22 Days old (DAY 11 on ECMO)

Here's an update... I may need to clarify some of this later... as I was talking to Teresa, Kevin called her back in because there was an urgent issue he needed to discuss. I have no idea what that is, but you can be praying...

They were about to inject surfacant into her lungs. Pulmonary surfactant is an oily substance (a mixture of lipoprotein molecules) produced by the cells lining the alveoli. All parts of the respiratory system are coated with a thin watery layer. The surfactant coats this layer and reduces the surface tension within the alveoli. This helps keep the alveoli open for gas exchange.

The attending physician in the NICU would like to wean the ECMO tonight in hopes of doing the bridging tomorrow. They would like to see her come off of ECMO this side of 14 days. The doctors in the PICU differ with this decision and would like her to rest more before doing the bridging. Teresa & Kevin's prayer is that the two groups will come together and reach some consensus.

They will be doing an ECHO tomorrow to check on her pulmonary hypertension levels.

Averi's blood pressure is better today. The issue with the right side of the heart that I mentioned the other day is that the hypertension was stressing that side of the heart too much, and they didn't feel that her heart would be strong enough to handle being off of ECMO. That problem seems to have resolved.

Teresa has some concern about the dialysis. The doctors are saying she is still +4 liters from where she should be, (I start envisioning 2 2-liter bottles of soda...) and the nurses don't see how that's possible. We just don't want them to take too much fluid off!

As far as I know, Averi is stable, her lungs are continually expanding, and she is still on the high frequency ventilator with iNO. I didn't get a chance to ask her how the liver is doing. As Teresa said, our hope is NOT in the doctors, the hospital, the medications, or the machines. Our hope and faith is in the Lord, who uses all of the above (or not, if he chooses that!) to accomplish HIS purposes.

As always please pray for the doctors to have wisdom in the decisions being made for Averi... that everything will be done at precisely the right time and in the right order. Pray for Averi's little body to be strong and feisty as she fights! Pray for the entire family. As we head into Christmas, and the family is separated by a few hours, I am sure that their other children are having a really difficult time. Thanks, everyone! I'll let you know if I hear anything else!

Wednesday night (16 days old-Day 5 on ECMO)

Averi started peeing again, but she's not fluid negative yet. The doctor said the plan is to adjust the ventilator and see what her lungs do. They also plan to do an ultrasound on Friday to check her pulmonary hypertension.

Another update...

Averi is off of dopamine and sustaining a good blood pressure on her own. They have weaned her on the oxygen a litle more, and she is satting at 100. They are going to do an ultrasound to check for pulmonary hypertension as well as an x-ray sometime in the near future. The doctor said she is moving in the right direction, and the nurse said she has had a great day! Praise God!

Little princess...

Here's the little sweetie:

Here she is getting the heart ultrasound (echo). The little thing on her head is like a bandaid. She was on the one side so long that there was some skin breakdown.

Tests, tests, and more tests...

Ok lots of tests were done today, including head, chest, & heart ultrasounds. They don't have the results yet. Kevin and Teresa also haven't had a chance to talk to the doctors yet. Averi's nurse has been awesome and informative. For now, it seems that everyone is happy with how she is doing on nitric oxide and the high frequency ventilator...she is stable. They thank all of you for your continued prayers.

Our last Ultrasound!

Averi is breech! I guess this is not uncommon especially when there is extra amoniotic fluid present. The doctor was super positive that Averi would turn and if she didn't that her position makes her a good candidate for averision(bare with me if I got the name of the procedure incorrect) which is a manual turning of Averi. They will do a quick scan prior to induction on Dec. 14th. If we are not successful then we will have to have a C-section. So we are praying she will turn.

I am NOT diabetic. Yay! Praise God! One less thing to worry about as we get closer to Averi's birth. I am 1 cm dialated. The doctor said I am 60% soft, not sure what that meant. We are 36 weeks and 4 days. Averi weighs 6 lbs 14 oz by ultrasound measurement, which can be off more than they would like. If that is correct though that means Averi gained 2 lbs 2 oz in the last 4 weeks. She has chubby little cheeks. I am going to try and get the 4D u/s picture we got posted. She is going to look like her brother Ian.

As we approach the induction date I am getting more and more anxious. The unknown is driving me crazy. It is a struggle at times to stay positive. There is just no way to know what will happen with Averi. I long to bring her home, but constantly have to bring myself back to the reality that it just may not happen. So many CDH babies have passed, and my heart just breaks for the families. I am extremely uncomfortable with this pregnancy but don't want her to come out yet because right now she is safe and warm and doesn't need outside support. Praying and worshiping the Lord really does help for me. Averi has already taught me so much, the impact she has had on our family and friends is huge! Ok the diary part of this entry is over.... he he he!

Thanks you for your continued prayers!