From here I go to weekly appointments. They are going to do weekly non-stress tests on Finley to make sure she is getting adequate oxygenation to her blood. They estimated her to be about 4 pounds 8 ounces right now and her growth is looking good – though it did drop slightly from the last appointment, which he did say could fall within the range for ultrasound error (praying it is that!) but they will need to keep an eye on that. Please pray that she keeps on track with her growth. We got the most amazing ultrasound picture of her face today and I can’t stop looking at it. I am already so in love with my baby girl – I long for the day when I will hold her in my arms and be able to take her home with us. Once again, the ultrasound tech could not get over how “feisty” and active Finley is – it just gives me comfort to think that she is a fighter. She said she was doing her practice breathing with a vengeance. Maybe baby girl knows she has a fight ahead of her and is “in training!”
Psalm 34:3 ” I sought the LORD and he answered me and delivered me from all my fears.”
Romans 12:12 “Be joyful in hope, patient in affliction, faithful in prayer.”
Such a scary road we are on, but I know God is faithful and he is walking with us– all any of us can do is offer up our prayers and trust in a mighty God that can do amazing things.
Prayer: For Finley’s lungs to grow/develop as much as possible, for her growth to get back on track if that is an issue, that she will stabilize quickly after birth, that they are able to do the surgery 3-5 days after birth and that she recovers quickly. For me to be able to trust in God’s goodness, his steadfast love, and his sovereignty in times when I begin to worry and fear.
Our countdown is now into single digits.. scary! 9 weeks to go (less if I go early)….
We had an eventful weekend of food poisoning for Jon and I…. First I got it on Friday and after being sick all day long ended up having to go into the hospital Friday night to get re-hydrated. They kept me over night to be safe and by morning I felt much better. Jon came down with it on Sunday but thankfully Rowan didn’t get it since she is on a strict diet of alphabet soup, turkey sandwiches, and mac-and-cheese. I guess there are benefits to being a picky 2-year-old.
On Monday we met Dr Cheldelin from NW Newborns for our NICU tour before the normal Emanuel Maternity tour. They have this wall of photos of NICU babies that have survived and it is amazing what they can do there. I feel really good about Finley being in good hands but it is still so crazy that this is our reality. I kept it together pretty good during that tour, but had to leave the normal maternity tour early because it was getting just to hard to hear about the “normal” delivery experience that I am not going to get. I am happy that I have the time to prepare myself mentally for what is coming – but somehow I know that no amount of preparation will truly get me ready for what lies ahead. And that is when I pray – because I know the only way I will be able to get through any of this is with God’s help. He has already gotten us this far – when I think of all the answered prayer so far, I feel comforted that he is with us in this and he will be with us in the those days ahead.
Today was another ultrasound and appointment with Dr Lee and everything is still looking the same, which is good. Finley did all the things they were looking for including the “practice breathing” and movements. She is head down and super active. The last 2 appointments she has had the hiccups. Next appointment is in 2 weeks, but Dr Lee was reasonably confident that since we haven’t had any fluid issues yet, we probably won’t. But as any good medical professional, he doesn’t rule out the possibility and hence the frequent ultrasounds.
Thank you for continued prayer for Finley and our family. Here are some shots from the ultrasound today…
If CHERUBS stays #1 in the division they win $30,000! If they can move up 1 place from 2nd place and win the contest, they can win $100,000!!!! This Phase of the contest ends on June 12th. At 2nd place overall right now and 1st place in their district, they are guaranteed to make it to Phase II where the real competition begins!
So pretty good news from the ultrasound. Or rather, I’m taking no bad news as good news! Things are still looking the same – no hydrops and amniotic fluid levels are normal. Right lung is visible and if I heard him correctly about 50% growth (compared to a normal baby at this time). The LHR which “doesn’t matter” is still in the 1.2-1.34 range. The left lung is anybody’s guess since they can’t distinguish between bowel and lung. Let’s just keep praying that she will surprise everybody and have a well-developed left lung! They estimate that she is about 3 pounds right now – which means she should be another big baby like Ro. We met with the neonatalogist and he was very nice. He told us exactly what to expect from the moment Finley is delivered. Once again, can I say how surreal this is? We had decided to use Rhonda Davis as our Doula again, and I know I am so going to need her especially in those hours after delivery when Finley and Jon will go into another room and I am left behind to worry and wait. Basically, as soon as the cord is cut Finley will be taken into the NICU where they will ventilate her and do all the things they need to do. Jon will go with them. I won’t see her until the doctors are all done with me and she is ready which sounds like it will be about 2 hours. We won’t get to hold her until after her surgery – but we will be able to lay a hand on her (as long as she tolerate that – sometimes with the pulmonary hypertension you have to leave them alone for while). Rowan will be able to go into the NICU and see her – we can have one visitor at a time with us in the NICU.
I will be touring Emanuel soon and also will be getting a tour of the NICU from one of the NW Newborn Specialists Doctors. There is the planner part of me that is happy to have these things to hold onto and “prepare myself” but then there is also this other part of me that has a hard time really thinking about the birth and the sudden reality of all these weeks of worry finally coming to a critical mass. Part of me really would like her just to stay put. Really thinking about the day she is born and those days thereafter really starts to stress me out. The “one day at a time” adage is really all I can deal with.
What to pray for;
– A miraculous healing! (a girl can dream)
-Baring that, that Finley’s lungs develop as much as possible and that she has enough lung function to support breathing after birth (without ECMO).
-No more complications before the birth and that I don’t deliver until 39/40 weeks.
-That Finley stabilizes quickly and that they can do the surgery a few days after birth.
– That Finley will be strong and survive (and thrive)!
-For strength and peace for Jon and I.
My verse for the week:Psalm 34:3 “I sought the LORD and he answered me and delivered me from all my fears.”
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.”