The four of us went to see Sydney today, Labor Day. She is 2 weeks and 1 day old today! When we were walking out, we celebrated that. At the same time, I couldn't help but think that she is still only 26 weeks "old". Because she is still so young, I'm a little down as I write this blog. This has felt like the longest month of my life and we have at least 3 months more to go. It's so hard to visit for 30 or 45 minutes and then tell your child goodbye for the day. It's almost as if I'm not really her dad. Like she's not mine yet or something. The nurses that take care of her, know her so much better than I do. It's frustrating and sad.
BUT, and this is a big BUT, she's still here! She's still alive! For that I am forever grateful. She just has a long way to go.
The last time I blogged, Sydney had two major hurdles to overcome. The first, a sonogram on her brain. This was a big deal. As the doctor first told us, the results of this sonogram could vary from nothing, to a major bleed that would basically cause so much neurological damage that she would not survive. Obviously, Erin and I were very nervous about the results of this test. Well, on Tuesday morning of last week, we got some great news! Erin spoke with Sydney's doctor, Dr. Maio, and he said that he did not see ANY brain bleeds at all! Praise God for this news! He said that typically, these bleeds occur within the first week of a preemies life, and as Sydney's came back OK at 9 days old, they have no plans to do another brain sonogram at this time. This was such great news!! Praise you Lord!
The other hurdle was the PDA or "patent ductus arteriosus" was still open and should be closed. **Let me take this opportunity to tell you that having a child in the NICU and having to communicate with the nurses and doctors is almost like learning another language. We've learned what blood gas, satting, desat, PDA, mils, etc.. all mean! They throw these words and acronyms around like we've had 10 years of med school! We have to say, "Will you please explain that to me like I'm 4 years old?" We're getting better, but we still have a lot to learn. I fully expect that once this all over, Erin will go back to school to be a nurse in a NICU.** At any rate, the PDA is basically a duct that we all have that closes shortly after we are born. Well, Syd's is not closed and this is causing problems with her lungs. They medicated her for this, and did another echo cardiogram on Monday of last week. The doctor told Erin last Tuesday, that although the PDA has not closed fully, the hole had gotten smaller. This was great news as well! We were and are very thankful that both of these major hurdles were mostly cleared. Sydney is such a fighter! I'm so proud of her!
However, when Sydney was born, they told us that we would be basically on the longest emotional roller coaster ride of our lives, and boy has that been true. Overall, Sydney is doing great. She is still amazing the doctors and fighting so hard. Praise God! Unfortunately, she is still having trouble with her lungs.
She has had mostly good days, but this week Sydney has regressed a little bit on her ventilator. Originally, she was on a "jet" ventilator the day she was born. And after just one day, she was taken off that and put on a less invasive vent. We were thrilled! We had heard that babies had stayed on jet vents for months. So for Sydney to have been taken off it after just one day.... WOW! What a praise! She was doing great on it until this week. And unfortunately, they have had to increase the frequency of times this new vent "breathes" for her. We were told that it was a normal part of the process "considering her size".
During our visit today, the doctor told us that unless she starts breathing better, he'll have to put her back on this jet vent.......And the roller coaster ride has begun... In fact, when Erin told me this news, my stomach felt like your stomach feels when you are slowly climbing to the top of a hill on a giant roller coaster. You know, that part where you can start to see the people in front of you disappear, and you know in just a few seconds it will be your turn... Sick. Nervous. Anxious. That's how I felt. We even heard the words "chronic lung disease" today. He did tell us, AGAIN, that this is "very common considering her size". I bet I've heard that 35 times since she's been in the NICU. I'll take "very common" over "unusual" or "uncommon" all day though, so I'm not complaining.
So, here we are. Sydney has a big week in front of her. Another couple of hurdles to jump. They will do another echo cardiogram on Tuesday, to determine if the PDA is what is causing the breathing problems. If it is, the doctor wants to do surgery. If the PDA is not what is causing the breathing problems, the doctor will most likely put her on the jet ventilator again.
With these hurdles in front of her, Erin and I honestly didn't know what to pray for! Surgery? No surgery but back on the jet vent? Both? Neither? So, of course we came to the obvious conclusion, which is what all of our prayers have been regarding Sydney since the beginning. Before she was even conceived!! God's will. Pure and simple. I know that's cliche and easier to say than mean, but we MEAN this. Whatever God wants to take Sydney through to get her well, then that's what we want. Our prayer is for God to grow and strengthen Sydney's lungs. That's it.
I don't want to sound too doom and gloom here. Sydney is really doing great "considering her size". She does have her ups and downs, but overall, she's really exceeding everyone's expectations and we are very, VERY thankful for that. She's eating very well. As of today she is up to 11 milliliters every 3 hours and tomorrow it will be 13. I know that doesn't sound like a lot but "considering her.." never mind! It's a lot for her OK?! We just have to be patient and continue to pray for God to put His hands on her and heal her like no medicine or doctor can. She is in His perfect hands as she always has been.
Please pray with us, as the Lord continues to grow and strengthen Sydney. We appreciate you all so much. We have truly seen our brothers and sisters in Christ step up and serve us in ways we could have never dreamed. We are so blessed to have such a wonderful church family. I honestly don't know what we would do without you.
Praying For One More Day,
I love you so much Sydney. You are doing great! I can't wait to read this all with you someday. Keep fighting! I'm so proud of you.