Details from the 1st full day...

My oh my...the last 24 hours have been exhausting...we definitely have had huge praises, but we aren't in the clear yet. Yesterday as most of you know Ava Jane had surgery...here's how it all went:

Thursday, November 29th, 6:00am
They came and began checking vitals and did one last scrub down "bath" before the Anaesthesiologist came to our room and walked us down to the OR. It was excruciating to carry our little girl to the OR. We got to those big double doors and the Anaesthesiologist (who was pushing her IV pole) and the nurse (who was carrying her Oxygen tank) stopped and we handed her over. I cried and felt my heart being yanked out of my chest...it was so hard to walk back to the family waiting room we'd been assigned to. Just a side note, these two men (Dr. White and Michael) her Anaesthesiologist and Nurse could have both played any defensive position on a football team, they are HUGE, they each took up an entire doorway...these 2 big ole' saps carried our precious baby Ava Jane back to surgery and took excellent care of her!

Every hour on the hour Michael came out and gave us an update, they went like this:

9:00am
1st Update: She's intibated, all the lines are in (Central and Arterial Line which will be used to check her blood pressure constantly), they are draping her and getting her already to make the incision and will be looking at the aorta shortly...

Update #2: The surgeon is almost finished with the repair, her stats stayed level for the most part, they are about to unclamp her aorta and see what the pressures are in her extremities, pray that the gradient between the two extremities is closer rather then further apart

Update #3: Surgeon just came and said "I am pleased with surgery"...she is in the CVICU now and they are hooking up all her lines, she has 1 chest tube and they were able to intibate thru the nose (which we prayed for); her gradient (difference) between the upper and lower extremity blood pressures was 8--he was hoping for 10---and its less then 10 so that's huge! Praise the Lord! We will get to go back and see her in 25 minutes, we are humbled and blessed! We praise the Lord for a safe surgery...there are still a few complications that could present themselves, but we won't know for a day or so, so please keep praying! Our God is faithful and oh so good!

Update #4: Please continue praying for our sweet Ava Jane, she's on a double dose of morphine because of the pain, she was on 2 blood pressure meds but just came off 1, so that's good. This RSV virus, is complicating things...they just had ...to “bag her” (take her off the vent) and suction her tube…its so hard to watch her try to cough with a breathing tube in…she’s got a TON of secretions….She’s in a lot of pain which we can tell based on how high her blood pressure is….please pray for healing.

Update #5: She is getting a blood transfusion because her hemoglobin is low...the respitory therapist is sucking her out which is making her blood pressure go up--we don't want it to do that because it puts pressure on the sutures in her aorta...she is having trouble warming up from surgery (so pray for her body temp to increase), they are having to up the blood pressure meds again because its trending up.

That was all the updates from yesterday. I won't lie to you, or sugar coat this...it was touch and go all day yesterday after surgery and throughout the night as well. She keeps having what I call "episodes" where she tries to cough on the ventilator and that sends her into real high blood pressure fits as well as oxyenation problems then she takes a real dive and her bp goes extremely low. Yesterday everything kept going off, it was stressful and difficult to watch...by the evening my nerves were pretty much shot so after several people suggested that I go home (Dr. Garcia included) Adam and I decided to go home and actually get some uninterrupted sleep, which for me, was the first time in a week that I got more then about 2 hours in a night. It is HARD to leave your baby girl in a hospital, lying there with tubes galore, 15 pumps of meds, on a ventilator, etc with the hope that we would not get a call anytime in the night with bad news. And we didn't which was a blessing!

Like I said, her night was filled with several more "episodes" but she is doing ok this morning. These episodes I'm talking about are called "vageling" which is where a cough stimulates the Vagus nerve, which lowers her heart rate...causing less blood to flow to vital organs. Her Oxygen was at 100% (you and I breath air at 21%, so as you can see that's a huge amount of Oxygen on her lungs) Dr. Garcia would like to keep it at less then 60%, when we left last night they'd lowered it to 90% but this morning she's at 40% which is good. Her Hematocrit (or "crit" as they call it) is better, it was at 26 yesterday which is low, which is why they had to give her a blood transfusion yesterday afternoon. She is still not as warm as we'd like her to be, we're praying for her to get to 35 or 36 degrees Celsius. Her little hands look white, there's not any pink in her nail beds, so pray that her body temp rises. Last night her heart rate kept dipping down low (into the 40's) but for now she's holding fairly steady, so that's a praise! They've told us that "her lungs are still sick" so what normally would have been 2 days on the vent (if she didn't have RSV) will probably be at least 4-5 days on the ventilator. Right now they are about to do an Echocardiogram to look at how things seem today, I will let you know about that next time I update.

So for now, please keep praying for her lungs to heal from the RSV, it will be the factor that keeps her on the vent. My milk production has increased slightly, so thanks to those who have prayed specifically for that, but please keep praying! They aren't feeding her right now and probably won't for the next few days, so I've been able to start a little stock pile for her which has encouraged me, for when they start feeding her again. They'll start with a 1/2 tsp of breast milk too when they start, so I'll have a little more time to build up my supply. One of the complications that we're still waiting to see, is that milk can begin leaking into her chest cavity, if that's the case, she'll have to be put on a special formula that has low fat in it. But we won't know that until they start a feed which might be tomorrow or Sunday.

Thanks so much for all the prayers, thoughtful emails, texts, FB messages, visits to the hospital etc...We truly feel God's perfect peace resting upon us! We love you all and are grateful for the support!