Kiah: an Update

Failure to thrive.

I didn’t even go into the appointment- I couldn’t. So when Theo came out with the paperwork and it said those three words, I was devastated.

Failure to thrive.

How is that possible? Up until a week ago, I honestly had no idea that greatly loved and gently nourished children could be failure to thrive. I’m realizing how naive I was. I would not have been surprised at all by a foster child entering my home having that label. And I figured it would only take lots of love and some good nutrients to reverse that label. Oh, how naive I was.

For the record, when the pediatrician diagnosed our Kiah as failure to thrive, she assured us that this label is simply because he is not where he should be, not because he is overly lethargic or malnourished. Failure to thrive is simply an observation of his progress, not a permanent diagnosis.

But let me go back to the beginning.

When he was born, he lost a few ounces in the hospital- totally normal. At his first appointment at one week old, he was still down a few ounces. The pediatrician said that it should be more than that, and told us to come back for a weight check in four days. And so began this long, long journey. Four days later, we went back for a weight check- and he had LOST weight- a significant amount. The pediatrician at that point admitted that she was very concerned and referred us to a lactation consultant to make sure that he was adequately taking in milk from breastfeeding. We went to the lactation consultant and had such an encouraging visit. She weighed him, then watched him eat from my breast and weighed him again. She was pleased with how much he was taking in from me, said his latch was great and everything looked wonderful. At the end of the appointment, I asked her to check for a tongue or lip tie, just to make sure. We checked that out and there was none. At this point, we went home encouraged and figured that we were doing enough. I would feed him on both breasts, then pump and feed him the pumped milk in the bottle. Although EXHAUSTING, we thought this was working. Turns out…it wasn’t. When we went in for our next appointment, his weight was the same as the week before. We had been hoping for at least a 5 oz gain. Everyone was stumped. He has plenty of wet and dirty diapers, he is consuming enough milk but he is not gaining weight.

And then the projectile vomit began. Not every feed…just one a day. Seriously. Just one. Theo and I even joked about how he already had his one vomit for the day, so there won’t be another. And when I say projectile vomit, I mean projectile and I mean vomit. I don’t mean spit up. Trust me on that one.

And then one morning his weight had dropped again, and my Mama heart just could not take it any longer. I bawled to Theo that we need to take him to the ER immediately. Around that time, we also stumbled upon an issue called pyloric stenosis. All of Kiah’s symptoms fit, and this condition is most common in firstborn Caucasian males (check, check, check). Of course, it was the weekend and we couldn’t get ahold of the pediatrician. We finally decided to stay home and wait until Monday morning to call. I’m fairly certain that I bawled my eyes out from Saturday noon until Monday morning.

Monday morning I called the pediatrician as soon as possible, and got an appointment 15 minutes later. We live 20 minutes away, so Theo and I threw everything together, threw the kids in the car and drove to the pediatrician. When they checked his weight at this appointment, Kiah had finally gained a few ounces. This was a good sign, but not AT ALL where he should be. Everyone in the room with us were completely stumped. We were doing EVERYTHING right, and yet here he is…our sweet boy, struggling so much with his weight.

And that was when she labeled him “failure to thrive”.

She immediately got us an imaging appointment to try to rule out GERD and pyloric stenosis. We had to make Kiah fast for four hours before this test, and that was incredibly difficult since we have been feeding him every two hours around the clock. Between the pediatric appointment first thing in the morning, and the appointment at the hospital that afternoon, our car battery died and we had to sit in the parking lot and weight an hour for AAA to show up. When it rains, it pours.

The test that afternoon involved an x-ray and a barium swallow and only lasted two minutes, but I most certainly sobbed the whole time. We could watch the screen and see the results immediately, and everything was CLEAR! No GERD and no pyloric stenosis. PRAISE THE LORD. They drew blood and that all came back clear as well!

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But what is wrong?? What is wrong with my baby? Why can’t he gain weight? Why can’t he drink as much at one time as he “should”? Why is he vomiting up some of his feeds, and not others? Why, oh why, is he failure to thrive?

I am surprised at how many people have messaged me saying their babies have also been labeled “failure to thrive”. I mean, it’s not something that you usually hear Mom’s bragging about. “Oh, your son walked at 9 months? Well, mine was failure to thrive”. Ha. It seems like so much of our identity is tied up in our children, so when a label like this is slapped on, it feels like I also have a scarlet letter on my chest- failure to mother. Failure to nourish. Failure to love and provide. I’ve struggled with posting pictures of sweet Kiah online because to me he looks so scrawny and lethargic. I don’t want to hear the comments about “feed that boy!” or “soooo tiny!”. I’m jealous of friends who birth eight pound babies because to me eight pounds is a goal that we are aiming for MONTHS from now. And yes, I would rather take the pain of birthing a bigger baby than the pain of knowing whether or not something is wrong.

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I have also struggled with many different aspects of this whole situation. On one hand, should I just avoid the doctors and tell myself that Kiah is on his own schedule? We know I’m making enough milk, we know he is consuming enough milk, we know that he is pooping and peeing enough. We know he doesn’t have anything wrong with his anatomy and we are starting to see progress…so maybe all this is just me being overly concerned because the doctors have freaked me out, or I’m freaking myself out.

But then on the other hand I hear the voices saying that something is wrong and that we need to find out a REASON. I need a diagnoses so that I can work towards a solution. Should I pursue a second opinion? Demand other tests? Continue going to the pediatrician every three days just to hear that he is not where he should be? Should I google more and more and march into that office and demand testing for any problem I could find that fits a symptom or two?

And the hardest thing in all of this has been fighting my anxiety and worry with the Word of Truth and the faith that I have always professed to believe. I realize that not only do I have crazy postpartum hormones, but I also have crazy anxiety over all this. I will read the Word and journal my heart out and finally surrender my burdens, only to pick them back up again two minutes (or less) later. I have come to realize that no one is in control here. I don’t have control over how much weight my child might gain, Theo doesn’t have control, and even the doctors don’t have control. My first reaction to realizing this is to be TERRIFIED. But then I am reminding myself over and over again that the only person who does have control is God himself. He is the one that knit Kiah together in my womb, and brought him into this world. He is the One who knows how many hairs are on his head and exactly how many days he will live. He is the one who knows every life that Kiah will ever impact on this earth. And He is good. And powerful. And mighty. And sovereign. And He will be faithful to bring us through this- no matter what the outcome is.

It is now Wednesday and since Saturday morning he has gained several ounces…about an ounce a day, which is exactly what he should be gaining. We are so encouraged by this progress, but he is still so far behind and we know he still has a long way to go. We have another appointment tomorrow with the pediatrician, and quite a lot hinges on it. If she is pleased with his progress (like I said, he HAS gained more weight in the last few days than in the first 2.5 weeks of his entire life), then we will just continue to do what we are doing and continue with weight checks. If she decides he has not made enough progress, she is going to begin sending us to different specialists to search for other diagnosis’ and rule out potential issues.

We ask you to pray tomorrow (at 11 am) for our sweet Kiah.

Please Pray:

  1. That Theo and I will have peace that passes understanding that can only be found directly in the presence of God
  2. That Tera will not be stressed by all these circumstances and appointments and chaos going on around her. She’s so sensitive, especially to my tears, and all of this has been fairly hard on her.
  3. That Kiah will have gained weight- significant weight- and that he will continue to do so each day.
  4. That Kiah will continue to eat and be able to keep it down…every single feeding.
  5. That if there is something wrong, it will be made abundantly clear to us as soon as possible (and that I would not worry that we are missing something and trust that the Lord will reveal it)
  6. That God would be glorified through this whole situation

 

 

 

 

6 comments

  1. Kaila says:

    I’m so sorry you are going through this! I can’t imagine how frustrating it must be to be doing everything right and not know what is wrong. Prayers for your sweet momma heart that you will be able to be at peace. Hugs sweet mama

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