Milk update!

All my loyal readers probably know we've been on a search for breast milk. I thought I'd include the email I sent to over 40 yes 40! moms who wrote me offering breast milk!

This picture is 3 full coolers of milk that we just received from Hechung, a micro-preemie mom in Southern California. Someone heard my request for a Currier (Michelle from my local twins club) and offered up her father to bring up the milk from Sothern California. I don't think he knew what he was offering. Look at these 3 huge coolers!

Copy of the email I sent to mom's offering milk:

I am so terribly sorry it’s taken me so long to respond to your wonderful offer of breast milk for my daughter Kaitlyn.

I was taken aback by the number of responses I received from sending my email to the San Francisco Mother’s Club, (I guess it shows the power of viral email), as I’ve received emails and comments on my blog from moms all over the country! I received over 30 personal emails of moms offering to donate milk for Kaitlyn!!! The goodness of people touches my heart in such a way I can’t even describe. It also overwhelmed me, as I wanted to write a personal reply to everyone! When times are really tough for us (ie: Kaitlyn has vomited 10+ times a day), I think of all the wonderful mothers out there who have offered their precious liquid gold to us to help and it helps me get through the day.

Some mom’s offered to pump extra for us, or even to relactate again if they had stopped breast feeding! Wow, the generosity of these offers leaves me truly speechless, how horrible of me to take over a week to respond!

I so wanted to write everyone back personally, and at the same time became overwhelmed with normal taking care of Kaitlyn duties, as my husband was out of town for a week, I had to train a new news and had a root canal on top of everything (not to mention that I do work also). That it’s taken my way too long to answer to your most generous offer.

My good news is that a fellow Micro Preemie Mom from Southern California (Who I’d emailed in the past) heard that I needed milk. Her daughter was born at 24 weeks gestation and had been pumping ever since her daughters birth. Although her daughter never learned to breast feed, she is able to take breast milk from a bottle, but has shown a dislike for frozen breast milk. The mom had an entire full standing freezer full of breast milk and offered it to Kaitlyn. She used to write me while her daughter was still in the NICU, asking me questions and wanting support. I guess it’s her amazing way of giving back to me!

My task was to try to get the up here to us in the Bay Area (as I’ve paid for shipping for milk across country and it’s very expensive). A wonderful woman saw my request and offered up her father as a currier (he was visiting in Long Beach). We arranged for him to meet the preemie mom, and he brought us up 3 gigantic coolers of milk earlier this week.

We are hoping to try to start transitioning Kaitlyn to a “Blenderized Diet” which will basically be real food, put through a super special blender and then pushed into her belly. Think of it this way, once babies are over a year, a good portion of their diet consists of solids, but Kaitlyn refuses to take anything by mouth. All of her food has to be liquid. My desire to keep her off formula stems from her non-tolerance of it, as well as the fact that the older tube-fed children formula is full of corn syrup and other things that we wouldn’t give to “normal” child that did eat by mouth, so why should I feed my child this stuff?. I’m really, really hoping that the transition will finally solve our vomiting problems. Which then in the long run will hopefully help her to have positive oral experiences which may causer her to want to eat.

Currently, as her vomiting has been very bad the last 6 weeks or so, she’s back to refusing to eat or drink anything again.

Thank you thank you for your offer of milk. For the time being at least I think we are fairly well set on milk and hopefully by the time that we can successfully transition Kaitlyn to a blenderized diet we can “wean” her off breast milk. I’m hoping it’s ok if I keep your contact information and should we get low again I’d love to contact you back (should you still have your milk that is).

In the mean time if you do have extra milk and want to donate it, here are a few options for you:

The milk bank in San Jose: San Jose Milk Bank
Milk Share group on Yahoo. Milk Share Group on Yahoo
After I posted my request on my blog, I had a mom recommend the Milk Share Group on Yahoo. I never asked on the group for milk, as by that time I had so many offers of local milk. But there are many requests for milk for babies in need that if you have extra milk to donate, this may be a good place for you.

Some more pictures..

Sometimes Kaitlyn is actually "smiley" I was able to catpure some smiles the other day while she was climbing on the couch.

Even with a runny nose she was smiling and giggling!
When Kaitlyn was sleeping earlier this week (while she was sick) I found her like this in her crib. I think being on her belly helped with the congestion. Maybe she sticks her butt up in the air to get off her feeding button. It was too funny, I had to grab my camera. And this is a good example of what happens when she vomits, no matter how much I cover the bed with waterproof sheets/towels, she always ends up vomiting on the clean sheets, just out of range of the towels. (Yes that's her feeding tube snaking out of the picture.)

At a Christmas gathering with my dad...She's starting early with her beer drinking preferences!
More pictures of Kaitlyn with the fridge magnets.






Kailtlyn LOVES to take off my glasses. I've discovered that if you put them on her she breaks out with a big grin!

A picture for your enjoyment!

Although it looks like she's stable, if it wasn't for the fridge there's no way she'd be standing. BUT, she's doing great motor-skills wise.

What a week....

Have to keep this short....

But. First of all, thank you thank you thank you from the bottom of my heart for the recent tremendous response of offers of donating milk to my little Miss Kaitlyn! I'm overwhelmed with gratitude (and have received so many offers that I haven't been able to respond to everyone yet, and with the week I've had you may understand why I'm so behind).

We are doing well on milk donations for the time being, but I will get back to your emails, I promise (I've responded to about 10 so far, but haveI have about 25 more that I need to respond to!). As I said, I’m completely overwhelmed with gratitude by all the generous moms who have offered (some even before their babes were born!). WOW. It makes me speechless that that the world is a good place. Being a mom finally, I only now understand how special the bond is betwen moms.

And on the subject of breast milk donators, here is a great place if you have extra milk that you'd like to donate if I won't be able to get your milk: MilkShare This is a site for mom's to get in touch with one-another to either donate or request breast milk. How wonderful!! Someone posted this site on my blog comments and I wanted to share it with everyone.

Here’s my week:

Brian's been gone since Monday.

Kaitlyn came down with a bad cold on Saturday, which she promptly gave to me on Wednesday. Her cold and mucus makes her vomiting even worse than it normally is, so I've been up a lot at night. And, she now has a terrible cough too, so I've been giving her breathing treatments every 4 hours or so to try to keep it out of her lungs.

The cough sounded so bad that today I took her to the pediatrician's office and the good news is that its' not in her lungs, and her ears are clear too. phew that's a relief. I thought it sounded so bad the scare of RSV started hitting me.

Monday night I had a g-tube support group meeting in the city that I really wanted to attend, but had forgotten that Brian went out of town. Before he left he had adjusted Kaitlyn's car seat (she's in a big seat now, but the straps were set in the wrong place) so I had to figure out how to remove, adjust the straps, all while trying to hurry to drive to the city, in which I was incredibly late.

Lets see what else...

Hmm, I found out on Tuesday that I needed to have and then had my first ever root canal yesterday...fun fun fun! Wow, I really am 40.

And if you remember my saying that my nurse from last year officially retired, I've been training a new nurse this week that started out a bit rocky (and I'm very gun shy about help after a horrible nanny scam experience that I haven't had time to go into detail about).

I think the new nurse will be ok, but I’m telling you, wow, I've never had to explain the same thing over and over and over until I thought I was literally going to go bonkers, and I'm supposed to trust her with my daughter....? Her task that she was having some major difficulties with was defrosting breast milk and combining with Compleat (the formula we are currently trying). It’s not rocket science. I had it all mapped out, total volumes for each feed throughout the day, and after 4 days of explaining it to her multiple times, she still wasn’t getting it!

I showed a house last night to clients who liked it so I wrote up an offer for them to purchase it - I'll be presenting the offer on Sunday.

We are having a horrible cold snap (it's in the high 30’s now at midnight and is expected to hit the 20's the next 2 nights) and so the following story is worth a good chuckle now that it’s over:

Yesterday morning (after trying to clean up many morning vomits in bed with Kaitlyn (who wanted nothing to do with cuddling with mom in bed while mom tried to catch up on a few winks)...I heard this really strange noise, like a car warming up outside, but it went on for a while. Finally, with Kaitlyn in arms, I got up to get my day going (to defrost breast milk and other morning duties before taking Kaitlyn to one of her medical appointments) but found Kaitlyn’s Mylar balloon being sucked onto the heater air-intake on our ceiling. It was entirely covering it so no air was making it to the heater. That’s what was making the noise (and why it was so cold in the house). I grabbed a long broom (with Kaitlyn still in arms) and swiped at the balloon. Instead of achieving the intended results, the grill covering the heater intake fell to the floor with a loud bang and the balloon was swooshed into the air intake as fast as you can believe. FAST. Holy shit! I sat Kaitlyn on the ground, ran to turn off the heater (I wasn’t sure if Helium was flammable or not), got a flashlight, shined it up the shaft but the balloon had disappeared from view. (And of course Brian is out of town).

After a lot of calls to Brian I finally figured out how to get to the filter in the heater (no easy task, he coudn't even remeber how to do it) and unbelievably the balloon had made it’s way all to the filter, so I got it out. Phew, I didn’t know what I was going to do without any heat until Brian came home tomorrow. Hmm, well that’s about it for my week.

Kaitlyn weighed in at 18.5 pounds at the pediatrician today by the way!

Corinne Birthday Poem

I've been wanting to post this for a while, but here is a beautiful Birthday poem that Auntie Whitney wrote for Corinne on Corinne and Kaitlyns' birthday:

Dear Corinne,

My darling dear, forgive me, but I cannot tell a lie,
I'd much prefer to spend your birthday with you by my side,
But I'll tell you a little secret, I've never told a soul,
I heard it from a whispering willow a long long time ago.

A birthday girl is special, but a birthday angel is divine,
To bestow their birthday wishes all the Saints stand in line,
Every single angel, yes every single one,
Sings her Happy Birthday in choral unison.

Her candles are volcanoes,
Her balloons are shooting starts,
Her presents come from Earth and Sky and galaxies afar.

So Corinne, please know we'll celebrate you until you're 97,
And if you'll be strong, we'll try too, 'cause (shhhh)...
The cupcakes are better in heaven.

Corinne and Kaitlyn McCarthy were both due to be born 1 year and 4 days ago.
Whitney is a big lover of cupcakes! :)

A sad day...

I fellow online blog mom has had such a horrible sadnes..

Jennifer (who lives in Pennsylvania) delivered triplets, and sadly, all three have now passed.

Christoper lived for 28 minutes
Alexander lived for 11 days
Emily - just passed away yesterday and lived for 5 months.

Emily was such a tough, sweet little baby, but sadly her extrememe prematurity took her life also.

Premature birth is such a sad awful thing...

Please send your prayers and wishes to Emily's parents: Jennifer and Tony

Here's a link to their blog: http://jakae.blogspot.com/

I like to think of Corinne playing with all the other angel babies like Chistopher, Alexander and now Emily up in heaven. They didn't get a chance to live with us here on earth for very long....but they can be toghether and play for ever. All of the little babies that are so terribly missed by their parents.

Pictures from Kaitlyn's kidney test

Here are a few pictures (taken from my cell phone) from Kaitlyn's kidney test. She is completely strapped down, at this point, she wasn't crying, but the "calm" didn't last long.
Dad was nice enough to come to the hospital and help, even though he was at work.
When I pulled these pictures off my phone, I found the following picture that I forgot I had taken. This is a picture of Melissa, Caitlin and Dillon. They live in Southern California and I was able to meet Melissa and her children last November when she gernously donated some milk to Kaitlyn. Melissa too lost a twin from prom (water breaking). Her sweet Angel Madilyn is watching over her sister Caitlin. Caitlin was born at 24 weeks and is doing very well. Melissas blog is linked to the right.
 

Please say hello for 2007!

On the eve of my official due date and as I mentioned in my previous post, I'm absolutely amazed at the amount of visitors to my blog. I know MANY of you stop by and visit but never leave a comment. This time, just once at least please leave a message on this post. Just click on the comment link at the bottom right hand corner of this post where it says: Comments. You don't have to register, you can just click annonymous if you want to, please still answer these questions.

I'd love to know:

1. Your name (first name only is ok if you don't want to leave your whole name)
2. Where you are from
3. How you found my story
4. How long you have been reading it
5. Any comments you have for a "grown up Kaitlyn"

My entire written story will be saved for Kaitlyn to read when she grows older and I'd really love for her to know how many people have been praying for her and routing her on.

Thank you for your continued support - it really means the world to me and has helped me through many a dark day.

1 year old on 1/4/07

1/3/2007
Happy New Year to everyone!

Tomorrow is my last “tough anniversary day” in this journey we have been on. January 4, 2005 was my girls’ due date. Just think. If I never had my amnio, I’d probably just recently have given birth to my 2 little healthy beautiful twin daughters’ and my life would be completely different than it is now.

Brian is working a double (48 hours straight, so it’s just Kaitlyn, me, vomit and doctor appointments!)

Sigh…

Well I’ve got some updates, as always.

Yesterday Kaitlyn graduated from one of her doctors after a HORRIBLE test. (Good and bad news I guess). My big girl is graduating! (I guess I have to look at the bright side, right?)

Kaitlyn has had kidney/bladder reflux since she was released from the NICU last 2/06 Kidney reflux means that when her bladder empties the urine goes backwards (into her kidneys) instead of outside her body. She had grade 5 reflux (the most serious type) on both sides. This was bad. She’s been on a low dose of Septra (antibiotic) since this was discovered last February. I hate that she had to be on yet another drug, and long-term use of anti-biotic – yuck! Last February she had a powerful x-ray while they shot a contrast material into her bladder (via a catheter) where the reflux was confirmed.

In my heart I really felt that the reflux was gone, but the Urologist scared into continuing the antibiotic, as if I discontinued 9t, she could get really horrible bladder/kidney infections which could be kidney threatening. We were supposed to wait until next February again, but I really asked the doc if we could do it sooner as I wanted to get her off the anti-biotic. Yesterday she had to have this repeated - I had been dreading this test for months now. We found out once we got to the hospital that the test this time was even worse than last year.

First she had to have a catheter inserted into her bladder. Then she had to be constrained for at least 20 minutes (maybe 40 minutes) while they slowly filled up her bladder with a fluid and radioactive material (yes they brought the radioactive material out in one of the metal boxes with the scary radioactive symbol on it). Now, for those parents of Preemies, they probably well know that preemies especially HATE being constrained. I think it has to do with the fact that the first 4 months of her life she was constrained, wired up, tubes down her throat, into her hands, etc. Kaitlyn doesn’t like to be held, she doesn’t like to have her hands held and this sounded terrible.

She screamed (her fairly quiet vocal chord paralyses scream). It was terrible, tears rolling down her cheek – and my cheek! Brian was at work during the test (fireman, works 24 hour shifts), but he was able to leave to come to the hospital, I was so glad he was there to help hold her legs down. They then put towels all around her body and taped her down. All I kept thinking was that this certainly wasn’t going to help her desire to be held.

30 minutes later, as they slowly filled her bladder and waited for it to empty the test was finally over. But, at least we had some great news, it didn’t look like there was any signs of reflux. I had to go back to the Urology department (at UCSF) to wait to talk to him to give me the official answer. (there were at least 7 kids waiting to see him, uggh. I asked if there was any way (as my child was at RSV risk) if he could look at the xrays and call me with the results. They were actually really nice and had an assistant look and gave me the official word, she’s done with urology! This whole thing took all day long, but……

One less doctor for Kaitlyn to see from here on out!

VOMIT PATROL

The last few weeks have been really tough. As you all know, I recently commented on Kaitlyn’ progress with eating and vomiting….Well, she seems to have taken a turn for the worse again. It’s been really hard on me especially; as I was finally starting to think we’d turned a corner. Just a few days ago I had a 20 vomit day again!! Her phlegmy morning vomits came back. I have to empty her stomach and get 15cc’s of phlegm from her stomach. I’ve been trying to tell the doctors for ages now that the phlegm and the vomit are related. They just told me to talk to the lung doc about it (which didn’t make sense to me as the phlegm is in her stomach, not her lungs). The lung doc gave us inhaled steroids to give her (which is for asthma) to try to reduce the phlegm (I figured it wouldn’t work – it didn’t) and steroids are risky anyways.

But as the phlegm (and her noisy upper respiratory breathing) went away, her vomits greatly reduced and her desire to eat increased.

As her vomits returned (she never stopped vomiting before, but it was greatly reduced) her desire to eat/drink anything by mouth went away too. Where a few weeks ago she was actually pulling water to her to drink, now she’ll take one tiny bit and then push it away.

The phlegm went away on its own…and then came back…..I think I can attribute it going away to an alternative healer that I’ve been taking Kaitlyn to. Her name is Connie http://www.mymarinacupuncturist.com/index.html and she practices The Feinberg Technique: http://www.neuromodulationtechnique.com/

Today I had another appointment with Connie and she said that sometimes things can better and then worsen again. The previous week Connie concentrated on treating Kaitlyn’s “head shivers”. For many months now, Kaitlyn would “shiver” as if cold. She’d do this at all different times, mainly when she saw or noticed something. I didn’t really think about it after the last treatment (as I’ve been swimming in vomit and when something isn’t happening, you don’t think about it), but this morning I realized that she really hadn’t the head shiver thing much (or at all) the last 2 weeks since her last visit. This treatment is definitely a bit “out there”, but hey, I’m willing to try anything to get her to stop vomiting.

All of Kaitlyn’s therapists were convinced that she wouldn’t even crawl until she hit 12 months adjusted (now). And she’s been doing so great motor-skills wise. I think I can attribute the really great improvement in that area to another alternative treatment, Chranio Sacral Therapy Dr Barbara Newlon

Who knows if she would have gotten better on her own, but all I know she is improving. Let’s hope that today’s treatment helps get her vomiting back under control again. As 4 days ago I thought I was going to have a break-down when she vomited about 20 times in one day. It got so bad that I had to bring Kaitlyn back to sleeping in my room again so I could better listen and be there for night-time vomits. I thought we were going to have to go back to 100% breast milk again (right now we are on 50% breast milk 50% Compleat). She’s really started gaining some weight since we’ve successfully transitioned to 50% formula.

Weight check and other updates:

-Kaitlyn’s last unofficial weight is over 18 pounds (taken on our home scale).

-Kaitlyn loves to stand up (assisted). She can walk side-ways from furniture to furniture piece, but as soon as you try to hold her hands to help her walk) (Remember she HATES having her hands held) she lifts up her legs to sit again.

-For a few seconds she’s held herself up standing, but I don’t think she’ll be walking anytime soon, as there really isn’t any forward feet motion. The next physical therapy appointment will be good for this.

-The smiling has decreased as the vomiting increased.

-We’ve transitioned her to the big girl car seat, as her feet were hanging over the edge of her infant carrier. Strange to think that many parents transition from the infant car seats in just a matter of a few months after birth and for Kaitlyn it was 15 months!

-Synagis – Kaitlyn is still getting her monthly dose of Synagis ($1,500 each!) This helps ward off RSV that preemies with lung disease are very suspectible to. At least K’s Chronic Lung Disease is mild. A fellow micro preemie mom (Lovlorn twins) recently had to go to the ER as their daughter got RSV and had to be admitted.

Diet and eating
-Breast milk!!! Wow, I have to say the response I received from mom’s generously offering Kaitlyn their breast milk has overwhelmed me with gratitude. When things are really tough and I don’t know if I can handle much more, a wonderful mom emails me and generously offers her milk. This weekend I met 3 moms who donated milk to Kaitlyn, (thank you Mary, Marilyn and Jessica!) When we showed up at Jessica’s house, she even had dinner waiting for us to take home. The whole drive home I kept telling Brian how touched I am by the generosity and caring of others. And Jennifer (another micro preemie mom who has emailed me from Folsom), sorry I haven’t emailed you back yet to make arrangements, with the last few days of tests and such it’s been a bit crazy.

We’ve been trying to cut down on milk shipping costs (it’s crazy expensive to fed ex frozen breast milk over night), so I’ve been trying to find local donors. One mom (in LA (Orange County), (a fellow micro preemie mom, Hechung and daughter Alicia – linked to on my blog) has offered us a ton of milk, as her micro preemie doesn’t like frozen milk, and she’s been pumping for months and has a deep freezer full. If anyone reading this blog is driving between LA and the Bay Area, please let me know if you might be able to act as a currier and bring us some milk.

As awful as everything is, I have to try to find a reason sometimes for all of this happening to me, and I think of all the people I probably would have never met. I’ve been touched by so many people. I’m absolutely amazed how many folks have visited my blog…When I wrote my Christmas card just a few weeks ago, my blog ticker was at 63,000 - now it’s at 65,700. WOW!

-Eating progress – none, it’s gotten much worse again.

-Blenderized diet. My next goal is to start trying to transition Kaitlyn to a blenderized diet. She can’t be on frozen breast milk forever! This means we’ll be blending real food in a very specialized blender. http://www.vita-mix.com/ Children with g-tubes qualify to purchase a vita-mix blender at the companies cost with an RX from the GI doctor.

I’ve been very frustrated trying to figure out how to start this blenderized diet thing. I’ve been so forced into a box with how many calories and volume that Kaitlyn needs daily that I’m at a loss as to what to do. A local g-tube mom (Heidi) used a dietician in Arizona who I’ve decided to hire to help us get a handle on the blenderized diet: http://www.foodbytube.com/ She’s going to work out menus, fat, protein, vitamin, mineral etc requirements for Kaitlyn! I’m very excited. I think it is going to be a lot of work, but cleaning up vomit 24/7 is a lot of work too. Maybe this will finally help our little one stop vomiting. A Yahoo support group (Blenderized Diet group) had been a huge aid in supporting us. Blenderized-Diet Group on Yahoo

And, on the subject of g-tube feeding suggestions here are some resources
I’ve pulled together. Liz's G-tube Resources Page

Well, I’ll post some pictures soon for this post. I had to stop writing because the Physical Therapist came, and I’ve done a feeding which included cleaning up vomit 3 times. and I’m alone for 2 days!