Monday, March 24, 2008

Monday March 24
10:45 a.m.
I am feeling so good right now. I forfeited one night of pumping for extra sleep. To get 6 hours of sleep straight feels amazing. I haven't had that in awhile, even before Cayman was born. I had become so uncomfortable in the last month of the pregnancy I was fortunate if I could sleep for more than 2 hours at a time. I was becoming so worn down that Mike took my alarm away from me last night and he "made me" sleep till I woke up on my own. I'm so glad he did. I was a bit upset with him actually at first because there is so much going on today that I was afraid I would literally not wake up until late in the day. But he promised me he would wake me up before it got too late. He didn't have to do that though. I did wake up on my own in the mid morning. I feel so much better! Mike always seems to know exactly how to take care of me so perfectly...and now Cayman too!

3:15 p.m.
Occupational Therapy
(O.T.) came up early this morning to work with Cayman on sucking. She wasn't very cooperative I guess. Their plan is to work with her 4-5 days a week. So I'm glad to hear them take a more proactive approach. Daddy and I worked with Cayman today and she was sucking on a pacifier again. I think because it's so new to her it takes patience and time to get her to take the pacifier. O.T. was very busy this morning so they didn't have a lot of time to spend with her.
We met with the car seat safety lady today. There's a certain car seat she recommends for Cayman that will be very supportive for her large head. We can get this at Babies R Us so that's nice. It's expensive but that's what you get when you buy something good, and it's important for Cayman's safety.
Neurosurgery was by today. Cayman's shunt is working great. Her setting is at its lowest and draining the fluid just as it should.
We were given the ok to sit her up now. She's had to lay flat so the fluid wouldn't drain too quickly right away.

4:30 p.m.
The doctor took Cayman's nasal cannula off today to see how well she would breathe completely on her own. She's doing great without it! We're so happy to be able to look at her face without tape or tubes on it!

Cayman had visitors today: my mom, my sister (Madison), and my brother (Tyson)

9:30 p.m.
I suppose random moments of anger are typical and even natural in this kind of situation. I love my baby girl! I think she's perfect just as she is. I just hate that we aren't home with her. Right now we don't have that "picture perfect" family experience. I hate that Cayman has had to go through so much already in the first 2 weeks of her life. I hate that this is only the beginning of more doctor appointments, therapy sessions, evaluations, tests, and more surgeries in her future. I know that she won't know any different. This is her world and it is all she knows. But as her Mom I want so much more for her than this! I don't understand what God has planned, but I am trying to trust and believe that He has plans for her and us...plans to prosper, not to harm, plans to give hope and a future (Jeremiah 29:11). This is definitely not the way I pictured entering parenthood. I feel so angry. I want a chance to get real rest, to hold my baby girl, and not be around medical talk. When we leave the hospital in the evening and come back to the Ronald McDonald house for supper, everyone in the dining room is talking about their children they have in the hospital and what their diagnosis is and all they have been through. I use to feel alone in our world of having a child with birth defects. Here I am surrounded by so many that are in a similar situation as us. Mike and I have talked about going out for dinner some evening just to do something different from this routine and it would be nice to enjoy a meal without hearing any hospital/medical talk. We just want to sit at home, the three of us, cuddled up on the couch watching TV...relaxing and feeling like life is normal again.

13 Showin' Comment Love:

Donald, Lisa, and Co. said...

Sleep....what a wonderful thing. I am glad that you got some :)

I had a question: Do you know why they had to make such a large incision for Cayman's shunt? At first when I saw the pictures I figured it was because her head size was larger than Elisabeth's, but that didn't seem like it should make a difference, because the shunt is still the same size.
Elisabeth's incision was a straight 1 inch cut and looked quite different from the one that they did on Cayman.
Just curious....
Have a great day :)

Jennifer said...

Aren't we glad God gives us husbands that know exactly how to take care of us?? I'm glad you got some extra shut eye!!

Beth said...

Sleep can be a wonderful thing! Glad you are feeling a bit refreshed!

Thinking of you all!

Grandma S said...

It is so encouraging seeing Cayman's improvement from day to day. What an incredible little girl! She is so lucky to have you two as parents. The love you two have for her and each other is so strong. I can't wait to hold her and spoil her myself.

qwsxbkphyytwwll4a--from Sidney

Donald, Lisa, and Co. said...

I LOVE this picture of her. Blue is her color!
She looks absolutely angelic and peaceful. I think she is enjoying having all the tubes and bandages off too!

Anonymous said...

oh guys, this makes me just tear up! Cayman is doing so well and making everyone proud! We are loving the pictures of her being so alert and without the tubes. What a little miracle she has been!! Reading all this GREAT news is honestly getting us through these past few days......after I read them, I always send Nicholas a message, "but on a positive note!!" and tell him all about her!! We cannot wait til you guys all get to come home and maybe then once things settle down for u guys maybe we can get together again as we had planned!! We are still praying for you guys and for Cayman!!!!! Love ya!
Valerie and Nicholas

Grandma :o) said...

Does the new grandma get to babysit when you two go out with Val & Nick? :o) At least while you eat....Give Cayman kisses from me.... XOXOXOXOXOXO

samantha said...

YAY!! She is so adorable!! Aunt Sam wants to babysit too!! hehe :):)

Karen said...

I love this picture of her! She is such a doll. I wish I could be there to hold you up, but please know that I am doing that for you in prayer many times each day. God DOES have blessings in store for you, Mike and Cayman. Watch and wait for them! Give her a kiss from me please.

Shannon said...

I'm so glad you got a chance to rest a little "extra" and that your hubby is back with his girls. The picture of Cayman is so precious...she looks so peaceful, and I love being able to see her face without the tubes and tape too! She looks so good, not at all sick...I know she must be so strong. I'm praying that the doctors/medical teams can get all their notes together and be vigilant to do the very best for Cayman, introducing all the things she's ready to try and noticing the things she's already doing. It must be exhausting going back and forth to the hospital and not having the opportunity to get into a "normal" will come soon. Jeremiah 29:11 is one of my favorite verses...also Is. 40:28-31. I love that it's ok for us to get tired and that HE never does, and that His power is perfected in our weakness (2 Cor. 12:9-10) Prayers for your encouragement and perseverance, for little Cayman to continue to thrive, and for some rest and peace for all of you.

Tharker said...

I haven't read your blog in a few days, and tonight I had the time to read back through the last several posts.

I am so glad that your husband had the wisdom to "make you" sleep. Isn't it amazing how a solid bout of sleep can recharge us? As a mother, this will be the key to a good day.

I love the pictures of your sweet baby Cayman. What a beautiful little girl you and your husband have created together. She is absolutely beautiful, and she is perfect. I am so happy for her that she is doing so well without her tubes and oxygen. She is well on her way to showing everyone just how tough she is!

I was so touched by your last entry tonight. It is so hard to see your child hurting or struggling, and not understand why. This is definitely the beginning of many doctor visits, and appointments, and it may never feel like normal again. I felt the same way when we found out about Jake's birth defects. But something that a friend said to me will always stick with me. She told me that even though things may never feel normal again, that we will find a new normal. I had never thought of it that way. A new normal. And a new normal has actually changed several times, but I have been amazed to see how much stronger we as a family become each time that a new normal has begun.

I'm sorry to go on for so long. My heart just goes out to you right now. I got to the point where I hated going to any hospital. It is hard, but clearly you have faith in God, and that faith makes our burdens seem light enough so that we can bare them.

Thank you again for sharing your thoughts through this journey with us. Even those of us who don't know you ;)

Kacey Bode said...

Moments of anger are totally expected. I had them and still do and have not had to go through the medical stuff that you have. When I first had Ella I was devistated, overwhelmed, sad, angry, you name it, this is not how things are supposed to be. People would tell me "God gives special babies to special moms," and "God doesn't give you more than you can handle." Honestly I wanted to strangle people when they told me this. BUT, in time I began to see what they were talking about, not to say that I think I am a special mom but Ella is definetly a special baby and Cayman is too. I know that you know what a gift she is and how truly blessed we are as mommies to these cuties. I still 18 months later have the "why" moments, "why Ella?" "why does her life have to be harder than a 'typical' baby?" and it's true that she will never know anything different. All our girls need to know is that they are loved, and everything else will fall into place. God has special plans for Cayman and she will teach the world great things.

Sorry to ramble, I just know how you are feeling. Take care, get more sleep :) and give Cayman a kiss from me and Ella!!!

Donald, Lisa, and Co. said...

It's quite understandable to be angry.....and quite normal. You have every right to vent, and to wonder "why me?".

Someday your thoughts of cuddling on the couch with your sweet family will become reality. And in that moment you can rest with the simple peace that you have been strong, that you have provided the best possible care for your sweet little Cayman, and that you have created a beautiful child who has known nothing but love.

I hope you get to take her home soon and really begin life as a new little family.