Happy New Year to everyone!
Tomorrow is my last “tough anniversary day” in this journey we have been on. January 4, 2005 was my girls’ due date. Just think. If I never had my amnio, I’d probably just recently have given birth to my 2 little healthy beautiful twin daughters’ and my life would be completely different than it is now.
Brian is working a double (48 hours straight, so it’s just Kaitlyn, me, vomit and doctor appointments!)
Well I’ve got some updates, as always.
Yesterday Kaitlyn graduated from one of her doctors after a HORRIBLE test. (Good and bad news I guess). My big girl is graduating! (I guess I have to look at the bright side, right?)
Kaitlyn has had kidney/bladder reflux since she was released from the NICU last 2/06 Kidney reflux means that when her bladder empties the urine goes backwards (into her kidneys) instead of outside her body. She had grade 5 reflux (the most serious type) on both sides. This was bad. She’s been on a low dose of Septra (antibiotic) since this was discovered last February. I hate that she had to be on yet another drug, and long-term use of anti-biotic – yuck! Last February she had a powerful x-ray while they shot a contrast material into her bladder (via a catheter) where the reflux was confirmed.
In my heart I really felt that the reflux was gone, but the Urologist scared into continuing the antibiotic, as if I discontinued 9t, she could get really horrible bladder/kidney infections which could be kidney threatening. We were supposed to wait until next February again, but I really asked the doc if we could do it sooner as I wanted to get her off the anti-biotic. Yesterday she had to have this repeated - I had been dreading this test for months now. We found out once we got to the hospital that the test this time was even worse than last year.
First she had to have a catheter inserted into her bladder. Then she had to be constrained for at least 20 minutes (maybe 40 minutes) while they slowly filled up her bladder with a fluid and radioactive material (yes they brought the radioactive material out in one of the metal boxes with the scary radioactive symbol on it). Now, for those parents of Preemies, they probably well know that preemies especially HATE being constrained. I think it has to do with the fact that the first 4 months of her life she was constrained, wired up, tubes down her throat, into her hands, etc. Kaitlyn doesn’t like to be held, she doesn’t like to have her hands held and this sounded terrible.
She screamed (her fairly quiet vocal chord paralyses scream). It was terrible, tears rolling down her cheek – and my cheek! Brian was at work during the test (fireman, works 24 hour shifts), but he was able to leave to come to the hospital, I was so glad he was there to help hold her legs down. They then put towels all around her body and taped her down. All I kept thinking was that this certainly wasn’t going to help her desire to be held.
30 minutes later, as they slowly filled her bladder and waited for it to empty the test was finally over. But, at least we had some great news, it didn’t look like there was any signs of reflux. I had to go back to the Urology department (at UCSF) to wait to talk to him to give me the official answer. (there were at least 7 kids waiting to see him, uggh. I asked if there was any way (as my child was at RSV risk) if he could look at the xrays and call me with the results. They were actually really nice and had an assistant look and gave me the official word, she’s done with urology! This whole thing took all day long, but……
One less doctor for Kaitlyn to see from here on out!
The last few weeks have been really tough. As you all know, I recently commented on Kaitlyn’ progress with eating and vomiting….Well, she seems to have taken a turn for the worse again. It’s been really hard on me especially; as I was finally starting to think we’d turned a corner. Just a few days ago I had a 20 vomit day again!! Her phlegmy morning vomits came back. I have to empty her stomach and get 15cc’s of phlegm from her stomach. I’ve been trying to tell the doctors for ages now that the phlegm and the vomit are related. They just told me to talk to the lung doc about it (which didn’t make sense to me as the phlegm is in her stomach, not her lungs). The lung doc gave us inhaled steroids to give her (which is for asthma) to try to reduce the phlegm (I figured it wouldn’t work – it didn’t) and steroids are risky anyways.
But as the phlegm (and her noisy upper respiratory breathing) went away, her vomits greatly reduced and her desire to eat increased.
As her vomits returned (she never stopped vomiting before, but it was greatly reduced) her desire to eat/drink anything by mouth went away too. Where a few weeks ago she was actually pulling water to her to drink, now she’ll take one tiny bit and then push it away.
The phlegm went away on its own…and then came back…..I think I can attribute it going away to an alternative healer that I’ve been taking Kaitlyn to. Her name is Connie http://www.mymarinacupuncturist.com/index.html and she practices The Feinberg Technique: http://www.neuromodulationtechnique.com/
Today I had another appointment with Connie and she said that sometimes things can better and then worsen again. The previous week Connie concentrated on treating Kaitlyn’s “head shivers”. For many months now, Kaitlyn would “shiver” as if cold. She’d do this at all different times, mainly when she saw or noticed something. I didn’t really think about it after the last treatment (as I’ve been swimming in vomit and when something isn’t happening, you don’t think about it), but this morning I realized that she really hadn’t the head shiver thing much (or at all) the last 2 weeks since her last visit. This treatment is definitely a bit “out there”, but hey, I’m willing to try anything to get her to stop vomiting.
All of Kaitlyn’s therapists were convinced that she wouldn’t even crawl until she hit 12 months adjusted (now). And she’s been doing so great motor-skills wise. I think I can attribute the really great improvement in that area to another alternative treatment, Chranio Sacral Therapy Dr Barbara Newlon
Who knows if she would have gotten better on her own, but all I know she is improving. Let’s hope that today’s treatment helps get her vomiting back under control again. As 4 days ago I thought I was going to have a break-down when she vomited about 20 times in one day. It got so bad that I had to bring Kaitlyn back to sleeping in my room again so I could better listen and be there for night-time vomits. I thought we were going to have to go back to 100% breast milk again (right now we are on 50% breast milk 50% Compleat). She’s really started gaining some weight since we’ve successfully transitioned to 50% formula.
Weight check and other updates:
-Kaitlyn’s last unofficial weight is over 18 pounds (taken on our home scale).
-Kaitlyn loves to stand up (assisted). She can walk side-ways from furniture to furniture piece, but as soon as you try to hold her hands to help her walk) (Remember she HATES having her hands held) she lifts up her legs to sit again.
-For a few seconds she’s held herself up standing, but I don’t think she’ll be walking anytime soon, as there really isn’t any forward feet motion. The next physical therapy appointment will be good for this.
-The smiling has decreased as the vomiting increased.
-We’ve transitioned her to the big girl car seat, as her feet were hanging over the edge of her infant carrier. Strange to think that many parents transition from the infant car seats in just a matter of a few months after birth and for Kaitlyn it was 15 months!
-Synagis – Kaitlyn is still getting her monthly dose of Synagis ($1,500 each!) This helps ward off RSV that preemies with lung disease are very suspectible to. At least K’s Chronic Lung Disease is mild. A fellow micro preemie mom (Lovlorn twins) recently had to go to the ER as their daughter got RSV and had to be admitted.
Diet and eating
-Breast milk!!! Wow, I have to say the response I received from mom’s generously offering Kaitlyn their breast milk has overwhelmed me with gratitude. When things are really tough and I don’t know if I can handle much more, a wonderful mom emails me and generously offers her milk. This weekend I met 3 moms who donated milk to Kaitlyn, (thank you Mary, Marilyn and Jessica!) When we showed up at Jessica’s house, she even had dinner waiting for us to take home. The whole drive home I kept telling Brian how touched I am by the generosity and caring of others. And Jennifer (another micro preemie mom who has emailed me from Folsom), sorry I haven’t emailed you back yet to make arrangements, with the last few days of tests and such it’s been a bit crazy.
We’ve been trying to cut down on milk shipping costs (it’s crazy expensive to fed ex frozen breast milk over night), so I’ve been trying to find local donors. One mom (in LA (Orange County), (a fellow micro preemie mom, Hechung and daughter Alicia – linked to on my blog) has offered us a ton of milk, as her micro preemie doesn’t like frozen milk, and she’s been pumping for months and has a deep freezer full. If anyone reading this blog is driving between LA and the Bay Area, please let me know if you might be able to act as a currier and bring us some milk.
As awful as everything is, I have to try to find a reason sometimes for all of this happening to me, and I think of all the people I probably would have never met. I’ve been touched by so many people. I’m absolutely amazed how many folks have visited my blog…When I wrote my Christmas card just a few weeks ago, my blog ticker was at 63,000 - now it’s at 65,700. WOW!
-Eating progress – none, it’s gotten much worse again.
-Blenderized diet. My next goal is to start trying to transition Kaitlyn to a blenderized diet. She can’t be on frozen breast milk forever! This means we’ll be blending real food in a very specialized blender. http://www.vita-mix.com/ Children with g-tubes qualify to purchase a vita-mix blender at the companies cost with an RX from the GI doctor.
I’ve been very frustrated trying to figure out how to start this blenderized diet thing. I’ve been so forced into a box with how many calories and volume that Kaitlyn needs daily that I’m at a loss as to what to do. A local g-tube mom (Heidi) used a dietician in Arizona who I’ve decided to hire to help us get a handle on the blenderized diet: http://www.foodbytube.com/ She’s going to work out menus, fat, protein, vitamin, mineral etc requirements for Kaitlyn! I’m very excited. I think it is going to be a lot of work, but cleaning up vomit 24/7 is a lot of work too. Maybe this will finally help our little one stop vomiting. A Yahoo support group (Blenderized Diet group) had been a huge aid in supporting us. Blenderized-Diet Group on Yahoo
And, on the subject of g-tube feeding suggestions here are some resources
I’ve pulled together. Liz's G-tube Resources Page
Well, I’ll post some pictures soon for this post. I had to stop writing because the Physical Therapist came, and I’ve done a feeding which included cleaning up vomit 3 times. and I’m alone for 2 days!