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Wednesday, April 18, 2007

A lot of random thoughts:

A lot of random thoughts: Honest and open thoughts

(The video above (poor quality, taken with my cell phone at feeding therapy stil brings tears to my eyes, major tears, flowing tears. more later at the end of this post -- In honor of my mother's birthday (now 2am on 4/18 When I told my mom of this feat of Kaitlyn's first "eating" today, she said it was the best birthday present ever! Happy birthday mom!!!! I love you, Grandma Corinne. I wish your name sake grand daughter could be here with us to celebrate your day. Boy am I emotional today. I"m going to bed.)

It’s 12:30 am as I start to write this post. I just finished hand washing 3 -60 cc syringes (like I do every night) after pushing 8 ounces of blenderized diet that I made for Kaitlyn this morning. I can never go to bed before midnight due to all the “night duties.” I’m in a very strange mood. A bit different than my normal posts, here are a lot of random thoughts…..

As I pushed (via syringe) Kaitlyn’s food tonight, I was over whelmed with such love and emotions for my daughter as she lay in her crib. I reached out and touched her hand as it laid spread out on her crib. I had thoughts earlier in the evening of her growing into a teenager, and loving and laughing with her and reminiscing of all that we’ve been through to see her into her teenage years.

I miss her sister Corinne more than words can say. I feel so sad when life is just “going” on and forgetting her sister. She should be here. Some times I feel that this isn’t real, that Corinne is still coming home to us. That she’ll be Kaitlyn’s sister. That Kaitlyn won’t be lonely anymore. That I never got my amnio. I saw a movie star just had twins. Where are my twins?

I’ve wanted to get pregnant since the moment I lost Corinne. I got my period again today. Again. No luck. Again. I feel I’m once again riding that infertility roller-coaster (but this time ever so silently). I’ve had to spend over $6K recently on dental work. Money that I could have spent toward IVF. Deals at work going sour. Money that could have helped us try IVF again. I’m 40 years old. I feel my clock slipping away. Will I ever have the chance to have another baby?. Will Kaitlyn have a sister that she should have?

Last night I became very depressed as I read a fellow preemie blogger talk about the horrible aspects of having a preemie that everyone likes to gloss over. The fact the being a preemie can have some horrible long lasting brain, learning, social issues. It terrifies me. What will my daughter be like? How will laying in an isolette for 4 months affect her? Being poked and prodded and filled with all kinds of drugs to keep her alive. What are the long term effects of all those drugs?

I get so tired of feeling like I have to explain that my daughter isn’t out of the woods. I want everyone to feel this cautionary feeling that she’s still not “ok” in case we have continued lasting effects of her prematurity. This other on line mom blogged that when her daughter was 2, she was released from early intervention that she was just fine, and now the girl is 7 and has major mental issues. How can this be? I watch Kaitlyn so closely , what is her future?

I hardly slept a wink last night. I tossed and turned and had night-mares wondering what the future holds for my daughter. All those doctors telling me to terminate my pregnancy, that I would never make it. I went 10 weeks, holding my daughters inside me, holding and wishing for 10 weeks lying in a bed not knowing the outcome. The other night it hit me; I spent almost 3 months lying in bed. 3 MONTHS!!!!!

I’ve had 3 random people ask me recently if Kaitlyn’s glasses are for “eye-protection” Some of my own family members didn’t even know she was wearing glasses. This really bummed me out.

Easter was hard. We were with Kaitlyn’s cousins (one is Kaitlyn’s exact adjusted age , he is so far ahead of Kaitlyn) He was actually searching for Easter eggs, while Kaitlyn was so overwhelmed by her sensitiveness of just trying to walk on the grass. It really hit home for me how delayed she is. I’m a horrible person for getting so bummed out by this stuff.

(As I said, this was going to be a post of stream of consciousness).

I have well over 200 emails that need responding to in my personal email inbox. I can’t get to them. I can never seem to get caught up. I deal with the work emails first always. The personal emails keep dropping lower and lower in my inbox. Technology has made my life easier and so much harder at the same time.

My new goal is to “publish” my story. I’ve started a support group for other micro preemie mom’s. I really believe this group has helped a lot of women. I want to see my story on Oprah. I know there are so many out there that need help, to know that it’s not all roses. To have a realty check, but to know that there is hope too.

Earlier this week one of our EI folks (early intervention) asked how we “feed” Kaitlyn standing up. As I stooped over Kaitlyn as she walked about the house, attached to her with the feeding tubing and pushed the syringe, I think she got the picture. This is SOOOO not “normal” parenthood.

Kaitlyn became sick again over Easter. The cough and mucus got into her lungs again. She had to go on oral steroids. My mom got too experienced a bit of our “life”. Breathing treatments. A lot of vomit. Constant vomit. My dad didn’t see any of this. They just said, wow she's great and normal, everything perfect. It bummed me out. They really have no idea what I go through. I’m a terrible person for writing this but it’s true. Not many really have an idea what our life as parents is really all about. I don’t comment much on it here on my blog. This is supposed to be roses and happy news. It’s not always. It’s hard. My life is hard. Our relationship as husband and wife is really suffering.

OK, on to some good stuff: Why I started my post on a bummer I don't know, but Kaitlyn has had an amazing, amazing week leaving me speechless:

She learned to do sign language, say some “words” and today ate ½ container of baby food!!!!!!

As I said, this was going to be a stream of consciousness post.

Just before we left for Easter weekend in LA at my mother’s house, Kaitlyn started saying “dada” (to both me and Brian). But we realized quickly that she was saying her first words. She absolutely breaks out into “dada” when I walk in to the room. How funny to be so ecstatic to be called “dada”! I don’t care! Kaitlyn has a paralyzed vocal chord. To hear her sweet little soft voice is absolutely heaven to my ears.

While in LA we visited my good friend Diana who has dog. Kaitlyn decided that this was the time start finally signing. The sign language for “dog” is to pat your hip, like you are calling a dog to come here. Kaitlyn pats her chest when we say doggie or when we say where’s the doggy, she looks at the doggy and pats her chest. It was so amazing.

I’ve been signing with her for 6 months now and got so frustrated at her lack of showing any interest whatsoever. Then all of a sudden, she absolutely got doggie.

Kaitlyn picked up 3 other signs in one day!
After Easter: Kaitlyn and I were playing with a funny “propeller hat” in front of a mirror and I kept signing hat. She smiled and smiled at this hat (I have it on video). Then just 2 days ago, I took Kaitlyn outside (it was very bright and sunny) so I put a hat on her, and signed hat. She immediately gave me the Hat sign. She did this a number of times. I couldn’t believe it!

I’ve been signing “more” with her forever, and now she’s starting to “clap” when I sign more with her. Not really the sign, but a clear indication that she’s “getting it”.

Later I tried the sign for “ball” Kaitlyn not only go the sign (close to it, it was more like clapping), but she actually said “ba” . I tried to sign “drink” with her and she tried all sorts of things with her hands, none of them resembling the sign for drink but she “got it.” I’m in awe! Something has finally clicked for her.

When I read her stories to her that night, there was a duck on the page and as I read quack-quack, she took her little fingers and opened and closed them. I couldn’t believe it. I don’t even remember when I last signed the duck sign (she didn’t have it super accurate but she got the concept). I singed it while reading, and she looked back up at me and my fingers and really tried to do the sign. It was amazing.!!!

So in one day, she started signing: hat, ball (and saying ball), more, duck and dog! I called Brian at work and told him. He laughed and said those were exactly the words our daughter needed to communicate with us! You know signing the word duck was really practical! 

Her “feeding” since returning home has been amazing, and I have credit most of it our new nanny. Kaitlyn is now being fed her food (via gtube) over 30 minutes. I blend up a batch of her food every morning in the blender. We give her 6 ounces over 30 minutes. For many this may not seem like much at all, but I have to tell you before I started the blenderized diet, we would spend 1 ½ hour trying to push 3 ounces and it was a night mare, vomit happened at every feed. Now, we can push double the amount in less than ½ the time and rarely get a vomit! Our nanny discovered the new secret that if Kaitlyn is walking around while feeding (not an easy feat to push the food as she’s walking around, but) she rarely vomits!!

What a miracle. After 3 days of this and only 1 vomit, I started tearing up as the nanny gave me the news at the end of the day. 1 vomit in 3 days!! It’s hard to really put into words how amazing this is.

Yesterday I received a call from a Dietician from the company that provides our Medical Equipment (syringes, formula, feeding pump, gubes, etc). I asked our doc to call in an RX for something called Duocal, ( a powder than can be added to food to increase the calories). A dietician called from the company to inquire why we didn’t want formula any more. I said I had my daughter on a Blenderized Diet.

The dietician FLEW OFF the handle, saying that you should never put “real food” down the gtube, it was so unsanitary, and the formulas were pasteurized and sterile and than what I was doing was horrible. I can’t really explain how upset I became and how I responded. I explained that my daughter couldn’t tolerate anything but breast milk for the first year of her life that she vomited up to 20 times a day. That as soon as I transitioned to this new blenderized diet it was the first time that we had any reduction in vomit. That when she was sick recently I put her back on her night time pump with formula and immediately the morning pghlemy vomits came back. That there was no way that I was going back to formulas and that she should read so many other moms’ stories about how we “saved” our children from the life of prescription formulas, prescribed form drug companies marketing to dieticians

Can I say how upsetting this was to me? Sorry for the rant. Kaitlyn’s new diet has been a life saver to us. At this moment (it’s 1 am now) I am typing and I just realized I don’t even have the baby monitor on to listen to my daughters possible vomit. We ALWAYS were on the alert 24 hours a day for vomit. Not any more. I’m getting some life back. My daughter didn’t vomit the entire day today. Can you image not vomiting?

Today an even more amazing thing happened:

At Kaitlyn’s feeding therapy Kaitlyn ate almost ½ a container of pears! This has left me speechless! Totally speechless. She opened her mouth. ………this is AMAZING and wanted food via spoon! She even came forward to the spoon! Whenever I’ve tried to feed her (even 2 days ago), swatted the spoon and shut her lips like there was no tomorrow.

I captured this on my cell phone video (not the best quality, but watching it again just now still brings tears to my eyes!)

I don’t know what will happen when I next try to feed her again. Maybe it was because we delayed the feed by 2 hours so she maybe felt “hungry” I think that’s the next thing for me to research.

Well, it’s now 1:30. I have to proof my typos. This is a huge 5 page stream of thoughts. Am I really going to post this? Who knows…..

14 comments:

Quilao Triplets said...

Liz,

Thanks for the heartfelt, honest post. All of the feelings you write about are totally justified given the various things you have going on and must be throwing you for a loop right now as it sounds like quite the rollercoaster ride.....joy, anger, sadness. You are right that life is not always shining and happy and it is difficult to always put on the smiling face for everyone....I struggle with the same thing. Your beloved Corinne will always be with you and she is watching over Kaitlyn and your family ALWAYS....how happy she must be for the awesome gains Kaitlyn has made recently.
And just a quick comment about the clients who have been screwing you (for lack of a better term) at work....it's all about karma. You are obviously an honest person who will go above and beyond to do the best job you can and your hard work and honesty will get you much farther in life. I hope you can find a way to let those negative experiences go...you have much more important things to devote your time to. Easier said the done, I know!
Your nanny sounds like she has been a great addition to the family. Kaitlyn and Corrine are so lucky to have such awesome, loving parents.
Sorry for the long response, but your post sruck a couple of chords with me!
God bless,
Casey

Anonymous said...

Dear Liz,

I have been reading your blog for some time now and felt the need to respond. I read a lot of preemie blogs & I ask myself why I read them. Until my own daughter was born at 33 weeks, I always and naievely thought preemies were born to drug-abusing, alcoholic mothers, period. I think the birth of my daughter and going through a non-typical first few weeks in NICU opened up my mind to understand what others' lives are like. We are so used to living our lives with blinders on, always expecting everything to work out and be sunny and happy all the time. I am only now in my 30s finding out that this is not the case. Sad huh? I thank-you for sharing your "stream of consciousness", it really helps me understand what you are going through and boy, it is tough!! I think you should definitely write a book about this and it should be marketed to all expecting moms, not to scare them, but to help folks understand all the shades of "normal".

I guess I don't completely understand what your daily life is like, but I really want to. I want to because I want to be a better person. When I see a child with special needs or a tube hanging out, I don't want to just stare or look at them with pity. I want to share in the experience, the sadness and the joys and really get it. It will be a process, it will most definitely not happen overnight, but I thank you for sharing your life so that I can start getting it...without yours and others posts, I would truly be lost!

love, hugs, and kisses to you and Kaitlyn. She is absolutely precious.
AK

Sorry if this has posted more than once

Kim said...

Liz, you are not a horrible person for thinking/saying these things. You are an honest person. A wonderful person. A person who is so devoted to her daughters and family that she tends to put herself (and her frustration and anger and self-pity and regret) aside to tend to the needs of that family. And you know, every once in a while, in order to stay human, you need to vent. You need to get out those emotions that would suffocate you if you kept them in forever.

You and Kaitlyn have had an amazing week. Not only have you had to deal with seeing, in the flesh, Kaitlyn's delays (based on the same-age cousin), but you have gone from that low to the incredible high of seeing your daughter eat something (and want to eat something!) from a spoon for the first time in her life! Obviously the rollercoaster of parenthood doesn't end when you leave the NICU, but I would say that you are doing a better job than most people I know at staying buckled in for the ride.

You are an amazing woman, an amazing mother. And Kaitlyn is an amazing kid, a miracle baby. You two are a formidable force and, based on the events of this week, there is nothing you two can't do.

Kristin said...

Ditto to what Kim said. I love to come here and read your stories, good and bad, and cheer(and cry) right along with you when K reaches milestones and does amazing things or when the shit hits the fan and you have crap clients and crappy days with vomit...
One day Oprah will call! :-)

liz.mccarthy said...

OK, I edited my post somewhat, I deleted the stuff about work, as I know clients of mine might read my blog.

Anonymous said...

Liz,

I can feel the joy you are feeling as I read your post. How wonderful to see things click!

I have tears in my eyes when I read that she is eating now!

How Wonderful!

Anne

NHDOLL said...

Liz,
One day at a time is all one can worry about! You amaze me with your courage. Please know that there are strangers who read about your life and wonder where you get the strengh to get up every morning. Honesty is always the best! when you look back at this blog when Kaitlyn is a teenager you will have an honest account of her life! Chin up....

Jill said...

Great post Liz...........Kaitlyn has really taken off and I am so excited for you all. We are getting ready to start the Blenderized diet so I may be calling you:)

Shannon and Carey said...

Liz. I cried with you. The video is wonderful! Yeah to eating. I guess I was one who thought Kaitlyn was doing alot better and for that I apologize. I do however know that she has been wearing glasses and that they are for far more than protection :) I am totally diggin' that hair-do in the video. Too cute. I am going to say alot of prayers for your family. You mentioned the toll it takes on a marriage. Im praying specifically for that area. Ill also pray for the fertility arena. I just want you to know Im cheering you all on from way far away. May your days be brighter.
PS: I have Corinne's shirt finished. I cannot wait for you to get it.
Thinking of you in these dark times. Thinking of Corinne and praying for you when your thoughts turn to her. Thinking of you and Brian in hard times. Thinking of Kaitlyn and hope this new experience of liking food continues.
Shannon in Austin

Kendra's mom said...

Your post has left me so teary-eyed that I can barely type anything. I think you are doing a great job and you should definitely write about it. Of all people you do have every right to complain about life yet you generally don't. But that is what blogging is all about - venting our feelings. I suppose it does depend who reads it though. You have 2 gorgeous daughters and I am sure Corinne is dancing in heaven with my Kendra.

Laura said...

i remember how much i loved those times when i would tube feed daniel cuddled in my arms while i held the 60cc syringe.
stand your ground about the blenderized diet. we met big road blocks from our dietitians as well as the rest fo the gi team....funny how dr berquist's team embraced the blenderized diet when they saw daniel thriving and eating BY MOUTH.
this is one of those days...it's hard but hang in there.
one thing i would share about mental/emotional issues further down the road....no parent knows for sure what is in the future. i have a perfect full term child who struggled BIG TIME with severe depression and adhd. she still has her moments and it breaks my heart but choosing to be a parent means we choose to wear our heart on the outside of our bodies where it does get battered and bruised a lot. the reward is our children's smiles, hugs and triumphs even with the normal things...like eating with a spoon. How amazing is that? I know how amazing that is and I am so thrilled for you guys.

Anonymous said...

dear liz-- thank you for your writing down your thoughts. i think it is so brave of you to say what you are feeling and help others understand a bit better what is like to be the mom of a micro-preemie. we have 30 week twins who are now 2 and i can truly say that i had no idea ( or even thought) what it was like to have preemies before i had them. now, that's all i think about. i really don't know how you do it all. you are amazing-- and even more amazing because you have real reactions to the situation. good luck as you try grow your family. not sure where you are doing IVF, but iknow cornell and corlorado center for reproductive medicine have some of the best rates.

Kristina said...

Liz, I just want to send hugs your way. I wish I had the perfect words to help you through all these crazy emotions we moms of preemies go through...but I don't. So just know you're not alone!

And you know what, Kaitlyn is doing SO GREAT! I know she's delayed, but that's normal given her circumstances. She has come SO FAR in the past several months!

Kristina

Nancy Brown said...

Allthough my micropreemie has other issues.. I am so with you on so many of them. I have a nephew that is FT and the same age as we "should" be. I know the sadness even though we feel like jerks.

LOVE IT!!

http://nancybrown.wordpress.com