Tuesday, July 25, 2006

It's Almost 7/26

First of all, many apologies for all of you who either regularly check my blog for an update on Miss Kaitlyn, for those who have posted comments or sent me emails on my plea for help earlier this month. I think I just basically became too overwhelmed by everything to do a blog update, then it became so delayed that the task of doing an update became even harder.

I’m sorry that I may not have been able to get back to many of you, I hope that you’ll excuse my lack of response – please just know that I do READ ABSOTLUTELY everything that you post and email to me, and I greatly appreciate your thoughts, concerns, suggestions and prayers for us. (I currently have 364 emails in my inbox alone that need responding too)!

It’s absolutely amazing to me that my blog now has received almost 33,000 visitors! Wow. I wish I could get that amount of traffic to visit my Marin Real Estate website:

Also, with the heat wave we are having being inside the house, sitting in front of my computer is an impossible task. I know those in other parts of the country hot weather is the "norm" for summer, BUT, I'm guessing you all of A/C. It rarely gets above 90 here in the summer, so no one has A/C. This week it's been over 100 every day. EVERY DAY! It was over 110 on Sat and Sunday. And we don't have A/C! It's horrible! I've been taking Katilyn for indoor "Mall walks" to try to stay cool.

I’ll post pictures to this entry soon – so check back….

Well, where to start….

Our crazy life full of doctor visits, vomit, working has continued as always…Here’s a brief list of doc visits from July: Liz and Brian dentist a number of times, Kaitlyn Pediatrician appt, K Lung appointment, K Early Intervention appointments at home (3x), Liz ENT appointment (for my continued jaw issues), K NICU follow-up appt, K GI appointment, K Physical Therapy appt, K ENT appt (for her vocal chord next week). I have a new real estate listing: ; Brian played hockey in the Annual California Firefighters Olympics all last week in San Jose, Kaitlyn spent 2 nights at the center in preparation of a real vacation that Brian and I are taking in August; I was able to meet one of my online micro preemie friends the beginning of the month:
Holland and Eden Blog

Kaitlyn updates:

New GI second opinion: Well, unfortunately, we didn’t learn anything new. I have to say, though that K’s previous GI doc has been much, much better. We’ve been communicating regularly via email, which has been very helpful and consulting with her dietician. We’ve tried to make a number of changes (MANY based on all of your suggestions), AND we have seen some improvement in the amount of vomiting.

She now actually has some of her day feeds (usually the 6pm) with NO vomiting! Yes, NO vomiting. One day, she actually did the 10 am and 2pm with NO vomiting (she’s NEVER had the 10 am feed with no vomiting before), but then the day after that she had a huge vomit day. So we are still just taking things a day at a time. BUT, it’s not 20 times a day any more.

K has changed reflux meds, she’s now on Prevacid (instead of Prilosec). I’m thickening her feeds with rice cereal instead of oatmeal cereal. We have increased the calorie content of her feeds (and reduced the volume), we are using Good Start formula during the day and primarily breast milk at night.

She’s now on 100 ml of formula 3x a day. (we used to mix it 50% formula/50% breast milk) but are now on just formula during her day feeds (to save the BM for night feeds), which is around 28 calorie (extra formula and rice cereal). At night she’s on 1/3 formula (while I’m still awake) and 2/3 breast milk (about 650 ml total). When I put her to bed, I usually get a large vomit out of her (via burping), switch her to breast milk and then she’s vomit free the rest of the night.

The issue still comes down to the fact that I still will run out of breast milk. Can you believe the guilt I feel for stopping? Many of you remember the pictures of my FULL freezer - I thought I’d never run out but I also never thought she’d have issues with formula.
Freezer Picture

I am absolutely touched by the generosity of 3 women who have generously offered to donate their breast milk to Kaitlyn when they heard my breast milk plight: My sister in law Elissa in CT; another a local preemie mom, Lisa, who has had 2 preemies; and the 3rd a total stranger in TX, MacKenzie, ( who heard of my story and blog from her friend who met me at the NICU while Kaitlyn was still there.

Now some of you out there in Internet land might think it’s strange that I’m actually accepting the offer of these amazing women – but as we speak, they are arranging to ship their frozen milk to me. I really am speechless as to this amazing generosity and willingness to help out our little Miss Kaitlyn. Thank you, thank you, thank you Elissa, Lisa and MacKenzie. You will always be a part of now of Kaitlyn!

And to you, my beautiful daughter Kaitlyn when you are old enough to read this – I just want you to know how many people out there love, pray and just want you to get better!

The new GI doc was pleased with her overall weight gain, and doesn’t think we need to go the route of doing a fundo surgery (yeah, as Brian and I are very against the surgery as it’s a life-long lasting surgery, which causes gagging, hacking and coughing - as she wouldn’t be able to through up but her little body would still try to). I think I’d be more for the surgery if she wasn’t “thriving”. But, all her docs (with the exception of one) are in agreement with us, that as long as she continues to gain weight on the scale (she’s going along nicely just under 5% at every check-up) we are to continue as is. The GI doc did certainly agree that it’s extremely tough on us. I asked about long term consequences of the vomiting on her esophagus and teeth (she still doesn’t have any yet), but because she’s on the acid reducer (Prevacid), she should be ok.

Kaitlyn has a follow up eye appointment next month, but SO far, her eye crossing situation has greatly improved. In fact, we think it may be gone all together and just took care of itself. This is great news.

Physical Therapy:
At K’s physical therapy appointment last week, the PT said she couldn’t believe how improved Kaitlyn seemed. Brian and I too feel that in the last 2 weeks she really seems to have turned a corner in terms of interacting with us.

Remember how I would always say that Kaitlyn averted her gaze from us. It was so difficult, knowing that your own daughter was too overwhelmed to want to look at her own parents. BUT the good news is that seems to be getting much better. She really does like to look and watch us closely now! Wow. I really needed this affirmation from her. It makes my heart sing when my daughter loves to look up at me. Now she’s still not smiling, but I’ll take the gazing! It’s amazing. I have actually gotten a few, very fleeting smiles from her, she’ll stick her tongue out and smile a bit with her eyes and the corner of her mouth turns into a smile. One day, I got about 4 of these in a row, and another day I got about 2. But that was well over a week ago, and I’m waiting for a repeat appearance of her fleeting tongue smile. Certainly not long enough to capture it on film.

She still isn’t rolling over or sitting up on her own, or pushing up with her arms while on her tummy, but the PT felt really, really good about her progress and “normal” babies pick their own time to do these things sometimes too, so I’m not too worried. She’s strong, and is really starting to get more coordinated in grabbing with both of her hands.

At her lung doc appointment, the doc indicated that she felt very good about Kaitlyn’s lungs at this point. They sound good and clear. She’s still never gotten sick, and we are looking into arranging another lung capacity test in a reduced oxygen environment. She still has BPD, but she is generally doing really well. Her breathing often sounds congested, but it’s always limited to upper respiratory, and not her lungs.

Right after the 4th of July, I was able to meet with Billie, her husband John, and their 2 beautiful micro preemie twins, Holland and Eden.

There were here in Northern California visiting her Aunt, and we arranged to meet for dinner in San Francisco. Like Billie, I’m so behind on updating of our wonderful visit….but to you Billie and all of your family – we had such a nice time getting to know all of you and meeting the girls. I felt like I already knew all of you and it was just a wonderful, wonderful thing to meet you all in person. I feel a special bond with you, and I’m so glad you go the chance to meet and hold Miss Kaitlyn. As we’ve commented to each other before, neither of us knows which is harder: the death of a child or having children with disabilities. They are both so terribly sad and difficult, and my heart goes out to all of you and Holland and Eden. They are absolutely beautiful girls, so incredibly loved by their parents and I’m hoping that we’ll be able to keep in touch as the years go by. I will post some pictures of our visit together.

George Mark Center and a vacation!!!

I posted a few months ago about a wonderful, wonderful respite and hospice home for children. Well, Brian and I decided to actually plan a much-needed vacation for my upcoming 40th birthday and our 2nd wedding anniversary. We are going to take Kaitlyn to the George Mark Center for Respite care. In order to “try it out” I took Kaitlyn there for 2 nights earlier this month.

In order to go, the “prep” time was crazy for me. It required a doctor visit as well as written orders, and that’s right when K was vomiting like crazy so it was hard to give official “food intake orders” as they were changing minute by minute. Lots of faxing of authorization forms from all different agencies and doctors…. I had to pack so much stuff for her (just for 2 nights), syringes, wedges for sleeping, feeding bags, frozen breast milk, formula, rice cereal, measuring devices, bottles, etc. etc. I have to say as I was packing everything that this really wasn’t feeling much like respite, as the work to get her ready was overwhelming.

BUT, once I got there, it was so wonderful. I’ll post some pictures from the place so you can see how amazing it is. I actually spent the first night there in their Parent Apartment. I sat in the room in the evening, in front of a beautiful picture window that looked out to a rose garden and just read a book as the sun set. It was wonderful. Then I left her there for the 2nd night, which wasn’t as relaxing, as once I was home I had a million things that needed to be taken care of.

We actually do have a vacation planned at the end of August! Brian and I are going to go to the Dominican Republic for 9 days! We are going to an all inclusive resort and we can’t wait! It will be for my 40th birthday (uggh!!!!) and our 2nd wedding anniversary. What a year we’ve had! We’ll be taking Kaitlyn to the Center while we are gone.

Tomorrow is a day I’m dreading. Tomorrow is July 26th.

July 26th 2005 was the day of my fateful amnio. One year ago my life changed for ever. If I hadn’t had that amnio I would have 2 healthy twin daughters with me today. It’s hard to even think about how different things would be. I constantly wonder what would Corinne look like, what would her personality be like. What would Kaitlyn’s voice sound like? Would she smile and eat? How big would they be? So many questions that I’ll never know the answers to.

I’ll post pictures soon!


Kristin said...

So glad to hear that your GI docs were willing to listen and are changing things for Kaitlyn. It's great that you have a place you feel comfortable taking Kaitlyn so that you can enjoy a trip with your husband. Thanks for the detailed update, I have been thinking about you and Miss Kaitlyn. Can you believe our babies are almost 10 months old?!

Kim said...

I can not tell you how happy I am to hear that things are going so much better. I could "hear" your frustration through your emails and blog posts and so wished for a miracle for you. Glad to hear you and Brian are going on vacation--you deserve it!!

PreemieMom said...

I'm so happy to hear about Kaitlyn's progress. I can't imagine what you're going through, but I am so excited for you that she's coming along so well. Have an amazing time on your vacation. You so need it.

Allison said...

Thanks for the update. Now that I found your blog, I think of you all ofter. George Mark Home sounds amazing! What a fantastic thing. Glad to hear that things are a bit better!

KMW said...

Hi Liz,
I hope you are taking care of yourself today--July 26th. What a hard anniversary. Living in SF, I can relate to the heat and no air conditioning, but I am in the city, I imagine it must be terrible in Marin! I also wanted to say how glad I am that you find George Mark helpful. I am actually a social worker at UCSF in pediatrics, so I have made referrals there any case, they are great, and not enough people know about them. I'm glad things are better, and again, I hope you are taking care of yourself today.

Stacy said...

Liz - keeping you in prayers today. The anniversaries are so hard...

I'm glad that Kaitlyn is feeling better - I hope the vomitting continues to improve!

Tonya said...

I am so glad you updated us and I am so happy to hear that Kaitlyn's vomiting has improved some and that she is looking at you both!! That is so exciting.. I know how much better that must make you feel because I know how it bothered you! It is wonderful of those ladies that are sending their BM for Kaitlyn.. sometimes people are so surprising when you think there are no good people in the world anymore.. Very glad to hear it! I don't think I ever even heard the story about your amnio?? although it is probably impossible try not to think to much about it and get depressed... You have a gorgeous daughter who is now LOOKING UP AT YOU!! *hugs*

Jill & Terry said...

Hey Liz,

Just read on your blog you met my neighbors Holland and Eden, funny they live so close and I have never met them. You live in Ca and have!!!! Very cool. So things sound they they are going well for Kaitlyn. Looking forward to more pictures. Have a great vacation.