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!

Katie pics

I'll update on K's swallow study soon (it's not great news), have been too busy lately with work and Brian working (so childcare falls on me for 48+ straight hours).

Today was a HUGE vomit day, I've changed her clothes about 5 times today!

Look at my "smart" girl...

Now, you have to know that Mom had a lot to do with the book "prop" in K's hands, but it sure looks great in the photos for the brief moment she's holding it! :)

And my beautiful sleeping girl

National Twins Organization

I've mentioned it many times in the past, but my twins club has been incredibly supportive of my family throughout this whole situation.

Well, I recently got the March/April edition of the National Twins Organization and they put in an "In Memory Of" for Corinne:

"Corinne McCarthy struggled with life for a few short hours following her birth and that of her twin, Kaitlyn on October 4, 2005. Corinne's mother was on bed rest during much of her pregnancy. She has created a website (www.aLizard.com) sharing her story of the amnio that went wrong, and a chronicle of events leading up to Corinne's death. Corinne is survived by parents, Brian and Liz McCarthy, members of Marin Parents of Multiples and twin sister Kaitlyn. Club members provided the family with prepared gourmet meals."

I've actually heard from twin mom's throughout the country who read Corinne's notice.

Mother's Day

Kaitlyn has a Swallow study tomorrow morning to see if she is aspirating (swalloing milk into her lungs). Hard to do when she doesn't really swallow much, but I can get her to swallow a few sips of milk out of a "cup feeder". She's also taking a very small amount of rice cereal once a day. Hard to tell how much she actually gets, as most of it ends up on her chin. I keep trying though.

Kaitlyn has hit the 11 pound mark! She's still vomiting, but seems to be keeping something down as she's gaining weight like a trouper. She's finally on the growth charts (I think about 3%).

My first Mother's Day has come and gone. I was lucky enough to get to spend the day with both my mother and my daughter. It was a wonderful day indeed. Thank you all for your wonderful Wondeful Mother's Day wishes to me. I really appreciate all of you! I've been out of tocht he last week a lot, as my DSL was down for almost a week, and wanted to spend time with my mother while she was here.

My wonderful husband also made my day spectacular.....


Brian had to work on Mother's day, but he arranged to have flowers delivered! Look at this gorgeous bouquet of flowers!! And on top of that (with a few hints from me) he got me matching pink pearl earrings in honor of my twin daughters. He left them for me, and when we spoke on the phone after the flowers arrived, he told me where he hid the earrings. Beautiful pink pearls with tiny diamonds. 2 Pink pearls for my 2 twin girls. It made me sad, but also happy to have Kaitlyn with me today.

The next day when he came home, I was wearing the earrings and a silver necklace....he said to me that my necklace didn't match (funny that he'd notice such a thing) and he proceeded to pull out a matching pink pearl pendant and chain! he wanted to give it to me in person! He really made my day special (now, so all you girls aren't too jealous,) I've learned a bit over the years, I did tell him that I really wanted something special for this, my first mother's day for all that I've been through..Sometimes you just have to say flat out what you want so you won't get disappointed. I'm over the fact of needing to be surprised, and then he went and completely surprised me!

My mother Corinne and her grand-daughter katilyn. Remember that Kaitlyn's sister is named after my mother. I'm so sad that my mother never got to meet her granddaughter Corinne. At the bottom of this post, I'm adding a very touching poem for us mothers' of angel babies....My mother and I both shed a few tears over this poem.. My mother is actually a mother to 3 children. She lost a baby too late in utero, so I should actually have 2 siblings.

Proud Nana with Kaitlyn - So nice that it's finally warm out and you can see Katilyn's nice rolls on her arms and legs!

Kaitlyn really is the queen of funny faces (her crossed eyes certainly add to her comical faces.) I swear though, she really does make a lot of funny expressions!

Ugh, those crossed eyes!

She's started to learn to "talk". Now remember that Kaitlyn has a paralyzed vocal chord and so her talking probably doesn't sound anything like a normal baby. She inhales and makes little squeaks. She definitely is trying to talk to us.

With the warm weather, katilyn's 2nd wearing ever of a dress!

OK, this picture was too cute. Her little bald head (with growing hair). She was sleeping on her tummy (horrible I know), but I've been told by other reflux baby mom's that stomach sleeping is great so I don't have to worry as much about aspirating, as if she throws up, she's down already. She really loves sleeping on her belly. (This is only during the day, under close supervision!)

Crying, upset Kaitlyn. Now, you'd think she'd be screeching a terror, but with her vocal chord issue, all you really hear is this hoarse, throaty (air rushing) sound when she screams. She'd be great to take to a movie theatre or something (if we weren't under hibernation order!)

She really likes trying to stand up and go in the air. I've actually almost gotten a few smiles when she tries to stand up.

Mom giving my kissable daughter a kiss on the head.

A Mother's Day Wish From Heaven
By Jody Seilheimer

Dear Mr. Hallmark,
I am writing to you from heaven,
and though it must appear
A rather strange idea,
I see everything from here.

I just popped in to visit,
your stores to find a card
A card of love for my mother,
as this day for her is hard.

There must be some mistake I thought,
I saw every card you could imagine
Except I could not find a card,
from a child who lives in heaven.

She is still a mother too,
no matter where I reside
I had to leave, she understands,
but oh the tears she's cried.

I thought that if I wrote you,
that you would come to know
That though I live in heaven now,
I still love my mother so.

She talks with me, and dreams with me;
we still share laughter too,
Memories are our way of speaking now,
would you see what you could do?

My mother carries me in her heart,
her tears she hides from sight.

She writes poems to honor me,
sometimes far into the night
She plants flowers in my garden,
there my living memory dwells
She writes to other grieving parents,
trying to ease their pain as well.

So you see Mr. Hallmark,
though I no longer live on earth
I must find a way to remind her
of her wondrous worth.

She needs to be honored,
and remembered too
Just as the children of earth will do.

Thank you Mr. Hallmark,
I know you'll do your best
I have done all I can do;
to you I'll leave the rest.

Find a way to tell her,
how much she means to me
Until I can do it for myself,
when she joins me in eternity.

Kaitlyn's First Food

Tonight Kaitlyn tried some rice cereal and breast milk for the time! I was so excited to see if she possibly was more interested in eating food rather than breast milk. I can't say she loved it, but she did swallow a few mouthfulls (hard to believe by all of it running down her cheek).

This was Kaitlyn's first taste of something other than my milk (well, she mostly has tasted my milk on it's way up rather than on it's way down).

Not too sure about this stuff

Definitely not a fan, but at least we got a few spoonfulls (and swallows) down first!

Katilyn has started taking an interest in our talking. She loves to listen to us talk (when she is interested in us at all, which isn't all that often) and hold on to our lip. Not sure if you can tell, but she has quite a grip on Brian's lip.

Another view, she really is watching dad - it's so exciting when she actually pays attention to us (you can see my trusty breast pump on the couch in the background. Funny thing actually about the breast pump, when the nursing coordinator came to our house last week, she asked Brian: "is that a suction device", Brian laughed and said, "well, umm, it's suction all right but probably not the type you think, it's Liz's Breast pump"

In this picture she's blowing bubbles (another new thing she's just started doing the last few days).

Those darn cross eyes again.

Mom writing a blog entry with Kaitlyn sleeping on my lap a few days ago

Dad "dancing" with Miss Katie while she's being fed via the pump

The goofy girl

I had a nurse come help me today! She is going to come 2 times a week! We feel really lucky to have found her, as she is a retired NICU nurse who doesn't want to work full time any more! It took all of my time anyways, to explain all of what needs to be done, but I'm so excited and I think she'll be great with Miss Katie.

Ok, my daughter hasn't gotten the hang of smiling yet, but she certainly is a queen of funny faces....

OK, this really is a crazy face.....maybe half of her is trying to smile (and half frown?)

Kaitlyn's eyebrows get really red all the time

She's really got the pout down

Just hanging out in her boppy

Sticking her tounge out at mom

Me, at the fireboat....everyone says I need to eat more. My arms do look a bit skinny here.....The last time that Katie's pediatrician called (and spoke to Brian) she told him that he needs to feed me more as I was too skinny. Funny, all of Katies docs are worried about me.

Kaitlyn loves to lay with her head back, and she has definitely found her hands, here she is just staring at her hand. You can see her feeding pump/IV pole behind her and Brian is holding her feeding tube.

These pictures are from our visit with Ethyn and his parents a few weeks ago. Ethyn was Kaitlyn's NICU mate, and also lost his twin brother. They are now each other's lost twins. Ethyn is still on oxygen, he is about a month older (adjusted) than Kaitlyn and weighs 15 pounds (I think or more). Ethyn is actually having surgery tomorrow (5/9, so send him prayers) . He'll have to be at the hospital for a week while he recovers.

More pictures of Ethyn and Kaitlyn (Katie is looking a bit bored with her big yawn) . Her feeding tube is attached.

Kaitlyn was sound asleep here (the tube hanging down from Katilyn is her feeding tube) and she seems to have lost a sock! This is Jenny's Ethyn's mom. We spent a LOT of time together in the pump room at the NICU.