Wednesday, May 03, 2006

Saving babies....

Thank you for helping to save babies!
Thank you very much for supporting our walk last weekend in March of Dimes’s WalkAmerica 2006. We joined a million other people from around the country on this walk. You have become a supporter of the most dynamic force of volunteers ever assembled to save babies. Because you care, more babies will have a fighting chance for a healthy life.

The money you donated in the name of Corinne and Kaitlyn McCarthy for March of Dimes WalkAmerica will support the fight against premature birth by:

-Funding research to find out why premature birth happens and how it can be prevented.
-Supporting families whose babies must spend time in neonatal intensive care units (NICU).
-Expanding the number of NICU Family Support programs.
-Assisting health care professionals to improve prematurity risk detection and address risk factors with patients
-Educating women about the signs of preterm labor and what to do if they have them.
-Advocating for expanded access to health insurance for mothers and babies.
-Providing women with the latest information about pregnancy and premature birth.

I decided to participate in this special event just 2 weeks prior - and if you can believe it, I raised almost $1,600 In just 2 weeks!!!! THANK YOU ALL for your support!!

Special thanks go out to:

Cynthia B, Billie W (online friends); Jackie & Gary C; (my dad's long-time best friend - my brother is named after "uncle Gary"); Whitney C & Ashley K (my Step-sisters); Clarissa C and her sister Katrina L (my cousins); Danielle D (Kaitlyn's primary nurse from the NICU); Derinda (a long-time SF friend); Alyssa H (real estate clients/friends); Chris W, Susan H, Julie H, Rita H. (Co-workers/clients/bosses from my former tech days); Gille and Mame (Kaitlyn's grandparents); Cheri N,Stacey B, Mary T (local twin moms); Kerry O'G & Spencer P (friends via my brother);Diana T (a close friend of mine); Linda W (former co-worker from years ago); Angela S (a neighbor growing up in LA); Pappy & Mimi (Kaitlyn's grandpa).

It's not too late - you can still donate if you'd like- the link is to the right hand side of my blog: click on March of Dimes.

SF Walk details

Well, our walk day dawned with typical San Francisco Fog, so we swaddled up Kaitlyn and headed out for our first real exercise in over a year, and of course Kaitlyn’s first long ride in our new jogging/walker stroller.

Kaitlyn slept almost the entire time. We were joined on the walk by many of Kaitlyn’s nurses, doctors and social workers from the hospital, as well as fire-fighters from Brian’s Fire Department.

Afterwards, some of Kaitlyn’s nurses and doctors got to hold her, which was such a nice treat for them, seeing how all of their life-saving efforts helped her to be with us during this eventful day. Did you know that the March of Dimes is the organization who funded the research to give preemies with immature lungs surfactant to help their lungs develop. Sadly, this wasn’t enough to help Corinne, but today Kaitlyn is off oxygen and her lungs are on their way to heal.

It all brought tears to my eyes. Our March of Dimes Walk Ambassador, a 3 year old former preemie and his mom spoke about their story. I was lucky enough to get to meet Zach and his mom, Michelle while Kaitlyn was still in the NICU. One of my doctors was Michelle’s sister and they agreed to meet with us to give us hope for Kaitlyn’s future.

Other Medical updates

Well, as always, our life seems to be filled with scheduling juggling doctor visits, nursing to start hopefully soon, medical supply delivery, work and trying to get Kaitlyn to eat:

Weight & growth – 10 pounds 10 ounces! Also, her increases are right on schedule compared to her last doc visit. This is good news (so that even with her vomiting, she’s still gaining appropriately). She’ s only on my breast milk (yeah, I can feel I’m accomplishing something for her); her height and her head growth are on par proportionately with her last visit. Her head is a little small on the charts, but her weight and height are finally on the charts (about 5% I think). Remember that this is her ADJUSTED age. She’s almost 4 months (tomorrow) and not 7months from her actual due date.

I had a tough visit at her Pedi's office. Her appointment was right in the middle of a feeding/pumping session. So I sat in the office waiting for it to finish, as she proceeded to throw up. Then, a mom and baby came out after visitng the doc, and sat down to breast feed a noisily sucking babe. It was all I could do to keep it together. I sat there, holding her feeding pump, tubes, cleaning up vomit of my breat milk, listening to a babe eat. I can't tell you how much I wanted to change places. Once I went back into the room, I completely broke down with the nurse and started balling. Some times I'm just not very good at holding everything together.

Eyes – Kaitlyn had an eye appointment yesterday, and the Doc said he felt that what he saw with her eyes crossing (Infantile Esotropia – is a type of Strabisimus) was definitely caused from preemie hood. He wants to wait 2 months to see her again and hopefully it may clear up on it’s own. He said it’s good that both eyes are crossing (as opposed to just one as I originally thought). Here’s some info on it:

In many areas of treatment for infantile esotropia (IE - a congenital, inward turning of one eye), the best choices remain unclear - including the best type of surgical approach, non-surgical options and optimal timing of any of these interventions. The large body of literature on the subject of IE mainly consists of retrospective studies, cohort studies or case series. The review found that there were no trials indicating which treatments, or timing of any such treatments, were best.

Here’s some more info I found on: Esotropia
Strabismus is the tern used to describe any type of misalignment of the eyes. Esotropia describes a misalignment of the eyes in which the eyes turn inward, toward the nose. There are several types of esotropia; some of the more common are described below.
Infantile Esotropia

Formerly called congenital esotropia, it is now known that most children with esotropia early in life are not actually born with it, but develop it within the first few months after birth. By definition, the term infantile esotropia is used to describe esotropia that is present before six months of age.

Infantile esotropia has several distinguishing characteristics. It is usually marked by very significant crossing of the eyes. Children with infantile esotropia tend to have very little hyperopia (farsightedness), and sometimes do not require glasses. Amblyopia (poor vision in one eye) is often not present, meaning that children with infantile esotropia often do not need to patch their eyes. Because there is equal vision in the two eyes, affected children will often alternate between using one eye and then the other, so that sometimes the right eye appears turned in and at other times the left eye appears turned in.

Infantile esotropia usually requires early surgical intervention because glasses rarely help to straighten the eyes. Early surgical intervention to straighten the eyes has been shown to increase the likelihood that the child's brain will "lock on" and begin to use the two eyes together. This allows for the possibility of the development of depth perception.
Children with infantile esotropia can develop other misalignment of the eyes. These problems occur in some children even after successful early surgery, and can include floating of one eye upward (called dissociated vertical deviation), pattern strabismus (marked by upward or downward turning of the eyes when looking in side gaze), and nystagmus (a back and forth wiggling of the eyes which may be present all of the time or only when one eye is covered).

Our doctor, who is often involved in studies (as he was for treating ROP early in preemies) told me that a study he was involved in has shown that 30% of preemies can end up with other eye disorders, such as IE. For now, we will just wait and see. He also said she was slightly near-sighted (about -.1), It’s still too soon to tell if she will become more near-sighted, (He said at about 18 months you can get a good idea of how the vision will turn out long-term). He also did not see any bad affects from the ROP and it seems to have stabilized.

Head Bobbing – I haven’t really mentioned this much in the past, as everything we’ve spoken about it the docs didn’t seem worried, but it’s still continuing. Kaitlyn bops a lot, she shakes her head and body. The eye doc and her pediatrician think it might be caused from her vision, but again, we don’t know

Smiling – Not happening. Kaitlyn still isn’t smiling and she is still averting her gaze from us. This is soooo hard. How I just want her to show that she’s happy and appreciative of my interaction with her.

Vomiting – Still happening. Not all the time, but enough that it’s hard and we still do a lot of laundry all the time. Not sure if I’ve ever mentioned it or not before, but whenever Kaitlyn passes gas, has a BM or coughs she also tends to vomit. Yikes! Her GI doc said this is a type of pressure reflux or something like that.

Vocal Chords – Her cry is still “quiet” - the main thing you hear is air rushing in and out. This is also the case with her new “talking” She has actually figured out how to “talk” – she basically takes a large inhalation of breath and as she does that the air makes a squawking noise. I think she’s definitely doing it on purpose and likes to interact with me when she’s making the noise.

Eating – not happening. She continues to show no interest what-so-ever in eating. I can get her to take a few swallows of milk with this device I found called a “soft-feeder” it’s a soft silicone thing shaped like a small cup that I can put in a drop of milk into her mouth. Sometimes she swallows it, sometimes she pushes it out with her tongue, and she usually vomits at some point rewarding me with her efforts. At least, she is swallowing some, which I think is a great sign.

Feeding – We’re getting the hang of her g-tube – Basically Kaitlyn is hooked up to her feeding pump 12 hours out of 24, and we just decided to change it to 14 hours today. I’ll detail this for those who are also g-tube parents, the rest can skip ahead if you want:

She is supposed to get 900 or so ml a day (we are waiting to get a new volume amount with her new weight). We connect her to a continuous feed at 8:30 pm at a rate of 60 ml/hr. We used to do this for 8 hours, but we took matters into our own hands and decided to make a change last night. The feed would stop at about 4:30 am, then at 6am we would give her about 100ml/hr for 1 hr. We often got a lot of vomit at that feed. So instead, we decided to increase the number of hours of the continuous feeds, as it was almost the same anyways, and do 60ml/hr for 10 hours, which means she is done at 6:30 (normally she would have been fed from 6-7am).

Then after that she’s on a Q4 (every 4 hour “bolus” feed) so at 10 am, 2pm, 6pm she gets 110ml over an hour.
The night time feed goes really well, we rarely if ever have any vomit.

10:00 pm

Well, I wrote the above earlier today, and have just spent the last few hours trying to calm Miss K down. Recently in the evening she hasn't been very consolable, and she does not want to look at me, but she wants to be held, sometimes. I sat here tonight, with her looking away, her eyes crossing, frowning. Why is this so hard. Sometimes more than others I think about that fateful amnio and how much my life changed. I sat here holding Miss K tonight and I told her about her sister Corinne that was looking over her. Sorry to end on a downer....

Mary and Molly - 2 of Kaitlyn's NICU nurses post walk

Post walk with M & M

Kerry (one of Kaitlyn's NICU nurses) during the walk. She was there during my delivery with Rose (who I've mentioned in the past)

Brian, Liz and sleeping Katilyn during the walk in front of the foggy Golden Gate Bridge

Posing in front of dad's work - a fire truck, of course Miss K is sound asleep Dr. S, who was there when I delivered and called us EVERY day that she had Kaitlyn.

Proud dad with Kaitlyn in the jogging stroller


julie deruvo said...

Ok, My vote for mom of the year goes to.. LIZ McCARTHY! You continue to amaze me! How you find the time to do all that you do in your daily life and then have that little "extra" to give us your unbelievable updates is amazing.

Kaitlyn is so lucky to have you as her mom... one day she will looks back and KNOW that her mommy & daddy loved her more than life itself. You have given her SO much already in her short life. God Bless you guys!

Love & Hugs,
P.S. Thank you so much for sharing your pix from the walk... and for giving us so much detail in her progress. Kaitlyn is such a special little girl to all of us... it means so much that you include us in her life! ~ xoxox ~

Tonya said...

I'm glad your walk went so well Liz.. Love the pictures :) I'm glad you were able to update us!! I know I would sound like a parrot if I said all I wanted to say but Julie pretty much expressed how I am feeling.. Kaitlyn is so lucky to have you as her mommy and of course just as lucky to have such a proud daddy!! I hope in a couple months her eyes start to correct themselves.. Its good to hear that it is better it is both eyes than just one... *Hugs*

liz.mccarthy said...

I received this email from a National Mom Twins Club Member....

I just got my March/April newsletter for NOMTC and read your story about Corrine and Kaitlyn.

To be able to write about probably the worst time in your life with such honesty, and grace amazed me. I don't even know what else so say about it but that Kaitlyn has an AMAZING Mom! And . . . watching over all of you is a beautiful guardian angel, Corrine.

Following the birth of my twins Zach & Alex, I was faced w/ my own situation when a doctor (really really) messed up the c-section and almost killed me. A year on bed rest and 8 corrective surgeries later (including hysterectomy), I am well. I understand and can relate when you did whatever it took - financially, emotionally and physically for your girls.

I was touched by your story, and know by your words that you have a wonderful support system, and are such a strong woman yourself - to be able to write what you did.

God Bless, Keri

Mir said...

Hi Liz!

It was good to hear fron you on our blog! Kaitlyn is gorgeous. It's amazing to see such a tiny little lady! Our boy (just a few weeks younger than Kaitlyn, but full term) is off the charts at over 21 lbs!

Congratulations and our prayers are with you guys as she contines to grow. Hopefully, she'll find inspiration and strive to grow like one of our other preemie friends, Randie.

JP said...

Hey Liz - I've been meaning to comment about the head bobbling. Halle had that (and the arms/legs) for the longest time. We thought it was Reglan but took her off and it continued. Reglan made it worse, but she still bobbled. Long story sort, after she had been sitting for a longer time and got stronger the bobbles disappeared. Hang in there...Miss Kaitlyn may just need some more time to grow. :)

Mir said...

Hi Liz,

I meant to tell you that my son was not a smiler either. Until five months old, we could not get him smiling. He would stare at us and he was the most unhappy looking little guy! Then, one day, he just started grinning and hasn't gone back. I pray that this will be what's going on with Kaitlyn and that one day, she'll flash you that gummy smile and melt your worries!

Also, in a small world, my parents are both real estate agents -- my stepfather worked in the Bay Area for about 13 years as an agent before they moved to Florida.

Anonymous said...

Liz & Family

Alot has happened since I last read your post. You are and amazing family. My prays are to you and your family. She is such a cutie, Zach and her will have to meet one day. They both will have one heck of a sence of humor when they get older !!!!
Terry and Jill, Zachs parents

Mani sood said...

Your Blog is Really Nice. you have sharing the Really Good Information.
Dr Madhu Karna
Eye Specialist in India.