Maya update - 12/16/10

Here is a quick update from Michelle -

After several scary incidents Tuesday night, Maya is still with us. The hospice nurse feels that it may be too strenuous for her to suck so she replaced Maya’s feeding tube. The nurses told J.J. and Erin that it could be a week to a month that she will still be with us. The really scary part is that she will continue to have episodes where she stops breathing but then starts again. They even said this could happen for as much as 15 minutes. I haven’t seen this myself yet, but I can imagine how completely awful it would be to see your baby stop breathing and turn blue. I know that everyone’s emotions are completely spent. We all said our goodbyes yesterday, and are happy she is still here, but scared about how to function knowing that one of the times she won’t come back. Please continue to pray that God would give J.J. and Erin the strength and comfort they need to care for Maya and also that they would know how to care for themselves. Pray that they would be able to rely on God and each other. I can’t imagine anything more emotionally and physically straining than what they are experiencing right now.

Thank you,
Michelle

Maya is home

(An update from Michelle)

Hello friends,

I'm sorry to keep you out of the loop for so long. The last few days have been such a whirlwind I haven't had time to think enough to be able to relay what is going on. Yesterday evening J.J. and Erin took Maya home. It was a very scary time for them and we are praying that God would give them peace and a feeling of knowing exactly how to care for Maya. The doctors really have no idea how long Maya's fragile heart will be able to keep her alive. All babies have a valve that remains open on their heart until about a week after they are born. When that valve closes Maya's heart will have to work much harder, and we do not know if it is going to be strong enough to sustain her. She is eating well and able to keep her temperature up, and K.C. and I have been able to hold her. Our kids haven't had that chance yet so we are taking them over to her house today in hopes that they can hold her and love on her. They have been pretty afraid of touching her because she is so small and fragile.

It is extremely difficult for all of us to understand how it is possible that such a beautiful and perfect little baby has absolutely no ability to survive. We are still trying to grasp the exact nature of her condition. We found out yesterday that additional genetic tests revealed that she has full (not partial) Trisomy 18. It is a miracle that she made it full term and is doing as well as she is given that fact. It is very, very rare for a full Trisomy 18 baby to survive to term.

Please continue to lift up J.J. and Erin's entire family in your prayers. Everyone is completely exhausted mentally, physically, and emotionally. We will be taking shifts over the next week so that someone will be there with J.J. and Erin at all times. Thankfully we have a very large family with most everyone in town, so it shouldn't be too hard to accomplish that. A hospice nurse will be checking in on them each day.

Pray that Maya's heart will be able to keep her little body alive at least through Christmas. Of course feel free to pray for much more than that. Every moment we have with her is a blessing. Pray that J.J. and Erin would be able to experience the joy of their little girl even through all the sorrow. Please also pray that God would give K.C. and I the strength we need to care for our children and J.J. and Erin even through our own sorrow. It is difficult when we have to be apart so much in order to care for J.J. and Erin.

Please know that you are not bothering us if you call, e-mail or text. Your communication with us has been a huge blessing and will continue to be as we deal with the imminent loss of our niece.

Blessings to you all,

K.C. and Michelle

Maya was born this morning shortly after 7:00am. Mother and baby are doing well. She is requiring oxygen, but is in her mother’s arms to stay warm. We do not have very much information yet. It will be this afternoon or evening before the test results come back. Right now we are all just enjoying taking pictures with her and loving on J.J. and Erin. Please continue to keep everyone in your prayers. There is still a lot of uncertainty.

The good news is that although Maya’s heart does have some problems, the cardiologist said that all but one should heal on its own and that the other one just requires medication. As long as the tests come back negative for Trisomy they will be able to give her the medication.

In a few hours we should know if we can rule out two of the most common types of Trisomy. Unfortunately they do not have test for all types, but anything that comes back showing that she doesn’t have a chromosomal defect is great news. Please pray that the tests come back negative!

Please pray for baby Maya

Dear Friends ,

Our family needs your prayers in a big way for our niece Maya Allen. She will be born by C-Section on Tuesday morning. A few days ago our sister in law Erin went in for a sonogram and the sonogram showed there were some problems in several of the baby’s vital organs. All the problems by themselves were considered treatable, but in combination they indicated a chromosomal defect called Trisomy. In all cases this condition is fatal. There is no way to find out if Maya has this condition until she is born. Please pray that she does not have Trisomy.

Of course you understand how devastated we are. We are trusting God for his miraculous healing for little Maya. Please join us in this prayer. Please lift up J.J. and Erin and our entire family this week. It is a very scary time of waiting until Tuesday to find out exactly what is happening with Maya.

Thank you so much,

K.C. and Michelle