I both love and dread Finley’s follow up appointments. I love being able to get some reassurance that all those organs are staying put where they are supposed to be, that the stitches are holding and her patch hasn’t sprung any leaks. I love showing off my miracle baby. I love them gushing over her chubby belly, thighs and cheeks. But I dread the drive. I am always overcome with memories as I drive the same route that I took during Finley’s 49 days in the hospital and I always get a few butterflies on the way. I dread how Finley cries during the ultrasound and now there is nothing I can do to soothe her. Apparently the last hospital stay and the NPO time has made Finley equate the binky with starvation and it no longer quiets her down. And I dread the waiting for the results. After the ultrasound tech finished her part of the exam, she goes to the senior doctor to make sure she got all the shots required. With a screaming, moving baby – this is not easy to acquire. For some reason yesterday this took an extra long time to get them to return to the room. In that 30 minutes I started to worry that this time lapse meant something more sinister. His face and attitude was very somber and he got to the task at hand with a seriousness and gravity that made my heart still. It seemed like he was focusing on the diaphragm area and kept taking the same views. I started to get more nervous. I prayed urgently to God that this this wasn’t another reherniation. My heart began to beat even faster and my stomach was just doing flip flops. I finally voiced my concern and asked, “are there signs of reherniation?” The doctor replied “I can’t say yet – I am still trying to determine that. It is hard to see clearly.” Not the reassurance I was hoping for. The next 15 minutes seemed to take an eternity and when he finally said, “I see no signs of reherniation” I burst into tears of relief. Once again, I let the fear creep its way in and allowed it to play in the playground of my mind. We are not friends. You are not welcome here fear.
We made our way up to the Surgeons office for our appointment and Dr J kept saying that she really is a perfectly normal healthy baby. How amazing are those words? They are going to continue to watch for reherniation – but what he is really concerned about is her bile duct. You may remember where we last left off – an almost surgery in October (https://finleyanabelle.wordpress.com/2010/10/12/no-cyst-i-repeat-there-is-no-cyst/) that was cancelled because the blockage went away and Dr Bliss said that there probably had never been a cyst, just a blockage or slow moving bile, and that her bile duct is just a little larger than normal. Dr J thinks that the cyst is still there. The plan is to do another ultrasound in 3 months and then a MRI when she is 12-18 months (unless she becomes symptomatic before) to get a better view of the area. She is still too small to be able to really get a good picture of what is going on in there. He thinks she will eventually need surgery to remove the cyst and repair the area. I am thankful for his watchfulness and caution. But also think he is wrong. I really hope he is wrong. The last thing I want is for Finley to have to endure another surgery.
There are so many positives – that she didn’t need the surgery at 2 1/2 months, that we have skilled doctors following her closely, our proximity to excellent medical care- that she is in God’s hands always. For this rare condition, most people don’t know they have these cysts until much later in life and if untreated for long period of time, these cysts can create cancer in the bile duct due to the long term inflammation. We are so fortunate to already be watching this area.
So we wait (again). God really wants to teach me patience and trust. We wait and we pray. For the bile duct to shrink back to normal size and that there is no choledochal cyst hiding in there. This, I will not fear. Remember fear, you aren’t welcome. I really think he is wrong. God – let him see your power.
Well, I am officially full term, even though we want her to stay “cooking” for another week and half at least. I got the BEST present today at my ultrasound appointment- the ultrasound tech took at ton of 3D images. I have included a few of them here – including the one of Finley smiling! It made me cry to see my baby so clearly. She stuck her tongue out at us a few times and gave the best pouty face. Such a blessing to be able to see her already like this. LOVE her chubby cheeks!! I can’t wait to meet her. The appointment went well – she scored an 8/8 for her BPP, my fluids are at 24 – the high end of normal, but Dr Lee isn’t worried and NO progression since last check… still at 1cm, 50% effaced, -3 station. Just trusting in God to carry us through. I have never spent so much time in prayer – I am definitely learning to bring all things to him and praying boldly.
Please continue to pray that her lungs will be functionally mature, that she doesn’t develop pulmonary hypertension after birth, and that she stabilizes quickly and they are able to do the surgery within days rather than weeks. Also please pray for babies Noah, Niklas, Elijah, and Whitney currently fighting their battles (see other CDH blogs for their stories)…
Psalm 33: 20-23 “Our soul waits for the LORD, he is our help and our shield. For our heart is glad in him, because we trust in his holy name. Let your steadfast love, O LORD, be upon us, even as we hope in you.”
I will start right off with the good news… Her growth was 37% this time (up from 31% last time) and they estimate her to be 5lbs 11 oz right now. Heart looks good, doesn’t seem to be under extra pressure from the organs in the chest cavity, and no fluid accumulation. My amniotic fluid is looking good at 19 which is at the higher end of normal, but not excessive yet. You’d think that my stomach was extra big hearing strangers go – “whoa, any day now, huh?”
Praise God for listening to our prayers, and I just hold steady to believing that all these things in her favor will mean that she will have the strength to fight once she is here and God has plans for my little one. I will be 36 weeks as of Friday – and I can’t believe that she will be here in 2-4 weeks. My finish line is approaching and her starting line.
I’m not posting the ultrasound shots because they aren’t very good this time.
1. That her lung growth will continue and that we will all be amazed by how much lung she has at birth!
2. That she does not get the severe pulmonary hypertension after birth.
3. No ECMO is needed after birth.
4. That she stabilizes quickly and surgery can happen within days of her birth.
5. That she says in until at least 38 weeks.
6. Prayers for other CDH babies currently in the hospital around the country fighting; Noah, Niklas, and Elijah.
Psalm 34:3 “I sought the Lord and he answered me and delivered me from all my fears.”
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…
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.”