Love and Dread

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 ( 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.


Finley had a great appointment with Speech Therapy at Emanuel on Friday and the Therapist said that Finley is right on track developmentally with all her feeding activity. She didn’t think the occasional gagging was a problem – maybe too big of bites, or showing us that she is done – and encouraged us to start with some finger foods (meltables) and thicker consistencies. She said Finley was a rockstar and she was super impressed!  While I was at the hospital, I stopped by Lactation to get her weighed and much to my surprise she had a huge gain this week and had hit 18 pounds. Such a huge praise.

Her core strength is getting stronger and stronger each day- it is so amazing to see her be able to sit longer and longer periods of time. Now I am scared she may be crawling before we know it.  In the next 5 months she will most likely start crawling and walking… this just boggles my mind. It feels like this first year is just flying by.

Please say prayers for Hollis this week – he is getting very close to being able to go home after a VERY long journey. He just needs to prove himself on full feeds by mouth for a few more days. Mama Kelly really needs to take her baby home and be with her WHOLE family again. We praise God for all he has done for Hollis so far and just pray that he can come home this week. AMEN!

8 months…

Finley turned 8 months on Tuesday. Four months until her first birthday. I am so excited and plan on having a HUGE celebration. To celebrate how far we have come. Finley is doing great – each day she is getting stronger and is able to sit for longer. Last week she couldn’t even make it to one minute and yesterday she sat for at least five. In her own time. It’s always been that way on certain things. The only area we are having some small delays is gross motor skills – but in the grand scheme of things – they aren’t big delays. We only notice them due to the intense scrutiny of an army of development specialists all watching.  She is doing awesome on fine motor skills.

Tomorrow we have an appointment for a side chair swallow study with speech pathology to see why Finley is gagging and coughing some during feeds/meals. It’s not all the time, but enough to have them check. I can’t quite tell if it is a problem with texture, or if she collects too much in the back of her throat before swallowing… so this study will help see what is happening. Her follow up with Pediatric Surgery is on the 26th and I am looking forward to the X-rays and Ultrasound to reassure that she has not reherniated. It seems like several CDH babies have reherniated between 8-10 months.. so I am trying not to obsess too much.  It’s a daily exercise in faith and trust. I guess that is also how you would describe our journey.