Well, we are still figuring that out ourselves. And it isn’t over yet, but it is past time for me to acknowledge God’s amazing grace and provision…. And put together some kind of update before my mother stops speaking to me. That’s right. This has all happened so quickly and intensely that some of our family is still trying to figure out what is going on. (Sorry Mom!!)
We have received so much support, many questions, and a variety of potential solutions from everyone who has been praying for us. We read and appreciated every single message- and replied to very few. (Blame stress?) But the encouragement meant So Much. In the interest of answering a broad swathe of questions, I am making this quite detailed. Please feel free to comment or message me if you have something to add!
Ian was born in Johannesburg, South Africa on July 26th. He was full term and did not have the potential abdominal complication that was a concern throughout the pregnancy. We will never know if it was bad radiology or God’s healing… Either way we are just so thankful. I know a lot of people were praying and let me tell you- we felt it. (So no, this issue is not related to the pregnancy concerns. Ian is just working on his Prayer Baby merit badge!!)
After his birth we waited in South Africa just long enough for his travel documentation and returned to Zambia. Everything seemed to be going well. He was an interactive, perky little boy. He had a love/fear relationship with his siblings. He fed regularly, hated baths, and had an infatuation with 2am. Normal baby. Except that he wasn’t growing. We kept coming up with reasons like “It has been crazy hot, he is sweating out all his fluids” or “He is just a long, skinny, noodle baby.” However, people stopped saying “what a cute, tiny baby” and instead gave us scared looks when they heard his age. We knew it was time to see a doctor. So why hadn’t we taken him in? Well…. The problem was: in where? I was pretty sure it was a calorie problem but realized he needed to have some blood work done. And if there is one thing you don’t rely on in Zambia it is the lab work and the diagnostic ability of the doctors in the hospitals. Since Timothy needed to go back to South Africa anyway to get 4×4 kit done for the newly purchased field truck, we decided to go as a family and get a check up for Ian. From that point our entire life revolved around feeding him. We encouraged him to eat every 2 hours. I ate more calories and drank buckets of water. We were convinced that by the time we reached Cape Town he would pick up weight and we would feel like fools for worrying too much and feeding too little. (Why I thought that when we were feeding him every 2 hours…. Hey sleep deprivation is a dangerous thing!)
I didn’t know a pediatrician in Cape Town so I asked our friends Charl & Sonja if they could recommend one. I booked an appointment for the day after we arrived. We walked into the doctor’s office unsure of what to expect. Mostly I thought that I was going to get seriously told off for underfeeding him (naive much??) When the doctor saw us he was very kind and very thorough. Upon examination he told us that Ian weighed 7lbs 8oz. At 15 weeks of age. From that point on, our world started spinning at a whole new, horrible angle. We were whisked off to the lab for tests. I was referred to (a completely amazing) dietician who specializes in infants and breastfeeding. We spent most of that week talking to doctors, getting lab work done, and waiting. The biggest concern was determining if he has a genetic/metabolic disease. Apparently those can progress rapidly and cause permanent brain damage due to nutrient issues. Because he was feeding well and often but not growing this was a very real possibility.
By the end of the week (the longest week in my life) nothing conclusive had been found. In a last ditch effort to find a reasonable diagnosis (before all the scary genetic testing) the two doctors that were helping us decided to put in a feeding tube (breastmilk supplementaion plus extra nutrients). It was an experiment attempting to narrow down the possibilities. To everyone’s astonishment, Ian immediately started to gain weight- at an incredible rate. The doctors put him on a heavy feeding plan and began trying to work out what was causing the problem. Unfortunately, without a lot of testing- most of which is invasive and expensive- they couldn’t come up with anything definitive. After a few more referrals the best all around idea was to go in for corrective oral surgery and release his tongue tie. It was a small tie- really too small to worry about. But it was the only simple solution available. We had the weekend to weigh the pros and cons, deciding whether or not it was in the best interest of our drastically underweight baby to anesthetize him and start cutting up his tongue. We got advice from a lot of people and finally decided to go ahead with the surgery.
That made Tuesday the longest day in my life. Ian wasn’t allowed food after 2am. You can imagine how that went down! Checking him in and handing him over to the surgeon was the hardest thing I have ever done. The relief when they brought him out was intense and helping him cope as he surfaced from the anesthesia and became aware of the pain…. agony. The whole situation is something I hope never to repeat. His extremely low weight and emaciated state made every moment of that surgery and recovery absolutely terrifying.
We had follow ups the next day and all looked well enough. They left the feeding tube in as we can’t risk him losing any weight in recovery.
Complicating the situation, our visas were due to expire within the week. Ian had the surgery Tuesday, follow up appointments on Wednesday, and we headed north on Thursday! We stayed just inside the country (with the Le Roux family- some amazing people!) until our last day on the visa. Then the long road home.
As of this writing I would say that Ian has made a good recovery from surgery and it is just too early to say if this is the solution or not. We chose not to stay in South Africa on a medical visa because Ian would just be fed and monitored for a few weeks anyway. We might as well do that from home. If (please Lord no) this is not the solution…. We move on to the genetic testing. That would be expensive, potentially invasive, and none of the options are nice at all.
In the 5 weeks following his surgery he gained another pound. We are extremely grateful for that growth! It is a very good sign! As of today Ian is up to 9lbs 6oz!
We want to thank so many people-
The amazing doctors and dietician who have helped us so much
The van Wyk family for giving up a whole week to watch our other kids while we went in and out of hospital
The families who put us up with all our kids in tow
The many people who encouraged, prayed for, and supported us through this
God’s amazing grace, without which my brain would have stopped functioning from stress weeks ago.
Does he need to go on a special formula?
– No, at this point they are still figuring out if he has a metabolic problem. The supplementer tube with breastmilk worked well and eventually we were able to switch to bottle supplementation of breastmilk. Pumping and feeding is extremely draining… but it is the best solution for him right now.
Will you be bringing him to the USA?
– No, we are very, very happy with the doctors who are helping us in South Africa. At this point there is nothing else that can be done. It is wait, watch, and feed for a while.
Have you done any genetic testing?
– Yes. We had the most common/best fitting tests run. They came back negative. He doesn’t have enough symptoms to justify the cost of any further genetic tests at this time. The doctors have advised that until/unless he develops more symptoms, it would be like shooting in the dark.
Is there anything you need?
– Yes. Lots of prayer. We received financial help with the surgery expenses and that was a huge blessing. If we are able to do any of the blood tests here in Zambia it will be very costly… but cheaper than flying to Cape Town. We will have to see how that works out. But the main thing is definitely prayer for strength and growth and health.
Is his development on track?
– Yes. He is a bit behind in some areas.. and ahead in others. Pretty much a normal baby (which is very good!!)
Please feel free to comment or message me! We have been SO BLESSED with all the prayers and support!