Wednesday, April 20, 2011

My reality

First off, I am writing this from my iPad, with one hand, while I nurse. There are going to be typos. Please deal with it however you can.

Most of you probably think we are sitting quietly at home in newborn bliss, sniffing our yummy baby and memorizing his every tiny feature. There is a little of that going on, and for that I'm grateful. But our reality is much more stressful.

I don't want this post to be all about complaining. But I do want to paint an accurate picture. We've been home since Friday afternoon. Since then, here's how things have gone.

Saturday we had a visit from our home nurse. Braxton's feeding tube had come out the night before, and we were waiting to have the nurse put it in for us (we fed with breast and bottle in the meantime). Putting the tube in was very traumatic. I'll leave it at that. Braxton's weight had gone down from 7,9 at discharge to 7,1. We were advised to increase his feeding supplements. His abdomen measured 33 cm, which is the high side of normal.

By Saturday night, Brian was noticing Braxton's abdomen seemed tight. By Sunday afternoon Braxton was measuring 35-36 cm (he was 36 cm when he was last admitted). We talked to the surgeon on the phone, made note of what to watch out for, and agreed to go in Monday.

Monday at the surgeon's office, weight was up to 7,5 so we felt better about that. The dr agreed that Braxton was very distended but decided that unless he got worse or wasn't keeping milk down, he didn't need to be admitted. He gave us instructions to be more aggressive with our dilation/enema routine, to try and get things moving.

It's now Wednesday, and things haven't gotten worse but they're not much better, either. Tomorrow we go in to see the surgeon again, and to hopefully do the biopsy that will confirm or rule out hirschsprung's disease. I am praying and believing for ruling it out.

In the meantime, yesterday we had a follow up apt with the pediatrician. Today we have a visit from occupational therapy. We also have almost daily visits from norco, bringing us medical supplies. Plus twice-weekly visits from home nursing. Plus visits from IT, the state-run infant-toddler therapy program. Plus I've been scheduling cardiologist appointments and hearing tests. Plus all the paperwork. I have a giant binder that I take wherever Braxton goes that's full of his medical information.

Things have been really hard on me emotionally. I hate that my baby has to go through all this. I hate that he is constantly tethered to oxygen. I hate that I can't just pick him up and carry him with me around the house or outside. I miss my kids. The three Middles have been gone for 12 days. They come home tonight, but I am also worried about how I will take care of everyone. Braxton takes up at least 1 1/2 hours of my time every three hours.

I am trying to do things for myself. I am getting a little exercise everyday, drinking tea, and clinging to a few scripture verses. I am hanging in there. But it's hard.

12 comments:

Angela said...

Prayers for you......Braxton is beautiful!

Emily B. said...

praying for you... and your son.... and your family... I'm sorry this is so hard right now...

Crystal said...

Oh Shana. As I read your post my heart just aches for you. I remember feeling the exact same way when everything happened with Konnor. It's so overwhelming and takes such a toll on not only you but the whole family. Its hard but as the days and months go by it will get a little easier and you will settle into a routine that will keep you sane. Please know that we are here to help in ANY way!!!! Thoughts and prayers for all of you!!!

shell said...

was praying for you this am.
wish i lived close enough to be of physical help!
thanks for being real.

michelle mc conomy said...

Have followed your blog since adopting our HIV+daughter from Ethiopia in 2007.I have a 20 yr old nephew with Down's he had a heart defect which needed surgery and Hirhbrungs disease. Once all that was taken care of he has always been fine, no more problems.We will pray for you and your family.

Anonymous said...

Praying, praying. Thinking of your family often.
Love, Rachel

Becky said...

My prayers are with you.

Jen said...

First, thank you for the photo! Braxton is exquisite, beautifully and wonderfully made.

Second, I can't begin to imagine what you're going through and experiencing. 12 days without the Middles alone is a stretch. Add on everything else. I know I'm far away, but if I can help - if I can meet any need, I will. Just ask. I love you so much. And all of your blessed babies. Thank you for this post.

Third, Happy Birthday! My birthday wish for you is that you get a bubble bath - but not a quiet one! One that you laugh during as you hear your kids filling your house! I pray that you also get a good nap, a run/ride/swim (or all three!), and a quality snuggle with each of your babes (all 5!!) and your beloved hubby, so you can enter this next year with the greatest foundation - with faith, touched by laughter, engulfed in love, and with a strong mind and body - for this is going to be a remarkable year!

Christi said...

*hugs*

Mama of 5 said...

Through many hard medical times with our son we found it comforting to read Psalms. You are doing a great job. You have much on your plate and can only do it a bit at at time.
Becky

JB said...

wow Shana that is a lot...actually beyond a lot. praying for your sweet family. your an amazing mom, there will be grace enough for you during this time.
ps: i love your transparency it's amazing.

Renee said...

Just stopping by to say you are in my thoughts and prayers!

Love you!

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