Pregnancy with Tyler, not so fun. During the entire pregnancy I could not drink milk, eat any nuts, peanut butter, eggs, cheese, tomatoes, and any form of meat. Being that it was 100% different than my other pregnancies (all of which resulted in 4 boys), we fooled ourselves into thinking it was a girl.
Not so much.
We fooled ourselves into thinking we were entirely prepared for whatever Baby TyTy threw at us because we were "experienced" parents.
Not so much.
He was born via c-section (#5), doctors were surprised to find him feet first. He started crying while part of his head was still inside my stomach so the doctors hurried to squish his head out as fast as they could. Initially he had some fluid in his lungs but was fine within 24 hours. (Too bad my new abdominal hernia was a different story.)
Then the screaming started.
BEHAVIOR: He would scream. And scream. Then scream some more. He would scream at random hours. It was never at a consistent time or every single day so we couldn't pinpoint the cause of the madness. Our eldest had colic so we thought WORST case scenario he would outgrow it within a few months. Tyler again would prove us wrong.
APPETITE: Tyler was/is not a big eater. He was a decent nurser but would only eat enough to subside his hunger pains but never enough to drain me/stuff his belly. We attempted dream feeds (where they nurse while still asleep) but he refused those too. It was very unusual for us to have a baby who did not like to eat.
GROWTH (weight in percentiles): Born 8 lbs 1 oz (just over the 50th percentile)
- 1 month: 80th
- 2 months: 75th
- 4 months: 60th (Maternal instinct kicks in, doctor says it's because I am breastfeeding and Tyler needing to start solids. I wasn't so sure and opted to wait.)
- 6 months: 40th (Seriously? Doctor says, "You waited too long to start solids and now we have to play catch-up. Don't worry, he's fine." I know something is off.... Mister C and I aren't small people and, up until this point, had yet to create a small child. Tyler started solids. He was NOT interested. He would either nurse or eat solids but not both.)
- 9 months: 20th (Doctor: "He dropped again. Does CF run in your family? Maybe it's because he has an ear infection. It's possible his thyroid could be off. Let's run some tests. Do not worry though, he is too happy to be sick. Stop nursing and switch to formula and he will gain weight.")
- 10 months: 18thish (Maternal instinct: Something is seriously wrong! "We have to pin him down with 2 arms and shove food in his mouth. HE WON'T EAT!" / Doctor: "Blood work came back normal. It's a control thing. Do not force feed, only 3 meals + 1 snack. Trust me, he will be hungry and will eat again. See you again in 2 weeks.")
- 10 1/2 months: 8th (We don't force feed and he loses 3/4 of a pound in 2 weeks. Pediatrician thinks I have gone off the deep end, feels there is no reason to worry. Doctor: "Maybe he is not going to be a big kid/eater. You should never compare your children; even though all [four] of your other children are big for their age, he is just a small baby. If anything changes come back in ASAP." Strong words for a kid who is just 'small' don't you think? :)
- 1 day later: Tyler drank more than 5 oz at one time, first time ever. I do the happy dance. I lay him down to sleep and within 30 minutes I hear gagging coming from his room. I go in and find him half asleep and projectile vomiting. I call the doctor.
- 1 day later:- He has now dropped to the 3rd percentile. (Thinking perhaps our other pediatrician is not picking up on the urgency of the matter we see a different doctor. New Doctor: "He is completely healthy. Look at him.... I am holding him and he is not acting sick. He is fine, stop worrying." After some much needed convincing and pushing from my friends I become a strong advocate for my child and make an appointment with a pediatric gastroenterologist without pediatrician's knowledge. {I felt like an ignorant parent when I made the appointment; Receptionist: "And the reason for Tyler's appointment?" / Me: "Failure to thrive and not having an appetite. He's not hungry so I know something is wrong."} Appointment set.)
- The following week: Pediatrician calls me. (Old Ped: "We finally got the last set of lab results back and it appears he has something going on internally. His celiac serum level came back abnormal. You need to see a GI doctor. Don't worry too much about the results though because they can be a false positive [abnormal]." / I had no words. At last I am not crazy.)
- 10 3/4 months: 3rd percentile. Tyler sees Dr. Mark McOmber. (He mentions {without trying to speak negatively about the pediatrician} with Tyler's symptoms and behavior we should have come to him months ago. I love Dr. McOmber.)
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History Part 2 to follow.
Don't know how i missed your blog post, since i have been following and check my blogger dashboard daily. I am so glad that you have a doctor that you love. This may be the biggest struggle of EE for me thus far. We have a GI an Allergist, a peditrician, and a dietician. Not one of them is really "our Dr" especailly with the EE i feel like i bring something up and they say "oh that's a GI issue" or "you need to talk to allergy about that" ugggghhhhh
ReplyDeleteso frustrating hope that with the new doctor you are bale to put together some more pieces to the puzzle
Wow...I had no idea you were dealing with this! I'm proud of you for being an advocate for your baby. I need to learn more about EE. Hang in there!
ReplyDeleteHey Sweetums, it looks like you got some frequent flyer miles to Hell & Back. I'm so sorry. When your baby suffers, you suffer. Usually more. I hope your little woogums can get a course correction, and that you might try... oh, I don't know, maybe sleeping a little.
ReplyDeleteHang in there. Lots of love and prayers comin' your way...
You are a great example of doing what you need to do to advocate for your baby. He is in the best hands with you!! My sister Molly went thru very very similar circumstances with my nephew zac- he is 3 tomorrow and just 3 weeks older than Kate. Both of these little squirts started average to big (kate was 9lbs 9 oz, zac 8 something.) Anyway, they both fell down the curve like Ty until they were bobbing along at 0%. Kate the doc and I decided, just dropped to a new reality because it stayed consistent. My nephew, however, something wasn't right. Molly kept trying to get the doctor to acknowledge it was MORE than reflux, everytime he projectile vomited across the room, that he WAS constipated, every time she had to manually help "deliver" a bowel movement, that he wouldn't eat any food and freaked out at certain textures. Over several months she asked for more tests. The doc kept blaming it on her milk, quit nursing, go on that pricy formula, but nothing helped. She finally insisted she not leave without orders for an upper GI. The doc basically said will you leave if I give you the order? Well, the test was done, and he had a hiatal hernia, where most of his stomach was up inside his lung cavity pushed thru a hole in his diaphragm - he was physically unable to hold more than 3 oz and everything else shot right back up. He didn't absorb nutrients or fluid. The surgeon they met with said it was the largest of that hernia he had ever seen in a baby. He was 14 months old when he had surgery to repair it and never vomited again and gained 4 lbs in 1 month. Now, with kate and Zac turning 3, kate is still tiny, at 25 lbs, and Zac weighs 41 lbs.
ReplyDelete