To My sisters...

This was recently sent to me:

To You, My Sisters (and Brothers!)
by Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.
We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries. All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry.
We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.
We have our own personal copies of Emily Peri Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it. We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent.
And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

22 week ultrasound

I had another ultra-sound a few days ago at 22 weeks, and sadly, my Placenta Previa (PP) is still in place. (my placenta is covering my cervix) For those of you who want a bit more info as to what PP is, here is a picture:

I have Complete PP, which means my cervix is compltely covered by the plaenta.

From the Mayo clinic.com "If you have placenta previa, the placenta will detach from the lower part of the uterus as the cervix begins to open in preparation for labor. This can cause severe vaginal bleeding. Thankfully, placenta previa is nearly always detected before a woman or her baby is in significant danger. Although some women have light bleeding or spotting during the first trimester or early second trimester, bleeding associated with placenta previa usually occurs near the end of the second trimester or the beginning of the third. The amount of bleeding may range from light to heavy. And it may stop, but it nearly always recurs days or weeks later. Some women who have placenta previa experience contractions with bleeding."

So, that's it, just wait and see.

Now it is still very likely (wishful thinking) that it may go away as the size of my uterus grows with our baby boy. But it's a waiting game! If it doesn't go away, it could cause serious complications (pre-term birth), so every time I have an ultra-sound I'll be hoping for good news. My next ultrasound will be at 26 weeks (wow, that's when I delivered before - very surreal).

The good news is that all the extra ultrasounds means that I get to see my little guy. And it's definitely a little guy!

Kaitlyn and I caught dads bug, at least in me, it's just a cold, but Katilyn once again has developed a bad cough, so we are back to doing breathing treatments again around the clock.

And not great timing, tomorrow is our March of Dimes Walk! Thanks to ALL of you have so generously donated in name of our girls! Brian's firehouse donated $500.00! Wow, thank you San Francisco Fire Station #1!! In that I'm so inovled iwth our local Family Teams Chapter, we'll be going no matter what, but wiht my PP and all, I think it will be a short walk this year for the McCarthys. We have about 7 others joining us this year, so it should be a lot of fun!

Teaching the bunny to vomit

Ok, I'm posting this picture for all of us moms out there whose children vomit non-stop without any explanation form the doctors. This seems to be a common thread of early micro-preemies. Unexplained vomiting. And knowing from experience it's really an awful thing for us parents as much as it is for our children. Not only do we live in constant fear of vomit-fest, we smell like vomit all the time from cleaning it up, our carpets are ruined forever, we limit were we go in public, we never go on vacation and on top of it, we work sooo hard to get food in them it's the most frustrating experience that unless you "live" it you can't imagine, but seeing all that "effort" go down the drain, literally.

This was taken by my good friend Lisa here in SF. She has 2 sets of twins, all preemies. One of her daughters has a very serious, life-threatening medical metabolic condition, which has landed her in the ICU too many times to count. She turns blue all the time without reason, she's also is a huge vomiter and doesn't eat.

This picture was taken in the ICU, where Morgie was "teaching her bunny how to vomit." Sometimes we need some humor! She even has the mouth motion going to teach the bunny how it's done!!

April Update

Kaitlyn had Bronchitis, but some serious anti-biotics helped take care of it. (thankfully). She still has a bit of a runny nose, but is now sounding much better (meaning, no more breathing treatments). Her skin rash (eczema?) also seems to have cleared up (using cremes and such) not sure really what caused it, maybe it was the goats milk or the soy milk products we were using when we went cow-dairy free.

Kaitlyn's peeling hands

We are back to using the DVD for most of the feeds. We start the feeds without one, and unfortunately you get some of this behavior: (so different than the last video I posted right?)




She is still vomiting too, The other night I was having a really good dinner, nearing the end and she tried to swallow a potato from her potato salad whole (even though it's mashed down) and ended up gagging (normal for her) and emptying her entire stomach and then some. I was so shocked by the size of the vomit, I had to weigh it, it was 175 g....her meals aren't that much, so there was definitely water and food from her previous feed.

poor baby...yes, that's a bowl full of vomit

Dr Patel (http://www.clinic4kidz.com/ Was here today (her feeding therapist). She was amazed how well Kaitlyn was doing. I don't see as much improvement from day to day, because it's my life sadly, but she kept saying over and over how well she was doing.

Here's the best news of all, we charted Kaitlyn's weight (not a lot the last 4 months) but she's still right on her own little curve on the chart, but she's one active little girl and I was very tiny as a baby also. So we decided to DC the night tube feeds! Do you know what that means? It means my daughter will be eating 100% orally for the first time EVER. We are not increasing the amount she takes in during the day (there is no way she could tolerate it), but the night feeds have supposed to have been for supplementing what she looses when she vomits. We'll try it for month, closely watching her weight to see how she does.

What this means: I can sit on the couch like a "normal" parent once she goes to bed. I don't have to prepare and make her Blended Diet, I don't have to get up every 20-30 minutes to push in a syringe of food into her belly, I don't have to wash the syringes, flush the tubing, ugggghhh, I can't tell you how great this is going to be for us! I can't wait!


We had a bout of incredible weather last weekend (it was nearing 90) and Kaitlyn and I went to the beach (Dad was out of town for a week) and we had a blast, (excepting of course that she vomited at the beach, and I longingly watched other toddlers sitting nearby nicely eating their food and was wracked with a bit of jealousy). Kaitlyn also did not like getting dirty, she wanted to leave not long after we got there in fact, which sucked as it's an hour drive from my house. But Mom sure enjoyed the sunshine and Kaitlyn loved putting her feet in the ocean (even though it was freezing).



Pregnancy:

I'm 21 weeks as of yesterday (5months 1 week). My next ultra sound is next week to see if possibly hopefully my planctia previa may have moved. I feel great! Just worried. I've grown a lot all of a sudden!

Brian is quite sick sadly. He was out of town for a week, with his newly finished four-wheeler (He had a great time and I was so happy for him, especially that it's finished). He went to work the day after he got home and has been in bed since he got off work yesterday. He feels horrible! Hoping that Kaitlyn, myself and baby boy don't get it!

10pm update: first night of no tube feeding - WOW, it feels so strange! I'm really enjoying this! But Kaitlyn did just have a weird crying/moaning/trashing bit in her sleep, this is her first NIGHT without food! Wonder if it's related?

An amazing feed (2 months ago)

I sometimes hesitate to post really great videos like this one here, as I then hear from people, oh wow, Kaitlyn is fine. She's eating just like a toddler. and they think that my life is "easy." It's so far from the truth. Sadly, Kaitlyn's eating started really going down-hill not long after this, her bad behavior came back in and we've had to reinstall her watching the DVD and she's not willing to feed herself more than 2 bites any longer.

But anyways, this was a really great feed and I forget sometimes as I'm in the middle of vomit and marathon feeding sessions that she is eating and 6 months ago she ate NOTHING by mouth.

Enjoy

Kaitlyn is sick :(

Dad giving Kaitlyn a breathing treatment, look how "sacked out" she is in his arms. She never sits willingly in our lap without a distraction.

Kaitlyn came down with a bad cold on Friday, now it's in her lungs and we are doing around the clock breathing treatments. We'll take her to the doctor on monday. I always worry so much when she gets sick, not really knowing what type of shape her lungs are in..

Poor thing, she cried on and off today for no reason (she's never done that!) It breaks my heart!

She even snuggled with us as we gave her breathing treatments - this is a FIRST. (Remember, Kaitlyn's normal liking-to-be-held period is about 10 seconds (Unless it's in the shower or on a moving train/swing) normally it's a constant fight to get her to sit still. This time she was even willing to put her mouth on the breathing tube and keep it there. Also a first. Must be helping make her feel better.

Keep her in your thoughts!

Update- from doctor - no ear infection, is going on antibiotics due to the large amount of gunk in her lungs....She also has eczema (She's had a weird rash for about a month)

Here's my 19 week belly last week. Getting bigger!

new glasses!

Here are some new pictures (in no particular order)

Mom, dad and Kaitlyn at the San Francisco Zoo (yes the Tiger incident Zoo) the Friday before Easter.

Kaitlyn opening her Grandma Corinne's Easter Basket!

Kaitlyn's new glasses!

I'm a big girl now, drawing!

New Glasses

Her new glasses have clip-ons for the sun too! Wow, what a deal! I spent only $35 for frames, lenses, shipping and the clips! They are a little big for Kaitlyn but she seems to like them and they are soo cute! I purchaed them at: www.Zennioptical.com

Kaitlyn playing with the boys at the "Disco Museum" well the Discovery Museum but that was too much of a mouthful for her to say

Again at the Disco Museum, loving splashing all the other kids with the fish in the stream. She had a ball.

Kaitlyn has to hold on to something at all times, just try imagining how hard it was her to do this feat!


Kaitlyn's green St. Patty's day Shirt and her balloon! Have I told you how much she loves Balloons? She goes ape if she's at a park and see's a balloon and can't have one.

Mom and Kaitlyn looking at the Grizzly bears


Dad and Kaitlyn at the SF Zoo, cute father daughter picture

Kaitlyn wanted to sit on the big chair, she's wearing a cute top that Grandma Corinne sent for Easter. She says "Grandma Shirt" whenever I put the top on her!

At the Children's Park outside the Oakland Zoo on Easter Sunday. We met the family there and had a grand Easter Egg hunt. The above 2 pictures are with Grandpa Poppy, My dad.

Kaitlyn opened up each egg after she found each one, and the change/jelly beans (which she'd put in moms mouth) and stickers kept falling out, it was funny, as you had to put her basket under the egg or she'd loose everything in the egg.