Hi all, I just thought I would give a quick update, Rachael might add something later tonight.
First of all, we want to thank everyone for praying for Mia at 1:02 this afternoon. We are grateful to know that there was a unity of heart and prayer for her.
Second, we want to report that Mia has been doing much better all day today. There was a period of almost three hours where she was taking breaths beyond what the ventilator is giving her. This is the first time that she has done this for so long, previously she would usually only do this for a few minutes at a time. She was also quite active and alert as well so that is a positive sign as well. Compared to yesterday she is much improved, in fact her nurse Karla said that she has not seen her this active before in the past two weeks.
The other positive thing is, we got the chance to talk with another Doctor today and his comments were much more encouraging. He noted that the APNEA test that was being done on Mia might not be the best test since it is usually done on brain dead babies. Since Mia is not brain dead he feels that the issue here could be something unrelated to her ability to breath. Indeed that matches more more to what we have seen where she will go for periods of time taking breaths. Even during the last APNEA test I did see that she was trying to take breaths, they just weren't large enough to sustain her. This new doctor wants to look at some different ideas and see if he can come up with something.
We don't know where all of this is leading, things have certainly changed in the last 24 hours. Rachael and I are praying that God will show us his will in his time. Since Mia seems to have come back, and is doing much better, Rachael and I are more than happy to give things some time and see where Mia is headed. Although Rachael and I are feeling better today because Mia seems to be better and a different doctor that is more optimistic, we still know that there is a possibility that God may choose to take Mia home.
One praise... My parents and Mercedes were headed down to the hospital today to pray with us and ended up in a car accident. Thankfully nobody in either cars were injured. Since Mia seemed to be doing so much better today, Rachael felt the need to go home early to be with our oldest baby girl, Mercedes.
Continue praying for God's will to be done in Mia's body. Thank you all for praying.
Robert
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Praise God for the good news! May He continue to work in her body & bring encouragement to y'all.
ReplyDeleteThanks Lord! One more day.
ReplyDeleteContinuing to pray for each of you.
Love,
Analene
I am so glad that you have seen something positive. I think Mia just needs some time to work things out in her body. I love you guys and miss you already.
ReplyDeleteLove,
Katie
Woo-hoo! We're praying! God is so good.
ReplyDeleteThank you Lord! I am overwhelmed with joy for all of you. Please Lord Jesus, continue to lay your healing hands over Mia. There is always hope! God bless. Love, Tina
ReplyDeleteThat is such great news! Thank the Lord that no one was hurt in the accident! All around good day yesterday!
ReplyDeleteI hope you guys enjoyed your time with Mercedes!
Praise the Lord for answered prayer! We are praying and standing with you all. Praise the Lord that everyone is ok from the accident. Father, keep them in your loving arms and sustain them in your grace and power.Grant them your peace and guard their hearts and minds. In Jesus name.
ReplyDeleteawesome news
ReplyDeletePraising the Lord with you!
ReplyDeleteKathy in Alabama
Robert, Not sure if you remember me but I met you at the OTC years ago and also met your sister Katie in Indy for a short stint.
ReplyDeleteWanted to let you know that I am praying for you, your wife and daughters. Glad to hear that your family wasn't hurt in the accident.
May the Lord bless both of you with much strength and wisdom during this time.
Rebecca (Rauch) Camenisch
Please read this article about a boy with hydrocephalus. http://nhfonline.org/articles.php?id=shiningstar
ReplyDeletePlease do NOT GIVE UP HOPE on her!
Hi,
ReplyDeleteI was refered to your blog by a stranger. We too were told by doctors that our Lizzie would be severely disabled and that it might be best to take her off life support. She was born 3 years ago at 26 weeks. She had severe bleeding in the brain grade III/IV, which caused hydrocephalus. I know that you said that she doesn't have hydro, but that her ventricles were "puffy". Lizzie has had problems breathing before her surgery and when she needed her revision (this is not a common response) because of her swollen ventricles. maybe this is connected to Mia?
We told the doctors that we would not take her off life support because like you we are Christians. Lizzie, even at her sickest, would pierce our soul with her eyes. They seemed to search us and tell us that she was ready to fight.
She had heart, bowel, eye and brain surgery in the NICU. She was there for 3.5 months. She was on the ventilator for 75 days. Like Mia, we would see some progress, and then she'd go back. I'm not sure if you have annointed Mia with oil, but a week before Lizzie got off the ventilator we annointed her with oil and prayer (I'm not sure why we didn't do it earlier). She was on C-pap for 1 week and nasal canula for 2 months.
We too played music for her daily in her isolet. I would encourage you to continue to play praise as well as clasical music. We used a CD player with speakers. Lizzie still loves music.
Neurologically, she has struggled but a child's brain has an amazing capacity to create neurons. She is delayed physically, but not cognitively. She can count to 30, identifies all the letters and numbers up to 20. She could do this before her older sister. She also memorizes songs, people and places. Lizzie could not roll over, sit up or do anything else at 1 year. Now, she is using crutches (sometimes) and a walker, which she takes "off road". She participates in dance and goes to preschool.
She is the life of the party and we love her dearly. Her sister, who was 20 months old when Lizzie was born, loves Lizzie dearly. It is a struggle to balance Lizzie's special needs with those of Hannah's but we never regret keeping her alive.
God is more powerful than medicine. Even if she needed the drastic amount of care the doctors say she will need (they have to give you the worst case scenario, but they do not include God in the equation), she will be a blessing upon your life. How could she not? Your love for her is evident. Lizzie's zest for life amazes us, even though she gets frustrated that her body doesn't work like she would like it to. However, it is difficult to slow her down. She's a firecracker. Our prayer for your family will be that your daughter will continue to disprove the doctors' assessments. Please contact me anytime you wish for anything sarahsunday@hotmail.com