What happened next, no one saw coming. However it was the nurse who is holding her for this picture that we all believe saved her life. The hours after Jaedynn's birth soon became a frightening vigil and the doctors struggled to identify the cause of her problems.
We had done a planned C-section because she was in a complete breech position and I had a low amniotic fluid level, which made it too risky to attempt to turn her. However she was a healthy baby with no complications during the pregnancy. About ten hours after her birth, the nurse that helped deliver her discovered there was a problem. Jaedynn was rushed to the NICU. The nurse had found a very huge discrepancy in the blood oxygenation level flowing in her arms, compared to that pumping through her legs. Very little oxygen was getting to her legs.
The next morning they were still running tests to try to figure out what had gone so terribly wrong. A whole chamber of my daughter's heart was not functioning and her lungs were under a great deal of stress causing the pressure in them to sky-rocket to life-threatening levels. We were terrified but I believed we had not come all this way to have our miracle baby just to have her taken away.
In the days to come we learned that the doctors believed somehow she had suffered a heart attack resulting in the failure of the function of a chamber in her heart. They were unsure if she would regain the function of her heart. The only thing we could do was wait and pray the treatments helped.
What we did know was the Tuesday of that week, when I had gone in for my normal twice-a-week monitoring of Jaedynn's activity level and to check my amniotic fluid level as a precautionary measure, she was still doing well and not showing any distress. I had never gone into labor because of the planned C-section, so no stress was put on her by my body. Nor was there anything that occurred during my C-section that was out of the norm. We all felt that this was a freak occurrence.
In the weeks that have followed, Jaedynn's heart regained function and it was as if the heart attack never happened. Her lungs have been slower to recover. She has slowly progressed from having a ventilator breathe for her with medicated air, back to being able to breathe room air with an oral medication.
Now the biggest struggle we are currently facing is her ability to breathe at a normal respiration rate. She also needs to develop the ability to take food in without inhaling it into her lungs. She has had to be on a feeding tube since she was rushed to the NICU on April 11th. She is also having difficulty keeping food down. It keeps coming back up.
The rate at which she breathes is so high that there is a high risk of her aspirating when she eats. I was told that a full term baby should have a rate of 20-60 breath per minute. Jaedynn can have multiple times within a few hours where her rate is up in the 150 range. Doctors feel that with time and continued care at the NICU these rates will drop and she will hopefully be able to take full meals through a bottle in the near future.
As for the throwing up, we are trying a medication to see if it helps. However they are saying she will most likely need to be fed tiny amounts every two hours and burped frequently until she can outgrow the reflux.
The good news is that we do have insurance. The bad news is that I will not be able to go back to work for quite some time. Money will be very tight for us on just Robin's salary. This means that we are between a rock and a hard place when it comes to paying for the hospital and doctor co-pays. We have currently have been quoted from our insurance company that we are looking at roughly $5,000 in expenses we will have to cover personally. Due to the fact that Jaedynn is still in the hospital and the insurance is giving us an "educated guess", this is not a solid number. It could go up or down. We have made a commitment that if the amount donated is greater than our actual out-of-pocket expenses, we are going to donate the extra funds to another child in need on the gofundme.com website, or we will donate the funds to a child-care charity of our choosing. We will be sure to disclose what happens to any extra money on our funding page.
Thank you all for your continuing support as we take this journey into parenthood. We will keep our story updated here when we can but please feel free to follow me on Facebook for more updates. We sincerely want to express our gratitude to everyone for donating. Every dollar is another burden you remove from us and we thank you.
From our hearts to yours.
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