Battle with Right-Sided Congenital Diaphragmatic Hernia (CDH)


Daisypath Anniversary tickers

Daisypath - Personal pictureDaisypath Anniversary tickers

Sunday, August 19, 2012

Update on us

I wanted to add pics of Whitney but for some reason Blogger isn't working!  So sorry this is just a boring update with out pic's of our princess.

It's been a pretty good week here in our new home!  The only things left to unpack is my bathroom stuff and all the picture frames.  Thomas has been busy preparing for school and learning about new health insurance.  I've been scheduling many dr. appointments for Whitney and finding a compounding pharmacy and trying to get an OB/GYN appt. for myself. Guess I missed my check up for the month of Aug.  but that's ok!  I feel like baby boy Cameron is doing great and so am I. I'm 27 weeks pregnant and already having a hard time sleeping at night! My restless leg syndrome is getting worse.  Some nights aren't too bad but other nights it last for hours and I just can't fall asleep even though I'm exhausted.  My hips will hurt so I turn over, then my ribs will hurt so I turn back over again, then I'll have reflux and have to sit up, then Whitney will be crying or her feeding pump will be beeping.  It's crazy!  Luckily I have a great husband who helps out with Whitney and gets me things and lets me sleep in!  I'm thinking I'll really miss him when he's going to school all day!  Which is really soon, like the next Monday.  But I'm use to him being gone a lot, pretty much our whole marriage he's worked full time and had several classes at night time.  I'm excited for him to start school and be a full time student!  Anyway, so the other night I decided to sleep in my new rocking chair.  Thomas set up blankets and my snuggle pillow and I slept pretty well!  It pretty much relieved all of my complaints!  I wish it reclined back a little bit more but that's ok.  I actually had a dream about how I wanted to sleep in it again and how comfy I was!

 But last night Whitney woke up.  She said tissue, then started screaming.  I was so comfy I couldn't get up, haha, and tired of course, but soon Thomas came in to check on her.  He gave her a tissue and changed her diaper.  Whitney really wanted out of her crib but we said no, go to sleep please.  He left but Whitney continued to cry for a while and eventually she calmed down.  Then she starts messing with her feeding pump until it started beeping.  So I had to get up to fix it and change her stinky diaper.  She wanted out so badly and wouldn't stop crying, so I said she could sleep with me.  Bad idea.  She and I were so uncomfortable on the rocking chair together.  Whitney was squishing my belly the whole time.  After about an hour I put her back in her crib and went to my bed, while she cried some more.  Uggh,  needless to say, we slept in late this morning.  I cannot imagine this girl in a toddler bed any time soon!  I'm just glad she can't climb out of her crib! 

Then I slept in my bed and Whitney did just fine.  The next night I slept on my rocking chair again and Whitney woke up at like 6am wanting to get out.  I just gave her a toy and left the room.  I think I wake her up with all my moving.  It weird though because she has slept in the same room as us since forever and usually sleept through the night just fine. 
Last night I made a peanut butter oatmeal banana bar thing I found on pinterest.  It was interesting, not very sweet and had the texture of a muffin.  But just add a bit of Nutella on top and it's delicious! It was really easy to make though and turned out really well!  I froze some watermelon and am planning on making this watermelon slushy too sometime soon.   So we usually try to find something to do outside the house each day.  It may be grocery shopping, swimming, or just going on a walk to the mail box and dumpster.  We went to the DMV one day to get our new license and registration but the computers were down.  So we went to JCPenny and just hung out.  We also drove to a mall that was obviously closed. Our ward is still great.  Thomas thinks that Whitney will do fine in nursery by her self and I'm like, NO WAY!  With 15 wild crazy kids in there and only 2-3 adults, yeah. I don't intervene  too often, just during snack time and helping clean up.  Plus uh Whitney has special needs and I don't expect the leaders to be able to take or of her if something were to happen.  She may vomit or her pump may beep or her tube could get pulled out, heck I'm even afraid she'll be trampled the way these kids are always running around. Plus she can't talk and dosen't communicate well with others. I don't really like their "singing time" because they hardly ever sing primary songs!  She just plays a weird CD and doesn't have any props to sing with.  So basically I don't get to go to Relief Society because Thomas won't stay in nursery with her.  But in a few months anyways I'll have a sweet newborn and since it's during RSV/flu season,  we'll be staying home from church for many months.  Just like we have been the past 2 RSV seasons.  I'm not risking my fragile kids getting a horrible flu or even being hospitalized with RSV.  I know I may sound way to over protective but hey, all of my CDH survivor mommas are too so I'm not alone. 


Well, hopefully my next blog update will be full of pictures!












No comments:

Post a Comment