Yes, we are at the annoying part. 🙂 Now all we are really working on is feeding. She is making small improvements but still hasn’t taken more than 25ml by breast or bottle. 5:00 AM UPDATE: Right after I posted this I spoke with our night nurse Rachel and she said that Finley took 46ml at her 2:00 AM feeding – wahoo!! A new record! Half of her 81ml feeding.
I spoke to the surgeons yesterday and we won’t need to talk about a G-tube until we are at this for a month post surgery. We also have the option to go home on the NG tube but we would need training on how to drop that since there is a risk of aspiration if you place the tube in the lungs instead of the stomach. Depending on how she is doing by Monday, we may start with fortifying my breast milk to try and help her gain weight and get stronger so that in turn she could have more energy to eat more.. Last weigh in she was 9lb 8 oz. She got her first bath Tuesday night and she did NOT like it at all – but I got to see her without any wires and tubes attached to her and it was great to see her like a regular baby!
Please pray for her continued healing and recovery and her to start taking more food, and for the PH to stay away (scary that there is this medical issue out the lurking that could come back anytime.. but I will not be afraid of it – I will trust God). I praise him for all his has done already and just pray for the day when we can all go home as a family.
Finley is now breathing 100% on her own – bye-bye nasal cannula! It is so amazing watching my sweet girl breathe without any assistance. They also discontinued her TPN (IV nutrition) and will be taking out her PICC line today! That means a real dunking bath! So excited! She is up to 80ml which is mostly going through the feeding tube – we are still in the 20s for breast feeding and she did take 20-25ml by bottle the other night. She is more interested in breast feeding than the bottle, so the nurses are wondering if she may be the first baby they have seen in a LONG time go home doing 100% feeds by breast. If she hasn’t progressed by the end of the week, we will have to talk about scheduling a date for a G-tube so that we could go home and continue working on getting her oral feed volume at home instead of having to stay at the hospital. I am hopeful we could be home in 2 weeks.
Will post some tube-free pictures soon! Thank you so much for the continued prayers. I am so thankful to God for answering them and will be every day for the rest of my life!
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.
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.
Finley is pretty much at room air (21%) most of the time and they are weaning the high-flow nasal cannula (and she is helping because she keeps taking the tubes out of her nose). We are about to give her her first sponge bath (she is getting pretty ripe, I must say!) and we had our first attempt at breast feeding this morning. Overall she did really well.. It’s going to take some work helping her to learn the suck/swallow/breathe part – but the lactation consultant said she is doing really good for her first day. I was really surprised that they are going to just let us try breast feeding first (no feeding tube or bottle) and see how it goes (she still will have her IV nutrition). If we have to do the combo bottle/breast that’s fine – but they want to give her the chance to be purely breast if she can. They are weaning her morphine and we are getting more awake time with her. It’s going to get harder to update the blog because I get to hold her and do more with her – which is so incredibly awesome!! I’ll post a picture of her post-bath…..
I am just so very happy. So thankful for all the prayers and that God answered all of them!