Wednesday, October 11, 2006

1 year and 1 week old

Today Kaitlyn is 53 weeks old. Hard to believe that a year ago she had just come out of heart surgery and weighed a mere 1 pound 10 ounces!

Yesterday was a tough day for poor Kaitlyn.

It started out with a 9 am visit to her Pediatrician, where Kaitlyn had her 12 month check- up AND….vaccinations! No fun, poor baby!

Then we rushed to San Francisco (feeding tube and vomit in the car on the way) for a Physical Therapy appointment (she actually seems to like PT – it’s more like playing with a lot of toys).

While we were at the hospital, Kaitlyn had to have her blood drawn (for some 12 month check up stuff as well as allergy testing). I’ve been dreading this blood draw for a while, and held off doing it until I could have it done at the hospital, assuming that they’d have experienced infant techs. It was horrible!!!!! When I got there I asked the tech if he had experience with infants, he said yes. I’ve never seen poor Miss Kaitlyn as upset. Not only could he not find strong enough veins, he had to do it 2 times. She was thrashing, crying and carrying on so, we had to get some one else to help hold her down (oh, it’s bringing the pain of it all back to me as I write this). When the other woman was there helping hold her for the 2nd draw, she said, here let me do it and the guy (who tried the first time) said, “I have to learn sometime!” I about flipped out right there! I was livid, and said, I didn’t’ want him to do it and for her to do it, he said no, and continued, It’s paining me thinking about it again!

Oh it was terrible!

Then I rushed my crying baby to my doctors appointment nearby – I can’t get rid of my cough and I think it’s gone into a sinus infection of something so I got some antibiotics…What a day.

Today, the flu shot she got yesterday seems to have turned into a bit of a cold for her, and she slept on and off most of the day.

Kaitlyn Medical Update:

Her smiling has stopped. For a week or so we had on and off smiles, and now she seems to be back to her “normal.” Which means “Serious” Kaitlyn. She doesn’t acknowledge me - STILL! At this point (9 months) a baby should be interacting in some ways, and Kaitlyn really isn’t . It’s so hard. She does interact with toys and loves to play with them, but as far as socially – it’s not really existent. K’s Pedi said she continues to be concerned about her lack of social interaction. I asked her PT about it, whether this could be early signs of autism or something…she said she didn’t know, but she was concerned also. Oh great.

She weighed in at 16 pounds 5 ounces, 24 inches – 12 months old (9 months adjusted). She continues to vomit all the time. Her feeding specialist is trying to get her to play with her food, or at least put things in her mouth. I try to feed her once a day, some days she’ll put the teething biscuits into her mouth, other days, forget it. And if anything chips off, she makes the most horrible face and typically gags/vomits immediately. We have a LONG way to go.

Her physical development is still showing delays, but doing really well. She’s rolling all over the place, still not holding herself up on her arms much (which is required in order to start crawling), but she’s getting closer to doing so.

Here is an example of Kaitlyn's rolling abilities - when my back was turned she rolled right onto the hardwood floor!

Kaitlyn's birthday picinic a week ago Sunday was wonderful. The weather had chilled down a bit, but it was so nice to see so many friends come out to celebrate Kaitlyn's big day. We all had a fabulous time - thank you all for coming, and I'm sorry I'm so late on thank you cards!!

Here are some pictures from Kaitlyn's birthday picnic:

For her party, I had asked the bakery to make some little angel wings in honor of Corinne in the corner of the cake.

Kaitlyn seems quite interested in her cake!

She did go for the frosting, but I kept her fingers limited to the flowers, so the guests could eat some cake!

Some party picnic pictures

More pictures (on the ground is my step-sister Whitney, with her children Charlotte and DJ (who was due when Kaitlyn was due). Whitney gave us all of Charlotte clothes!

Kaitlyn and Ehtyn flirting with each other out of the NICU - see I told you they look like twins! (remember that Ethyn too lost his twin brother, so now K and E are twins!)

Kaitlyn is very interested in Ethyn!

Nana Corinne came to town for Kaitlyn's big birthday party! My mom really threw us the party for Katilyn and I coudn't have done it without her! Thank you Nana!!!

My dad flew up for the big day - he hasn't seen Kaitlyn in quite some time - he was shocked how big she's gotten.

Kaitlyn's first time wearing shoes!

Sleeping babies are the best!

And in black and white!

We've been trying a nebulizer treatment with Katilyn to see if it might cut-down on her vomiting (due to excess secretions) It didn't work, but here is a few funny pictures of Kaitlyn helping herself to the smoke! You can see the whisps coming out... She acutally liked to put her mouth on it - it was quite funny!

I gave her a breathing treatment tonight (not this picture), hoping that it would help prevent the cold she seems to have gotten from the flu shot from going into her lungs

In honor of both Kaitlyn's Grandmas! - back to serious Katilyn again.

Kaitlyn opening her birthday card from Aunt Elissa!

This was Kaitlyn and Corinne's birthday cake on their actual birthday (last wednesday). This was for just Brian, Kaitlyn and myself.

Now this time we let Katilyn go to town on the cake! She really liked mushing the frosting and smearing it all over the place, but alas, nothing to the mouth.

The cake on her mouth here was due to me - I put my finger up to her to see if she might be interetsed in the sweetness of the frosting - nothing doing! Nice face -she's saying, "I'm not very interested!"


stephasteph said...

Oh what great pics! it looks like she had a good time at her parties! It may be hard for you to tell being with her everyday but here on the outside looking in, we can see her growing so fast! And even though there is no smiling, i can really see her personality shine through. She is a beautiful girl.

Kristin said...

Beautiful pics :-) Thank you for sharing them!

sarah said...

Kaitlyn looks beautiful in her pictures! I know it must be really tough with all the challenges you have had throughout the last year, but you are doing an extraordinary job as mother to Kaitlyn!

Billie said...

Ooooh your bad blood draw brings back some awful memories. What a terrible experience that is. "I have to learn sometime"????? WTF?

We've had some really bad experiences and every time I am so mad at myself for not speaking up or doing something. It is SO hard to do in the moment though, cause you are just struggling to hold it together and get it over with.

Gosh, I can only imagine how difficult it is to deal with the vomit. Especially with no smiles. I don't know how you do it. Well, I do know a little bit. Just different issues. You are a wonderful person and an awesome mom. I continually remind myself to just take it one day at a time. That's all you can do.

I know you love Kaitlyn with all of your heart and you are doing the best job you can. That's all that matters. I think of you often. Kaitlyn is sweet and beautiful in her pictures, as always.

Hang in there Liz. One day at a time. I'm so sorry it's so hard.

KAL said...

Hi, I stumbled across your blog and found myself entranced by the pictures of your beautiful little girl. I'm so sorry for the loss of her sister, I can't even imagine how difficult that was and continues to be for you and your family. It sounds like little Kaitlyn has had a very rough first year and I hope that things only improve for all of you.

Anonymous said...

Hi- As an experiment, maybe you should consider spacing all these appointments and treatments as far apart as you can. Then you can see if Kaitlyn starts to smile more again. It could be that she is overwhelmed and/or traumatized (nicu reminders- who really knows how memory works?) -E

Colleen said...

Hi Liz, Brian and Kaitlyn. Happy Birthday! OMG, I apologize for not checking in sooner, but I wanted to let you know that Kaitlyn looks so healthy and beautiful. You really would never know the hardships you've all been through from these lovely Bday photos. You both look great too.

I wanted to share this technology with you that they use to find kid's viens:
They apparently have one of these at Lucille Packard Children's Hospital down at Stanford. Maybe you could get them to do Kaitlyn's blood draws in the future. Seems like an outstanding piece of technology that would save you and Kaitlyn a ton of stress.

Congratulations, and hang in there. Look how far she has come already! Keep the faith that kids really can develop at their own pace and turn out just fine. My boys are doing so much better now, and I was worried for so long. They are all different and special. Hugs to you all!

-Colleen Proppé

Jill & Terry said...

Kaitlyn is such a doll. I bet you just felt like slapping that tech. You know some people have no clue :(

The birthday gathering looks like alot of fun. You are truly blessed. Happy Birthday Beautiful.

Anonymous said...

Hi- I forgot to add that maybe you should find an OT certified in sensory integraton disorder. The gagging/lack of eye contact could be related (and treatable). -E

SXYMMA said...

David hated his birthday cake too. She's so pretty! I know the feeling about having them get poked over and over again for labs. What I've learned to do is call ahead and have an NICU nurse waiting for us - they know how to stick the itty bitty veins :) I hope all is well.

V said...

Hi. Kaitlyn is really lovely. It must be very hard, not getting smiles from her. We were very lucky that my daughter smiled a lot. She was behind tho', in many other areas like rolling over, sitting and eating(luckily she drank though).

We also had a bad experience or 2 with drawing blood. They could never find her veins and once the paed said I must tell them to wait for her to come down and draw the blood but of course the sister knew better and insisted on doing it herself. Then she battled, went from one arm to the other, stuck the needle in twice and eventually after she had her blood, looked at the form and realized she did not have enough. So then they tried to just prick her foot and squeeze the blood from there which also did not work so they had to try the arm again. I tell you, I was livid. After that I always insisted the doctor did it.

Michelle Fuller said...

Hi. I have a daughter who was born at 26 weeks. I haven't read all of your blog, but it looks like they have lots of the preemie basics in common. My daughter Alicia spent one month on a vent, another on CPAP, came home on O2, had PDA ligation. . . She was born 710g. My daughter also has issues with reflux, but compared to Kaitlyn, Alicia's reflux might as well be a burp. We do give her Prevacid and I also use pressure points on her. I go back and forth about whether I believe they are helpful, but I wanted to let you know where they are. One is right below her sternum, right at the top of her belly. You can push downward gently. Just a few times. The other is top few inches of her spine. Work your fingers up and down her spine, one finger on each side. These points can be worked before and after a feeding and any time it occurs to you. I'm thinking Kaitlyn is probably too sensitive to have her tummy touched at all after she's been fed, but as the mom, you'll know what touch isn't helpful.

I have friends who see various naturalpaths. I've practiced that type of medicine in my own life for a few years now, but I still go back and forth about it. When my friends tell me about anything new, I'm surprised at my reaction. As much as I'd like to follow their advice, I find myself dreading the very idea of one more doctor's appointment, one new thing to think about, one new thing to hope in that will probably disapoint me. So please just ignore this if it's not a helpful idea and just hear it as another preemie mom saying, "This is hard. I'd do anything to fix it for you if I could."