Friday, December 28, 2007

Friday, December 28, 2007 - Update

Well, her Synagis shot is to be shipped on Jan 2nd and should arrive on Jan 3rd at our pediatrician’s office. Of course, that’s also the day of her next eye exam. I’d really like her to have the shot before going into a public place again, but that would be one awful day for her. I don’t know. . .as if life hasn’t been tough enough. . . .why do people have to make it that more stressful? If I don’t come out of this whole thing without some kind of obsessive/compulsive/anxiety disorder it’ll be a miracle. I wash and Purell my hands so much that they are cracked and bleeding. Anyway, we checked into a home nursing agency coming to our home to do it, but at this point I don’t want anything else to hold it up. They pay 90% after we meet our deductible. We’ve met our deductible about 1000 times over this year, but unfortunately next week is a new year. Our next worry is that Olivia hasn’t stooled in almost 48 hours. We’re talking about a girl who would have 6-7 dirty diapers in a day. A few days ago, the amount decreased somewhat and now it’s come to a standstill. I’m planning on going to the store to get some karo syrup to add to some of her bottles? I thought breast milk was a natural laxative and I’m still pumping breast milk for her (although it’s getting increasingly difficult.) Of course, I’m terrified to go into public places myself and bring something home to Olivia. . .the whole OCD/anxiety thing again.

She is doing better and seems a lot happier today after having her vaccinations yesterday. She wasn’t too happy yesterday. We received her blood work results, but haven’t talked to the doctor about them. Her alk/phos is still in the 800s. Her hematocrit is low again which means she is bordering on anemia again. This has been the reason for so many of her transfusions. What do they do once a baby is discharged and still has the problem? Add iron? Of course, that won’t help her stooling issues and I believe that the Neosure has iron in it. For some reason, they didn’t have the GGT results, which is the liver enzyme that we were worried about.

Sorry. . no pictures again. It’s been a stressful couple of days. Ryan let me sleep tonight until about 8 pm which I desperately needed. This lack of sleep isn’t making things any better. She would probably sleep through the night if we let her, but we’re all too concerned about making sure she gets enough calories each day. I don’t know when we’ll make that transition. Please continue to keep her in your prayers


Anonymous said...

Wow! Jodi and Ryan, I admire your determination. Everyday I am amazed by your efforts, it's incredible. Hopefully you both will be able to get your rest up before long.
I'm glad that her shot is on its way, and I can understand you not wanting to take her in to get it. That's crazy!
I'm so glad that she is acting happier, though, I would be a grouch too if I had 50 shots. So I don't blame her.
Hopefully her GGT results will come back in your favor. I can't imagine your anticipation, knowing that if they don't, it's one more thing on your plate, but not only that. It's one more thing Livi can say she BEAT!
We're also praying for another successful eye exam tomorrow.
Love you all!
Stay Strong,

Anonymous said...

I'm glad to hear the RSV shot is coming. I'm sorry to hear about the stooling problems. Did Olivia ever has suppositories in the NICU? We learned how to give them at home if needed, but hated to do it! Does your pediatrician have an on-call line to ask questions? We called all the time! Also, your doctor should be able to let you know how long you can let Olivia sleep at night. Hopefully, they say she can go a little longer for your sleep sake :-)

And don't feel bad if you can't keep up the pumping! It gets so hard when they come home. There is just SO much to do to take care of your family. Don't beat yourself up too much, you are the best mother!

And I completely understand the OCD, handwashing dilemma. I still have to tell myself I don't have constantly wash. If I start thinking about all the germs I can get myself really freaked out. I read in a NICU book once that if you wash your hands when you come in the house, after using the restroom, blowing your nose, changing diapers, and handling certain foods, then you shouldn't worry and not to let handwashing become an obsession. That has been my self-check list to keep me from getting obsessed.

We'll be praying for the best with the eye exam and RSV shot.

23 Weekers said...

Hey there! Hope you had a Merry Christmas. Just wanted to let you know that we have also struggled with constipation. I have found that using the pre-mixed formula helps vs the powder. It costs a bit more, but is worth it. Neosure does sell this in 32 oz bottles. A can of powder makes about 85 oz. So, it takes a little over 2 bottles to equal a can of powder. The powder is about $15/can and the pre-mix is about $7/bottle. So, not too much more. In the hospital, they use the pre-mixed and at home we typically go for the powder. You might give that a try. The dark karo is supposed to help, but seems to give my Carver a tummy ache.

BTW...I don't take either of my babies out of the house, either. We only go out for doctor appts. You're not crazy. You are a good parent. I also keep a blanket over my babies car seats until I am in a room alone. People always want to peak at a baby and they just walk right up and bend over and breath on them. This stops that before it ever happens. It might sound crazy, but one sneeze and our babies can end up back in the ICU.

Take care,
Shanon Woolley