To Mend a Broken Heart

[[If you are on my email list, you have already read this]]

Tuesday afternoon we were admitted at Tenwek Mission Hospital, where Abigail’s surgery was to take place. There was a medical team mostly from Maine Medical Center in place to provide utmost care. The waiting began.
18301982_10154282309656567_7845067636097227812_n
I handed Abigail over to the team at 5pm on Wednesday the 3rd of May. My eyes instantly welled with tears. The next 4 hours were the longest 4 hours I’ve ever experienced. At exactly 9pm the head Surgeon, Dr. White, came and found us in the pediatric ward. “Everything went perfect,” he said, “they are finishing up and will be moving her to the recovery room and then you can go see her”. We waited and waited some more and then I got impatient and went up to the recovery room around 9:40pm.18198758_10154284011021567_4279908786265358608_n

 

They were just about to call me anyway, so I had good timing. It was hard to see her, but at the same time I felt so much relief.  That night I stayed by her bed until 2 am, when the nurses made up a bed for me in the emergency receiving area so I could rest a bit and promised to wake me up if anything changed. Regardless I was up at 5 am and back at her bedside. That morning she drank almost 5 ounce of formula and it was like I had a different baby. Previously she would never take more than 3 ounces in a setting because she got too tired.

18274863_10154284755966567_5747424192566805730_n

18221585_10154286387396567_2607254800345547281_nWe stayed in recovery (post-anesthesia care unit) until Friday morning, where we were moved to HDU (high dependency unit) where they can closely monitor post op patients. We moved from HDU back to the pediatric ward on Saturday afternoon. We were then discharged Monday afternoon! Abigail passed through post-op with flying colors and all the Drs were very impressed with her recovery. She continues to do very well and in 6-8 weeks she should be able to do everything a baby her age would do. She is already sitting with much more strength and endurance than pre-op and is taking her bottles like a champ. She turned 7 month old on the 6th while we were in the hospital.
18274727_10154292417076567_8976454681171171256_n

18342182_10154294334921567_2712654691649750881_n
There is something that brings you together with strangers when your child is sick. We made bonds with 5 other families whose children were having similar surgeries. The families of baby Fiona, Faith, Matthew, Joseph and Chara. I believe 11 surgeries were done in the 5 days the team had to do them. Abigail was by far the youngest and smallest of them. We shared stories with these 5 other families. We checked on each others children. We laughed, we cried, we worried, we prayed. Unfortunately less than 24 hours post operation, baby Fiona passed away. She was 2 years and 4 months old and weighed a mere 12 pounds. She was diagnosed with Tetralogy of Fallot and suspected to have DiGeorges syndrome. If she had lived in a western country she would have had surgery shortly after birth, and I am sure her life would have looked very different. Instead I watched as the team worked for almost an hour to revive her, doing everything they could possibly do. I heard her mother’s shrieking cries in the hallway when they told her, I watched as they carried her lifeless body out in a cardboard box. The harsh truth of being born in Africa. Please pray for baby Fiona’s family as they grieve. And please pray for these other families as their children recover.

The time has come

[cross posted-everywhere]

Fullscreen capture 522017 105859 AM

We got the phone call from the hospital. We need to go in after lunch today to be admitted and Abigail will be having open heart surgery tomorrow! (That is as long as the children prior to her stay on schedule). When we met with the Dr team Saturday evening we received a mix of good and bad news. The good, her ASD (the smaller of the two holes) has been closing on its own and is no longer an issue. The bad news is the larger hole, VSD, is much larger than expected. She is also in heart failure which pushed us up near the top of the list for operations. This is common in children with defects like hers, and should be completely reversed with the operation. The head surgeon assured us it should be a straight forward closure, which brings some relief. But this is still our itty bitty baby girl going into major surgery. Please please please pray. Will update if they tell us a set time, though I won’t have my laptop it will probably be through FB/instagram.

http://www.instagram.com/kellymarietz
http://www.facebook.com/kellymariemollel

The constant battle

I’ve been going back and forth on if I wanted to write anything before we go to the hospital. If you are on facebook or Instagram you’ve seen what we’ve been up to. Seeing the giraffe’s and the elephant orphanage. Eating our way around Nairobi. I had set up those few days in Nairobi to try and distract myself from what was coming. Though I could still feel it. In the fun and excitement of Nairobi something loomed over me. It sat on my shoulders and weighed me down. It casted a shadow over my head. It slipped in through all the cracks.

Fullscreen capture 4282017 32346 PM
Abigail at 6 weeks and 29 weeks. Same shirt. Sized 0-3 months

It’s fear.

I’m afraid. I’m terrified to be honest. Why is it my baby girl? Why was she born with this condition? Why do I have to place her in the hands of a surgeon at a mere 6 months old. She’s not even 12 lbs yet. She’s still so tiny and fragile.

Though we were told upon her birth she had a heart murmur, I didn’t think twice about it. They didn’t recommend anything else, they didn’t set a follow up.

She had symptoms from the start; we just didn’t quite know what we were looking at. The symptoms are so subtle for her type of defect: constant feeding; falling asleep quickly when eating, but not staying asleep very long before needing to eat again; sweating while feeding; fast breathing; trouble growing and gaining weight. It was so easy to explain these things away, which is what I did. Breastfed babies eat frequently, so intervals between feedings don’t matter. Some babies are not sleepers. I’m so hot all the time so she’s probably just sweating from me. Babies breathe faster than big people. It was all so dangerously easy to explain away. CHDs can be subtle and insidious, even when your baby’s heart is literally failing. We were incredibly lucky that the delay in diagnosis didn’t cost her her life.

Even when we finally received her possible diagnosis, at just over two months, I didn’t yet start to worry. But that day in the cardiologist’s office in Dar es Salaam, when I heard the words, “your daughter will need surgery”, my world collapsed. Every moment of every day I worry. I know I shouldn’t, please don’t write to me and say things like “Don’t worry, God’s in control.” I know that He is. And trust me, I am trying to surrender everything to Him. But if He decided to take my daughter home, how would I handle that? I can’t even begin to think without tears.

We meet with the Dr(s) tomorrow. From there they will give us a surgery date (within the week). I will update when I can.

In the meantime, even if you are not on facebook or instagram, you can follow us on http://www.instagram.com/kellymarietz without an account.