Finley is back on the high freq vent – slightly higher settings now to try and blow off her CO2 levels. Again, they say this is to be expected given the trauma of surgery and this was her problem from the very beginning. So it is natural that we start here again. Nurse Debbie last night said that since we got this under control last time, she would expect that as she settles in and begins to recover from surgery, this should subside again. So prayers for her to continue to stabilize and be able to eliminate her CO2 again. Pray for her body to recover from the shock of surgery and heal. Her right lung didn’t look “too good” on Xray this morning – which I think means it hasn’t expanded yet and started to work, but that can take some time as well.. So we wait.
4:47 PM UPDATE: Finley has had a pretty stable day and they are pleased with how she is doing post-op. They haven’t had to increase the vent settings any more and she is responding well – her CO2 levels are back in the 60s and her oxygen needs were even down to 38% for a while. I am hopeful that each hour, each day she just keeps getting better and maybe she’ll be able to get her first taste of breast milk in a few days.
I am overjoyed to announce that Finley’s surgery went really well! The surgeon was able to do it thorascopically and he said that Finley’s vital signs and numbers were really good throughout the surgery. God is AMAZING! God is good – We are sooooo happy!
The short version: She had stomach, intenstine and spleen up – but they moved down really easily. Her moderate sized hole was repaired with a plug. She had more lung hiding behind behind the organs – so she has a decent amount of lung!! He thinks she should have a easier recovery because of this, but of course gave the caveat that every baby is different and you can’t predict what they are going to do, but he felt very positive about the surgery and her recovery.
That’s all I have in me for now – I am in shock and overwhelmed with happiness that we have made it through this second LARGE hurdle. I know we still have a lot ahead of us, but I am going to rejoice in all the blessings of today. God has truly met us in this and I have felt God’s love and his promises throughout this journey so far and I know he will continue to be with us. Thank you for all your prayers – you got us through today. We feel so loved and protected.
UPDATE 10:50 PM – She is doing pretty well, but her CO2 levels are very high (120) so she may need to go back on the high freq vent for a little while. They say this is not unexpected… Hopefully it will be for a short term and in a few days we will be back on the regular…
I got to hold my Finley for 2 hours! So happy!
Surgeries have been moved around and the AM surgery before us is now at 1:00 PM, so that means we probably won’t be until late afternoon/early evening…. More waiting. But I am on Cloud 9 since I finally got to hold my baby!!!
UPDATE 11:15AM: Look s like we may be pushed back only an hour… so they would take her around 1:00PM…
Jon got a huge surprise when he came back for 8:00 care last night – they let him hold her! I was SO jealous (but my turn is in about 20 minutes!!) Everything is still a go so far for surgery this afternoon. I know it can be called off so until they actually come and tell us they have started, I am trying not to get my hopes up. I am so thankful for all the prayers that have gotten us this far, and know that there are so many that are continuing to pray to get us through this day and to the other side of this. More soon, I am just so excited about FINALLY getting to hold my baby!!
We are almost at the 4 hour mark and Dr Bliss called and said we are on for surgery tomorrow afternoon. She came off the NO amazingly well and with no issues or rebound at all, and has been cool on her side without requiring a ton more oxygen. So she is ready unless she has a huge fit during the night or morning.
Her surgery is set to start at 2:00 PM, but they will take her earlier so they do all the prep stuff they need to do.
Thank you for all your prayers to this point and we will continue to need them… I wonder if they give Valium to the parents prior to surgery. 🙂
Apparently she can’t go to the OR being on Nitric, so they need to see if she can tolerate being off that today as well – so the position change test is on hold now, while they try to wean her from the Nitric (which is being used to treat her PH).. Mama is nervous…
UPDATE 3:30 PM – She is off the NO, and they said we would know fairly quickly if she wasn’t going to tolerate being without it (within minutes). It has been over an hour – so I think we are ok… Thank you God!! Up next is the 90 degree side lying test. We should have a good idea by this evening if surgery is going to happen tomorrow….
UPDATE 4:20 PM- Take 2 Side lying test begins again… so far tolerating it well…
So far so good – Finley is now right side up and has recovered from her initial decompensation and isn’t requiring a ton more oxygen… She needs to keep this up for 4 hours- so praying, praying, and praying more.
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….
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.
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. 🙂