven gave Alex a beautiful blessing, and afterward we and our parents shared our feelings. It was so amazing for me to look back and see how far he's come, and to remember all of the feelings from the beginning and through the whole process.

He had been slowly weaning off of his oxygen, only using it at night and during eating. The morning of the blessing we took the dots off of his face, and have left him off the oxygen since. He wore a monitor for his oxygen and heart rate with a pulse oximeter on his foot, which the pediatrician confirmed we could take off yesterday, since he has been doing so well. So as of 4/4, Alex has been completely tube, oxygen, and monitor free! It's the strangest and most wonderful feeling to pick him up and be able to move freely around the house.

Happy Easter!

Alex chuckled/giggled for the first time on my birthday, 4/3. Best gift possible! And last night, when I laid him on the floor after a long nap on Steven's chest, he was more smiley and interactive than ever I've seen him. He responded to Steven's playing with him with smiles, and gave another tiny little laugh. Steven and I were all over him! We couldn't stop laughing and playing with him.

Alex is the greatest. We are astounded at his growth and how well he's done with all that life had to throw at him. He still has challenges, mainly regarding his eating right now. But he's working through it, and doing so well. I hope he knows how awesome he is, and how loved, by how many. They just don't come any awesome-er than Alex.

Happy 100 Days - and Valentines Day!

Alex hit his 100 days in the NICU on Monday, February 11th. Woo hoo! The NICU ordered him a cake, and gathered around to sing Happy Birthday. And it was a mighty tasty cake.

Alex is now a whopping 5 lbs. 14.5 oz! There are still a few things that need to happen before he'll be ready to leave the NICU, and while we're still very grateful for all the nurses and doctors (especially for any oxygen episodes Alex has), it's getting harder each day to not bring him home.

In order for Alex to be ready to come home, he needs to be able to do all of his feedings (breast and bottle) on his own for at least 48 hours. For the last few weeks he's been able to do about half of them, and the other half he is given through the tube. And even though it feels like we're a turtle climbing a hill in this process, I only have to look back over even the last couple of weeks to be reminded how far he's come. Especially with his size! Steven is now back at work full time after being able to work from home for a good while after Alex was born (bless you Conservice!). After spending just two nights in Logan this week before seeing Alex, Steven was astounded at the difference he saw in him. He's getting so much stronger, and is now so much closer to the size of a regular baby. Of course everyone always says that kids grow fast, but watching a baby gestate in front of you is quite a different experience.

He will be coming home on oxygen, but he will need to be clear of any apnea bradycardia episodes for a good time before he goes home as well. He still has episodes while eating sometimes when he gets overwhelmed with milk or chokes a little, but it's important that he doesn't have any just sleeping in his little bed that he needs help recovering from.

His eyes aren't yet in the clear from the ROP (retinopathy of prematurity), but after 7 or 8 visits from the eye doctor over the past couple of months, we have seen them worsen and then slowly start to get better. It has regressed a little, and could still take a good while to regress, but we're hoping and praying that it doesn't! The doctor is checking on them every week at this point.

Because of how early Alex was born, we will not be able to take him really anywhere for the first several months after he comes home. Steven and I will take turns going to church, and especially in the winter months for the first couple of years, he needs to be confined to the house as much as possible, with not very many visitors. This may be a little difficult for Steven and I, but we are aware of the risks for premature babies such as Alex who have been through so much with their lungs. Something as simple as a cold could be devastating to his little body in the first few years. Lungs were not designed to sustain a baby at 23+6 weeks old, and his little body has seen the consequences of that. But he is a little star for how well he's endured, and for how remarkably he has grown and healed. He will continue growing and getting stronger. He continually amazes me with his strength, will, and happiness. He's definitely a smiley little guy, and makes us so happy.

Probably the best part of our Valentine's day was when we were with Alex last night. He seriously just about does me in with his tiny body and how cute he is. It was fun to have Lori (one of our very favorite nurses) take care of him, and take some pictures for us. He got a really pleasant and content look on his face during and just after these pictures were taken. I wonder if he knows how much we adore him.

"Mom! Dad! Oh my gosh. I can't watch."

We can't wait to be together all three of us every single day!

Little Man, Big Changes

So many things have happened in the last two weeks with Alex. I recovered from my cold and was able to see Alex after 8 days of staying away from the NICU. I wore a mask for a few days when I first went back, just to be sure he'd be safe.

Alex still loves his baths and loves to be held. He doesn't enjoy certain aspects of his cares, like getting his temperature taken, having his tummy felt, measured, or any kind of handling. As the development specialist has begun to examine him weekly, she has shown us his stop signs when he's bothered. Like putting his hands out, putting them together, yawning, hiccups - things like these that we didn't realize were his signals for us to stop or slow down - we just thought he was being cute. That has been extremely helpful for us to realize that he is bothered, so we can take our time in his handling. When he gets very bothered, it affects his oxygen saturation and heart rate.

We love this outfit we received from a friend.
His shoes are so cute!

About a week and a half ago, he was considered stable enough to be transferred from Room 1 in the NICU, and is now in Room 3. Room 1 is for babies who need much more critical care. This was a very happy day for us! But it quickly went from feeling like he was a big fish in a little pond to a little fish in a big pond. The babies in the other rooms are babies that cry, and many are in open beds instead of isolettes. Babies that eat at least in part from a bottle or breastfeeding.

This has made us feel like our NICU stay will not actually last an eternity. Seeing other families going home with their babies, seeing Alex growing into a baby that needs his mommy and daddy in different ways than before. The first two months of Alex's life whizzed by for us, when he needed such critical care, and we could do hardly anything for him. Now that he's currently 4 lb 7 oz, things have changed drastically. He knows when we're there, and cheers up significantly. He seems more like a real baby to us now, and just about drives us crazy with how cute he is.

The most exciting for me, was when we started doing non-nutritive breastfeeding, where I would pump, and then he would practice sucking. He did this for about a week, and loved it! Whenever he was a little stressed or not too happy, it would cheer him right up, and help him relax. I have seriously loved that closeness to him, and to be able to offer him something more motherly. He smiled a lot when we did this. After meeting with the development specialist and the doctor, it was decided he'd be able to try actual breastfeeding. His first real breastfeeding session was awesome. I've been able to do it with him a couple of times a day, and he's gotten very good at it. It's been almost a week since we started doing that. Eating is a very difficult skill to learn, and requires a lot of work. Learning to suck, swallow, breathe, repeat. He will often forget to breathe while sucking, and this is the main issue. But for the most part, I have been extremely impressed, and very proud of this little guy. He's learning to do it so well. He loves it, and so does his mommy.

When Alex reached 1800 grams (almost 4 lbs), he was switched to an open crib. Hooray! No more isolette. He's done pretty well maintaining his temperature, while still gaining weight. It's fun to have such easy access to him.

Along with being in Room 3, he is also in his very own private suite, an isolation room. We love this. It's much more secluded, and he still needs his ears protected from much stimulation. With the noisier babies in the other rooms, this is really nice.

We've been told by the doctors to not be surprised if Alex goes home after his due date (February 24th), and to expect that he will go home on oxygen. So even though he's made so much progress and has done very well, he still has a long way to go yet. It isn't the size that determines when babies can go home, but their ability to maintain their temperature without losing weight, and they need to be able to go 48 hours being fed completely by breast or bottle, without being supplied any through the tube. Doesn't sound like much, but it can keep babies in the NICU for a very long time.  So we're happy to continue the journey, and will just be patient. Alex is the one who will determine when he's ready to go home, and we'll give him all the time he needs!

Alex has had further eye exams, which have shown us that his eye development has gotten worse, and he has mild ROP (Retinopathy of Prematurity). He will have another followup exam on Saturday, and if it has gotten worse again, then he will need treatment to prevent loss of vision. The treatment would be a shot in each eyeball to help the affected blood vessels normalize. We are hoping that there will be improvement before Saturday, but we will see.

Steven and I attended a class for Infant Massage at the NICU, and Steven gave Alex his first massage this week. He loved it! He loved the time with his Daddy, and was very relaxed and happy.

Alex has had many de-sats (de-saturation, when his body isn't getting enough oxygen) and bradys (drop in heart rate) in the last week, since they took him off the caffeine which they use to keep preemies' minds alert enough to remember to breathe. The need for caffeine is something they eventually just grow out of.

Our concern for Alex has lessened significantly from where it was a month ago, but is still there. We of course want him to be comfortable and happy, not ever be sick, not have bad days, and be ready to leave next week! But overall, life is so much easier now than it was even a few weeks ago. In looking back at our experience, we had no idea how dire his situation was in the beginning. Seeing other families and their experiences and other 23 week babies has been both sobering and miraculous. We are grateful for his progress and very happy to have our little tiny baby boy. He's still so little, and will be for a good while. But his growth has been amazing to see, and his spirit is so big. He's pretty great. And wonderfully adorable.

Teeny Little Super Guy

A Week of Daddy

As I've stayed away from Alex this week of necessity, I've been slightly relieved to see that my desire/need to see him is superseded by wanting what is best for him. The sore throat/cold I've had for 8 days now has kept me away from the NICU, which is the best place on earth right now. I've handled it surprisingly well, but there's nothing more I desire than to be with my baby every moment. I'm so incredibly grateful that Steven has been able to go every day and care for Alex, talk to him, hold him, change his diapers and give him a bath. And above all, take pictures! After every visit, I ask if he told Alex I love and miss him. And of course he does. He's wonderful like that. I can already tell that he and Alex are going to be great buddies. 

Alex has really had an awesome week. He was extubated on Tuesday, and put on the Vapotherm. Hooray! He had a round of steroids as he was getting off of the vent, and this helps with the inflammation that comes from having a tube in his lungs, giving him the boost he needs. So far he's been very steady on the Vapotherm, and is having little to no desats, and no bradys, as far as I'm aware. He's big enough now that they can put his feeding tube down his nose into his tummy, so his mouth is completely free from anything! He's very happy about this (I would imagine), and is sucking like crazy.

Steven tells me after each visit how many nurses have said that Alex is getting so big, and is looking more now like a baby, instead of a baby who is still obviously supposed to be inside his mommy. He has quite a fan club at the NICU, and we love those nurses. It's easy to love people who love and are so sweet with your baby all the time. 

Steven gave Alex a bath for the first time a couple of days ago. And it seems that Alex loves his baths these days! He loves the warm water and gets pretty relaxed in the bath. Keeps his eyes shut for the bath, but then is wide-eyed afterward. Though he does seem a little overwhelmed, like "Wow, what's this? Water? It's nice. Hey! I don't have any wires on my body. Mmm. That head massage feels great. Oh my. What's this? A warm towel? This is the life." 

I want to squeeze this tiny little guy! Right before I got sick, I got to hold him skin-to-skin for a good while. As I had my hand on his back, he grabbed my thumb, which was very sweet and priceless. I can't wait to do that again. He's such a happy little bright spot in my life. Him and his Daddy!

Merry Christmas and Happy New Year!

We spent Christmas Eve with Alex until about 1:00 in the morning. Daddy read the Christmas story from the bible to Alex and I, and we opened a few gifts for each other. Alex received the primary songs on CD in spanish. I can't wait to sing to him and read to him all the time. We also gave him the book The Polar Express a few days before, and have both read it to him a few times. He loves hearing his Daddy's voice, especially. Steven and I went to Idaho right after for the rest of Christmas, where we enjoyed family for a few hours, and a wonderful meal. And boy, were we sleepy! We came back on Christmas evening, and completely missed the snowstorm that hit the next few days.

Santa Clause came to the NICU, and Alex wore his first outfit from Mommy and Daddy, which was adorable, and too big.

After a week on the nasal prongs, Alex got pretty tuckered out from taking care of breathing on his own again on Christmas Eve, and was switched back to being intubated on the vent. He's now been on that for a week, and hopefully will switch over again soon, as the vent is so very hard on his lungs. He's had so many secretions in his lungs that they need to suction out, which they can do since he is re-intubated. He gets pretty fidgety as it is extremely uncomfortable to have thick nasty stuff in your lungs, and to not be able to get it out on your own. The suctioning they have to do many times a day to take care of this is also pretty miserable. On the bright side, his oxygen needs have been fairly low while he's been on the vent.

Steven and I were actually fairly relieved when Alex was put on the vent again this time. He had been having so many bradys (http://preemies.about.com/od/preemiehealthproblems/g/bradycardia.htm) where his heart rate drops significantly, and he stops breathing from going into a deep sleep or simply forgetting to breathe. When this happens, he turns blue and you have to stimulate him aggressively to get him to breathe again. Terrifying for us to watch and experience. Caffeine is the medicine of choice for babies this small, which he's been getting all along, but for some reason wasn't enough to keep his brain awake enough to be consistent with his breathing.With all of these episodes, he just needed some extra support. This is something that babies need to outgrow. As the nurses continually remind us, he's not supposed to be here, and his lungs aren't supposed to be working yet.

Alex has surprised us by his disposition and his attitude. With the many difficult and uncomfortable things that he goes through every day, he remains so sweet. When Steven and I say something we think is funny, often he will flash a quick smile. I feel that he must be a very patient little tyke. It must be so difficult. Especially with the tube into his lungs, his head is more tied down to facing one direction. Sometimes he'll fight it, and try turning his head completely around. He's got such a strong little neck, and a powerful will. The week before Christmas when he was on just the nasal cannula, he would constantly pull out his feeding tube and also his nasal prongs. The nurses would find the feeding tube feeding the bed, and would swaddle and re-swaddle him to try and prevent that from happening. It will be so interesting as Alex gets older to see what kind of a disposition he has. Because even though he is incredibly patient and sweet, he's also strong-willed. Such an amazing, wonderful little man.

Alex was pretty fidgety when I gave him this pacifier. He immediately started sucking, and grabbed his two hands tight on the left side of his face. His knuckles were white and he had a good hold on the tube or his ear or whatever he could find. He just was concentrating so hard on sucking that pacifier. The nurse moved his hand over to the pacifier, and once he was able to hold it in himself, he was pretty content.

Even though he's been on the vent and intubated, we've still been able to hold him quite a bit, and that has been wonderful. He's at 32 weeks gestation now, and 8 weeks old. He is now one of the bigger babies in his room at the NICU. 3 lbs now! It has been overwhelming to see the room fill with other 23-27 week babies this holiday season. My heart reaches out to each of them and their families, and when we hear of difficulties they are experiencing, my heart cries for them as it would for Alex.

For the last couple of days I've been sick with a sore throat and stuffy nose. I had been trying so hard to avoid it! This means of course that I can't see my baby. But I'm grateful that he's doing so well and is stable. Steven has been able to go over and be Daddy as well as relay my messages to Alex, and I'm so happy for that.

Alex had his first eye exam on Saturday. There is great cause for concern in preemies that they will develop Retinopathy of Prematurity, or ROP. Because their eyes are so under-developed, the blood vessels in their eyes can grow abnormally, which can lead to many problems including vision loss. Thankfully, the results from his eye exam showed the best possible scenario, which is that the blood vessels behind his eyes are 3/4 developed, and have passed the critical stage. This is further than they would expect for someone of his gestational age and history. They will continue to check and monitor his eyes, but this is already such a blessing and we are so grateful for this little miracle.

Overall, Alex is doing very well. He had a heart echo recently, since the doctor had heard a heart murmur. There is nothing too uncommon there, just Patent Ductus Arteriosus, which is the open heart valve that can sometimes take awhile to close in preemies and newborns (http://www.nhlbi.nih.gov/health/health-topics/topics/pda/). He will continue to have issues with his lungs for quite some time due to their underdevelopment and the necessary evil of being on the machines, but the other issues he has faced are resolving. He is growing and developing, and every day brings so much joy to our lives.