Saturday, March 18, 2006

Long Awaited Update

Grandma Markie "Mame" took this great picture of Miss Kaitlyn this week! Miss Katie has some of the funniest expressions! She has the pout down pat, Not quite sure what this expression means, but it sure is goofy!! She's propped up on the couch.

It’s been so hard to find time to update my blog (as I’m sure you can tell). Welcome to motherhood I guess!

Here are some updates on Kaitlyn’s many doctor visits these last few weeks:

Pulomonologist – Her Chronic Lung Disease seems to be ok, meaning that her breathing and lungs don’t seem to be having many effects from the disease, she doesn’t have any fluid in her lungs. This is the reason that we have to be at home hibernated, as if she gets sick, things could go bad very quickly, especially if she were to get RSV (the cold/flu thing that most children get that isn’t much worse than a regular cold in a healthy baby but could be deadly to Kaitlyn).

We have a test scheduled on Tuesday to check her lungs In a decreased oxygen environment. This test puts Kaitlyn in a similar environment that she’d be in if she were to fly or go to Tahoe (high altitude). This will allow us to determine how diminished her lung capacity really is. They will basically put a tent over her head, reduce the oxygen level to that similar to high altitude, and see how she does. This test is scheduled for Tuesday of next week.

The Pulmonologist is also the doc that keeps an eye on her paralyzed vocal cords. It is still paralyzed. The doc heard her cry and agreed that the noise is primarily air passing, rather than a vocalized cry. Brian and I “joke” and say that she would be the perfect baby to go to a restaurant, movies or fly with, as if she were to get upset, you can’t hear her cry – however, of course we can’t go out in public! Sort of bittersweet!

Developmental Specialists - Because Kaitlyn was born so small (a micro preemie at 1 lb 11 ounces) she is eligible for programs called Early Intervention (EI) in which preemies development is closely monitored to help with any delays. It’s great, as they actually come to our home (makes it a lot easier with all our other doc visits). We’ve had 2 EI specialists visit with Kaitlyn. The first is funded thorough the Government, the other is through our NICU hospital (CPMC). It was wonderful to have them come assess her and their initial assessment they said that her head is indeed very strong for her age and that she does great on her tummy (2 months adjusted), she’s not smiling yet (they said it’s still ok at this point), and that she seems to be right where she should be for 2 months adjusted. So, so far, that was some great news to hear.

Feeding Clinic – we went to UCSF to a preemie feeding specialist and unfortunately, we didn’t lean “the problem”. I think I’ve now had to come to terms with the fact that we are never going to find out what the problem is with Kaitlyn and why she doesn’t want to eat.

We’ll see the feeding specialist again in 3 more weeks, she told us to do gum exercises with Kaitlyn, which means to rub our finger on her gums to give her positive oral experiences rather than the negative experiences she currently has. (vomiting, tube, pain from reflux, etc) I’m so scared for the long term feeding issues that this is probably going to result in.

Since we’ve come home, her desire to nipple has gotten much worse. Initially she was doing well and taking more of her feeds on her own, but then all of a sudden, she has stopped wanting to all together; she also has no desire to suck on her pacifier any more, which she used to love when she was upset. She no longer has any interest whatsoever in her pacifier. She gags, thrashes and basically pouts and acts pissed off.

Her constant vomiting I’m sure isn’t helping matters at all. The poor little thing. It hurts me so much to see her in pain.

She’s now on different types of reflux medication, I’m not sure if they are really helping at all: She’s on Reglan (which is supposed to help the food exit her stomach faster, but can have neurological side-effects (scary); and was just switched from Zantac to Prilosec (another anti-acid). Her esophagus is probably getting scarred and damaged from all her stomach acid with all her vomiting. She is still projectile vomiting at some times (and then other times she might keep her entire feed without any vomiting). Other times the vomit is more dribble like. It’s awful. We feel so bad for her, as she looks up at up helpless like, and it’s really hard on us too.

Every feed takes about an hour, and you cross your finger that she doesn’t puke up everything you just got down her feeding tube. Sometimes when she gets really upset (in pain) during the feed, she thrashes and cries, so that the milk goes backwards instead of into the tube. It’s very difficult. The only way to help is to pour out the remaining milk, disconnect the tube, untape it from the bouncy, take her out, burp/consol her, then put her back and start over again. It’s awful watching her in pain and you can’t really help until the feeding is over. Terrible.

GI Specialist – This appointment was for the GI doctor to assess her stomach, to see if they can figure out why she is vomiting and to talk about inserting surgically a g-tube. She didn’t give us much reason for the vomiting (uggh), but she did go over the 3 ways that a G-tube could be inserted. We know now that we HAVE to have a g-tube, and we want to get it done ASAP. We know that her NG tube is probably making her vomiting and her nipple aversion worse. In the beginning when we first came home it really seemed as if she was going to start eating on her home with the nurturing environment at home as compared to the NICU, but then with her getting worse, we know we don’t have a choice.

As much as we are dreading going back to the hospital, admitting Kaitlyn, having her go under general anesthesia, having a breathing tube, we are crossing our fingers that the g-tube will be better than the NG tube.

I’ve heard from so many preemie moms that have all said the G-tube is so much better than the NG-tube. (G stands for Gastric, and NG stands for Nasal Gastric). The g-tube will be a button type thing that will be in Kaitlyn’s stomach and we will open it up to put my breast milk directly into her stomach.

We have an appointment with a General Surgeon on Monday to schedule her G-tube insertion. Hopefully she can get us in next week for the surgery.

Ophthalmologist – Kaitlyn had a 6 week follow up appointment to check on her eyes and ROP (Retinopathy of Prematurity – the eye disease that is common for preemies that can cause blindness). As a reminder, Kaitlyn had level 3 ROP, and had laser surgery (3 hours) to stop her retinas from detaching.

At this follow-up visit once again the eye doc said her ROP recovery looks great and he also said that he doesn’t see any initial signs of bad near-sightedness, which could be showing up at this point. (think: small babies with glasses). He said now, we’ll wait a year (I think) to check her nearsightedness again as well as ongoing ROP follow up visits.

Pediatrician - In addition to the above, we also go weekly to the pediatrician for a weigh in. At Kaitlyn’s latest weigh-in, she now weighs 8.5 pounds! We’ve officially “retired” the preemie clothes as she’s grown out of them. 8.5 pounds sounds like a lot, but remember, Kaitlyn is now officially 2.5 months old and she weighs as much as many “newborn” babies do.

What else has been going on?

Well, it’s been almost 2 weeks now since we had to put Kailan (our dog) to sleep. We are still very teary eyed and miss her terribly.

I’ve been back to work fairly full-time and have a house in escrow for some clients. My real estate firm had it’s annual “Awards Luncheon” yesterday that I attended. I was shocked to find out I won an award for production last year. This is quite a feat I have to say, in that I was only able to work ½ the year due to my unplanned forced bedrest. If you know of anyone looking to buy or sell their house, please think of me! I can help anywhere in the US, not just locally in Marin.

Working on preparing and sending my monthly email real estate newsletter – this takes a LONG time! If you’d like to receive a copy of it, just email me and let me know, or click on the link to my real estate website

Brian’s mother was in town for the last week (Her grandmotherly name choice is “Mame”.) Kaitlyn is her first grandchild and she was so happy to spend time with her. WE loved having her here and she was so great to help us with cooking and cleaning and washing of the non-stop parade of vomit encrusted clothing/cloths, towels/our clothes, etc.

Brian’s Dad comes in today (they had some poor planning on their part, as Brian’s mom left yesterday.) On this note, some more bad news that we are recently dealing with – Brian’s dad’s dad (Brian’s Grandfather) is not doing well health wise. He lives in Pittsburgh PA. He hasn’t been doing very well for the last 12 months or so, but he has suddenly gotten much worse.

I’m still pumping breast milk. I’ve decreased my number of pumps a day to either 4 or 5, but it’s still difficult. Imagine this: trying to feed Kaitlyn at 2 am, hoping she doesn’t vomit as I need to pick her up from her bouncy seat (in which we tape the NG feeding tube to the top of the bouncy) and pumping at the same time. Not easy.

Working on preparing and sending baby announcements and long-awaited thank you notes.

I’ve been trying to get my taxes finished on top of everything else. You think with all the time I had lying in bed all summer that I would have gotten my finances in order, but I hadn’t done anything, and I had a lot of expenses as far as real estate and obviously medically. You should see the pile of bills and mail that I have yet to get to for the month!

Well, sorry for the delay in updating my blog, but we knew Kaitlyn’s fan club would understand!

This is the sight that Brian saw this morning upon his awaking...I'm typing this blog entry, have the pump aready at the end of the couch and the bouncy seat on my other side getting ready for the next sleep. Kaitlyn is sound asleep on my chest, which is the position she favors after eating.

Here I am giving her some reflux medication 30 minutes before her 10am feeding.

a close up of her bald spot and mom in her bathrobe

Grandma Mame loves to bundle Kaitlyn. Can you see the 3 or 4 blankets here! Kaitlyn is clasping her hands here in front of her, this is a good developmental sign. She won't be reaching for toys or things for many months still.

More blankets and more funny expressions from Kaitlyn (look at all those blankets!)

Here's Grandma Mame with Kaitlyn. You can see she is even "bundling" Kaitlyn in this picture. You'd think we lived in Alaska or something!

Proud Grandma Mame again with her first grandchild (or Margaret, who Corinne Margaret is named after)

Brian, his mom and Kaitlyn

Horsing around with Katie

Proud Mama and Dada with our daughter. She is looking bigger in these pictures.


Sarah said...

Liz, she looks GREAT! I'm sorry you guys are going to need the GTube after all, and I hope both that it makes your lives a lot easier AND that you can get it placed this week. It sounds like despite all her eating problems, Kaitlyn is doing GREAT!

*AND* the end of RSV season is drawing hear!!! Hooray! Life looks so much more positive when you're no longer living like hermits.

Michelle Flannagan said...

Liz- Miss K looks great. I love the goofy expressions. I think she has a future in drama!

I'm glad that you are going ahead with the Gtube, it is a hard decision to make, but in the end it will benefit her (and you) greatly. It takes some getting used to (I was scared to connect it at first----although Anna didn't wake up) but you do get used to it.

I hope all goes well with her lung tests and the Gtube surgery, keep the Fan Club posted!
Love, Michelle

Anonymous said...

Good to see the post Liz, I totaly empathise how busy it gets with preemies and tons of doctor appointments.
My preemie son is not a good eater too, he has been on zantac since 4 months. But feedigs are bit better after solids (rice cereal), not in terms of quantity but fussiness.
** Somebody told me 12 lbs weight is a magical, so hang in there **

Good luck with the G-tube
-Fellow preemie mom

Jodi from Prom said...

Looking great!

:) Jodi from prom

Anonymous said...

Hi Liz: Kaitlyn looks great, bigger every time I check in to your blog. You've managed to capture some hilarious expressions on her face. I hope the GTube procedure goes smoothly. RSV season is almost over, the McCarthy family is going to love the warm weather strolls! Looks like that house across from us isn't going on the market, but a friend of mine got her agent to show it to her. You probably know more!

Take care, Maria Kallmeyer (from MPOMC)

Jill & Terry said...


Jenny said...

tow pics here with smiles!