So the ECHO results were not the best news – her pressure in her heart/lungs is higher than her body, when at the last ECHO post birth they were equal. Add to that her PDA valve closed (many times in CDH babies this valve stays open which can help alleviate pressure) which means her right side of her heart is working much harder than it was designed to. Also, it can only operate at that level for a finite period of time. This means they need to be a little more aggressive. Step one is the Sildenafil. If she doesn’t show some improvement by Wednesday, they will add the Decadron into the mix. The hope is that they will be able to use these medicines to start making some things happen so that we can achieve the previously mentioned goals. The other disconcerting news was that even though ECMO has not been on the table as a consideration yet – it has always been out there as an option, but the doctor mentioned today that there will be a time when it isn’t an option any more as her time on the high freq vent and other factors make it something that won’t help. One thing that struck me that the doctor kept mentioning was how there are a number of factors that are out of his hands- how her anatomy was made (how god created her) and how the die has been cast already with many things – things set in motion that he can’t help. All I kept hearing is this is in God’s hands. The doctors can try these certain number of things – but this so truly is in his hands.
God, I know you are a God that can work miracles – that is what we are asking for today- work a miracle in my precious baby.
I am encouraged that Finley is back to a good space – her blood gases have been good, and we are back down to about 40% oxygen and her CO2 is looking MUCH better. The less than optimal thing is we are kinda back to where we started- this in between space where she could be worse, but she could be better and since we haven’t been able to wean much from her settings, the doctors don’t like to see that. I think she just needs her time to recoup her energy and then we will start seeing her come down – it’s been a rough 12 days for my girl. They just did a new ECHO on her heart to check her PH to see if that has gotten worse.. if it does look worse, or she doesn’t improve much over the next few days – Dr P is talking about adding some more medicines in the mix to try to and be a little more aggressive with treating her PH (Sildenafil, Decadron) so that we can come down from our settings, hopefully get to the conventional vent and get off the NO and get to surgery.. that is the wish list.
Finley is getting a reputation for being a “drama queen” and is very sensitive (that’s her PH) but the last 2 days have been MUCH better. She is still reactive (meaning her numbers go up when they mess with her) and they have to sedate her before hands on care. Hands on care is at 8, 12, and 4 every shift and it is the time when I (as long as she is on a good space) or daddy gets to change diapers and check her temperature – last night I even got to massage her head for a while because she has some swelling from being on her head all the time. I live for those times when I get to have contact with her. We also read stories and sing to her.
You celebrate any victory you can get in the NICU, and Finley’s last 3 blood gases have shown improvement – so I am so very hopeful that they are on the right track and this is what Finley needs to get her lungs to open up more and help with her PH. I am trying to cling to a phrase a friend passed on, “expect no less than a miracle.”
I wake up and I pray, I pray so many times through out the day – I am pleading with the Lord on high to save my baby. She has more air in her bowels which may be contributing to her less than stellar numbers- also may need some more doses of Lasix to get rid of her extra fluid which may also be a factor… Her oxygen needs have been higher and her CO2 is also higher – they are going to adjust her vent again and see if this combination of things will improve her today. Up and down, up and down. All you really want is to see them getting better every day, but that isn’t what you get. Waiting on God’s timing. Be still. Pray.
Other than a couple of episodes of reactive PH, Finley has had a relatively stable 24 hours. She is still telling us she is not ready for more vent weaning – and really did not like being turned to her right side (probably because of the pressure on her good lung), but she is holding her numbers. The Lasix did it’s job and she has peed off a lot of the fluid and that does seem to have made a small improvement, but Finley just really wants to take her time and go slowly. So I am holding on to the positive things and praying unceasingly and boldly.
Thank you so much for the texts, facebook messages, and blog messages – they really do uplift us and encourage.
God sent someone to me last night. This gentleman from the Family Advisory Board, Dan Zike, who came to tell me about some things that they do for families of NICU babies and I was so struck by his story. They were diagnosed with a very rare condition (CCAM) at the 19 week ultrasound and were told that the baby had only a 1% chance of survival and they should terminate. That was not an option for them, so they continued with the pregnancy. They went down to explore a radical surgery at UCSF and met Dr Lee, but ultimately decided to deliver at Emanuel and selected Dr Bliss as their surgeon. After a long journey, today their son is a healthy, happy 2 year old (http://www.caringbridge.org/visit/noahzike). Because of their experience in the NICU, they have felt led to help and support other families in the NICU. God using their experience for his glory and to help others. After talking with Dan, I just felt like God sent him to me to hear his story, see the example of his walk of faith and felt God’s reassurance. Dan shared the verse that carried them through;