Thursday, April 27, 2006

Take your daughter to work Day!!!

Brian called me this morning from work, saying he was sent to the fireboat for the day and would I like to come in and bring Kaitlyn and take a ride on the fireboat for take your daughter to work day!!!

Absolutely! Spring is finally here, and I haven't done anything fun for so long (remember yesterday's post?). Well here are a few pictures from the day........

Kaitlyn operating the fire hose. She's holding on tight! (A fellow fireman's grand daughter in the background)

Kaitlyn wearing dad's helmet.

Liz wearing dad's helmet and turn-outs (fire jacket).

Ok, isn't this what a fire helmet is supposed to be used for?

Kaitlyn steering the fireboat (well, the fire captain in the background is helping a bit!)

Kaitlyn with his dad the fireman at work on the fireboat.

Dad's wearing a FDNY shirt.

Liz and Brian in front of the transamerica building out on the bay. What a beautiful day (finally!)

The fireboat. SFFD has 2.

Afterwards, I took Katilyn for a walk down on the piers to the ferry building. It was time for her to eat and so this was the first attempt at feeding on the go. Her feeding pump is in the small black bag, you can see the tubing lead down to her; I think the adventure on the boat tuckered her out.

Yes, I'm sad. Remember yesterday I said that her right eye is becoming lazy....we'll here's proof of it. Not all the time. But when she does it (more often in the last few days), it's just terrible. Another doctore appointment to schedule.

Wednesday, April 26, 2006

Random Thoughts...Merry Christmas in April...

Well let's see here are some of my random thoughts in no particular order....

Well today Kaitlyn is "drinking" (via pump) milk from Christmas Eve! How funny is that. At least those are some days that I can remember what I ate - today she is enjoying a fabulous Christmas eve dinner that my mom cooked.

I'm still pumping 3 times a day. Can you believe it? I've been using a breat pump for a few days shy of 7 months! I pump it out of me and then I pump it into my daughter. The irony of it!

On Saturday Brian and I went to visit Kaitlyn's NICU twin, Ethyn (who also is a twin-less twin). This was the first social visit I've had in I don't know how long, and the first time we've taken Kaitly anywhere besides the doctors office. It was soooo nice to spend some time with other parents who totally, completely understand how difficult our life is. We took some pictures, I'll post them soon.

Kaitlyn won't eat anything. It's so frustrating. I think people don't really understand how hard this is. Family, friends, unless you can live a day or two in our lives, it's hard to comprehend the future that we have ahead of us.

I think that one of Kaitlyn's eyes might be becoming "lazy". I've noticed it more and more lately.
She still really avoids looking at us. Sometimes she gets upset when I hold her and would rather be put down alone. I think this could be the beginning of preemie sensitivity issues. She avoids our glaze. She's almost 4 months adjusted, and by this time, normal parents have been rewarded for all of their sleepless nights with months and months of smiles. Not us.

Now, don't get me wrong. I am rewarded just by looking at my sweetie pie, I don't think there's a more beautiful baby anywhere (yes, I'm a proud mama), and my heart melts when I see her.

I'm trying to work, every spare minute I have is spent working if I'm not taking care of Miss K. It's been great getting back into work at least, as it does take my mind off everything and I really love my work.

Some days we she vomits a lot, some days it's hardly at all.

The week before we visited the most amazing place. This is a respite and hospice home for children here in Northern California. MEDICALLY NEEDY PREEMIE MOMS NOTE: they would love to help you! They have agreed to provide respite care to us for Kaitlyn. This means that we could go away (gasp! go away) for a few days. The place was absolutely amazing and is the only one like it in the entire US. It's about 35 miles from our house. Amazing, amazing wonderful place. I started tearing up in their beautiful chapel, (as well as a few other times when I was there). Just knowing I could (and was allowed) to take a break. For me? Wow. Thinking back of my ordeal, starting back in July - I guess this is the sacrifice we make for motherhood? I just never expected it to be so hard.

Please spread the word about the George Mark home. They are there to help! I told them about all my on-line preemie friends and they told me to spread the word! I'll probably put this again in a separate post.

We are supposedly getting nursing care to help us starting next month. Our insurance only covers it for a limited number of days, so I feel the need to stretch it out as long as possible. I'm about at my wits end (as is Brian) .

The March of Dimes Walk is on Saturday! Thank you alll so much for your amazing generosity in supporting us. We've raised almost $1,200! This is the March of Dimes main fund-raiser for the year. If it weren't for MOD, our daughter probably wouldn't be here with us today!

The weather is finally beautiful today!!! Yes, it lifted my spirits, but have I done anything to enjoy it? No.

As I said, random thoughts.

Thursday, April 20, 2006

New Kaitlyn Pictures

With the warm weather, I was finally able to dress Kaitlyn in some of her great new outfits from friends. This outfit was from my mom's employees down in Southern California! Thank you JFF!

I took this picture today! The girls hung out when dad was at work.

Kaitlyn got a bath today (sorry the pic is a bit blurry), but I thought you might like to see her g-tube in her tummy.

Here is the feeding tube attached to the g-tube, sticking out of Kaitlyn's clothes. It's not attached to the food in this picture. When we feed her, we connect the feeding bag (that's connected to a pump and hanging on an IV pole), open the clamps (it's white) and start pumping.

Kaitlyn out for dinner! Yes, we went to the city last weekend to try out the new pump that allows us to pump without gravity, meaning the food bag doesn't have to be hung over the pump. Kaitlyn was quite curious about dad's mustache.

She's "talking" in this picture, not smiling, even though it looks like it.

Yeah, dad's mustache is now gone, this was on easter sunday.

Kaitlyn on easter sunday in her new BOB jogging stroller, the stroller was one of the wonderful gifts from all the realtors in my office.

Walking in support of my girls & Official Announcement & New Cousin!

I'm sorry I wasn't able to mail everyone our birth announcement, I mailed out 100 and still would have loved to send so many more. So I'm posting it here for all to see.

Help Prevent Premature Babies

March of Dimes has an annual fund-raising walk in support of trying to prevent premature babies. I just last weekend decided to walk and raise funds myself in names of my girls.

I set what I thought was a lofty goal to raise $1,000 figuring if I got half-way there I would be happy with the short notice (2 weeks).

Well, I was so shocked today when I hit that goal already! So many of you have reached out to us in so many ways, and now in support of this great organization! Thank you!

I haven't gotten much exercise what so ever in the last year (still recovering from my 3+ months of bedrest) so the 6 miles will be exciting for me to walk. I may even try to bring Katilyn along in our new jogging stroller (courtesy of all the real estate agents in my office), but I would have to pump feed her on the road, so we'll see.

Here's a link to the girls Walk America page. I do have a picture of both of them together, Corinne is holding Kaitlyn's hand. (It may be hard for some to see) Nurse Rose positioned them for this picture, and it means the absolute world to me to have them together in the same bed.

If you live here in the Bay Area and would like to join me for the walk, I would love some supporters and company!! It's at 9 am in SF in the presidio. The details are on my walk page.

Update on Kaitlyn:

Well, she's still vomiting. I keep hoping that it will stop, but that just doesn't seem to be the case. The pump at night is going great and allowing us to finally get some much needed rest. Thankfully, Kaitlyn is a fabulous sleeper, so we set the pump on a continuous feed for 8 hours. We fill up the milk (my breat milk) 1/2 through and change her diaper, but other than that she sleeps the whole time!

Yesterday the wonderful Early Intervention Specialist (Jan) from the hospital came to visit Kaitlyn and indicated that she is doing wonderfully! This is such great news. I'm always worried about developmental delays due to her extreme prematurity.

She's really starting to reach out for objects and look at her hands a lot. It's so fun to watch her learn.

Her "communication" is definitely delayed, as I still haven't seen much in the way of smiling. The one I caught on film was about the only little smile session we've had. Most babies start smiling around 1 month and she's now 3.5 months adjusted.

She's not eating at all. She used to nipple a bit on occasion, but nothing any more what-so-ever.

Kaitlyn Has a Cousin!

Yesterday, Stella McCarthy Tessier was born in CT! Brian's sister Elissa had a baby, 7.5 pounds and we are so excited that Kaitlyn will have a girl cousin her same age! Unfortunately, they live on the opposite side of the country, and with Kaitlyn's poor lung condition, we aren't allowed to fly anywhere, so they won't be "seeing" each other for quite some time I'm guessing. But mom and baby are doing really well.

Thursday, April 13, 2006

Failed Her Lung Test and New Pictures of Kaitlyn

Kaitlyn "failed" her lung test yesterday. The Lung test basically tests her lung capacity in a reduced oxygen environment (like a plane or Lake Tahoe high altitude). She didn't stat well, which means that instead of 98% oxygen in her blood, she went down to the 80's%.

She will have to be retested again in 6 months. This basically means she still does have Chronic Lung Disease and that she is still very susceptible to respiratory illnesses....Thank goodness she didn't the cold I had for 2 weeks - maybe it's all my breast milk.

In general the vomiting is reduced, but it still happens. Just today WHICH happens to be Brian's first day back at work, I had 2 big projectile vomits. Kaitlyn has no desire to eat whatsoever. I used to be able to get her to nipple a bit (20 ml's or so), now she just "plays" with the nipple with her tounge. At least she lets me put it in her mouth, where a month ago she fought the whole time and hated anything in her mouth.

She's getting to the point now where she is starting to put her hands in her mouth, exploring them. Anything in her mouth is a good thing. As we have a long road to go with her oral aversions.

Here are quite a few new pictures of Kaitlyn. She actually "looks" bigger in these pictures. She's almost 10 pounds now. Sounds like a lot to weigh, but remember she is officially over 3 months old and 10 pounds isn't very much for a 3 month old baby. (even though she is 6 months old technically)

Dad and I love kissing those chubby cheeks

Dad's been playing around with the facial hair - I'm personally not a big fan. Fireman can't have facial hair (besides a mustache) and so I think that's why so many firemen have mustaches. I think he looks like he should be a CHP officer with his aviator glasses or something.

Kaitlyn hanging out on Dad's shoulder. I had just given her a bath, so you can see her little blonde hairs sticking up.

Remember how small she used to be? She actually looks like a real baby here!

OK, this was Kaitlyn's first attempts at smiling (sadly, she hasn't done it since and this was a week ago). It was so great. She was sitting in her car seat, I was preparing her milk and when I went up to the car seat she very intently noticed me and then smiled - a few times. Enough time for me to get the camera and catch one! My heart just melted on the spot!

This is Kaitlyn's wonderful "Auntie Rose". Rose was Kaitlyn's NICU nurse when she was first born and has always been there with a supportive shoulder. She was so incredibly nice to come to our house to help me with Kaitlyn when Brian flew back east to attend his Grandfather's funeral. Kaitlyn had a feeding clinic appointment in SF, and Rose came with me. On the way home we decided to take a few pictures in front of the Golden Gate bridge.

It was super windy, and Kaitlyn wasn't very happy in the cold

Kaitlyn had a hold of Rose's hair in this picture, so Rose was laughing in pain as Kaitlyn was pulling her hair. We had some good chuckles.

OK, I guess I'm a terrible mom, but she was obviously not happy at all with the wind and she made me chuckle. Now remember, you can obviously tell she's "screaming" but with her paralyzed vocal chord it sounds more like a muted high-pitched "teradactyl" throaty noise. I don't know how better to explain it than that.

Now, if you know my husband, you KNOW that he never uses the computer. I think he's sent 2 emails in his life (both to me when we first started dating). But this picture was so great I had to quickly get my camera. You can see his continued experimenting with facial hair. Kaitlyn seems intrigued by it!

Kaitlyn doing some tummy time looking at her "Happy Apple". One of Kaitlyn's Early intervention (E.I.) specialists lent it to us as she really likes to look at it. I guess it's an older Fishcer Price toy from the 70's that isn't made any more. Kaitlyn is propped up on her green "pickle" as Brian calls it. See her clasping her hands. She loves to explore her hands.

Some more kisses from Dad

Kaitlyn actually reaching out for her dangly toy. It's so fun to watch her learn.

Close up up tummy time and hand clasping. Her eye brows get so red all the time. It's like she concentrating so hard they turn red.

Tuesday, April 11, 2006

The vomit report

Well, we were so excited to report yesterday that we had 24 hours with no vomit (well, just a little spit-up, but that really doesn't count), and then today, we've had 4 or 5 episodes of who knows.

In general, however, I have to report that Kaitlyn's vomiting has decreased. She's now on a feeding pump 12 hours out of 24 hours a day (8 hours of it at night).

On her 2nd night of the pump, it became unattached, and I "fed the bed" meaning that the pump slowly pumped milk into her bassinet all night and I have no idea for how long. That was the first day that Brian left to go to his grandfather's funeral in Pennsylvania so things were a little crazy.

We were so lucky to have our wonderful friend Rose from the NICU come and stay with me for 2 days while Brian was gone. She was so amazing, and for the first time EVER I was able to sleep the entire night. Kaitlyn stayed in the room with Rose and Rose let me sleep uninterrupted. I felt so comfortable, knowing little Miss Kaitlyn was in great hands and I got to sleep 2 nights.

That's all I have to report for the time being.

Kaitlyn has a lung capacity test tomorrow, that will check to see how her lungs due in a reduced oxygen environment.

I think I need a secretary just to manage Kaitlyn's almost daily doctor visits as well as all the phone calls I am on regarding her care.

On a good note, I think Kaitlyn's development has really made some changes the last 4-5 days or so, Brian even noticed it as soon as he returned. She seems to look at us more and has a bit more control of her hand/arm movements. It's really fun to see her figure things out a bit at a time - and of course, this is especially great news, as so far developmentally, she doesn't seem to be very far behind where she should be. She still isn't smiling (I caught about 3 smiles a few days ago, but then none since)....We are hoping that with vomiting less she'll be more happy!

She's also now only on my breast milk - no longer fortified. So we aren't sure if the reduced vomiting is from: no more NG tube at the back of her throat, no more fortifier or reducing the amount of food that she gets at any one time - or more likely all of the above.

At Katilyn's weight check yesterday, she weighed in at 9 lbs 10 ounces!

Wednesday, April 05, 2006

Some changes...but cross your fingers....things are improving

Well, real quickly, as blogger is having an outage in a few minutes, but:

-We have discontinued Reglan yesterday (a reflux drug) with no bad effects (we didn't think it was doing anything anyways).

-We stopped adding formula fortifier the last 2 days and vomiting seems to have decreased

-We did our first night of "continuous" feeds for 8 hours and we had no vomiting

-Otherwise we are pumping 130 cc's over an hour 6 times a day (except for the 2 times last night where we pumped in 260 over 7 hours while we all slept). Although Bri and I didnt' sleep much, as were were on vomit alert. I think this will help when Brian leaves tomorrow to attend his grandfather's funeral and I will be alone (except for wonderful nurse Rosa coming to help)

-I find it fairly frustrating that I spend hours a day pumping the milk out of my breasts and now spend hours a day pumping it into my daughter.....Ironic isn't it? this isn't how it's supposed to be.

-I had a small succsessful nipple attempt today, where Kaitlyn took about 20 cc's nice and slowly, but then had a smal gag and spit up everything she just nippled, (but it was a good attempt)

-Kaitlyn's pediatrician and partners have been great and are really trying to get everything cordianted between all of the doctors, and Katilyn's primary pediatrician (Hi Dr!) is checking in our blog and even gave me her personal contact info so we can get a hold of her.

-K had an EI appointment here today (early intervention) and once again, she seems to be doing very well developmentally (still no smiling), but the EI person confirmed that she is having some small hand reaching attempts at objects!

-K was 6 months old yesterday and 3 months adjusted yesterday.

-K had her last synygis shot of the flu season yesterday for RSV (It cost $1,500, thank goodness insurance covered it)

Monday, April 03, 2006

More sad news

With all the morning's vomit I forgot to mention our new sad news, on top of getting and learning the pump and dealing with huge amounts of vomit on Saturday, we also learned that Brian's grandfather had taken a bad turn for the worse and was likely to pass away soon.

On Sunday morning, his grandfather, Edward McCarthy Sr passed away. He was 88 years old. He lived in Pennsylvania, near Brian's parents in Pittsburgh. Brian's grandpa used to attend Brian's hockey games when he was little and Brian misses him terribly.

We are doing all we can to get Brian to Pittsburgh for the funeral this coming Friday, which means that I'm on vomit patrol soley on my own.

I may have mentioned in the past, but one of our favorite nurses for Katilyn in the NICU was Rose from Brazil, and she has so generously offered to come to our home and help me out while Brian is away if she can get some shift trades at work. I don't think anyone else can help if they don't have nursing skills or at least know how to operate a feeding pump.

Being fed by a pump

Upon her first days home from surgery, unfortunately, Kaitlyn’s vomiting seemed to have gotten much WORSE after her g-tube insertion rather than better. We were devastated, distraught and extremely frustrated. On Friday, after talking to an on call-GI and taking K to a f/u pediatrician appointment, they decided that Kaitlyn should go on a feeding pump.

There are 2 ways to feed babies on feeding tubes, Bolus and Continuous Feeds. Kaitlyn has always been on Bolus feeds. Bolus feeds are the way a “normal” baby eats, they suck a bottle/breast fairly quickly (5- 20 min a session) and then don’t eat again for a number of hours. Preemies on the other hand have digestive/reflux issues in which bolus feeds can be a problem as their stomach’s cannot handle the v0lumne of food at one time.

A feeding pump allows for a slow drip of food into the stomach. It’s hoped that the feeding pump will allow for Kaitlyn to better handle the milk which will hopefully diminish the vomiting.

We started Kaitlyn on a feeding pump on Saturday. It was very frustrating, as the pump was delivered to us on Friday night, with no instruction what so ever. (The home health delivery company was supposed to have someone that could show us how to use it, but that wasn’t the case).

So Saturday afternoon Brian figured out what to do, and the Doc instructed us to try it out with half her food delivered over 30 minutes. Thankfully, it seemed to go fairly well. An hour later, we delivered the remainder of her feed (normally she would have gotten 130 cc’s every 4 hours).

It’s now Monday morning, and her vomiting HAS decreased. It’s not gone, and we are still feeding her over an hour versus continuous. There’s varying thoughts regarding feeding either bolus or continous. Long-term bolus is better, as it teaches the baby to feel hungry and want to eat, where continuous feeds don’t - but preemies have problems handling that much volume over a short period of time. Thankfully, Katilyn’s digestive system (bowels) have never had a problem, it’s more digestive (reflux) and air bubbles that cause her all the projectile vomiting we believe. In some ways, we still wonder how much she really has reflux, as the test she had back in the NICU showed that she didn’t, but she shows all the classic signs of reflux, (upset, arching her back, vomiting, vomiting an hour or 2 after her feed). She’s been on reflex meds now for some time, but I never really saw much of a difference.

Saturday, we found ourselves in a huge state of depression. It really set in that Kaitlyn’s eating issues are a long-term problem. People ask how she’s doing, and we say she is having terrible eating issues. I think people who don’t understand preemies think, “Oh, she’s isn’t latching on to my breast and is spitting up.” Instead our daughter projectile vomits everything you just worked so hard to get down, all over you, herself, the floor, the couch, what ever she is sitting on, it’s awful!

OK, it’s been about 1.5 hours since I wrote the above. Due to an extremely upset Kaitlyn and multiple vomiting episodes. She was covered in it. Projectile vomit, all over everything. I’ve changed her, and she’s finally calmed down. This all happened about ¾ of the way through her feed on the pump. This is the first time for me that the pump session went like this. Other sessions, she’s been calm throughout it and only threw up a little bit afterwards. It’s so frustrating.

On a positive note, we think that she is starting to somewhat reach for a hanging toy on her chair. Reading this, it sounds like she knows that she’s reaching, I wouldn’t say that yet, it’s almost like wow, there’s a toy, and my hand seems to be affecting it somewhat. We’ll see if this continues and she gets a bit more coordinated.

She still isn’t smiling, which babies should be by 3 months (which Katilyn will be tomorrow, 3 months adjusted, and 6 months from when she was born.)

Here's Kaitlyn being fed by pump (the pump is behind her), she's not looking very happy, this is her typical expression as an 'upset' episode gets started (which usually leads to vomiting)

Reaching for the toy (purposively? who knows)

Katilyn looking at the dangly toy I mentioned in the post above