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.

A Tiny Christmas

When December rolled around, I felt that I would mostly ignore the holiday, letting it pass by without much enthusiasm. I'm sure this is in part due to the dip that Alex took on Thanksgiving. But as he has very slowly improved and gotten bigger (2 lbs 12 oz, and 15 inches!) I've come to be happy in the fact that even though I won't have a Christmas like I would usually love to create with lots of holiday treats, a big Christmas tree, caroling parties, etc., we have our baby, and everything we need to make this season a beautiful one, and one to remember. I mean, look at this little guy!

In this picture, Alex had been smiling so much for us. He had had his diaper changed, had a new holder for his tube put on his face, and was all cleaned up. Often he will have his eyes closed when we're messing with him, but will often wake up once he gets snuggled back into his little bed. This evening he was particularly awake, and smiled not just a little for Steven and I. He was completely responding to our voices and our presence by his bedside, and smiled over and over again. Never have I felt more happy. You can see in this picture the beginning of one of those great big, tiny smiles.

Last week ended well for Alex. There was a bacteria identified from a blood culture that required another antibiotic, and as he improved from that, he was also given a steroid. The hope with this was that it would give his lungs the boost they need to be able to wean him down from the Oscillator, and switch him over to the Vapotherm (which goes off of a nasal cannula instead of a tube into his lungs). The steroid did a lot of good for him, and he switched to the Vapotherm on Saturday evening. It took him awhile that evening to get used to the idea that he needed to breathe on his own again. It can be scary for Steven and I to watch when he forgets to breathe and his heart-rate drops. and needs to be stimulated to breathe again, but we're learning that this is normal for a preemie, and over time he'll be okay on his own. We're so grateful for fantastic nurses and doctors who take care of our baby and keep him alive day to day. How do you express gratitude for such a service?

Tonight he was switched to a different machine, since the Vapotherm wasn't offering him quite enough support. He still has a nasal cannula, but the machine is a bit more aggressive and will help him when he forgets to breathe on his own.

Ever since Alex was born he's been on a Merry-Go-Round with machines to find the one that will help him the most, and that changes periodically. The important thing for us is to realize that things can change with him very quickly, and while hoping for the best, we need to understand that he'll have many setbacks. It has definitely been an exciting few days for us, to see him without a giant tube holder covering his mouth, and to see him enjoy moving his head around, instead of being stuck in one place from the rigid tube. Our little man has gotten so big, and even chubby! He's looking and acting more and more like a normal baby, just by his positions and the way he sucks on his feeding tubes. His cheeks are getting chubby and square, and it's so adorable.

The best part of our Christmas season thus far has been decorating Alex's area of the NICU. He's got his little tree and most importantly, a nativity that Steven made, and a stocking made by me. We're so happy to be able to start our family traditions with baby Alex.

The parent support team at the NICU made an ornament for us out of Alex's footprints. He had an IV in his left foot at the time, so they carefully un-taped the bottom of his foot in order to get the footprint.

I still can't believe how big he's getting. Even his footprints look huge to me now, from where they were six weeks ago.

We continue every day to pray and pray for Alex. He has taught me how to have faith in ways I never knew.

5 Weeks Old

The sound of alarms on the monitors at the NICU, the vibrating of the oscillator keeping Alex alive, the drone of the breast pump, every step on the way to the hospital. These constant repetitions are tying the minutes and hours into weeks. The days are blurring together, and I continually find myself counting repetitions, realizing I've been counting after a few minutes, and completely unable to stop myself. It started after I had gone into labor, and the nurses were tracking Alex's heart rate with a continuous doppler.

I sometimes find myself agitated by the alarms and the relentless repetition all around me, but in the last few weeks I've realized how comforting it has become to have a constancy, no matter how insignificant. The sounds of the alarms and the pump, seeing the vibrations on Alex's chest, watching him try to breathe on his own are somehow bringing a measure of peace.

Our Tiny Family

Alex has been improving very slowly over the last couple weeks. He went back on a high frequency ventilator called the Jet when he first got sick/worn out at Thanksgiving, and since then has shifted to the Oscillator, which is another high frequency ventilator. He's had a full course of antibiotics, and IV, and a couple of transfusions in that time. Each day we've hoped for awesome news, and when it starts to look up for a shift of nurses or two, he's gone back to about where he was. They've tried to wean him off of the ventilator twice by putting him on the Conventional Ventilator, which gives him full breaths instead of small and rapid puffs of air, but each time he hasn't liked it, and they put him back on the Oscillator.

While we're incredibly grateful to these machines for keeping our little man alive, they can be quite damaging to the lungs, so we're hoping he'll be able to get off of them soon, and back to the Vapotherm, which uses the nasal cannula instead of a tube into his lungs. He appears like he's trying so hard to breathe on his own, and we can tell that he's ready to be rid of the tube, emotionally at least.

First time to be clothed! Tiny little onesie.

Of course, our little man has been improving in other areas, and still makes his mommy and daddy proud each day. He's put on a pound in the last couple of weeks, which has doubled his size! He's got a bit of a double chin now, and looks much healthier. He's currently at 2 lbs 6 oz. Makes a big difference for our little guy. This is the main thing that will help him, to outgrow the problems with his lungs. He is still tolerating his feedings really well. He has a tube that goes into his bowels (instead of his tummy for now, to prevent such frequent reflux that was likely getting into his trachea), and is getting the fortified milk (mom's milk) continuously.

Getting his weight and getting his bed changed

Best part of the day for Daddy

In the past week, we've gotten to hold Alex a couple of times, which has been great. We had gotten used to it in his first couple weeks of life, but then we went another couple of weeks without holding him, so it has been a special treat. It takes two nurses and a dad to hold all the cords and transfer baby over to his mommy, and he's had to be all bundled up, but we love the time with him regardless.

Of course Alex has had many little baths, but we got to participate for the first time this week!

Each bath he gets all of his monitor tabs washed off of his chest, belly, legs and feet. Fun to see him without all of the wires for awhile. Poor little man didn't love his bath. He was thrashing about like crazy.

All warmed up and snuggled in a hot towel. It took awhile to get the worried look off of his face. 

After his bath he was doing well, but needed some time with Mommy to calm down after his crazy bath. This was skin-to-skin (but really it was just his cheek on my chest).

We sure do love this little guy! Even with all the worrying and the ups and downs that are becoming a constant, he brings so much joy into our life.

He's a bit swollen from a transfusion and some IV fluids, but look how big he looks in this picture! He's really filling out and looking great.