Day 29

Seriously, it’s been almost a month? Wow… How far we’ve come. Finley’s ECHO went great and her pressures are way down in her heart (another answer to prayer!). The cardiologist wants to keep her on the Sildenafil for the next few months though to be safe, since PH can come back. She is up to 35ml for her feeds (needs to be at 90ml by bottle or breast to go home – I mis-typed in a previous entry 150ml) but only getting 12-15ml by breast before she tires. We met with an OT today who did an assessment of Finley’s body/muscles and gave us some exercises/massages to do with her to help some of her body mechanic issues from being sedentary and drugged for 3 weeks.  She is off the Morphine, but still gets some to help her through her withdrawl.

Overall she is doing awesome – the nurses, doctors, and surgeons keep commenting on how amazed they are at the progress she has made and at the speed.  I looked at her lung xrays from 4 days ago and it is amazing – her left lung is only slightly smaller than the right. The nurse said if you couldn’t see the plug attachments you would never know she had CDH. So thankful that she has so much lung!

Thank you for the continued prayers.

Specific prayer requests:

Feeding issues – for her body to be able to tolerate the increased feedings (they are increasing 5ml every 8 hours), and she has had some throwing up which causes them to pause.. Often there is bile in the throw up which means that her intestines are backing up into her stomach, which is a common problem for CDH babies – but it needs to go the other direction.  Also for her to be able to take more by breast (and eventually bottle).

Continued healing and no complications- it is such a praise that our request list is so short – God has already answered so many prayers for Finley. As Dr Bliss said, we are just on the last annoying part of getting her to feed so she can go home. To which I said, I am so happy to be at the annoying part.

Prayers also for Baby Savannah currently fighting in Florida – may come off ECMO tomorrow, and Baby Heath just born yesterday. Savannah’s family had to relocate to Gainsville for delivery and will have quite the expenses.. if anyone is in the position to make a donation go to any Bank of America into the account of “Savannah Grace Quick Health Fund” account number 898043042101. Jon and I are so blessed to be doubled covered and have a medical facility close to home – this is one way to help another CDH family.

My little miracle…

The nurses and doctors keep saying how impressed and amazed they are with Finley’s progress, to which I always reply – “my little miracle.” I know I owe it all to God and the countless prayers petitioning on Finley’s behalf.

To think we are just 1 week out from surgery and if you look at her wounds, which have almost healed you would never realize the complicated and serious surgery she went through. She is almost completely weaned from high-flow nasal cannula and has been at room oxygen for 2 days now… They stopped her morphine today and she is up to 15ml for her feeds every 3 hours. They let me breast feed first (a few times she has gotten the full amount from me, so they haven’t needed to feed her through the tube) and then they lavage feed her. They are given me a few more days until we will introduce bottles. She is getting stronger and sucking longer at the breast each time – I am so impressed with her. She continues to amaze me each day.  She doesn’t have an oral aversion- but does have a strong gag reflex. She has vomited a few times, so they are taking the feeds slow and are holding at 15ml for right now. It will take time for her stomach to work properly but all things considered, she is doing far better than anyone expects. She will need to be at 3 oz (150 ml) each feed before we can go home.

Tomorrow she is scheduled for another ECHO to check her pulmonary hypertension. Dr S wants to stop her Sildenafil if they can.

The plan for today

Her early morning blood gas was even better! Now they are saying it is too good and that means they need to lower her settings some and then they will just let her settle in and stay there until surgery. Praising God for this vent change success!! Will probably be speaking with Dr Bliss today, but I think we are “tentatively” looking at Monday for surgery.  She will stay on the NO and Sildenafil and today will be her last day on Lasix.  Hoping her body can get rid of enough fluid on it’s own and she doesn’t have any problems. Dr P is looking for the absence of a negative in going forward.

Praying for; her numbers to stay good (good oxygenation and low CO2) and her settings low (this gives them more room for when they will most likely have to go higher post-surgery), her pulmonary hypertension to go away entirely, for god’s timing on the surgery and doctor performing the surgery (and peace for me to accept that God has selected the right person if it ends up being someone other than Dr Bliss), and  freedom from fear for me.  AND of course, for the surgery to go perfectly and for her to have a miraculous recovery with no complications post-surgery. I know God can do all these things and he has done so much for precious Finley already… .just asking for him to get us to the day when we take our baby home and I can start complaining about lack of sleep from the round the clock feedings, the spit up, million diaper and outfit changes, and all the wonderful things that I will NOT take for granted.

Currently sitting at 28% oxygen!

UPDATED 3:42PM – It took her a while to settle after our 8:00 care, so she has been at 35% oxygen for most of the day since my last post – but that’s ok. Just a reminder that the PH is still there. She doesn’t want me to relax too much. 🙂

Hanging out in the middle…

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.

Holding the course

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;

“Be still and know that I am God” Psalms 46:10

7 days old!

I never knew that in the hospital they start counting your “days old-ness” on the day you were born – so even though Finley was born at 9:48 on Thursday – those 2 hours counted as her Day 1 – so today she is 7 days old. Time moves so strange in the NICU. In some ways it feels like we have been here longer, in other ways it doesn’t seem like tomorrow will make 1 week from when I checked in to be induced. Another CDH mama posted this verse on her blog as she was nearing being able to take her little guy home and she said it really summarized her experience;

Psalm 27:14 ” Wait for the Lord, be strong and take heart and wait for the Lord.”

So much of this time in the NICU with CDH will be spent waiting. You can’t rush these babies to surgery and recovery. What they need more than anything is just time – time for the PH to decrease, time to grow stronger, time for their lungs to improve. Finley will tell everyone when she is ready – until then – we wait and we pray.

The update is that Finley has gone through 2 vent weans in the past 24 hours and is doing good/stable. As I mentioned earlier- the goal this week is to keep getting her settings on the high freq down and then they will try again to move her to the conventional vent maybe by Friday. She does have a good amount of air in the bowl, which isn’t good since it adds more pressure on lungs that don’t need that, so they will be trying to get that out today and then she will have another Xray tomorrow. The doctors today said that she is “cautiously optimistic.” I think in Doctor speak that Finley is doing awesome! I know we have a LONG way to go, and there will be lots more ups (and downs) but I feel the prayers of the many working- she is getting stronger.  There are so many praying for Finley all across the world-I just know that God is going to show his work in Finley’s life ((John 9:1-3).

I have also been told that I shouldn’t count on Tuesday as the surgery date – this can be a tricky thing and they are really going to wait for Finley to tell them when she is ready- so while the plan might be right now to do it Tuesday – that depends entirely on what Finley tells them. I know that the surgery isn’t the critical factor (surgery won’t fix her PH) and actually can make the PH worse if they do surgery too early and don’t have the the room to go backwards a little. I do feel patience about that.  You would think that having the surgery would give her lungs more room and improve things – but the problem isn’t that she has bowels and stomach in her chest – the bigger problem is the PH and the lungs not functioning at the level they need to be.  Dr Bliss just came by and said that they will want her in the stable enough state prior to surgery that we should be able to cuddle her in her warmer bed. Holding her while she is on the vent can be tricky. For now I will be content with the few touches I can sneak, the diaper changes and taking her temperature. I have been singing to her the songs I sing to Rowan at bedtime and I think she recognizes them – her heart rate tends to speed up on the ones Rowan has me sing the most.

Had a lovely birthday with Rowan & family last night – she got her cake before dinner! What a lucky 3 year old. She was so so excited about her yummy carrot cake (chef Oma) that she couldn’t (or refused) to nap. Thank you for all the birthday wishes for her.