Day 190

Well the past 4 days have been the worst and best that we have had in a long, long time..maybe ever. This blog could be lengthy, I could give you the short version but it would not sum up the insanity of it all or the blessings.

It started with the phone call from the Dr at 9 pm on Friday night as I was driving with Dylan and my mother in law, telling us that her heart was showing signs of failure and things did not look good.
It proceeded with a long discussion with Dr on Saturday about possible outcome of the pulmonary hypertension. Where we go from here would depend on that night or next few days...
It worsened severely on Saturday night when Dylan started running a fever & throwing up, Chris was working and I was home with Dylan, then as the night proceeded Bella was dropping her saturations into the 20's, 30's, 40's, 50's and remaining in the 60's for quite some time.
Sunday was one of the worst days I have had possibly ever in NICU. The Dr's told me they felt Bella was VERY unstable and possibly would not make it thru the night. They closed the curtains to our pod, had me hold her and prepared me for the worst. The weird thing is that I only saw her saturations drop into the 70's the entire time I was there and by the time I left (MUCH later) she was in the 90's so it made the whole thing even more confusing. Added to the roller coaster of the weekend we had not one, not two but three discussions about continuing her care, what we want to do if she coded and also heard over, over and over the term "prolonging the inevitable."
Sunday night things started to change with the blessing of an incredible primary nurse with years of experience and an amazing gift for caring for chronic babies. She noticed that Bella had way too much "stuff" coming out of her OG tube that is used for venting her feeds (the vent helps to remove the air from her stomach). From what I understand this should not be happening with the placement of her feeding tube (NJ). The short of this says that she is probably aspirating (formula goes into the lungs) which would cause her much worsened pulmonary hypertension, lowered saturations and overall worsened condition. It shows she has severe reflux. We also discovered that the nurse that was on Saturday did not vent her the entire night and her stomach went from measuring in the 20's to 40, it was filled with air and reflux. This could credit the horrible night she had on Saturday.
Today we woke to find Bella had a decent night but still dropped her saturations into the 70's but mainly stayed in the 80's most of the night, on 100 % oxygen and 20 ppm nitric. Today also brought on a change of Dr's (they switch out every 2 weeks). Bella's original attending, Dr Walsh, was back today. He is the Chief of Staff for the NICU, the Dr we first spoke with before moving Bella to Vanderbilt and to be quite honest I have been scared to death of his very honest and direct bedside manner. He trained most of the Dr's at Centennial so I also know he is credited for being the most skilled and experienced Dr that we could have. We fully expected to come in and he would give us "the speech" yet again. My prayer this morning walking into NICU was "Please Lord I beg you, do not let me hear one time today that my daughter is going to die" I felt like I could not take hearing it one more time, even though I know not to listen. We walked in to find the Dr rounding and doing his evaluations. He tells us that he does not think that her heart is failing nor did he say that they are doing everything they can. Instead (thank you Lord for this) he says "these parents have been told over and over that Bella is going to die for the past 6 months so if she actually does I have a feeling it would be a big surprise as she has proven us wrong every time. She has made it thru so many struggles, she is here 6 months later and we owe it to her to rule out every possible scenrio." Thank you Jesus!!! He didn't give up or give us the worst case scenario! He didn't mention " prolonging the inevitable." I truly credit this to the Lord and Him giving the Dr wisdom. He worked out a careplan to observe the reflux which also shows he listened to our primary nurse (this shows he is brilliant after all ;), follow up with the Echo for her heart (which is showing mild to moderate hypertension now), and watch to see if her condition worsens then a slew of other order to address various things like the viral infection we have insisted she may have.
The remainder of the day brought few desaturations and an overall more stable condition. She had infant massage, a professional photoshoot and a nice warm bath. She handled each of these beautifully and every moment, by the grace of God, started to erase the horrible moments from the past few days. She even showed Auntie Bryn her big ole smile. For any of you new preemie mom's reading this I just want to say that there is something so therapeutic and bonding about bathing your child...We also discovered that when her feeding tube was disconnected during the bath and such she saturated in the high 90's and even hit 100 on occasion. The discussion now is possibly making Bella NPO (without feeds), feeding her via IV or PIC line with TPN'S and lipids (fluids) while we let her lungs/heart heal enough to get a surgery that would fix this problem for good. We got out 20 CC's of "stuff" in her vent in just a few hours. The incredible primary nurse is going to watch her tonight to see if it should take place immediately or if the Dr should make the call in the morning. Also we weighed her tonight, she went from 7 pds and 5 oz to 9 pounds and 5 oz in a week. While it is most wonderful that she increased her weight we have to be cautious that this could be due to adema (water retention verses healthy weight gain). This could also credit to her worsened conditioned.

So in 24 hours I have held my daughter for what was "possibly the last time" to holding her while we change her sheets. We have heard that we are "prolonging the inevitable" but are responding now that all of us are "prolonging the inevitable" but we still get out of bed in the morning, take our vitamins, go to the Dr when warranted and rule out every possible scenario before listening to an opinion that we are going to die soon...We are demanding the same for Bella and they are doing it...We have been reminded that the Lord will not give you any more than you can handle. We are reminded that He is the ultimate healer and advisor. We have been reminded to never take anything for granted, especially your family and friends- NOTHING matters more. We have learned yet again to go with your instinct and most importantly to not only talk to the Lord but really, really listen. More updates to come...

Much love to you all
Telisha