While on this journey, I have found several other families expecting CDH babies and several of them are due this week and next. Please pray for them and that God will take care of all of these babies. There are times when I am in this waiting zone that this whole situation is rather surreal – or rather unreal. How is this really happening to us? 12 more weeks of waiting ahead of us. I think when this will truly get hard is near the end. As much as waiting sucks, I keep thinking how she is safe inside. Seeing these other families reaching the delivery time and sharing in their journey through their blogs makes this seem more real to me. It reminds me that that too will be us in a few months – and that is when the fear sets in. Dark, twisty, scary thoughts that I try and quickly banish. So I try to put in trust in God and ask him to banish the thoughts that don’t need to occupy any space in my head. This takes a lot of effort- this trying to stay positive and walk in faith – it is not without a great deal of work.
Finley is super active and I love feeling her movements inside me. I am trying to really enjoy every moment of this time and try and be like a “somewhat” normal pregnant person. I think Jon and I are going to try and get a date night in this weekend. Yeah!
Next week I will update after my usual appointments and meeting with the neonatalogist that is coming over from Emmanuel to meet with us. Thanks for listening to my ramblings. I added a few photos today to jazz up the site a little, and also to put a face on our family for those that don’t already know us… Thank you for your love, support and prayers.
Had my 2 week follow up with ultrasound and appointment with my perinatalogist. Have I mentioned that I REALLY like my perinatalogist, Dr Lee. He is awesome. Such a great personality. He is also a fellow foodie. Nothing too exciting to report, which is good. My fluid levels look good – so far no signs of things that could lead to pre-term labor. Also, no abnormal fluid build up in Finley which is also VERY good. We talked again about what to expect at the end and they will let me go until 40 weeks unless she has other plans. The bigger the baby, the better. We talked about whether or not they will give me steroids before I deliver and he says he is going to do some more research on that and get back to me. Next visit will be in 2 weeks again and this time they will bring over the neonatalogist for me to meet from Emanuel. The neonatalogists are Finley’s doctors after she is born. After this meeting I will be able to schedule a tour of the NICU so we can start to prepare ourselves for what to expect for delivering and having Finley go straight to the NICU. I praise God that we aren’t having additional complications and pray that this continues. 13 weeks to go….
I think one of the hardest things to do when faced with a diagnosis that there is something wrong with your fetus is figuring out how to feel and act for the remainder of your pregnancy. As a person who naturally expects the worst case scenario, or likes to prepare for it – it is hard to reconcile that with trying to be excited about the upcoming birth. Even though I WANT the best case outcome – a part of myself kept guarding and in some ways preparing for the negative. Do I have a baby shower or not? I finally decided yes – I want to celebrate every moment I have with Finley. A dear friend, and chaplain at OHSU asked me what if I believe with all my heart and trust that God is a God of miracles and what if I just walk in faith that Finley will be healed. To completely walk in faith and just hold to that is me completely giving over my heart to God and trusting in him to take care of us. And afterall, isn’t that what he is looking for? For a control freak like myself, that is a challenge. But this is exactly how I want to feel for the next 13 weeks. My friend prayed with me and that is now another of my daily prayers – for me to be able to let go of the worry and just to trust in God’s power and might. Thank you Cody.
I pulled Rowan from preschool registration for the Fall today because from all the I have read, once Finley is able to come home we will have to be on germ lock down – which means preschool is out for now. I had been on the fence about making a decision now, but just decided that Finley IS coming home – so why wait to drop her? Walking in faith.
Psalm 73:26 “My flesh and my heart may fail but God is the strength (or translated Rock) of my heart and my portion forever.”
It’s been a long emotional week but we got the answers we were looking for and overall we feel at peace. The meeting with the second pediatric surgeon on Tuesday was interesting to say the least. He had a completely different bedside manner than the first doctor and was rather cavalier when talking about babies with “poor outcomes” as situations where they would “crash and burn.” He said this phrase not once, but several times. Not exactly the sensitivity I was looking for. Thankfully, we didn’t meet with him that first week or I would have been a mess. The other big difference with this doctor was that he doesn’t attempt the less invasive surgery method of doing it laparoscopically rather than opening the chest cavity. The other doctor said he will try to do the surgery laparoscopically if he can, and only go to open if necessary. So that may be the deciding factor for us. Wednesday was another ultrasound and appointment with the perinatalogist. Everything was pretty much the same on the ultrasound, the LHR changed a little – but we found out from UCSF that since the liver is down – the LHR is meaningless in predicting survival. The best part of my appointment was that my Doctor was very honest with me and told me his preference as to which doctor he would choose if it were him – which was a total answer to prayer.
Had a good flight down to SF on Thursday night, though it was really hard for me to leave Rowan – even though she is in awesome hands with my parents. It was the first time Jon and I had left Rowan for more than one night, and the the first time we have flown without her. I kept feeling like I had forgotten something. On Friday morning, after a delicious breakfast in the Haight district, we headed to our first ultrasound appointment. The Ex-Chief of Radiology was there and he came in for the consult portion and apparently he ( Dr. Filly) is a sort of icon in the Radiology world – he has seen over 600 of these cases and trained under the guy that invented the ultrasound. He said of the factors that are important for our type of case – no other abnormalities, and liver down put us 2 for 2 for best case situation. The remaining factor would be the results of the fetal echo looking for any potential heart abnormalities and defects which also was in our favor. The other thing we learned is that it is very unlikely that the liver would move at this point, which was a huge relief. One less thing for me to obsess over.
Dr Lee, the pediatric surgeon and Director of the Fetal Treatment Center was very honest and open it was another answer to prayer. He said though while we are presenting in the better category for a CDH, it is still a very serious matter and critical we receive the best care. But though he considers UCSF to be the best in the world, he thinks given our set of circumstances, we are in good hands in Portland at Emmanuel with Dr Bliss. Dr Lee had heard of Dr Bliss and knew that he has done a good number of these surgeries. No where near the number probably that the surgeons at UCSF do- but really the surgery isn’t the greatest challenge – it really depends on Finley and how she comes out. So that is another relief – we know where I will deliver and which surgeon will do Finley’s surgery. What we don’t know, and won’t know until the moment she is born is how much functional lung she will have him. Even in the “best case” category – 10-20% of these babies die and there is no predicting where we will fall. So, this is in God’s hands- which is no surprise, right?
I completely concur that UCSF is a world-class medical treatment center – everyone we met with was amazing. We were so blessed to be able to meet with some doctors that are leaders in the their field and having them evaluate our case really gave us the peace (as much as we can have) that we were seeking.
So every day I will pray that her lungs will continue to grow as much as possible and she will stabilize quickly after birth and that she doesn’t have any complications. The ultrasound tech and echo tech commented on how active Finley is and how much she kicked and fought when pushed on- they said she seemed very strong and feisty. My prayer is that she is strong, a fighter and that with God’s hand- she will survive this.