Sunday, May 30, 2010

Heads Up

As the boys near their ten month mark we are facing some new challenges in their development. For awhile now we have noticed their head shapes changing. Reid more noticeable than Grant. Reid loves his back and even though he can roll over and sit up he prefers to play on his back.  He also hated turning his head while sleeping. All this together has caused a flat spot on his head that has been getting bigger. For the past several months we have been working on neck stretches and repositioning while sleeping and more tummy time but alas his little melon isn't changing so we have decided to put him in a helmet. This will hopefully round things out. Grant's head shape is a little different. He may have craniosynostosis which is the premature fusion of one or more cranial sutures, often resulting in an abnormal head shape. We are seeing more doctors later next month to confirm and decide on his course of treatment which may include surgery and will likely end in helmet treatment as well. We are going through Cranial Technologies for this treatment.  The staff has been very helpful so far in answering our questions and very friendly. Most helmet treatment is not covered by insurance but we should be able to get a portion paid through reimbursement.  The upfront cost is $3,500 each. I knew having kids would be expensive but these little boys know how to spend some money. They're worth every bit and we are happy to do whatever we can to ensure a good start for them in their lives. Reid will be in his helmet for about 3 months 23 hours a day. Grant will be around the same but probably longer because we are waiting on starting his treatment.  The earlier the better is also the case with this kind of treatment.

Reid's before picture. I'll post pictures through the process to see how his little head is shaping up.

 At Cranial Tech before his digital scan. He had to wear this stocking while sitting in the middle of several cameras so that a 3D digital image could be taken of the surface of his head. He did fabulous and sat very still so it was over rather quickly. We'll go back in another week to pick the helmet up and then return every two weeks to check the progress. 

I've been struggling with guilt over this situation wondering what I did wrong. I think most mothers going through this have similar feelings but ultimately it doesn't matter how this happened but that we are trying to fix it.  I don't want to have any regrets later and so we're going to get through this challenge the best we can. If motherhood has taught me anything it is patience. Not the kind of patience you need to raise two infants at the same time but the patience to trust in the Lord and know that the blessings and desires of our hearts come in his time. Of course I wanted my pregnancy, their birth and first year to be as normal as it could be but I'm learning and growing so much more through the challenges we've faced so far. I have faith and know that we are extremely blessed to have them and these minor challenges. I have two happy babies that eat and sleep well, and love each other and us.  I'd say we're pretty lucky.

Tuesday, May 4, 2010

Flashback (part 1)

The company I use to work for was always a big supporter of the March of Dimes. We raised money and participated in the city walk, and even held a mini walk at our school.  It was always a fun event but I never really thought about how premature birth would change the experience of having a child or how much it affects the lives of so many families. This Saturday we will be walking in the march for babies to celebrate our boys. We feel incredibly grateful that our little guys survived their experience and have been asked to share their story.

Friday July 31st we had enjoyed a nice meal with our friends the Harmans and were about to enjoy a movie at their house. My water broke  in their bathroom and I started bleeding. I called the doctor and was told to come to the hospital immediately. We went home and changed and I told Clay to bring a book because we might be there awhile. I wasn't in any pain and I didn't think things were too serious.  That changed when the doctors started talking about prepping a room for surgery and calling in specialist. Baby A's water had broken and I was losing a lot of blood. Everyone was moving around so fast and talking about so many things, checking me, checking the babies, and I kept thinking I'm 26 weeks there is no way I can have these babies tonight.  They sent in a neonatolotist to discuss the survival rate and what we could expect if our children were born at 26 weeks.  They had an 80 percent chance of survival.  What that really meant was staying alive.  There were few guarantees about having a good quality of life.  They were at high risk for severe brain bleeds, mental retardation, and many other complications.  They would have to stay in the NICU until their due date three months away, maybe longer.  I have never been so scared in my life.  I felt so helpless and all I could do was pray they could find a way  to keep them inside me.  

I was given my first steroid shot to help the babies' lungs develop. More tests were run and after another ultrasound the doctor decided Reid had enough amniotic fluid to keep him safe. My blood work looked okay so it was decided we would hold off on the C-section for the night. There was a 75 percent chance they would be born within a week but the doctor had hopes that with bed rest I might be able to keep them in longer. 

We spent the night calling family and wondering what was going to happen. I've never had a sleepless night like that one. We had waited for these babies for seven years and I couldn't think about anything happening to them. The next day I was able to get my last steroid shot which was good news for the babies' lungs. The boys were constantly monitored and I couldn't move for fear they would not be able to pick up the heart beats. I'm grateful for all the friends that visited during that time and tried to keep our minds off the scary reality. We lasted four days like that. Me in bed not moving, being checked every 30 minutes while Clay went to work, visited for lunch, then back for the night after work.

On Tuesday evening I started having contractions I couldn't feel them at first but the nurses told me I was having them every few minutes. They got progressively stronger and closer together. Around 2:00 am the doctor came in and said it was time. They were certain the contractions weren't going to stop, I was still losing blood, and the babies were coming whether I was ready or not. I had made it to 27 weeks and prayed that little time would be enough to help my babies survive. They left the room to prep things and I called to Clay to wake-up. Filled with worry, doubt, and more fear than I have ever felt I remember saying "They're coming now!"  Clay changed for the operation and they wheeled me off around 2:30 am. I remember being very cold, shaking a lot, and not sure of what was going on. It was very fast from the moment they laid me on the table to when I heard that first cry.

    Baby "A" - Reid Alexander                       

Baby "B" - Grant Benjamin

They had the tiniest cry I've ever heard. If you weren't paying attention you would have missed it. But I heard it and it filled me with unexplainable joy. It was the best feeling to hear them as soft and weak as they were. I actually had children and they were, for the moment, okay. The nurses brought each one over for a quick look. I couldn't believe how small they were. These tiny little dolls looked so helpless being taken too early from what was suppose to be their home for three more months.  They were immediately taken away to the NICU while Clay followed after them.

I seemed to do well during the first few hours of recovery. The nurses seemed very impressed by the control I had over my legs and body as I walked to my new bed.  They wondered if I was feeling any pain. I was. Those first few hours were pretty intense but out weighing that pain was my overwhelming desire to see my babies.

Flashback (part 2)

I was very anxious to see the boys because I couldn't quite remember what they looked like. I had had such a brief glimpse and I needed to see them again. I had Clay take lots of pictures while I was in the recovery room so I could see their tiny little faces. The nurses finally let me go to the NICU about 5 hours after the birth. We first had to scrub in at the sink for 3 minutes. We would have to do this every time we left the NICU and returned. Our hospital bands were checked and Clay led me back to our boys' isolettes.

I saw Reid first. This tiny little 2 lb. 1 oz. doll hooked up to wires and monitors, he almost looked fake. He had probes attached to his skin to monitor his heart and respiratory rate, his body temperature and one attached to his foot to monitor his oxygen level and breathing. These were all attached to alarms which would sound when they would reach a certain level. He was also hooked up to an IV because they were still too young and weak to digest food. He started out with a nasal cannula to deliver supplemental oxygen.

As scared as I was to see all this connected to my baby I was overjoyed to see my little boy alive and for the most part okay. He did not have to be intubated nor did he have any brain bleeds. Already major accomplishments for such premature babies. As I touched my hand to the glass I cried. But not because they were hooked up to countless wires or because I knew we would spend months here with many ups and downs but because they were finally here and they were mine. I knew some day I would get to hold them close to me, take them home, love them, and have the family we had been dreaming of.

I had the same flood of emotions when I saw Grant. How lucky was I to get to experience motherhood for the first time with two children?  Grant had his older brother beat by an ounce in weight and an inch in length but he looked just as fragile and helpless. Let the count down begin I thought. We were ready to be there for them however long it took to bring them home. And that's how our 10 week stay in the NICU started. We learned to take joy in the little accomplishments and push through set backs with faith that it wouldn't be like this forever.

They were first fed by a gavage tube  They would be fed 5ml of milk through their nose or mouth and after an hour the nurses would check for residual milk in their stomach. It was heart breaking when they would find 4 ml residual. But of course their stomachs learned to digest the milk and by the end they were drinking 80 ml (about 2 oz.) from a bottle.

They each had to take a turn being hooked up to the CPAP (continuous positive airway pressure). Reid wore his the longest for about two weeks. Grant was off of it after 4 days. They received phototherapy for jaundice. The little sunglasses helped protect their eyes during this treatment. They did this for about four days.

Many premature babies have problems with apnea where they stop breathing for a moment or two. Their biggest challenge was overcoming this and remembering to take deep enough breaths all the time to supply their lungs with the necessary amount of oxygen. Hearing all the alarms go off when they didn't was the scariest thing for us.  This mostly happened when we held them so it was especially frustrating.  We could only hold them for a limited amount of time and when most of that time was spent trying to get them to breath we would leave sad and emotionally drained.

First time getting to hold the boys. They were 6 days old and I was allowed only 15 min. with each once a day. One of the hardest things to get use to was that babies that premature don't do well with the rocking or stroking their skin. It didn't feel natural to sit their without rocking them or trying to comfort them when they got upset. Sadly in the beginning the easiest thing for them was just to be put back in their isolette until they were more stable.

They stayed in separate beds for about 7 weeks. When they reached 4 lbs. and were able to maintain their body temperature with only blankets and one layer of clothing they were put in an open air bed together. They slept well next to each other. I took comfort in the fact that when we weren't there for them they at least had each other.                               

First picture with no wires or tubes. They finally learned how to breath on their own and we got to see what they looked like (Reid above, Grant below).

And now our tiny little guys are not so tiny any more. They've grown like crazy the six months they've been home and we're so happy to have them!