Michelle does not have access to the blog anymore. I will be posting her update emails.
“Even miracles take a little time” –Unknown-
Friends and family,
Shane has not had the chance yet to update the blog but eventually this message will appear online as well as my email earlier this week.
It has been a very, very long week. Jonah just came out of his third surgery and each one has been a success. Now our biggest hurdle will be to keep him infection free for the next several weeks while he heals. With each surgery a baby this small is at a higher risk for infection and sweet Jonah has already undergone three with at least one to two in his future.
Wednesday they fixed Jonah’s open PDA valve near his heart. Recovery was difficult and our sweet boy was in a lot of pain. Yesterday was a hard day for me as a mother. I’ve learned quickly how to tell when he is in a lot of pain, even at his tiny size. He was so unhappy yesterday morning, thank goodness the nurse on duty pushed for a medication drip so he would have constant pain meds. It was the best thing she did because as soon as everything was set up Jonah began to finally relax. These small babies have a hard time recovering from surgery and are very unstable for the first 48 hours in their oxygen and blood pressure needs. I also found out that the PDA surgery is one of the most painful surgeries infants can undergo because of everything that is involved with getting to and closing that valve near the heart so I am sure that was affecting how Jonah felt yesterday.
I was also frustrated yesterday because they were supposed to do his head “reservoir,” which he has been desperately needing to aid with the bleeding in his brain. The nurse called me at 7:40 AM to let me know I had 20 minutes to get to the hospital and when I did the surgeon called and said because of an emergency surgery Jonah’s surgery had been put off. That morning he was in so much pain that I was a bit upset because the surgery had been put off (at the time no one had really told me why the surgery had been canceled) so I pushed until I finally got a physician in to assess Jonah and explain to me what was going on. I was glad I pushed for it because he increased the pain medication and did a few other things to help comfort Jonah as much as possible including ordering “cautious handling” instructions for the nurses (basically meaning nurses are only to touch him on an as needed basis to reduce his level of stress and discomfort).
I have learned, through my own problems conceiving the boys, that you have to advocate for yourself. We don’t live in a world of proactive medicine so if you need help or attention you have to fight to get it. Sadly this is just the way that it is. So finally after pushing for a doctor to come in and look at my son I got some answers.
Jonah at least slept well yesterday and last night, he did have some rough spots but overall at least he looked peaceful to me which put me at ease.
His surgery this morning went well and the reservoir should start helping with his swelling, pressure and drainage of the blood that has been building up in his head almost since birth (his bleeding started on day three). It would be such a miracle if he was able to resolve all this bleeding on his own without a shunt but the neurosurgeon did say that at this age it is a small group of infants with grade four bleeds who heal on their own without a shunt. We still have hope and believe though that it could still happen and if not, we are prepared for the shunt surgery.
All in all I am praying little Jonah will finally have the relief in his little body that he needs in order to really heal, grow and do all the things he needs to do so he can come home to us.
Yesterday Noah also was having more P.I.E. issues with his lungs (Pulmonary Interstitial Emphysema), this is caused basically by long term use of the high frequency oscillator which his lungs are continuing to require to help him breathe. I remember calling Wednesday morning to get glowing reports from the NICU physician to calling that night and finding out the afternoon x-ray was showing the emphysema symptoms in his right lung and that they were collapsing it again in order to allow it to heal. Yesterday morning when I called to check on Noah I made the mistake of asking the nurse how his morning x-rays looked and she told me there was no change and I immediately went into panic mode as this is a very serious issue and if it doesn’t clear up it can cause serious, serious problems….even more so then the bleeding with Jonah. A few hours later Shane called me to say he spoke with the doctor and that the nurse and misinterpreted my call, the emphysema was gone, yes…his lungs are still immature and needing development but the emphysema was gone. Needless to say, I was very unhappy with that nurse!
I also started talking to Jonah’s nurse yesterday about getting Noah down here. We were talking about Noah’s still open, yet very small, PDA. Everyone here, from physicians to nurses are saying that his open PDA will be an eventual cause for surgery. So Shane and I discussed and we are making it known to the physicians in Bakersfield that as soon as Noah is on a conventional ventilator we want them calling Fresno to get Noah down here for his PDA and so ultimately the boys can be in one place. Yes, two hours away will still be a challenge but at least both boys will be together.
I will see how long this takes to happen but we are pushing for it sooner then later as living here in Fresno comes at the cost of me not seeing my baby Noah. I know that I am meant to be with Jonah because of his critical situation but I feel like I am missing out on so much with my Noah and all I have for information are phone calls (and we can see from yesterday this can be a problem!)
Shane went home Wednesday night but plans to travel back down this afternoon to be with us. My father did get in late Wednesday with my brother. It has been nice to have them both down here and it is good to have three generations of “Coy” around (Jonah’s middle name is after his grandfather and uncle). It was really good for my brother to see Jonah, he has been really worried about my boys and I’m glad he got to come down. He is a fireman and has EMT training so he was following a lot of the assessment procedures the nurses would do with Jonah and he was amazed at how “small” everything was.
It really is amazing what medicine can do for these babies, all in all most at this gestation only have a 50% chance of survival (I can finally say that without breaking down in to tears at even the thought) but both our boys have made it to 4 weeks and are in a group that has a better chance of making it home. Also, several of the nurses who have worked with Jonah keep saying how hard he fights and what a fighter he is. In fact, just last night his nurse was saying babies his age have the best chances at survival when they come out fighting. I hear this about my Noah too, God has given them fighting spirits and no matter what they are miracle babies and just as the quote says above, miracles take time to happen and my boys will need their time to grow but I really believe that the love and prayers that so many of you are saying for them are keeping them alive. I know Shane and I have an amazing amount of love for these little ones and we want them to have every chance at life. It is hard to know that their future may have its challenges and that maybe one of them medically may not be in that normal group of children but we do know and I have personally felt, that each has a mission and God has sent them here for a certain purpose. We also know that there is still time for many, many more miracles and both still have an opportunity to make it and live life just like normal little boys would. Either way, they will be loved and hopefully we will be able to do all that God expects of us as I believe he has entrusted us with two special little boys.
Keep praying, we still need a lot of miracles and they have so far to go but they have come a long way.
We are sorry we cannot answer every phone call and email that you send us but we do know you love us and support us and for this we thank you. We are blessed in family, friends, and the gospel of Jesus Christ and when all is done, that will be all that matters.
Love, Shane and Michelle