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Wednesday, April 26, 2006

Random Thoughts...Merry Christmas in April...

Well let's see here are some of my random thoughts in no particular order....

Well today Kaitlyn is "drinking" (via pump) milk from Christmas Eve! How funny is that. At least those are some days that I can remember what I ate - today she is enjoying a fabulous Christmas eve dinner that my mom cooked.

I'm still pumping 3 times a day. Can you believe it? I've been using a breat pump for a few days shy of 7 months! I pump it out of me and then I pump it into my daughter. The irony of it!

On Saturday Brian and I went to visit Kaitlyn's NICU twin, Ethyn (who also is a twin-less twin). This was the first social visit I've had in I don't know how long, and the first time we've taken Kaitly anywhere besides the doctors office. It was soooo nice to spend some time with other parents who totally, completely understand how difficult our life is. We took some pictures, I'll post them soon.

Kaitlyn won't eat anything. It's so frustrating. I think people don't really understand how hard this is. Family, friends, unless you can live a day or two in our lives, it's hard to comprehend the future that we have ahead of us.

I think that one of Kaitlyn's eyes might be becoming "lazy". I've noticed it more and more lately.
She still really avoids looking at us. Sometimes she gets upset when I hold her and would rather be put down alone. I think this could be the beginning of preemie sensitivity issues. She avoids our glaze. She's almost 4 months adjusted, and by this time, normal parents have been rewarded for all of their sleepless nights with months and months of smiles. Not us.

Now, don't get me wrong. I am rewarded just by looking at my sweetie pie, I don't think there's a more beautiful baby anywhere (yes, I'm a proud mama), and my heart melts when I see her.

I'm trying to work, every spare minute I have is spent working if I'm not taking care of Miss K. It's been great getting back into work at least, as it does take my mind off everything and I really love my work.

Some days we she vomits a lot, some days it's hardly at all.

The week before we visited the most amazing place. http://www.georgemark.org This is a respite and hospice home for children here in Northern California. MEDICALLY NEEDY PREEMIE MOMS NOTE: they would love to help you! They have agreed to provide respite care to us for Kaitlyn. This means that we could go away (gasp! go away) for a few days. The place was absolutely amazing and is the only one like it in the entire US. It's about 35 miles from our house. Amazing, amazing wonderful place. I started tearing up in their beautiful chapel, (as well as a few other times when I was there). Just knowing I could (and was allowed) to take a break. For me? Wow. Thinking back of my ordeal, starting back in July - I guess this is the sacrifice we make for motherhood? I just never expected it to be so hard.

Please spread the word about the George Mark home. They are there to help! I told them about all my on-line preemie friends and they told me to spread the word! I'll probably put this again in a separate post.

We are supposedly getting nursing care to help us starting next month. Our insurance only covers it for a limited number of days, so I feel the need to stretch it out as long as possible. I'm about at my wits end (as is Brian) .

The March of Dimes Walk is on Saturday! Thank you alll so much for your amazing generosity in supporting us. We've raised almost $1,200! This is the March of Dimes main fund-raiser for the year. If it weren't for MOD, our daughter probably wouldn't be here with us today!

The weather is finally beautiful today!!! Yes, it lifted my spirits, but have I done anything to enjoy it? No.

As I said, random thoughts.

5 comments:

Amy said...

I read about the respite/hospice home in People Magazine a while back. What a beautiful service they provide. I am so glad that it is near you and you may get a chance to get a break now and then. I continue to keep Kaitlyn and you and Brian in my prayers. You are right when you say others have no idea what you are going through on a daily basis. I admire you for the strength you have shown through all the setbacks.

Just wanted you to know I'm still reading and keeping up with you all.

Kim said...

I found your blog through the links on Amy's website and I have finally worked my way through your entire history. What strength and courage you all have--I admire your entire family and my heart goes out to you for what you all have endured these past nine months. Your daughter is a beautiful testament to that strength and courage. I am happy that you have found a place to offer you some respite--you and Brian definitely deserve a break. Be good to yourselves because Kaitlyn deserves it, too. I will keep checking in with you all and praying that things get a little easier for you.

ps. I hear you about the pumping--what a chore! I'm still pumping four times a day for my two--we can commisserate together :)

Scott Furlough said...

Liz,
Thanks for signing our Guestbook. Sarah and I have been going through several emotions since our boys arrived early on Christmas Eve - happy, overwhelmed, confused, and dejected. We find strength and encouragement by learning of other NICU stories. Our son Logan continues to fight and beat the odds every day. We are so looking forward to the day he joins his brother Cooper at home. Your family will be in my thoughts and prayers. As my wife always tells me 'Chin up Buttercup'.

Tonya said...

I know what you mean about thinking others dont really understand what you are going through unless they spend awhile in your shoes. I felt that same way myself.. It's just different when you are going through it then being an outsider looking in. It is great that you found this hospice place that will allow you to take a break when you need it. I imagine it would be very hard for you to leave Kaitlyn even for a little while.. I am still nervous to leave my daughter with anyone.. I need to get out more!! lol

Anonymous said...

Hi- Have you thought about getting your daughter into PT? I put my micropreemie in the week she got home from the NICU and it has done wonders with the strabismus (eye) and SID issues (almost totally gone). If it feels like too much, think of it in a weird way like a break. Someone else is entertaining her and helping her grow for an hour while you watch. Win-win! -E