Surgery

I talked with a woman whose granddaughter had her soft palate closed surgically last week. She gave me a lot of helpful info. With Ellie's surgery only 23 days away, it was also somewhat comforting.

She told me that her surgery did last about 5 hours. The baby went back to the OR at 9 am, and at 2:10 they were all together in the recovery room. She also said a nurse would come out every 45 mins or so to assure them things were going well. I was surprised when she said her daughter held it together very well, only crying twice and once was because she was so sleep deprived (the other was when they first brought the baby out). Grandma said the baby was very swollen, and it was strange because the baby's features seemed to come back one minute to the next. They did end up having to stay 3 days in the hospital due to all her swelling. Also, she refused to eat for the longest time. After 3 days she finally had pudding for breakfast and was able to leave. I forgot to ask about tie-downs/no-nos. Anyway, the baby is about 98% back to normal this week, altho Grandma says still not entirely back to her old self. I had heard some babies bounce back within 48 hours but this baby was not the case. The baby is also a year old, Ellie will just be 6 months during her surgery. I said we were going in on a Tuesday, she said to plan to leave on Friday.

*sigh*

Stupid Wonder Weeks

Ellie has been exceptionally fussy today and I couldn't find a reason why. After all, she's eating like a champ, pooping just fine, sleeping through the night, no bright red gums from teething and she can't possibly be sick since she's still on penicillin. It may be a "wonder week"- aka a week where babies act differently because of a milestone (usually). A wonder week in this stage starts at week 23 and peaks at week 26, we're rolling into week 25. Evidently the baby's eyesight changes and they can now see near and far, so they begin to realize mom is out of reach, the toy is out of reach, they're way up high off the ground when being held, etc. That could be why. Or maybe she's just having an off day, everyone has them.

On another note, we're trying solids. I'm supposed to be pushing the sippy cup but I'm not. Its just not on my priorities. I guess it should be, I heard it helps after the surgery. So far she's had bananas, peas, guacamole and I made zucchini she hasn't eaten yet. I also need to find a peeler to make the applesauce.

While we're on the topic, her surgery is in 30 days. Yep, one month roughly. Another PRS baby, Zoe, had her surgery last week and the grandmother promised to update me on everything (knowing our surgery was just around the corner). I haven't heard back from her yet, I'm sure its been a very rough weekend for them. Ellie keeps trying to stick her entire hand into her mouth, and that makes me think she'll HATE the no-nos and be in them even longer than previously anticipated. Another PRS baby is having his surgery in March, and I made the same promise that was made to me- I would tell her everything and anything about our surgery so she would be prepared for her son's procedure.

Ear infection

The holidays went really well, Ellie was spoiled from the grandparents, of course. We haven't had any PRS related problems until now. While PRS babies are prone to infection, Ellie had skated through with no problems until now. I was talking to several of my mommy friends as well as my sister and they all said their babies had various illnesses and not one had a fever. Dana said her Cara didnt even act sick. It was just the hives that made her go to the doctor. My husband had mentioned Ellie had kept her cough for a few weeks. I had said when he got the sniffles around the 10th of December that he had given them to Ellie but her nose hadnt run and her sneezes had been few and far between so I forgot about it. She was pulling on her ears but that seems pretty common, especially with babies that teethe. Then she started sneezing more. And the cough lingered. Still no fever but the runny nose came back. No vomiting, no random acts of fussiness. But all that my friends and family had told me was that this year, illnesses seem to be in hiding. So off to the pedi we went. Ellie weighed in at 11 lbs 2 ozs. So she's staying on her same curve, and inching closer to being on the chart with all the "normal" babies. He also said that with her trunk and neck control as well as her interest in whats going on around her, her verbal skills (she did say MAMA while we were in Florida for the holidays) and how alert she was that he felt she was acting like a 7-8 month old. Unfortunately he also said she had an ear infection but he was pleased that she had gone 5 months without an infection, a near record for a PRS baby. So she's on that penicillin that is pink and supposedly tastes like bubble gum. Hubby and I both had flashbacks, yuck. She tries to eat it anyway, even with the grimace on her face.

38 days until the surgery. The thought of it makes me tear up.

No feeding tube

Ellie weighed in at 10 lbs 3 ozs yesterday, so there was no NG tube requested by her GI doctor!!! We were given 3 options for continuing feeding- the currently method, plus pear juice for constipation, regular formula + oatmeal, or regular formula + oatmeal cereal+ polycose and pear juice for constipation. Evidently the GI doctor is not a fan of AR, I have no idea why. However, I can't say enough good things about it; if we had used it earlier Im sure we wouldnt have had the brush with the NG tube. The nutritionist said she didn't understand why they didn't like AR either, but in either case I suppose its water under the bridge. Now, it appears we have to deal with the sniffles passed from father to daughter. I hope it doesn't get too bad for her, her Baptism is Sunday! She looks like an absolute angel in her Baptism gown, I can't wait.

December

2 months, 6 days to go. I went and looked at some photos of a "former" PRS baby who did not have distraction. I think Ellie's jaw is even better than hers was and so (1) Im eternally grateful to the mommy who did that blog (Ill send her a thank you note shortly), and (2) it makes me reconsider her plastic surgery appointment I scheduled a month before her surgery. But its December and so Im scared. Getting closer faster. And with the holidays this month, it might as well already be January.

Jinx

It appears I have jinxed myself. Ellie was doing so well, eating 6 ozs at every feeding with minimal spit up; in fact, we had no spit up at all for about 2 days in a row. So, when, on Friday, I announced my love for Enfamil AR and the joys of the new concoction we call formula+ I should have known it would be down hill. The vomit is back and frequent. She's back down to about 3 ozs a feeding. She's still hitting the overall target of what she needs (about 14-18 ozs) but its not as rigid, structured, and, well frankly, enjoyable as it was the first 5 or 6 days. I am now back to being worried about her weigh in next Tuesday.

Thanksgiving

Yes, I realize its the morning AFTER Thanksgiving. So Im thinking Thanksgiving may be my favorite holiday. I found out last year Thanksgiving morning I was pregnant, and this year my giggly girl watched the parade with me in my bed. I was so happy most of the day I was teary-eyed (btw, what up with that? I was NEVER a crier before I had her, now I cry all the time!). I had to make a quick store run (was painless, really) to pick up milk and so I also bought non-toxic paint and we painted her hands and placed them on a piece of paper for "hand turkeys." She was not amused, but we were. And I think a lot of her family will be as well. Its pretty freaking adorable. Also, I got a TON of things done while the daddy-daughter bonding was occurring. I have to say, I dont remember the last time the living room looked this clean! I dusted, I vacuumed, I made a dozen bottles. Im still trying to organize some things (baby stuff, of course like magazines on the shelf and spoons, bowls and sippy cups in the kitchen) but I have to say between me and my lovely hubby we got so much done!

As for an update, Im on here because I believe its no longer a fluke- Ellie really is eating better! I was so worried the first day she was starving and the next day or so that she was just enjoying something new but we're up to Friday and she is wolfing these bottles DOWN. Not only that, there has been almost no spit up at all! Its amazing! Its damn near miraculous. Im considering calling the Vatican. She eats 6 ounces at nearly every feeding (doubling her usual 3 ounce intake), skyrocketing past her normal daily intake. She's averaging 18 ounces a day, when the GI Dr said she only needed 14, and I had calculated closer to 15 (14.5 to be exact) for hydration. Im really trying to be cautious and remain optimistic. All signs point to one fat, happy baby though!

On a related note, I love my mother in law. I know, Im one of the few. Yesterday she reminded me why I love her so much (although to be honest, I think about what an amazing person she is all the time). The minute she read the email I had sent to the family about the disappointing GI appnmnt, she called us. She started out with Happy Thanksgiving, asked if I was in the middle of something (so polite) and when I responded no I could hear her sigh in relief that we could talk about the situation. She sounded so worried and sad about what had happened, and then tried to cheer me up by expressing how wonderful she thought I was doing with Ellie, how she knew we were trying so hard and doing everything we can, and we were doing such a great job and fighting so hard. It was really sweet. My mother in law used to work in nursing homes, and her generous heart knows no bounds. She bends over backwards repeatedly to make everyone happy. I dont think she's had a hot meal in her life- the minute your glass is empty or food looks low she jumps right up. She often gets trampled in the process, because she allows herself to be kind to a fault (read: doormat) but I really dont know anyone who really gives until it hurts. I have no doubt there is a special place in heaven for my mother in law.