Day 17

So the big test of whether or not Finley is ready for surgery will happen tomorrow- they will need to position her with her good side down (left side up, right side down) ) which will allow the extra organs to put more pressure on her good lung. She will need to be able to tolerate that position for 4 hours before they will take her to surgery since she will need to be in that position for surgery. Dr P thinks she could be ready for surgery on Monday, but Nurse C yesterday said that if Finley is as reactive as she has been on Thursday/Friday that she will not be ready… So I am just trying to pray and if she is ready – great, if not, I know we are waiting for her to be ready and surgery will happen when it is supposed to. They will not take her if she is not ready.

Praise: She has been on lower amounts of oxygen for most of the week  when I got here this morning she was at 25%. Her PH has been “manageable.” She has been very responsive to diuretics and they seem to really improve her, good blood gases for the past several days (meaning her oxygenation and CO2 levels have been good), they haven’t had to increase the amount of Nitric Oxide, and she has been fighting strong for 17 days.

Prayer needed: For her to be able to pass her test for surgery (if it be his will for her to have surgery on Monday), and if not, soon. For her PH to go away or decrease substantially.  For her to continue to be stable and have good blood gases and not develop any complications or go backwards. Wisdom for the doctors, nurses and medical team taking care of her to continue to make the best decisions regarding her care, for her full healing and recovery.  I believe in a God that can do all these things.  For strength for me to continue to work against the fear in my heart.

Finley LOVES being on her tummy now….

Day 16

Miss Finley was being EXTRA sensitive yesterday – she was VERY reactive and did not want to help Dr P help accomplish his goals for the day (reducing Lasix and turning back vent pressure by 1). She made it very clear she did not want to be messed with and by late evening was on increasing oxygen needs. After an X-ray that looked like she might have more fluid already, it was decided to give her another dose of Lasix, increased her settings,  and they took her blood gas at 2:00. Amazingly, her blood gas was still good.  By the time I called at 5:00 she had recovered well and was back to her previous settings and oxygen. Dr P has decided for today to not change anything, she is ok at the settings she is at and if she is this sensitive to fluid that it is acceptable to keep her on the diuretic.

We have a meeting at noon today to talk about the surgery with Dr Bliss and watch a video of a CDH repair.  Still planning on Monday for now, but that will depend entirely on what Finley wants. They could even cancel it the day of if they don’t feel she is stable enough. That gives me comfort knowing that they will not attempt this until they believe 100% that she is ready.

Please also include Baby Christopher Heath and Baby Savannah in your prayers- they are both due very soon.

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. 🙂

Day 14….

14 days – I can’t believe we have already been here 14 days. So I have several prayer requests today – They are going to try her on the conventional ventilator at 12:00 PM today and I need HUGE prayers that she is ready for it this time and doesn’t have any problems with the switch. If it doesn’t work, they are going to go back to the high-freq vent and try the steroid treatment (Decadron) and then try again next week. There are also some timing issues at play…  Dr Bliss can do her surgery if she is ready on Monday, but then he goes out of town for 2 weeks and we would have one of his partners do the surgery. I am sure they are all very competent, but it is scary since Dr Bliss is the one we have a relationship with and who comes so highly recommended.

Prayer List:

1. That she tolerates the vent change well and that her oxygen needs do not increase and her CO2 levels do not increase. That we are able to stay on the conventional vent this time.

2. For her CO2 levels to get to the 50-60s range (currently in the low 80s).

3. For her surgery timing – help us have peace with whoever will be available to do it when SHE is ready.  For wisdom and discernment for the surgeon and for him to do it perfectly! For Finley to sail through the surgery and make a amazing recovery.

4. Her miraculous healing and continued improvement each day!

5. Since we are going off the lasix today, that her fluid levels do not start to rapidly increase again.

Though her CO2 levels are higher, they are tolerating them since we have been able to come down on vent settings and oxygen requirements. It is a give and take. I hate it because it just makes me nervous and I worry about it continuing to rise. I am trying to let go and trust. There is so much hope and she is doing so well – God has done so much already and I know he will continue to work here. Fear separates us from where God wants us to be, so I keep trying to focus on all the good that has happened so far and how God is good and he loves us. He is in this with us.  I am so thankful for 14 days.  I am thankful for today.

Open Eyes!

I finally got a photo of Finley with her eyes open! Note her fancy new bow from the nurses.  I wonder if her eyes will be blue like Rowan’s. So we are continuing to decrease vent settings and she has been having really good blood gas results. I am SOOO thrilled and thankful. I am just praising God and praying that he is working his healing power in her now and she will just continue to improve. The plan is to try her on the conventional vent again tomorrow and see how she does. The Doctor mentioned that he isn’t quite sure what is causing these improvements- he even thought that the lung looked more expanded on the last XRay.. I know it is our prayers that our what is causing these changes. He said it wasn’t the NO or the Sildenafil – it could be getting the fluid off of her (but it seems they have been working on that for a while).  It is actually all my prayer warriors interceding for Finley.

It sounds like IF all continues to go in this direction, surgery could be Friday or early next week.  I am not worried about the “when”, I just want it to happen when it is good for her and for her to make a FULL recovery, but for today I am focusing on our small victories and thankful for God’s protection so far over Miss Finley.

A friend printed up a few verses for me and I taped Jeremiah 29:11-13 on Finley’s crib.

11 For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. 12 Then you will call upon me and come and pray to me, and I will listen to you. 13 You will seek me and find me when you seek me with all your heart.

Small victories….

Last post of the day – Ignoring the news about the ECHO, today was better than yesterday for Finley. Her numbers were really good- and they were able to move the vent settings back a couple times. She tolerated being moved to her belly really well – and was less reactive during hands on times. At one point her oxygen even come down to 25-28% which we haven’t seen for quite some time. It truly feels like she is making progress- just very slowly. Praying that tomorrow is better than today, but thanking God for another good day today regardless of what the doctor said. 🙂