I wanted to publish a post with all of the details about Keatley's journey. I started to write one, but it was just too much information and too overwhelming.
In the NICU, everyone is always talking about the roller coaster of good days and bad days. We have definitely experienced that. In Keatley's first 24 hours she went from doing surprisingly well to "coding" and being put on ECMO. She finally stabilized and then her heart wasn't functioning properly. The next morning her heart was totally normal. This was just within her first three days.
It has been three weeks now and there have been numerous ups and downs. If there is an organ to be examined and concerned about, Keatley has been through it. Some of the things we have been through have been concerning and others have been horrific. There have been a few moments when we thought we were going to lose our little girl. There have also been times when she has amazed everyone. A few days ago the respiratory therapist came to re-tape the ventilator tubes to her mouth and Keatley moved and pushed the tubes out. She literally extubated herself, she did so well without the ventilator, they progressed her to a cpap machine. The doctors hadn't planned to extubate her for three more days.
She is doing great now. She is on pressurized oxygen to keep her airway open (which they are slowly weaning.) She is on two sedatives and a PRN blood pressure medication (which they are slowly weaning.) She is taking breast milk through a feeding tube. She gets about 2 teaspoons every 3 hours (which they are slowly increasing.)
I am a different person than I was 3 weeks ago. God has revealed Himself to me in a way that I cannot fully explain. His body has loved and supported us. The medical technology and brilliance of the doctors that He orchestrates is astounding. The strength He has instilled in this little girl...amazing. He has moved mountains when we have called upon His name. His goodness and mercy are overwhelming. His miracles are tangible. We are so humbled and thankful to be on this journey.
We are not off of the roller coaster yet. Please continue to seek Him on our behalf.
I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there' and it will move. Nothing will be impossible for you."
Keatley's surgery went very well. The surgeon said that she had very little bleeding. He used a patch to repair her hernia, which he said is routine for large hernias. Her medical team has decided to make no more changes for today so her body can rest. Tomorrow they will begin to wean her from the ECMO. This will take a few days. Please pray that this goes smoothly. The longer she is on ECMO the greater the risk for blood clots and bleeding in her brain. Jonathan seems to be doing a little better, he is a little more settled. My sister, brother-in-law, and mom have been spending a lot of time with him and I think he has seen almost all of Nashville. He also loves the playground and playroom at "Old MacDonald's House." We are so thankful for the Lord's goodness and mercy. We are honored and humbled to be walking this path because we have seen His overwhelming goodness in His mercy for our daughter, as well as seeing His body work so well. We have been amazed by the number of people that have been going to the Lord on our behalf. We have not for a moment felt alone through this struggle. Thank you all so much for your love and encouragement. I know that He is pleased with the way His people have loved us.
On a lighter note: Yesterday one of the neonatologist mentioned to us that Keatley's gag reflex was not working. She was not overly concerned because of the amount of sedation that she was on, but it was something to note. Last night, one of the nurses was cleaning Keatley's mouth and putting some "chapstick" on her lips which was mint flavored. Kealtey started suckling her vent tube and then licked her lip to taste the chapstick. Obviously, she does have a gag reflex. The medical team was amused by our little diva that is already into lip gloss.
Keatley arrived August 3, 2010 at 10:32am (central time.) She weighed 7lbs 12oz and measured 20 inches long. She did really well most of the day but started going downhill quickly during the night. Wednesday, early afternoon, she was put on ECMO. ECMO is a heart/lung bypass machine that is being used to help her lungs and heart rest. She has been stable since she was put on the ECMO. The doctors are tentatively planning on doing her surgery within the next few days.
Jay and I are definitely experiencing a roller coaster of emotions. This is not easy but we are praising the Lord because we know that we are walking through His plan. Please continue to pray for Keatley's healing, Jonathan's peace and that he would feel settled and secure, and peace and strength for Jay and me.
Thank you so much for your concern, encouragements, and prayers.