8 Month Sleep Regression

We are in it full force. I want to curl up and cry. I have a child who does not want to nap worth anything and that is refusing food. Thank goodness my therapist appointment is tomorrow. Shrink me!!!

They say this tends to happen when babies are about to drop a nap. It is nap time purgatory until she transitions to 2 naps on her own. This morning, she did not sleep AT ALL. I was tired of hearing her thump on the ceiling so I just got her up. When she's up she's cranky, when she's down she doesn't sleep. Rinse, lather and repeat.

What do I do with this child? The Hub's business trip to Germany in a few weeks is looming in the back of my head. How will I survive the week he's gone? At least right now when she's driving me crazy I can pass her off to him and usually he can get her to eat, or calm her down when she's fussing because she's tired, and then fussing because she doesn't want to sleep, then fussing because she doesn't want to eat.

It's a good thing she's so darn cute.

I owe you this much

I know my posts have been few and far between, but I guess I just haven't been in the mood to post. Life has been busy, stressful, perplexing etc. Sometimes I just feel overwhelmed by all the possibilities when it comes to The Chubs and her poor eating habits. We've at least narrowed it down (for the time being) to reflux, but we haven't ruled out additional causes.

Monday we had an appointment with the Genetics department at Children's. Although the doctor was helpful, you don't become a geneticist for your people skills. After inspecting The Chubs thoroughly, including her lady bits, the doctor began referring to her as "him" and "he" for about 5 minutes. I tactfully interjected that "she" had reflux, and I think from then on she got the hint.

Not much came out of that appointment because they are in the process of getting us pre-authorized by insurance to have testing done and until that "little" hurdle is jumped, we can't move forward.

To sum things up, they are testing for any reasons that she may be slow to grow or just small in general. One test would be to see if she has Turner Syndrome or Turner Mosaicism, meaning she would be missing the second X chromosome in all or part of her cells. If that was the case there would be a strong possibility that she would never be able to have kids. It is also possible that she may have some heart or kidney issues (although not necessarily likely since nothing of that sort has been detected up to this point), and would most likely be a short adult (under 5 feet tall). I hope for her sake, she never has to deal with infertility. We hope that if she does have TS, that it is the type where only part of her cells are missing the X chromosome because there would be a chance she would still have normal periods and be able to have children, and may only have the short stature, and none of the other complications.

There are other tests they are going to run but to be honest, I can't remember all of them.

The best thing that came out of the appointment is that she is now 12 lbs. That means she gained over a half ounce every day since her last weigh-in. It makes all my fighting for her to eat every day worth it.

Her body is 1st percentile and her head is 10th percentile. I laughed at that but the nurse said it was important for her head to be that big. They wouldn't want it to be the first percentile. Probably for developmental reasons.

I'm pretty sure she is intolerant to milk protein. We tried adding milk based formula to my breast milk a few weeks ago and she did horribly the next few days. Lots of crying during feedings and refusal after just a half - one ounce of milk. Once we moved back to the soy based formula she went right back to normal again. I'm still not eating dairy for this reason and trying to slowly transition her to the soy based formula exclusively. It will probably be a very slow process because I want to make sure she tolerates it well before I stop pumping. But oh, how ready I am to stop pumping.

Solids are a battle still. I'm still reluctant to even push them because I know she doesn't need them for extra calories yet because she's still small and isn't even drinking that much milk each day to begin with. I look at it as a learning tool though, so that she knows how to eat from a spoon. The frustrating thing is that she knows what to do, she is just very stubborn and will only open her mouth on her terms. I'm sure this is related to reflux and her oral aversions. Never in my life did I think I would have to struggle so much to get my child to eat. I thought if anything, that would be the easy part and that the rest of it would be more challenging. I guess it goes to show that you never know what to expect, no matter how prepared you are to have children.

We have our consult with the surgeon on Friday, then another follow-up with her pedi next wednesday. After that we have our Early Intervention assessment on the 19th, followed by a hearing test (which they require. I have no concerns regarding her hearing), and her GI appointment on August 6th. Our summer will be filled with dr. appointments and tests. My hope was for a summer of camping and swimming lessons, but if all of this leads to a baby with a good appetite that is growing and developing appropriately, then it's all worth it.

11 3.5

We had The Chub's weight check yesterday to make sure she's still gaining weight despite her terrible eating. Her weight was 11 lbs. 3.5oz. That means she gained 5 oz in the last 2 weeks. Not too great, but at least she's still gaining. Ideally she would've gained at least a half ounce a day. If you do the math, she obviously has not gained that much. But I need to count my blessings. She is still gaining, and that's what really matters right now. It actually feels like a huge victory in some ways. Getting her to eat everyday has been challenging to say the least. I feel like my life revolves around trying to force a bottle nipple down her throat. It's a battle back and forth. I try feeding her, she closes up her lips, fusses, turns her head, and pushes the bottle away. Today I spent the entire feeding trying to distract her with a mirror so she would eat enough.

I had a small breakdown last night. This has been going on for months now. I don't know how much I can take. But at the same time, I know the answer: I'll do whatever it takes. Because that's what you do when you're a mom. No matter how tough a situation may be, or how frustrated and overwhelmed you might get, the bottom line is you will do whatever it takes to provide the best for your child. If that means months of 40 minute struggles to get my daughter to take 1 or 2 ounces, so be it. It doesn't take away the frustration, the stress or the occasional emotional breakdown, but it reminds me that although the road may be long, we are on it together and my daughter who was definitely worth the wait, is also worth the extra effort, the tears and the $100 we'll probably need to spend replacing all the haberman bottle nipples she's chewed open. And today I'm feeling thankful. Thankful that my daughter is here after the initial scares, and questions regarding her health. And thankful that it could be so much worse than it is. I have a friend who is dealing with this with her twins and I admire her strength. I'm only struggling to feed one child each day. I can't imagine what she is going through struggling to feed two.

Thank you for your continued prayers for The Chub Muffin. Her next appointment is June 28th with genetics/metabolics at Children's Hospital.