Since last weeks lactation/nutrition appointment I have been giving Finley less bottles and tried the nipple shield again and for whatever reason – there are times during the day she prefers that. Previously I would have to give her a bottle when she didn’t seem to be accepting the breast. I am very happy to have problem solved that issue.
She was 10.8 last Tuesday and is 10.15 today – so almost an ounce a day in a week. I am SOO happy to be just breastfeeding now and not have to breastfeed, give bottle, and then pump. And then do dishes. With a toddler that has been overwhelming to try to do that every 2-3 hours. So wahoo!! She is gaining enough that the nutritionist said that I don’t have to give any fortified bottles, just if I do give a bottle I should fortify since I have it – but I can 100% breastfeed if that is what she wants. She will just get a bottle if I am not here. Finley just continues to amaze everyone. Though, Nurse Nan did predict this. 🙂 I am so thankful to the Doctors, Nurses, and Lactation Counselors that helped me be successful at breastfeeding a CDH baby.
My mom said that she loves it when there are no new blog posts because it must mean that there is nothing going on. Which is very true. I am just working on fattening up Miss Finley and she is doing a great job gaining weight. We are up to 10lbs 11oz as of today and I have been decreasing the number of bottles (fortified breastmilk) and she is still gaining! Wahoo!! Dr Bliss said that is very unusual for a CDH baby to be gaining an ounce a day as she has been now for almost 2 weeks. We had a follow up with him today to talk about her bile duct issue and he said he is stumped. He has never heard of a case like hers and ran through 2 scenarios that almost explain her condition, but then explained why it didn’t work. Truly, the only way I see it is that God intervened and it just gives me chills to know that God did this for us. Thankful. Blessed. Joyful. These words don’t even begin to explain how I feel. Throughout this journey God has been present and met us in a very real way. Even (especially) in those hardest moments, when I didn’t know how to get through that hour – there was always something – a verse, a text, a message, a person, or a thought – reach out to xyz that would help. God was in all of that. I now understand the statement that God uses all things for his glory.
So from now on, just expect posts on how Finley is doing – what new things she is doing, and how happy we are to be this little family of four. They will be following her to watch her PH, her CDH (watch for reherniation) and her bile duct – but I am not afraid of any of those things now. I won’t live in fear after all God has done for us already. Thank you for walking with us through the fire – now it is time to rejoice!
Prayer requests – thank you for continuing to pray for Finley, please also pray for Kelly Yuan, expecting Hollis, her CDH baby after Thanksgiving.
And I leave you with my current favorite photo of Finley……
Ultrasound was completely amazed when they did the repeat scan of her abdomen. There is no cyst there. Her bile duct is still a tad enlarged – but nowhere near where it had been. The radiologist said he couldn’t rule out a miraculous healing because he didn’t understand what had happened. He is pretty experienced and has never misdiagnosed this – but there is no cyst there now, so he says it couldn’t have been that. Her bile is still thick and slow moving and her pancreas is enlarged – but he says he has never seen bile block itself so he doesn’t know what to make of it. He said they may need to write this one up. So Miss Finley has been prescribed bile thinner and I am awaiting to hear what the next steps are, my guess is that we need to see a pediatric gastroenterologist to figure out what is going on with her bile – but I am so thankful that she doesn’t need surgery!! It really feels like we are witness to a miracle here and I am just so thankful to a mighty God that has interveaned. Prayer works!!
So we will enjoy a day at home today that does not include spending ANY time at Emanuel Children’s Hospital. Another praise! Great hospital, but we need a break from that place. 🙂
So we got to the hospital all ready for surgery today and Dr Bliss came by to check her given the change in her condition and he decided to WAIT on the surgery!! We are going to have another ultrasound today to look to see what is going on inside her – but regardless she is no longer obstructed which means surgery can wait. IF she does have a Choledochal Cyst he would prefer to wait until she is 6 months when she is bigger- or it is possible that somehow they misdiagnosed her and she just had a blockage that resolved itself and just needs to be on bile thinner – which he said he has never seen happen. All I can say is Praise God, Praise God, Praise God!!!
Here we are, the day before Finley has a major surgery. Again. By the time she reaches 9 weeks of age, Finley will have had 2 surgeries. It took me 16 years to reach that milestone and they were relatively minor (Stomach Hernia at two and Appendectomy at 16). I am going to vent right now and say how much it isn’t fair and this stinks and I hate that she has to go through this. I hate that we just got her home and we are going back to the hospital again. But I am not angry. More sad. It is just so surreal that this is our journey right now. I know God has a plan for each of us and for some reason his plan for us includes this. I just have to believe that he will carry Finley through once again because how can he not? He has answered all the prayers for her until now. A friend mentioned the analogy that we are in a marathon and this is just a hill before the finish line – I think that is a very accurate picture. We just have to dig deep and get ourselves up over this hill.
The other crazy thing is that her beige poos and jaundice actually have gone away. I’m not sure what this means – but I know Dr Bliss mentioned that she could go downhill over the weekend if she got an infection from her obstruction but instead of getting worse, she has actually gotten better. I know the cyst still needs to come out – but this has to be a good sign, right? Maybe God is working another miracle within her.
That the surgery goes smoothly with no complications. That God guides Dr Bliss’s hands and he is able to get all the inflamed tissue/cyst out so that there is nothing remaining that could turn into cancer later. That he is able to sew ducts and intestines and there are no leaks. That Finley doesn’t have any PH episodes from the surgery. For strength, peace and comfort for Jon and I. For my baby to be able to come home, healthy and healed quickly. Amen.
Dr Bliss used a good analogy – it is like Finley getting struck by lightening, not once, but twice. Surgery is set for Monday at 11:15 – checking in at 8:15 AM. Should be fun not giving a baby anything to eat from midnight on… I think that means that we will be up very early.
Good news is that she has the more common type of cyst. Dr Bliss is going to start the surgery laproscopically but transition to open if it looks like it won’t be the best route. There are 2 ways to do this surgery a newer way and a more traditional approach and we have decided to go the traditional route. We don’t feel that there has been enough long term study with the new technique since it has only been done in the state this way for the past 2-3 years whereas the traditional way has 30-40 years of experience.
So that’s all I have in me for now – we appreciate you continuing to hold Finley in your prayers.. God has taken care of her so far, so I have to believe he will continue her healing and miraculous journey. This is the verse I had on her crib in the NICU and I will continue to pray this for Finley. Jeremiah 29:11 (NIV) 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.
What a story Finley will have to tell….
Thank you for all the continued prayers, love and support. You have helped us more than you will ever know.
So Finley has a Choledochal Cyst which is completely blocking her bile duct- which is the cause of her beige poo. Finley is about a one in a million that lucked out to to get 2 rare conditions. Maybe she should play the lottery at some point. I will write a longer post later – but this does mean another surgery. Either next week, or sooner if she starts showing signs of infection. This will mean 4-7 days in the hospital after a 3-4 hour surgery. Please pray that she doesn’t get a infection while we are waiting and that she has a smooth surgery and recovery. Yes, Dr. Bliss is doing this surgery for us as well, so I feel in excellent hands- both his and God’s.
How do I feel? A little scared, but mostly frustrated and sad that we just got home and we are headed back to the hospital again. Just another part of our journey…. Please keep Finley in your prayers.
So the past 24 hours has held some unplanned excitement.. first Finley was spitting up more than normal yesterday (3x) and larger amounts – so I called the Pediatrician and since my Dr was out, the covering Doctor thought based on Finley’s condition that is could have been an obstruction or reherniation and wanted me to go to the ER. That kinda freaked me out since I was thinking more along the lines that it was her reflux. 3 hours in the ER later (thank you Stacy for hanging with me) Finley was determined to not be reherniating and was sent home. I spoke to the Ped this morning and we agreed that I would track her episodes and I was going to try some other things to manage her reflux and we would follow up next week. After a fun morning at the Pumpkin Patch with some friends we came home and I changed Finley’s diaper to find beige poo. Beige… like the color of Butt paste. Not normal. So I call the Ped again and they have me come in so they can examine the diaper and check Finley out since beige poo can be a bile obstruction or liver problems.. Dr Snyder agreed it was abnormal poo, but without any other symptoms right now that would point to those two issues we are hoping it is an anomaly. So we have to wait and watch her poo for the next couple of days and if she has more beige poos, that means going back in to Emanuel for further testing. Please pray that this is nothing and she is fine. We really have had our fill of doctors and hospitals.
We had our first follow up appointment with Dr Bliss today (actually Julie) to check Finley’s weight since they wanted to make sure she was gaining weight at home – I was a little worried since without a scale I can’t be sure how much she was getting from me. On Thursday’s Pediatrician appointment she weighed 9lbs 10.5 ounces and today she weighs 9lbs 15 ounces!! She has gained 5 ounces since checking out on Wednesday. So happy that she is gaining so well now – I had a feeling she would do better once we got home! We will be working closely (weekly) with the NICU nutritionist to track her weight and make sure she continues on a positive growth track.
Things are going really well – I am just thrilled to be at home and to finally be a FAMILY of FOUR. We are all under one roof now and I will forever be so grateful. I am still in awe that we came home without a single tube or wire in sight. Her only medicines are her multivitamin and her Prilosec. I will be praising God for all of my days.
Rowan has been acting out a little more now, but I am hopeful that once she gets adjusted to things and we are able to consistently spend some one-on-one time with her, she will return to her normal 3 year old self with it’s normal amount of tandrums.
That’s all for now, Miss Finley is waking from her nap…