Well, yesterday Kaitlyn saw the Pediatric Urologist at UCSF to follow-up on the ultrasound from the day of her discharge. She had to have a catheter inserted in her bladder, where it was filled up with a radioactive contrast so she could be x-rayed. They put lead gowns on us so we could her still during the x-ray, if we have lead gowns, what do the x-rays due to her tiny little body. I started crying when we got there, I hate all of these invasive tests on my daughter.
They discovered that she does have reflux of the bladder/kidneys (This is different than stomach reflux). It means that she has high susceptibility for bladder/kidney infections as the urine goes backwards. She will have to now go on and stay on a low dose antibiotic for quite some time. If she gets a UTI (Urinary tract infection) it can cause long term major kidney issues.
The other tough thing going on is that Kaitlyn is throwing up again with projectile vomiting. This is just terrible, as it takes us up to an hour or more to feed her, and then she throws the whole thing up. A LOT. This morning for example, she nippled about 20 cc’s (just under an ounce), then I gavaged the remainder (55 cc’s), she seemed peaceful, propped on my lap, I had to desperately pump (I had just woken up and switched shifts with Brian), when I was reaching down to get her bouncy seat (which holds her upright) she proceeded to vomit her entire feed. (Well, I guess it was her entire feed). It got all over me, my clothes, the rug, her clothes. She was like a fountain of vomit it comes out so forcefully. I feel so sorry for her. So I changed her, changed me, cleaned the floor (as much as you can while you are holding her), then re-gavaged her 30 cc’s (an ounce). She may have lost more, but then again, she may still have had some. I had also just given her 3 medications (reflux medicine, iron, and vitamins), so who knows if she vomited all of the meds, I didn’t give them to her again.
Today we have an appointment with her regular new pediatrician, and we are very anxious to know if she’s gained weight for her first week home. We are most likely going to have to do something to address her vomiting. I imagine that we will need to see a GI specialist. She’s already had a swallow study while she was in the hospital, which showed she didn’t have reflux. But the docs decided to put her on reflux medicine anyways. She shows signs of reflux, as she gets very uncomfortable after eating and does better if she’s upright – classical reflux signs.
Kaitlyn, 2 days old: 1 pound, 10 ounces
Well, here she is now! 7 pounds 2 ounces
Naked baby pictures are the cutest! we took these on the 15th, again with her tube out before we put it back in.
She's still a little munchkin
ok, that's a cute but!
Looking at her papa
Sleeping on mom
I guess this is the site of a typical new parents house. I'm trying to eat dinner, check email, feed Kaitlyn (this was a LONG feeding session. ) Tivo remote ready to watch the olympics, breast pump in the background, syringes to feed Kailtyn her many drugs, her old feeding tube is on the table too with the orange tip, blankets and burp clothes at the ready, throw-up burp cloth on the floor pacifier, and Kailan (our dog) finally showing some interest in the slurping new arrival.
After eating, one peaceful girl, one tired mom
5 comments:
Hi- I have a former 25 week micropreemie (now 14 m actual) who went through reflux hell. We tried Zantac, Prilosec, etc. Sometimes things would work and then stop. I remember how traumatic it was to see her vomit so violently and how helpless I felt. For us, it was pretty random when it would come on, but it was every day!
What we finally did is add formula to her breastmilk (good start brand- pre digested) and hire an energy healer to work on her stomach. This solved the problem completely within a month and the docs were shocked that she didn't need meds anymore and was cured, as she was predicted to have the issue until at least age 2.
Its weird, but please consider hiring an energy healer to work on your daughter and/or using formula too. It changed my daughter's life (amd my sanity!). -E
Liz~
It DOES get easier, I promise! AS for the reflux, I can't remember what meds she is on...is it just zantac? Natalie kept having projectile vomiting too (and actually lost several ounces since she did not come home with the NG tube and we couldn't gavage anything) until they FINALLY added reglan. Now she "spits" up, but it is quite a bit different from the forceful puking that happened before.
I wanted to commend you on keeping up with the pumping with that freezer full of milk. I wish you all the best with breastfeeding. It is NOT easy with a preemie. I was able to get Natalie on full breastfeeding before she was discharged (only because several things fell into place, and I was able to spend nearly 16-20 hours a day for the week before she came home to get her on the breast). But now that we have added fortifier for increased calories, she much prefers the bottle. I think it is just a lot easier for them (and even the bottle is still tiring, as you are seeing). Natalie still does nurse, but often seems hungry afterwards, whereas the bottle puts her right to sleep.
Hang in there. While you do sound tired, you look incredible in your picture, and it is clear how happy you are to be home with Kaitlyn. AND she looks like she is thriving. She looks like a normal, healhty newborn...you would never guess how much (or how little) she weighed at birth from her latest pics.
Jera
She is simply stunning, Liz.
We did Reglan, too, and it was great for Brayden. What meds is she on for reflux?
Liz,
Kaitlyn is adorable! It gets better, really it does! The first week home is hard, and the reflux sounds horrible. Caroline (our smaller one), threw up a good deal of her food the first month -- now that I think about it, I wonder if it was reflux? But somehow she got through it, and kept gaining weight. That's the key -- weight gain. You might want to consider buying a home baby scale just to put your mind at ease.
I wish we'd met you eariler. My wife and I were living in San Rafael (where she grew up) until December while our house (elsewhere in the Bay Area) was being remodeled. If you ever need anything, please let us know -- my email is on our Blog site.
Hang in there, and congratulations on your beautiful baby girl!
Hi Liz,
Thanks for sharing those BEAUTIFUL pictures! Oh my seeing the one of Kaitlyn just days after birth -- brings it all back and makes you realize just how far she has come! She looks fantastic! Prayers continue to come your way!
xoxo,
Julie
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