Posted (Tina) in All Posts on September-2-2007

So, we went to visit Ella early this evening. When we walked in, her stats were pegged at 100. She was sleeping peacefully with her pink monkey. We did not want to disturb her, so we waited off to the side and got an update from Nurse Andrea.
She behaved well all day long. Sometimes she can be touchy and have episodes real easily. Not today – – her body was turned every 4 hours, they cleaned her, changed her bed, etc. Ella’s stats did not fluctuate at all; she tolerated it.
We asked about her blood gases. When they took them at 2pm, the cO2 was 33 and the pO2 was 188. The numbers were so good that they ran them a second time 5 minutes later to make sure it was reading correctly. When they ran it a second time, the cO2 was 35 and the pO2 was 190. Wow!
While we were there at 6pm, they did another blood gas. The cO2 was 57 and the pO2 was 198. As soon as Dr. Kays was paged with these stats, the phone rang and he asked them to turn down the FiO2 on the ventilator to 60 (if you remember, it has been 70 since yesterday morning). Even her brain oxygen level was way higher (in the 70’s) than it is normally (the 50’s).
I asked about the sudden change in Ella’s stats – – they seemed to be so good. Nurse Andrea thinks it is from all the fluid reduction.
Finally about 15 minutes before the shift change of nurses (when parents have to leave the NICU), Ella decided to wake up. She looked amazing! Her eyes were wide open, looking around. It was such a fun time to see her so alert and responding to our voices.
When we did have to leave, it was tough. We hate to leave when she is awake! But it was such a blessing to have those 15 minutes or so with her.
This journey is such a roller coaster. Ella has good days and bad days. It is so tough emotionally, tougher than anything else that I have ever experienced.
But, the Lord knows what we can handle and He seems to time these precious moments with Ella just perfectly. When we are feeling vulnerable and weary, He gives us these unforgettable times with her. It is these times we feel truly heaven blessed to have created this little life and to have been chosen as her parents.
Knowing that you are in the center of His will is not something that comes along in life too often with such clarity. Yet, we know that right now is one of those times; this truth helps us to keep going on this journey.
Please continue to pray for head swelling to reduce, fluid reduction and overall strength for her lungs.

Lord, we thank you for Ella Renae. We thank you for your grace, mercy and your faithfulness. We cling tight to your promises.

Psalm 118:1: Give thanks to the LORD, for he is good; his love endures forever.
For those of you with a high speed Internet connection, enjoy the video below. =)

Posted (jooosh) in All Posts on September-2-2007

Our baby girl is doing well this morning. Overall she had a stable night and her fluid output continues to decrease. Her total for the 24hour period (9/1/07) was 390, down from 440 yesterday. Her blood gases taken at 8am were so good, they were surprising (cO2 = 33, pO2 = 118)!

Since Ella has had a rough couple of days, it is good to see these numbers; they are a definite improvement over her previous levels. However while these numbers are good, her FiO2 (Fraction of Inspired Oxygen) is at 75. This is the amount of oxygen she receives via the ventilator. This amount was increased from 60 after her rough evening and morning early yesterday. Now that she’s doing better, I would expect Dr. Kays to ween this number down again (she was as low as 46 in the previous days). Being able to reduce this number will help her come off the ventilator, but she needs to maintain her stats to do so.

Ella still has a ways to go in reducing her fluids, but we’re thankful that she’s going in the right direction. While her main fluids are dropping (chylothorax condition improving), her head is still very swollen. This is more related to her superior vena cava condition. If her head does not reduce in size, they may consider performing another SVC procedure. Due to the risks of damaging her vein with the “balloon”, we hope that she does not need to have this done.

Please continue to pray for Ella’s overall fluid reduction (390 is still too high), reduction in her head swelling, and for her stats to remain stable enough so they can ween her off the ventilator.

Praise the Lord that we’re this far along in our journey, and Glory to God for the victories along the way! Thank you Jesus for our baby girl.