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.

Where there is great love, there are always greater miracles. 

                                                                                     - Willa Cather

Two hours after the birth, I had yet to meet my tiny son. I was told I could see him soon. Twice they wheeled my bed to his pod in the NICU, only to find he was still in resuscitation. When I arrived in my new room where I would recover for the next three days, we received a phone call that the nurse put on speaker phone for Steven and I to hear. They told us that tiny Alex was rapidly going downhill, and they needed us to come see him in the resuscitation room. 

Numb, overwhelmed and terrified, they wheeled my recovery bed in by his table. He was covered with plastic for warmth, already had many tubes all over his body, and his face was covered with a hat. I saw his beautiful pink feet poking out, and a tiny pink hand up a little further. He was so much smaller than I had anticipated. I watched him helplessly as they explained what was happening. He had done so well with everything up until that point. His ability to breathe had quickly gone from very good to very bad, and he wasn't responding to the oxygen. There was talk of needing to do a transfusion, but there was no time to find out his blood type, and losing that much blood would definitely be harmful to such a tiny being in that state. Through my tears I was able to squeak out a request to touch my baby. A wonderful doctor quickly replied "Absolutely." 

I reached out to touch his tiny toes, and he pushed back against me. I put my finger in his hand, and immediately felt pressure in return. My tiny baby was clinging to me, as if begging an answer "Mommy, what's happening? Please help me." 

My heart burst in that moment. My baby needed me! With all the doctors needed to do, my baby still needed me! He held on with all his strength, until his fingers turned white, and he wouldn't let go. As I watched my beautiful little boy through my tears, I heard my sweet husband crying behind me. As he held my hand and we watched our baby, we became a family.

Over the next few minutes, I heard the doctors say he was improving, and that his oxygen levels were going up, with him being able to breathe more freely on his own. The feeling in the room was slowly changing. From feeling there was a high chance we would lose our son, there began to be hope that everything would be alright. 

The doctors and nurses said he was on his way back up from that downward slope, and as I was wheeling back to my room, we thought that Steven should stay back to give him a name and also a blessing. My Mom asked a nurse if she could track down another priesthood holder, and then she accompanied me back to my room, where we waited for news of Alex.

Steven gave Alex a name and a blessing with another man who also spoke Spanish. Halfway through the blessing, Steven felt a peace come over him, and he was able to bless Alex with strength and health. Alex continued to improve that night, and the next morning was holding his own (with the help of many machines) very well. The doctor was surprised that he had so quickly taken a turn for the better.

What sweeter gift than this? Such a strong little man, so ready to fight to be with us. He has brought beauty and tenderness into our lives. He has shown us the meaning of love. He has worked a miracle in us.

Though the next few months will be full of daily roller coasters with ups and downs in his health, we feel confident that what Alex is going through is in the Lord's hands. He continues to need us on a daily basis. Though we wish there were more we could do for him, we live for those moments each day when we can reach our hands into his incubator, place them on his tiny toes, his hands, his head, and watch him respond. 

We can imagine no sweeter blessing.

There's no way we could have known, no way we could have prepared for the adventure that began for us on Halloween night. My body went into preterm labor, with my baby only at 23 weeks and 4 days. We went into Labor and Deliver at the Logan hospital, and were told my body was trying to get the baby out. I was already dilated to 5 cm, and had a bulging bag of waters. Babies have a much higher chance of survival at 24 weeks and beyond, so there was much cause for concern for our little one. I was flown to McKay Dee in Ogden which has a fantastic NICU, in the event that the doctors wouldn't be able to keep my baby inside of me for very long. Less than an hour after my helicopter flight into Ogden, my water broke, and we knew it would be a matter of hours or days before we would meet our tiny baby.

The next couple of days were spent with my sweetheart, my Mom and I sitting and watching our baby's heartbeat. Movies were uninteresting, and the only thing that brought peace was watching his heartbeat on the monitor, and listening to its steadiness. Knowing that as long as he was still inside, he was okay. Wondering why he wanted or needed to come out. Wondering why my body couldn't keep him inside. Wondering how long it would be safe for him to stay inside me, instead of in the care of the NICU staff.

Through those few days of being paralyzed on my back, I felt such an intensity of love for my sweetheart, and for our son. I had no idea what was happening or why, but I felt a peace knowing that it was in the hands of the Lord. I knew that He was in charge. I was given another blessing by Steven and my Dad. Hearing the concern of so many friends, relatives and friends of friends gave me peace that our baby would be well. If he wasn't, how could I doubt that it was in the hands of the Lord? We started to feel as though it was time for the baby to come, but the doctors were still giving me medication to keep the contractions from coming. The evening before our baby was born, Steven stood on the left of my bed, my Mom on the right, and I asked my Mom if she would say a prayer. She prayed a lovely prayer that again brought peace to my heart and reassured me of the Lord's love for our tiny family. I then asked if Steven wanted to say a prayer, which he did. I have been amazed at his strength in this process. To see his love for our unborn baby, to see him exercising his faith that all would be well - this was peace. I then offered to say a prayer. I had been alright up until this point. I had felt that things would be alright. But I lost it as I prayed that above all, our little son would somehow feel our love in the difficult and painful situation to which he would be arriving. In that moment I started to realize the love I already had for him, the desire I already had that he would feel no pain. I just wanted him to know how incredibly he is loved.

The next afternoon I started having contractions again, and as the baby was transverse and there was no amniotic fluid in which to move him around, the doctor decided to do a cesarean section. They came in and let us know we'd be going in half an hour to the OR, where I'd have the procedure, and the NICU team would be ready for resuscitation in the room next to the OR. Only Steven could come with, but he could take the camera. We felt excited. We'd waited for several days knowing this moment was coming soon, and were happy it was finally here.

But all the fear also started to creep in. I have never feared anything more than an epidural and being cut open. All of a sudden, this was reality, and I realized I was slipping out of control, even more than I had for the last several days. As he had been throughout the few days previous, Steven was my strength. Seeing the confidence and faith in his eyes gave me something to hang on to.

As I sat up for the first time in 3 days for the epidural, the fear I felt was unbelievable. As the doctors rushed around me in that cold room with their cold instruments, I tried to let things happen, but couldn't keep the tears from coming. After I was a little numb, the anesthesiologist gave me something to make me dizzy, which helped me to relax a little as they strapped my arms to the table. I prayed desperately in that moment for God to help me relax, and to give me something to concentrate on. I prayed that I would be able to feel angels helping me. I was a little frustrated when I felt nothing, but also realized in that moment that he already had sent me an angel, and his name was Steven. Steven stayed by my face, wiped my tears away, cupped my face with his hands, and whispered to me that everything would be okay.

He saw our baby's feet first. The doctors milked the cord a couple of times to give the baby as much cord blood as possible, and before I knew it, he was gone into the next room. Steven stayed with me for a few more moments until he was allowed into the next room.

Alex Murray Delao

On November 3rd, 2012, our little guy was born, weighing in at 1 lb 10 oz, and 12 1/2 inches. His due date was February 24th, 2013. Steven stayed with him for about 30 minutes while I was wheeled into recovery, where my Mom and I waited for Steven to come back and tell us about baby Alex. In many ways, I was so relieved to have Alex in the hands of those who knew how to care for him, but instantly missed having his presence with me. That is something that won't change throughout the next several months. I miss having my baby inside me. I miss feeling every kick, knowing he's growing, and that I'm able to supply him with the things he needs. Now I have to place him in the care of the skilled and incredibly kind NICU staff of McKay-Dee Hospital, and trust in God that everything is going to be alright with our baby. I couldn't feel any more blessed to have him in my little family. Steven and I feel incredibly overwhelmed with love for our little guy.