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.”
Wanted to add a very heartfelt thank you to everyone for their prayers so far and for all the love and support as we are going through this. We really appreciate everyone!
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.
Per my weekly BabyCenter email for 24 weeks “Your baby’s growing steadily, having gained about 4 ounces since last week. That puts him at just over a pound. Since he’s almost a foot long (picture an ear of corn), he cuts a pretty lean figure at this point, but his body is filling out proportionally and he’ll soon start to plump up. His brain is also growing quickly now, and his taste buds are continuing to develop. His lungs are developing “branches” of the respiratory “tree” as well as cells that produce surfactant, a substance that will help his air sacs inflate once he hits the outside world. His skin is still thin and translucent, but that will start to change soon.”
Knowing that there is a lot of brain and lung growth going on now just makes my prayer even more desperate that Finley’s lungs and brain will continue to grow in a manner that her ratio stays in the “optimal” zone for survival. It is so unreal to me sometimes that a month a go my biggest concern was which room I would put the baby in whether it was a boy or a girl and now I am praying these very specific prayers (multiple times a day) for her lungs/brain to grow and for her liver to stay out of her chest cavity. I know we have gotten some very good news so far – but I am cautious about getting too excited since I know her ratio can keep changing but I am hopeful that God’s plan for Finley is for her to survive this and be an example of God’s miraculous power. Rowan kisses my stomach and sings to her sister and says “I love you, baby” and my heart aches for them to be together. Next week will be a big week for us with lots of doctors appointments and lots of information. I pray that God will give us even more hope and peace for what direction to take.
As we have started on this journey it has been interesting to learn that CDH is as common as Spinal Bifada and Cystic Fibrosis, but not as well-known, or funded. Please join the Facebook CHERUBS group as they try to increase awareness and gov funding so that maybe in the future they will know why this happens and be able to save more babies. Thanks for walking along us on this journey – as always your prayers and support mean so much to us.
This is my hearts prayer as well – Philipians 4: 4-7
4Rejoice in the Lord always. I will say it again: Rejoice! 5Let your gentleness be evident to all. The Lord is near. 6Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. 7And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
Already got a call back from the intake Nurse at UCSF and they have us scheduled for May 7th for 5-6 hours of consultations/appointments and tests. Now just need to make Rowan arrangements (thank you so much Mom!) and get flights and accomodations settled. I thought it would take much longer to get an appointment. So that week will be a busy week for us. We have our consultation with Dr Newman on the 4th, Ultrasound and Dr Apt with our perinatologist on the 5th and then off to San Francisco on the 6-8th. Atleast after that week, we will be able to make decisions about where to deliver and who will be handling Finley’s care.
We went back for our first ultrasound and Dr’s appointment since getting the news that Finley has CDH. I was very emotional during the ultrasound – there are just so many emotions to process right now. It’s overwhelming at times. The great news is that the lung/head ratio has gone from a 1 to a 1.37 which is REALLY good.
We went back for our first ultrasound and Dr’s appointment since getting the news that Finley has CDH. I was very emotional during the ultrasound – there are just so many emotions to process right now. It’s overwhelming at times. The great news is that the lung/head ratio has gone from a 1 to a 1.37 which is REALLY good. The higher the ratio, the better outcome usually. It is also dependent on which organs are in the chest cavity as well- in our case if it continues to be just the stomach and part of the intestines that puts us in a much better place. Having the liver migrate up there is very bad – so we will continue to pray that God keeps her liver where it is. Her heartbeat was really strong and she is looking good otherwise. We spoke to the Doctor more about making the decision about the pediatric surgeon – we have two people to consider locally – Dr Newman or Dr Bliss delivering at Emanuel; or we could possibly go down to UCSF because they do see the majority of these cases on the west coast. We are going to explore to see if it makes sense to deliver down there – if the medical care would be better for Finley. Our perinatologist seems to think that Emanuel is well equipped to handle our case and since we are not a more dire case (which would mean lower ratio, liver up, right-sided CDH) UCSF may not be necessary. Please pray that God guides us to the right hospital/surgeon and that we have a peace in our decision.
I am so thankful for all the support and prayers up to this point. I know that I couldn’t function without it. I truly feel God’s comfort and support through this. I have my moments of fear and worry – but overall I am so amazed that I am functioning as well as I am – and I know that is ALL God.
I keep thinking about this verse and it gives me comfort;
2 Corinthians 12:9-10 But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.