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.

Bigger on the Inside

- post from Dad

Alex is three weeks old today! What a miracle he has been. Little Alex has made us a family and has brought us together in a way I never imagined. He has been teaching us so many things these last few weeks- but above all he has given us lessons on love, and the real power of prayer and faith. He is such a blessing. I know that even though he is so small, his little spirit made the decision to stay with us. While I'm sure it is scary, painful, and confusing for our baby, somehow he gains the resolve and strength to continue his daily struggle. 

After his first extremely challenging day on earth he had two great weeks where he was able to learn to breathe on his own with a little help from a machine which provided oxygen through a nasal cannula. He has had a bit of a set back this past week and on Sunday was set on a different machine which would help do more of the breathing for him. His levels had also been fluctuating overall and it was difficult to keep him stable. He was having episodes of oxygen desaturation and needed to be helped manually to breathe. 

The doctors and nurses had told us to expect a roller coaster ride with good days and bad days. We had gotten so used to Alex being a little "super-man" and "rock star" like the nurses called him, that his turn caught us emotionally unprepared. Alex has had a rough week. His breathing and oxygen levels have improved the last few days but there are still other aspects which constantly need to be monitored. There is so much more going on inside him that one would not normally think about. At times it is a bit overwhelming to think of the amount of things that are being checked. His oxygen levels, carbon dioxide, heart rate, sodium, glucose, and sugar levels to name a few. 

With the lights and alarms from monitors and various machines keeping him alive, it's easy to be distracted by looking at the numbers. But when I see him lying in bed, looking peaceful and sometimes peeking out at us, everything else just fades away and I see my boy. Not just the little micro-preemie who is hooked up to machines, IV's, monitoring devices and tubes, but the son we have prayed and waited for. 

I asked one of his nurses how well babies this small can see. She mentioned they could likely only make out light and dark, and probably not be able to see past 6 inches. Sometimes though, I feel like he can see clearer than my eyes can. He looks at Montana and me with his large, dark, beautiful eyes and I know there is so much strength and knowledge in him. A strength one cannot imagine lies within a body so tiny, and a lingering knowledge of where he came from. 

He grows a little each day. He finally weighs more than his birth weight and is steadily increasing. He is tolerating mom's milk which is the best thing for him. The nutrition he gets will help him outgrow the various challenges he is facing. His feet are about half the size of my thumb, and three of his fingers fit in the length of one of my fingernails. Still a tiny guy, but a tremendous spirit. 

Montana made Alex a turkey decoration out of his footprint for Thanksgiving. We visited Alex in the morning and drove up to Blackfoot for Thanksgiving dinner with family. I was hesitant to leave Ogden even for a short while, but being away for a few hours was a break from the hospital and hotel room that has been our environment the last three + weeks straight. We got back by evening that same day and, while we greatly enjoyed the visit to Idaho, were excited to be back closer to our little boy again. Alex will be in the hospital for the next several holidays - and while the circumstances have not been ideal, we are thrilled to have our baby with us to celebrate the times. 

We love Alex and have also felt the love and genuine concern from all of you. Thank you for your support and prayers. I know they have helped us and Alex. 

Do it for Alex!

A bright spot in our routine of late has been the addition of skin-to-skin holding time with Alex. Because he's doing well, we're able to hold him one or two times a day now, and often skin-to-skin, which helps regulate his temperature and helps with bonding. His numbers tell us he loves the time with us. Last night's nurse also told us that while skin-to-skin contact with both parents is beneficial, the mother's body will change temperature for the baby, according to his needs. While this may be the case, whenever Steven is holding Alex, he looks incredibly peaceful. That baby loves his daddy! We've now both started doing skin-to-skin more often than holding him in a blanket on our laps.

Another bright spot from the week is that Alex has now opened his eyes! The few days before he opened his eyes, we saw him raising his eyebrows, frowning, straining around, and making all kinds of faces as though trying his very best to open his eyes. One of those days, I was having a particularly difficult morning, and Alex appeared to be pretty grumpy. I started talking to him through the incubator, trying to soothe him, and he turned his neck completely around, and "looked" right at me. He heard my voice, and he recognized me. Once again, the little man grabbed hold of my heart, helping me feel once again, that yes, I was needed.

One day when we came in, we were startled to see him open his eyes and try to look at us a little. What a strange sight! It seems as though every day there are new things he accomplishes, new strides he reaches. What must he think of his surroundings? What must he think of the new ability to see, however limited?

He seems pretty peaceful the last few days. When he was on the intubator for his oxygen, they kept him pretty well sedated, as babies get pretty agitated with that machine. Right when he switched over to the nasal cannula, he seemed pretty grumpy and upset, in part due to the fact that they had stopped sedating him so that he would breathe on his own. But he now seems to have accustomed to the routine of things, and is much happier. This is a huge relief for his mommy and daddy, that's for sure.

Daddy's first time holding Alex

Mommy's first skin-to-skin

Daddy's first skin-to-skin

The nurses are all still very encouraging about Alex. Calling him a little rockstar, calling us the champion holders. They tell us to expect setbacks, but for now, he's doing fantastic. He's not quite back up to his birth weight of 1 lb 10 oz, he's currently at 1 lb 7 oz, and looks much better and more filled out now than he did just a few days ago. A nurse said when picking him up for skin-to-skin time with mommy "he weighs but a whisper".

Deep Thinkers - Daddy and Son

He's such a little fighter, and we love him to pieces! If anything is difficult for either me or Steven, we tell each other "Do it for Alex!", and our resistance falls away. Everything we live for is now for Alex. He has made our family unit a family, and the moments we get to hold and be with him make everything worth it. For me, the recovery from surgery. The monotonous and painful routine of pump, sleep, pump, eat, pump, repeat. The hobbling over to the NICU twice a day, wishing I could do more. For Steven, the return to a routine of work and school, while those events seem so insignificant in the face of the last two weeks. If we're sad or upset, Alex makes it better. What a beautiful, little, tiny, TINY gift.

A Happy Surprise

With another Monday rolling around yesterday, Steven started back to work. His company has set him up to be able to work from Ogden on a company laptop. It is such a blessing for him to be able to do this, and allows us to keep our focus where it needs to be.

As we visited Alex during his 12:00 care time (time to change his diaper, give him his feedings, turn him around, etc.) today's nurse surprised us by asking if we had held Alex yet, and if we'd be interested in holding him today. Ha! 

She explained that we'd hold him in the little bed he lays in, and got out a gown for me to wear. As I sat down in the chair and followed the nurse's instructions, I felt like a 4 year old getting ready to hold a new baby. I hadn't anticipated being able to hold him for a few more weeks yet, but he's doing so well with everything, they said he was ready to at least give it a shot.

It's a funny thing to feel emotions of elation along with terror. Of course I want to hold my baby! But is he ready? Is he going to tolerate it well? He's too small for me to hold! But as she handed him to me, my heart melted as it does every day. I felt peace at finally having my infant in my arms.

His oxygen and other numbers stayed good as I held him for a good while. He cried, but was calmed down by a drop of sucrose, and a nurse showed me how to hold his head so he feels pressure as he would in the womb. He's so tiny that his nervous system can't handle much stimulation. We have to limit how often we touch him, and make sure that when we do, it's by placing our hands firmly on his body. Light touching is too much for his system. I rocked him (such tiny motions), I let him hold my finger, and I watched as he cried, then slept, then cried.

Alex graduated from the tubal ventilator going into his lungs this week, and now just has the nasal oxygen tube. Hooray! It's so nice to see a little more of his face. Since its removal, we've been able to hear him cry, and a sadder thing I have never heard. Because he has to do his own breathing now, he hasn't had quite the sedation that he had previously. This means - more crying. Because he's so small, he doesn't respond well to the norms of comforting. I can't pat him, I can't stroke him, I can't do anything but watch and hope he's okay. Even my voice is often too much for him. I feel helpless in his discomfort.

I was able to hold him for about 20 minutes, and he tolerated it very well. His numbers started to go down, so the nurses put him back. When Steven and I expressed our surprise that we were able to take him out when we had thought we wouldn't be able to for several weeks, the nurses told us it's possible because of how extremely well he is doing with everything. He has had a grade two bleed in his brain, which is not a terrible concern to the doctors. (Head bleeds go from grades one to four, four being of serious concern.) Grade two is at the point where they just want to keep their eye on it, and with Monday's head ultrasound, there was improvement. It was still at a grade two, but definitely improved, and the doctor was very encouraged.

We feel very blessed by his progress. For one so tiny, he is accomplishing such great milestones. The nurses call him a little super-man. There remains ahead of us a long road yet, but we are encouraged by his fighting strength.

Thank you all for your thoughts and your prayers. We love our tiny little super-man!

Look how tiny he is!

One Week Old

Little Alex is doing great. The doctors are taking him off of more medications and machines every day. Today will be his last antibiotic, and he has gone onto a different ventilator as he is more capable of breathing on his own than previously. Every visit to see him makes us so happy. Funny how quickly life changes. Last week, what was for dinner was the most important thing, and now, we get to watch our little guy fight for each breath every day, and change in the tiniest and most simple of ways. 

He has started to have some of the funniest facial expressions. He raises his eyebrows a lot, as if he's trying to open his eyes to see what's going on around him. He grimaces, frowns, and pulls off a great grumpy-old-man look. 

I had been working on a quilt for him throughout my pregnancy, and had finished it the Sunday before I went into labor. The NICU staff said they could use a blanket we brought in to put over his incubator, so they put it up today. It's nice to have a little bit of home over our baby.

We feel incredibly blessed to have our tiny son.