Finding comfort in God's time

I talked to Kelly a little while ago. She sounds much better today after getting some encouraging news. She said that every day is so different, up and down. They just don't know what to expect when looking at tomorrow. She has been reading a book that Kristin (Max's other aunt) gave her and she is learning about finding comfort in expecting things to happen in God's time, not our time.

Max opened his eyes today for the first time since Thursday afternoon. This was such an encouragement to Kelly and John and I'm so thankful that they were there to witness it. She said he looked around for a couple of minutes!

The physical therapist evaluated Max today. She didn't see anything she was too concerned about. She said that he did have low muscle tone but that could be from the sedation he has received. She will continue to evaluate him 2-3 times a week and gave Kelly and John some stretches and exercises that they can do with him. She is also going to put them in touch with Easter Seals for follow up after leaving the hospital.

Today the doctor said that while the blood is still present it is very unlikely that the Grade 3 bleed on the left side of his brain will worsen to a Grade 4 and that the Grade 4 bleed will progress into the cognitive area of his brain on the right side. While we were hoping that the blood would have disappeared this is a huge answered prayer, God's time. With Max being a newborn the left side of his brain can develop new pathways to compensate for the deficits, if he has any, from his right side. For this we are thankful.

Max's temperature is holding steady at 98-99. He is still on IV antibiotics and we haven't gotten the results of the viral culture yet.

The neonatologist and the neurosurgeon are supposed to meet to review Max's ultrasounds today or tomorrow. The neonatologist said that if intervention is needed that they will do a tap to remove fluid before doing a shunt. This would be less invasive than a shunt.

They are continuing to do more testing to look for answers. They will be doing some clotting studies and some protein tests. Please pray that all of these come back normal. I will let you know when we know results. Also they sent off a specific test for the homocystinuria today to hopefully rule that out completely.

Kelly said that today was the 1st time that food has tasted good to her in a week. Please continue to pray for peace for her and John and for rest. They are in Mommy and Daddy mode and are so focused on their precious baby boy that they aren't finding time or energy to focus on themselves.

At 2pm today they were going to let Kelly give Max a non-nutriative feeding. She was to pump at 1:30 and then let him "nurse" at 2pm. Instead of getting milk from her he would be getting formula through a small tube in his mouth. What a blessing that the doctors and nurses see this need that she has as his mommy. This serves as bonding time for them while still being able to control the calories that Max is getting from the formula. They will gradually reintroduce breastmilk at some point.

Prayers of Thanksgiving
~Max's bilirubin levels have dropped from 5.2 yesterday to 3.2 today, this is significant and we give God the glory. The doctor feels that it will work itself out
~Max's blood sugar remains stable and they have turned off the IV
~Time for non-nutriative feeding for Max and Kelly
~Compassionate doctors and nurses
~Max opened his eyes and Kelly & John were present for it
~Max's bleeding has not gotten worse
~Physical therapist evaluation went well

Specific Prayer Requests
~All of Max's lab results (clotting studies, protein tests, metabolic tests) will come back normal
~Meeting with neonatologist and neurosurgeon goes well
~That there is not a need to intervene right now with surgery
~That Max's head circumferance growth is not due to a problem with his brain
~That the non-nutriative feedings will go well and that Max will tolerate the gradual reintroduction of breast milk
~That the blood on Max's brain will dissolve and absorb and will no longer be an issue
~That Max has suffered no brain damage and will have minimal to no deficits

Thank you for continually lifing up Max, Kelly, & John in prayer. Also thank you for forwarding this to all the prayer warriors you know. Thank you to Matt at Family Life Ministries for calling and letting me know that 300 people that we don't even know are praying for Max. We continue to pray for strength, peace, and complete healing.

We keep praying,
Karie