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Monday, May 29, 2006

A Long Awaited Kaitlyn Update

I guess I finally have some “free time” to do a blog update. Today I was supposed to do something for Liz for the first time that I can remember…I was supposed to play ultimate Frisbee in a local tournament (The sport I’m actually a world champion in) for the first time in well over a year, but Brian suddenly came down with the stomach flu so instead I’m watching Kaitlyn.

My dad came up to visit his granddaughter this weekend, and he was surprised how “normal” she looked. She does look like a “normal” baby, but sadly she is still a preemie with all of her issues. Issues? Well I’ll take some time to recap what’s going on with Kaitlyn:

Weight and Age Check:

Kaitlyn is approx 11.5 pounds. She is going on (on June 4th) 5 months adjusted and 8 months actual.

Swallow Study:

At her swallow study over a week ago it showed that she definitely is aspirating. (A swallow study is basically an x-ray in which Kaitlyn swallows barium (a contrast material which shows up on the x-ray). I was able to get suited up (lead coat) to watch it. It was very strange seeing my daughter’s skeleton as she moved and swallowed.

What the study showed is actually good and bad news. (This was her 2nd one, she had her first swallow study while she was still in the NICU), was that for the first sip, she silently aspirated the stuff into her lungs, but then she actually swallowed decently well. Silent aspiration means that she doesn’t gag and cough when it goes into her lungs. My opinion on why it’s on the first swallow is because she’s not used to having “food” in her mouth, so until she figured out that was there (she took the barium out of the plastic-soft-cup feeder I’ve had some success with) she was able to swallow it. They also tried it a bit thicker and she did the same thing (aspirated on the first swallow then got it into her stomach.).

I’ve always believed she’s aspirated some, but I’m worried more about when she vomits and aspirates, as she sputters and coughs and it seems like a substantial amount than the tiny amount that she seemed to aspirate with her first sip.

So I’ve had varying degrees of opinions from the docs and specialists. The OT (her feeding specialist who watched the study), seemed to be pleasantly surprised that she swallowed actually fairly well (for not having eating anything much by mouth for months now), and felt that because her aspiration was small and was breast milk to go ahead and continue to try to feed her some by mouth. The Pulmonologist (lung doc) is ultra worried about the aspirating and is talking of wanting to have a fundo done (this horrible surgery where the top of her stomach is tightened so that she can’t vomit any more). I’ve talked to my pediatrician and asked her to get all the opinions together from the different docs/specialists and come up with a consensus.

Neither Brian nor I want to have the fundo done at this point (all though she still is vomiting quite a bit). Sometimes she can go 2 feeds without vomit, and then the next 2 will be horrible projectile. There is no pattern. I keep hoping that she’s going to grow out of the reflux vomiting. The fundo is a life-long surgery which doesn’t allow her to EVER vomit, and when she needs to (think stomach flu). It would make her retch and gag all the time, which I’ve heard from other preemie mom’s whose children have had the surgery is just awful. As the GI doctor told us, she’s still gaining weight at this point. I think the main fear is scaring of her esophagus (from stomach acid) and fluid in her lungs. I think also the constant vomiting makes Kaitlyn not want to smile and interact with us much, as she’s miserable (I know I’d be miserable vomiting all the time.)

I’m thinking they may want to do a more detailed Reflux study, to see if the Prilosec (stomach acid reduction medicine) is actually working effectively. I think this makes sense.

Paralyzed Vocal Chord

I actually have some good news to report. In the last week, Kaitlyn has started making throaty, guttural sounds (that’s definitely from her vocal chords). We first noticed it with her crying and now on occasion she makes the noise when she’s “talking” to us. Previously the talking was her pushing air in and out of her mouth/throat, making squeaking sounds. Now it’s definitely some noise!

We’d been told all along that IF she were able to find her voice, it would likely be hoarse, sort of a “Demi Moore type of voice”.

You can’t know the joy we felt at hearing her cry for the first time. That’s a sad situation isn’t it, joyful parents when their baby cries….Think back to the birth of your own child, you heard them cry the moment they entered into the world. We’ve been waiting almost 8 months to hear our daughter cry.

Now, these sounds aren’t all the time. I think she’s trying to get the hang of it. But when we hear it still, it’s so joyous to our ears.

Urologist – Kidney Reflux

Kaitlyn had a follow up ultrasound and an appointment with her pediatric Urologist to check in on her Kidney Reflux. She’s been on a low dose of anti-biotics now since she’s been home (feb 9th). Kidney reflux means that instead of the urine emptying into her bladder, it goes backwards into her kidneys. What is so scary about this is that it can cause very serious kidney and/or bladder infections via a Urinary Tract Infection. For such a young baby, they can be very serious and cause long-term damage to her kidneys.

The good news is that the Urologist was very pleased and saw the kidney reflux diminished. But he still wants her on the anti-biotic. I hate that she has to stay on it, and I’ve called him to ask why. I’m still waiting to find out and talk to him directly.

Eyes

I think I already updated on her last eye appointment a few weeks ago, so nothing new to report. Her eyes are still crossing, but as the doctor said was good, it’s not all the time. We are just waiting at this point for a follow-up visit when I think she’s 6 months adjusted so there’s nothing to do at this point and hope that they correct themselves. She is also slightly near-sighted (-1.0). This is very minor and if her vision doesn’t get any worse, she won’t need glasses! Remember that she had Stage 3 ROP and had surgery while she was still in the NICU.

Lungs

At her monthly Pumnologist appointment earlier this month (before the swallow study) the Lung Doc felt that she was doing ok, but based on her previous month’s lung test in an oxygen reduced environment she does still have lung disease and colds or respiratory infections are still very dangerous for her. No going up to Tahoe or flying on a plane for a while yet.

We’ve come out of “hibernation” a bit from the winter months, but I’m still ultra paranoid, (as the docs said we should still be cautious about: crowded indoor places, children in day-care, anyone who is sick, people touching her without washing their hands (especially strangers who LOVE to touch cute babies).

Every morning Kaitlyn’s been doing this yucky new thing. She gags and coughs and eventually spits out of all of this icky, gooey phlegm. It’s horrible. I’m not sure if it comes from her lungs or it’s just mucus from sleeping at night

Developmental

Kaitlyn still has developmental specialists visit us in the home about 2x/month. They are both (there are 2 of them) concerned about her continued lack of smiling and interaction with us. She looks at us, but often looks away. I find that she is willing to look at me the most if I’m singing softly to her (boy am I terrible singer) or talk very, very quietly. She is likely to have sensitivity issues.

Physically, however, she seems to be doing very well! She isn’t rolling over yet, but the specialists seem to be pleased with her progress at this point.
Hmm, well I think that’s it!

Personal

I've almost finished breat milk pumping. I'm so increbily sad, I feel horribly guilty. I'm down to 2x/day, but my milk has really started drying up and I think I'll even go to 1x/day today. I don't produce anywhere what she takes in a day any more, so my freezer stash is rapidly dwindling. (So glad many of you told me not to donate it). Just today I defrosted milk from February 1st (she came home Feb 9th). I dread the day she has to be switched to formula...I shoudln't have started weaning a month ago. With all of her issues (and aspirating issues) I feel totally guilty as breast milk really is the best thing for her.

I've been pumping now for almost 8 months!!! It's so hard to juggle work, taking care of her and everything else. I used to pump in the car all the time, as that was the only time I had to and from work. I still DREAD getting hooked up to the pump every day and night. Uggh, if I never see a breast pump again! I just can't do it any more. It's too much.

I’ve been busy real-estate work wise - I have 2 real estate escrows that have taken up all my non-Kaitlyn time. (I’d always love any real estate referrals you many know of anywhere in the US! I can help find a realtor for you anywhere if it’s not here locally).

Brian got the day off yesterday (Sunday of Memorial Day ) and I took a rare Sunday off and we went to the Muir Beach Volunteer Fire department annual BBQ – http://www.muirbeach.com/MBVFD_BBQ/index.html as a family of course. Kaitlyn seemed to enjoy herelf, she was very wide-eyed looking all around until she took 2 good naps. I can clearly remember going last year when I was pregnant and still not feeling very well. Here’s a picture from the year before.

Yes, I was still suffering from the "illsies" I felt when first pregnant last year. You can see my lovely little tummy with my babies inside - I was just starting to show. How I yearn to be pregnant again and blissfuly unaware of all that is to come.

Here's more of a view of the festival. I did a lot of lying down last year!

Now this year, we stopped to get an umbrella on the way there for some much needed shade for our fair-headed beauty.

It was sunny but windy, and in the shade, it was actually a bit chilly, so Kaitlyn is all dressed up, as she spent her time in the shade! Mom wanted some much needed sun after a year of being inside!


I have had a nurse come approx 2x/week for a few weeks now, but I could really use more help. The agency is having problems finding another nurse to fill in as the nurse we have (who is great) only wants to work a few times a week, as she’s a retired NICU nurse. I’ve come to the realization that I’m probably going to have to get almost full-time child care. We had always thought that Brian was going to be Mr. Mom, but that’s not going to work out. I think it would have been tough for him to do with a “normal” baby, and with Kaitlyn, it’s just too difficult. I have to work, so we are going to have to figure something out. I’m a bit in the chicken and egg situation with my work, as I need to work to make the money to pay for child care so I can work! That’s the life of being self-employed.

Then again, I do love my job and helping people find homes, so I think it makes me a better mom. (And I know my clients are very happy with me - as they tell me “THANK YOU - THANK YOU, LIZ, we are so happy to have found you!” And I’ll be able to do a lot of the work from home (I just moved my office home) so if I have help here, I can at least spend some time with her.

These 2 pictures were right after getting home from our big day out at the Festival. Serious girl. I think she had a good time though.

Still with her hat on and helping mom undo her car seat.

Mom had some fun with the camera during bath time the other day

I just love those feet, I kiss them every chance I get . As compared to:
Mom's finger with Kaitlyn's foot with Dad's wedding ring. Hard to believe that this was her foot when she was first born.

Kaitlyn's foot with Dad's wedding ring.

Mom and Kaitlyn's hands.
This is for my preemie blog-friend Zach, as we have a funny face contest going! Although it looks like K might be smiling, it's actually just her "talking" and I captured her with her mouth open making noises.

This is generally the expression we see most of the time, very serious, cross-eyed girl!

Kaitlyn's G-tube (aren't naked babies the best!) I sure hope one day we can get rid of the G-tube, but for now it is helping put on the weight! (not cross eyed in this pic).

A close-up of Kaitlyn's "Mik-key" G-tube button. The little clear plastic "tab" opens, then we attached the feeding tube to the little hole you see in the center. The black mark lines up with the one on her feeding extension and then it twists to lock. The two little red marks on Kaitlyn's skin above the button are where the surgeon made small incisions to check the button's placement with a laproscope, as well as one in her belly button.

Kaitlyn has takent a liking to sittng up (assisted) so I just got her this chair. She seems to like it, but doesn't quite know what to make of it! It think she looks so cute in it. (You can see her feeding tube extension sticking out). She has her typical serious expression.

With Kaitlyn holding on to the pink part of the chair, it looks like she's trying to steer a bumper car!

She does tend to get a little sideways! Like she's making a big banking turn!

14 comments:

JustJunkie said...

Hi Kaitlyn!
I wish you all the best for your life! You really can be proud of your mum and dad - they both are very "strong" parents and so full of love for you! And you are such a sweet little girl, also strong and very brave!

Best wishes and good look to you and your family!

Greeting from Austria/Europe

JP said...

Thanks for the update. I'm so glad to hear she's finding her voice! Halle had the same yucky spit-up mucousy stuff in the morning for a long time. I don't know why. After she started sitting up well she stopped.

It sounds to me that the swallow study wasn't too bad. At least she's only aspirating a little on the first swallow. I agree with you that on not wanting the fundo. Unless Halle develops a life threatening condition (severe lung or esophogial damage) we don't plan to go that route either.

Hope you all enjoyed your Memorial Day today!

Michelle Flannagan said...

Liz- Anna had the fundo done. She could still vomit (and oh did she vomit). It depends on how tightly the "wrap" is done. As Anna has gotten older and bigger, it has loosened (they checked it when they took out her feedig tube last summer) so right now it's only 60%wrapped. Talk to your surgeon about the different ways it can be done... Good luck! Michelle

Jill & Terry said...

Love your pictures, Your are right Kaitlyn does look like Zach in that picture. If they ever met, got married and had children we could all just sit around and laugh at the silly faces their children would make. Thanks for the update I have been waiting! Well gotta go get the camera :)

Anonymous said...

Sounds like things are improving and this is good for all three of you! Glad Kaitlyn is crying! Wha fun to be out an about and show her off! We missed you at the wedding! Love Nancy

Kim said...

So glad to finally have my Kaitlyn fix :) It must be wonderful to hear her cry and to watch her gain weight, though I know that the constant worry must be taking a huge toll on you. Keep kissing those tiny feet--they are such a great pick-me-up, aren't they?

Tonya said...

Thanks for the update Liz :) Sorry you didnt get your "You" time because of Brian coming down with the flu!

Glad to hear Kaitlyn is finding her voice. It is so exciting when you can actually hear your child cry.. lol

I hope she does not need to have the fundo done. You will have to let us know what happens with that.

I LOVE the pictures.. the serious girl one is adorable and love the little tootsies!! they are so kissable!!

stephasteph said...

So glad to read an update. i am in the same boat. Gotta work just to pay daycare and i can't seem to find a job. it is so hard and overwhelming. Kaitlyn is so beautiful!!! smiling or not, you can see it in her eyes that she is happy even with everything that she goes through!!!

miraclebaby said...

Wow, sounds like a lot of things are going on. I hope she continues to grow strong and that the stomach issues resolve. What a beautiful girl!

Jodi from PROM said...

Liz,
I love your updates. Kaitlyn is so gorgeous!!!

I know the guilt you're feeling regarding stopping pumping. I had a hard time coming to terms with it also. You have done a wonderful job pumping for so long. I know you come to a point where you just can't do it anymore. Remember, Kaitlyn won't hold it against you for stopping! A suggestion...once you start dwindling your frozen milk, you could wean her by mixing breast milk with formula. It should make for an easier transistion and also make your supply last a little longer and give Kaitlyn those antibodies for a little longer.

I wish we weren't all the way across the country from one another and I could give you a little respite and give Kailtyn some snuggles.

Hugs,
:) Jodi

Sarah said...

I've said this a million times, but Kaitlyn is SO STINKING CUTE! Love the pics.

Don't beat yourself up about being done pumping... you've done such a great job!

I hope that the consensus is that she doesn't need the fundo - poor girl doesn't need any more surgery!

Rachel said...

Hi Liz,
my son was born at 25 wks so I am familiar first hand with some of K's issues.
You are doing an amazing job and most research shows that somewhere between 2-4 so many of these preemie issues resolve, to the point where you would never know K was a preemie.
Babycenter's preemie parenting board is really helpful and so many of those moms are dealing with reflux/aspiration/fundos/g-tubes. They are a wealth of knowledge.
Blessings to you and your family. Your strength is inspiring.
Rachel

natalie said...

Hi Liz
Your daughter is adorable. Thanks for sharing your blog with me. I really appreciate it and being able to see the pictures. Don't feel bad about giving up pumping. I gave it up after 10 months because it was also too hard to work, take care of Natalie and take care of the household chores. Natalie had the same sleep shirt when she was little. Best of luck to you and your family.

Donna
Mom to 33 wk Michael 5 and 23 wk Natalie 21 months

Kristin said...

Happy be-lated 8 month birthday to Kaitlyn! She is so very cute! It is so neat to be able to share our stories with each other via the blogs and on the message board. You are doing a great job of keeping Kaitlyn growing. All of your efforts with the tube feedings is paying off!!!!