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…..