Wednesday, August 24, 2011

Veering off the tracks...

A nurse told me the first night I saw my boys that the NICU is like a roller coaster. I believe over the past few weeks especially I have experienced the truth behind that. My boys were (and still are!) both doing so well that I was able to see the finish line!! They were both gaining weight well. Breathing well. Keeping their temperature well. Everything was lining right into place! Then the roller coaster kind of decided to jump the tracks for a few days. Literally. The emotional NICU coaster literally jumped tracks from the NICU baby coaster into a whole new one that we have not even begun to ascend. I had a really hard few days and was not really prepared to talk about it, but after reading up on things and mentally processing a lot, I am not so terrified of the future and ready to face what the years to come will bring.

I'm sure anyone reading this now is wondering what the heck I am talking about. On Friday, August 19 my parents came to our house to take care of Athan while Matt and I headed off to the hospital for the boys' 2pm bottle feedings (they are trying their hand at drinking from a bottle all on their own!). We got into the NICU and Dr. T gave us the updates for the day. Dax had been off of any oxygen help for a few days and had begun having a few oxygen D-sats again so they put him back on it and Dr. T ordered a chest xray to make sure he did not have fluid in his lungs or any collapsing of the alveoli. Good news, his lungs look great! Then Dr. T says that when we have a second, he noticed something in the xray that hadn't been remarked upon before and he'd like to show us. I thought nothing of it. We had a few moments with the boys and then went and sat down with Dr. T at the computer. He then showed us Dax's chest xray and explained where his lungs were and his heart and told us that both looked great! Then he continued on to looking at his ribs and spine. He points out that it appears that 2 ribs look to be fused together and at least one vertebrae (maybe two) did not properly develop. The below xray image is NOT Dax, but it shows kind of how his vertebrae look (though not in 2 places like the image shows).
Dr. T explains that he would like our permission to send a referral to Shriners hospital for Dax to be seen by a specialist once his NICU stay is done. As he said this all I could think about was the commercial for Shriners hospitals where the kids are all singing "Imagine" by the Beatles. I always viewed Shriners as a place where only really sick kids went. I NEVER expected that my child would be one of those really sick kids! Matt and I spent another hour or so in the NICU with the boys and I spent the whole time trying not to burst into tears over the news I had been given. How was it that everyone seemed so calm over the situation?

We left the NICU and on the way home I told Matt I did not want to tell anyone about the xray until I had more time to process the information. Basically, I needed to have an emotional mommy breakdown first and I wanted time to myself to have it before I started talking about it.
We got home, gave Athan big hugs as we always do when we get home, thanked my parents for taking care of him (I'm so lucky to have them!) and said bye to Grandma and Grandpa. I spent the rest of the afternoon kind of out of it and finally decided later in the evening that I had to tell someone. I was not going to be able to accept it and process it until I got it off my chest. If I told someone else, it would all be real, I could begin to accept it, fear it and start facing it head on!

I still didn't want to talk about it with someone so I decided to explain it to my mom through a facebook message. As I began typing out the explanation I finally let out all the emotions I had been balling up inside and trying to hide from myself. The fear finally came to me. It was a huge relief. Fear is a completely natural emotion, especially for a mother forced the face the fact that my child had a developmental deformation at birth. Fear is what kicks us into gear and motivates us to act and do everything we can to improve our situation. Fear is fight or flight! I am a fighter (I learned it from my amazing Grandma!) and my 3 boys are fighters as well. Flight was never an option for me, but as I let myself be emotional while typing out my explanation of what was going on, I could feel the fight in me begin to kick in.

I finished typing my knowledge of what was going on with Dax's spine and sent it to my mom only to realize a few minutes later that she only got the last part of the message. All the emotions I had put forth to explain everything were simply lost in the facebook cyberspace abyss. Now, based on the little bit of information my mom got from the message, she only knew something was wrong and had no clue what. Of course, she immediately began calling me. I wasn't sure I was ready to talk about it out loud yet and I ignored her first million calls (it really seemed at the time like she called me 20 times within 5 seconds). Finally I answered the phone and began to explain everything. Out loud. And I really let it out.

I remember back to when I was maybe 11 or 12 and fell while riding my bike at a friends house. I scraped up my knee really badly. I even have a large scar now from the fall. I remember that I wanted to be tough and not cry over it. I don't recall it even hurting that bad. I scraped my knee up and it was ok. My friends mom drove me home and I was fine the whole way. However, as soon as I opened the door and saw my mom, I burst into tears! It's funny how sometimes all a girl needs is her mommy to be there to let it all out. That is exactly what I did as I explained everything to her. I let it all out. And after I felt so much better and completely ready to do whatever I needed to do for my baby boy. My mom, despite the fact that I know she herself was devastated by the news, stayed calm and explained that there is a lot they can do for Dax and that everything would be fine and Dax would be fine.

After speaking with my mom, I began googling spinal malformations to try and gather information and I was so saddened to see some things that sweet innocent little babies have to suffer through. As I saw how bad some babies situations are, I realized how grateful I am. There are many babies out there who are far worse off than mine. Don't get me wrong, I wish every morning, noon and night that my children did not have to endure all that they are going through. But I believe that there is always much to be grateful for in the world and I am a firm believer in truly appreciating all that we have been given in life.

Since Friday I have learned more about Shriners Hospital. I realize now that it is for any child with special medical needs and not just extremely sick children. I look forward to getting my first call from there and getting a chance to speak with a specialist about everything that my beautiful Dax is going to need to grow happy, healthy and strong. And I look forward to giving him all those things. From what the pediatrician (who is not an expert in these things) has said. His abnormal vertebrae can likely be fixed through surgery and it is not affecting him at all right now. Essentially, it is likely to cause something like severe scoliosis later in life. Can't wait to talk to a specialist to find out our specific plan of action!

This is my family. A year ago when Matt and I decided we wanted another baby, we never expected our little family of 3 to become 5. We never expected to have 3 boys. We never expected to be preemie parents. And we never expected that one of our children would ever need to be referred to Shriners hospital. However, this is where we are. I am so grateful for the fact that my little family of 3 is now a not so little family of 5! I am so grateful that my boys, who entered this world way before they needed to, are growing and getting healthier day by day. I would give anything to take all the pain and trauma my boys have endured away. But I am so grateful that they have endured it and are beating it day by day. My children are the most amazing little beings I have ever met and I could not imagine my life being any different!

Thursday, August 11, 2011

They're growing so fast, before we know it they are going to be "newborns" graduating from the NICU!

I got to hold both of the boys together for the first time today!

The boys are getting huge! As of 8/10 Daxton weighed in at 3lb, 6.4oz and Trev at 3lb, 4.4oz. It is interesting to look at them now and think, "My goodness, they are getting soooo big!" Then I think about it and realize that they are still so tiny and less than half the size Athan was at birth (7lb, 3oz.)

Trevyn Update

Last I updated, Trev was getting an MRI for an enlarged ventricle. I am very happy to report that the MRI came back showing that everything is normal!!! While his left ventricle is larger than the right, they are both still within normal parameters and of no concern, though we will still continue to monitor it in the upcoming head ultrasounds. That being said, I looked up some information about people who are dominant with the left side of their brain and found this...

Yesterday in the early morning the Dr. took Trev off of the Oxygen... completely! It was quite exciting! My sweet little boy did so well for so long. However, by about 5am this morning he decided he was a little tired of doing all the breathing work on his own and they needed to give him the nasal cannula once more to keep his O2 saturation levels good. We will try again in a few days.
And now I will leave you with a video of Dax enjoying his zoogie (pacifier)!!!

Thursday, August 4, 2011

The Rollercoaster Continues!

I got a nice cuddle with both of my little ones today. Always makes my heart smile when I see how strong and inspirational they are! I can't wait for the day when I can cuddle with both of them at the same time! That day is probably not far off too!

Daxton Update

Now that Dax is off the ventilator, he seems to be breezing through everything! He has been off for almost 3 days now and on the high flow nasal cannula. With the cannula, there are 2 main settings to control, the O2 level of the air and the pressure (L/hr). Dax started out at 5L/hr when he first came off the vent and is now down to 3L/hr with anywhere from 21%-28% O2. So proud of him! The ventilator actually goes through his vocal cords so he cannot make noise while on it. Consequently, it can also damage the vocal cords. Until today I had yet to hear Dax's little voice, but I finally got a little angry growl/wine out of him. It was so sweet! The nurse told me that he has made plenty of noise while I'm not around and his vocal cords are no worse for wear after being on the vent. Yay!

Trevyn Update

Trev is continuing to do well. He has been at 2.5L/hr flow on his nasal cannula with anywhere from 25%-32% O2 for a while and seems to be just fine at that point. Since the boys blood vessels in the brain are so fragile when they are so young, the Dr's order head sonograms periodically to check for any brain bleeds. A few weeks ago, one of the head sonograms showed that one of Trev's ventricles was slightly larger than the other. Nothing too be concerned with immediately but something to keep an eye on. Well, a few days ago, they did a follow-up sono and found the ventricle was a little larger than before. There is no blood around it however,
which is a good thing but it could potentially indicate that there was a brain bleed at some point that went undetected. So, the Dr. ordered an MRI which Trev got to go on a field trip out of the NICU for today. We should know the results tomorrow and hopefully it turns out to be nothing!!!

Tomorrow would have marked the 32 weeks gestation point! Time flies! Here are some new pictures from today of the boys with their ducky and teddy. Remember, Dax is with the Duck and Trev with the Teddy.

Tuesday, August 2, 2011

Ducky and Teddy

So, as I may have mentioned in one of my first blogs, the first time I met the boys, before we had names for them, they were given the nicknames of Ducky and Teddy. These nicknames stem from the little gold sticker that secured their temperature monitor onto their tiny little bodies (pictured above). Dax had the Ducky, Trev had the Teddy. I hated the idea of referring to them as "Baby A" and "Baby B" but was still not ready to settle on their names yet, so Ducky and Teddy it was! Ducky soon became Daxton and Teddy became Trevyn. Now we have Daxton Ducky and Trevyn Teddy! I can't wait to scream "Go Ducky, Go Teddy!" at a soccer game when they are 12!

Well, I wanted to get a stuffed animal to take pictures of them next to as they grow so we would have a reference to see their progress. So, naturally I decided I needed a Ducky and a Teddy for their pictures. As I looked around, my requirements were that the stuffed animals were similar in size at around 12", similar in style, could be easily cleaned, and cute! This proved more difficult than I expected! It took me a while but I eventually found some I liked, they were just a bit bigger than I had hoped at about 15".

Now that I have the animals, I will be posting weekly update pictures of the boys with their animals respectively. That is, the Ducky will always be with Dax and the Teddy will always be with Trev. These first pictures are from 7/27. Enjoy!

My little boys are becoming babies more and more with every day. It is so amazing to watch! It is pretty interesting when I hold them to think that they are supposed to still be in my tummy and to think that this is what they would look like regardless if they were still there. There would have been two perfect little human beings in there growing, BIG! Every time they kick a leg I wonder, "Would that have been my bladder, or a rib, or eachother??!" I would have gladly welcomed every wonderful kick despite the discomfort I'm sure they would have caused.

A bit on Kangaroo Care...
Kangaroo Care - a technique practiced on newborn, usually preterm, infants wherein the infant is held, skin-to-skin, with an adult.

I have been getting a lot of opportunities to get my skin to skin cuddles with Trevyn over the past few weeks and have read a lot about the benefits. Interestingly, the benefits of Kangaroo Care were discovered by accident in a NICU in Bogota, Colombia. Due to limited funding, the NICU did not have enough isolettes for all the babies and in order to keep the babies temperature stable, the mommy would hold the baby skin to skin on her chest. They have since discovered the trend that generally, babies who receive kangaroo care are have fewer infections, gain weight faster, maintain more stable oxygen levels and are discharged sooner. While reading about the benefits I found one thing in particular very intriguing. A study found that, during kangaroo care, when a babies temperature would decrease, the mothers would subsequently increase to make up for the drop and thus giving the baby the extra heat they needed to warm up to a proper temp again. The bond between mother and child truly is amazing!!!

While I had ample opportunity to care for Trev this way, I was definitely lacking in my chances to really get that bonding time with Dax due to his ventilator and the fear he may extubate(remove the tube) himself while being taken out of his isolette. Only a few brave nurses were comfortable with the idea.
The main reason Dax was still on the ventilator was because he was having oxygen desaturations and bradycardia (drop in heart rate) that were so severe that he would lose all his color and almost have a grey tone to his flesh (bad and scary!). The ventilator was able to give him manual breaths when this occurred that allowed him to pretty quickly recover. However, as of 8/1 at 10am (38 hours and counting!) Dax was extubated and has been doing very well since. While on the vent he was having 1-2 bad color changing episodes a day. Since being extubated, he has not had a single one! I guess his severe bradycardia was his way of throwing a fit and saying "get this thing out of my trachea!!" He went from the ventilator straight to the nasal cannula which is the same machine his brother is on! He completely skipped the Si-Pap and CPAP machines and so far has not needed to step back to them. I'm so proud of him! Immediately after he got the tube out, he found his fingers and started sucking away at them! He must have been waiting so long to do that! Now, he loves his pacifier! Here is Dax showing off his new breathing gear! So proud of him!!
Along with yesterdays surprise of Daxton being extubated, my parents got a great surprise as well! The nurse let them both hold Trev! It was a great moment for all of us and my parents were, of course, very proud Grandparents!

My boys are really starting to chub up now! As of last night, August 1, Daxton weighed in at 2lb, 13.4 oz and Trevyn was 2lb, 12.6oz. they are going to be 3 lbs each before we even know it! I can't wait to pull out one of Athan's favorite outfits from when he was first born! I know my family missed this one!