Saturday, January 24, 2015

The Honeymoon Phase

When I was in the hospital with Colin, the doctors kept reassuring me that I was going to have a healthy baby.  Since I had reached that critical 24 weeks gestation when my water broke, they felt that his lungs had developed enough.  So, I wasn't too worried.  Now I'm wondering if they just told me that to keep me calm. When he was born, we heard him cry in the operating room and it was the most beautiful sound.  A doctor called while we were in recovery and told us that his lung had collapsed on the way to the NICU and they put a chest tube in to re-inflate it. This was really scary.  I finally got to see him around 1am on the 26th (nope, didn't even get to see my baby the day he was born).  There were so many wires and tubes, but I had a calming feeling that he would be alright.  

The very next evening, Colin had been extubated and was on a high-flow nasal cannula, which is very little support and over the next week, he slowing started having stuff removed.  We were thrilled that he seemed to be on his way to 100% health and started making plans to bring him home.  

Around the second week of January is when things started to change.  I remember I got a ride to the NICU that day from my friend Krista, whom I had met on the ante pardem unit and her son, Rowan, was also in the NICU.  I walked into Colin's little room that day and saw that he was back on high flow and I immediately started crying, this was a step back and I had a feeling that something was wrong.

Colin had atelectasis (a word I googled hundreds of times, which means collapsing of the lungs) and digressed rather quickly over the next couple of weeks. I was heartbroken and terrified, especially when Colin was put on the oscillator ventilator after his oxygen need was up to about 80% and his CO2 was around 100 (should be around 50). I thought that Colin was not going to make it, there is no higher level of support than the oscillator. This was about the time I went into silent mode. The only people I would speak to were Matt, my parents, and his parents, I couldn't bear having to explain to people what was going on with Colin, I didn't really want to believe it. 

He ended up on that machine for about 3 days and was then switched to the conventional vent, this made me feel a bit better, but I wanted him back to the nasal cannula and room air ASAP. That didn't happen, in fact, they were having a very difficult time weaning his vent settings and then he just got stuck. It was at this point that they decided to transfer him to Children's Hospital of Pittsburgh of UPMC. Again, I was terrified. They were planning on doing a bunch of tests and scans and I was afraid that they would find out that Colin had something that wasn't treatable. It was crazy to think that, I know!

So, Colin had a CT Scan and PFT's (Pulmonary Function Tests) to try to determine the damage to his lungs. I remember sitting in Colin's room waiting for the doctor to come in and talk with us about his results and just praying that everything would be Ok. The doctor came in and gave us news that I was thrilled to hear: "his lungs don't look terrible". Praise the Lord! It was the best news we'd heard in a while. The words they kept using at Magee Women's Hospital were, "Pulmonary Hypoplasia," and that is really bad, according to my enemy at the time, Google. The doctor told us there was no sign of hypoplasia, again, praise the Lord. And the PFT's showed that his lungs responded to bronchodialators and steroids, so they started him on those.

Over the next couple of weeks, they had Colin weaned off oxygen and were able to wean his vent settings. Then came time to try to extubate, and we all know how that went. 

I am amazed at the work that God has done in me over the past year.  Looking back on how I responded to Colin's situation, I'm embarrassed.  Instead of shutting people out, I should have reached out, I needed all the support I could get.  I needed people to come and pray with me and just be there with me.  I should have shared my story with as many people as possible so that they could have been praying more specifically.  I'll never know exactly the reason that all this happened, but I do know that my eyes have been open, my heart has been changed.  My perspective on life is so much different.  And I thank God for that.  He has also given me the most amazing little boy I could have ever asked for.  

We learned later on that this is a common occurrence, for premature babies to seem fine for a couple of weeks then just crash and burn.  They call it the "Honeymoon Phase".  I often think about those couple of weeks, where we thought everything would be OK and I get a little sad.  How different would our lives be if he hadn't gotten worse?  I know I shouldn't think like that, but it creeps in there.  Then I think about all we've learned and how many amazing people that we've met and how many lives Colin has touched, and that makes me so very happy.

Friday, January 16, 2015

An Update and a Promise

Wow, I really need to be better at this whole blogging thing! My apologies for taking so long to post. I figured I would do a quick update on Colin, but I am also working on a post that explains what happened between the 2nd week of January and the 2nd week of February last year, since I sort of went silent.  

Colin has been doing well, he is on room air all day, using the Passy Muir Valve (speaking valve) and minimal oxygen at night.  We have been having some issues with what is called Pseudomonas, which is an infection in the trachea and is very common among people with trachs. We do a round of antibiotics, it goes away for a short time and then it comes back. The docs have decided to do a 28 days on/28 days off of the antibiotics during the winter since we're having such an issue with it.  It just causes a lot of extra secretions and some alarms at night.  

Colin had his one-year check up on January 9th and the doctor was very pleased with his growth.  He is on the charts for weight, length, and, of course, head circumference.  He had to get 5 shots, which was not fun at all, poor babe. 

He still isn't crawling or pulling himself up, his PT, Abbi, says that he is just being lazy and that he CAN do it, he just chooses NOT to do it.  Stinker. The same with eating, he is making huge strides with his oral feeds, but there are days he just chooses not to eat by mouth.  He is actually starting to eat almost a third of a container of baby food, and also enjoys yogurt.  He has six teeth, two on the bottom and four on top.  He is starting to look so much more like a little boy and not a baby, which makes mama a little sad.

That same day we had BPD (Bronchopulmonary Dysplasia) Clinic, where they basically check Colin out, discuss nutrition and make changes to his diet, and we meet with a Feeding Specialist.  They decided to switch Colin from his Enfamil Enfacare formula to Pediasure, which our insurance will cover and our equipment company will deliver, saving us a lot of money, praise the Lord! (Side note: we also got approved for BCMH, which is a secondary insurance that will help us cover the costs of his medical bills and the co-pays for his medication, which are hundreds of dollars) The feeding specialist was happy with his progress and gave us some tips on how to re-introduce liquids, which I think will be a very difficult task.

He has said his first word, which was "mama."  Daddy wasn't very happy, but like I explained to him, I'm home with him all day, do you really think I sit here and say, "dada, dada"?  Nope! He has also learned how to manipulate me into rocking him to sleep at night, which I really don't mind.  His favorite toys are not toys at all, but his tubes and cords and, of course, my phone.  He also loves watching Octonauts! 

We feel so blessed to have Colin as our son and he has brought endless amounts of joy into our lives. He is so much fun and we look forward to what God has planned for us this coming year! 

I promise to be better at updating the blog, I know some of you love seeing pictures and getting updates on Colin.  Thanks again for all the love, support, and prayers, we have amazing friends and family.  Love to you all!!