Saturday, October 13, 2007

Like milk through the feeding tube...so are the days of our lives

Julianne has decided to take the long and winding road as far as eating is concerned.  She didn't do well at all yesterday with her feedings.  In fact, all but one of them she threw up.  Finally they put her on continuous feeds (which they didn't want to do originally because it was just going backwards) just to get some nutrition in her since she'd lost everything else.  Well, she threw that up too. :(  Poor Julianne, I felt so bad for her.  I was exhausted from being up with her as she vomited all night the night before.  Kent volunteered to stay with Julianne at the hospital while I went back to the Devon Nicole House to get some rest.  I took him up on the offer and even though it was difficult to leave her, I went to get some sleep. 

She seemed to have sucked in a little bit of the vomit and so they did a chest x-ray, which came back fine. She was put on IV fluids overnight because she needed something in her body.

She was up all night!  She just couldn't be settled.  Julianne would sleep for maybe 5 minutes then wake up crying.  Both Julianne and her Daddy got next to no sleep last night.  I know it was a hard night for both of them.

This morning they started Julianne on clear fluids...Pedialyte.  She did fine with that.  Since she held that down they put her on a continuous feed of just milk...no additional calories added.  Right now they're thinking she may be allergic to the formula that was being used to add the additional calories or the calories may have been added too quick.

When I got in this morning she still couldn't be consoled.  She'd dose off, then wake up crying again.  We were all thinking it was just because she had nothing in her belly.  However, after a hour of getting milk through the feeding tube, I finally told the nurse I thought she might be in pain because she's got food in her belly and she's never been like this before.  The nurse gave Julianne her dose of Methadone, Tylenol, Mylacon and Reglen.  It took about 45 minutes but she finally settled down.  I know she was probably as relieved as we were to get some sleep. 

After coming back from a nap at the Devon Nicole House, Kent reminded me that she threw  up right after getting her medications last night.  So, she probably completely lost her Methadone dose.  She' s not on much Methadone anymore, but the nurse said that little bit makes a BIG difference.  Weaning her off of it too quick can make her pretty upset. 

So, Julianne is now catching up on her sleep.  It's about 7:00 PM here and she's been asleep since around 2:30.  Its such a relief to see her asleep with a full belly. 

The plan now is to keep her on continuous feeds this weekend and try to give her some Bolus (feeds in intervals...not continuous) on Monday.  Tomorrow she has another chest x-ray and more blood work.

Thank you for your continued prayers.  Considering what she's been through already and what other babies we know are going through the feeding problem doesn't seem so huge.

**Update** Just as I'm posting this...she threw up again.  It was A LOT LESS than before though.  So maybe its normal.  We'll find out.


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10 comments:

Anonymous said...

It could be just her adjusting to everything. Travis had a huge problem with formula and finally had to be put on something special. He'd cry non stop. It's so hard to see your little hurting and knowing there's nothing you can do for them.

She will get past this. When they figure out the milk issue and see what she needs, it'll be smooth sailing ahead.

We continue to keep you all in our prayers. We looking forward to seeing all of you when you-all arrive home.

Hugs & kisses

A. Stac

Anonymous said...

We continue to keep y'all and Julianne in our prayers. We will continue to pray for sleep and rest for all of you. Poor Julianne, we will pray she will be comfortable, and able to tolerate her food. I know it's not the same, but several of my nieces and nephews all had major problems with their formulas. All of them had to be put on reflux med. and some type of special formula. My sister-in-laws all told me they would just scream, constantly. So we are all praying for you and Julianne!!
love,
erin

Mark said...

I'm so sorry for this....

May God heal the little dear one...and provide additional relief for her parents.

mdf

Anonymous said...

Don't forget, she has McConnell blood - she'll figure out the eating thing.

I'll continue to pray for comfort and rest for baby and parents.

Love you all
NSG Aunt Sarah

Naomi said...

Poor Baby ...
Unfortunately this could also be a part of the "normal" problems of the "newborn" life.
Alot of babies have trouble in the beginning especially with formula.

Being the Mother of a "colicky" baby I can feel ya'lls pain.
Sometimes Crystal is still colicky ha ha . Thats not fair as she is not reading this.

Each of you get some sleep when you can. I know this can be hard though. But taking turns is the best thing you can do as you each need your rest to be able to be there for her.

Well I don't want to sound like a know it all - I don't mean to.
As long as her heart and everything else is well I think you both are so strong for what you have endured so far.
This is something she will get past in what time is "her time".

We love you all.

Aunt Naomi

PS Julianne Uncle Alan says "WORD" to your mother.

suzette said...

I am just catching up on your blog since I was recently unable to access it.

I am sorry to hear of her feeding problems but just as you said I am sure you would rather this than the other issues.

I was happy to see the recent pictures-she is sooo cute. She looks so sweet in her outfits.

Jessica good thinking on your part in regard to the medication and feeding issues. Maybe you will want to be a nurse after all this :).

I am sorry that you have all had a lack of sleep I hope it gets better for you soon.

Even though I have been out of touch I have continued to pray for you all.

I pray that you all will be able to come back to the comfort of your own home soon.

Love you all very much
Aunt\Great Aunt Suzette

suzette said...

PS: While I was in Georgia I kept the nose to nose picture of Julianne and Jessica on my nightstand and prayed everytime I saw it.

Love Aunt Suzette

Woman on the Edge said...

Praying for you and Julianne. That girl's been through so much!! I remember my dad after his heart surgery HATED everything about food. All that surgery and all those meds are hard on ANYBODY's system, much less a brand new one! Our hearts are with you. We miss you!

Praying that the food issue will be resolved soon. We love you,

Becky, Matthew, Mackenzie and Levi

marilyn englert said...

We will continue to pray for all of you. I will be in touch with your mom, Jessica. She is such a wonderful person. We kind of connected in Boston. If you get by to see Jason and Denyse, give them a great big hug for me. Gosh, I miss them so much and can't wait to get my Hannah in my arms again. I know Julianne's grandparents feel the same about all of you. We hope and pray ya'll come home soon with smiling faces and happy, healthy babies! Love, Hannah's Mimi(Marilyn)

Jen Steele said...

If it is any consolation, feeding problems are very common with HLHS babies. To not have feeding problems is by far the exception, so don't worry. It is often just part and parcel of a very complicated first few years for these kids.

Giac had a miserable first year with feeds (couldn't tolerate a single formula after my milk ran dry, had a GT put in, was on continuous feeds for months...). He's still tube fed at nearly 3 years old -- tho improving in his oral intake ever so surely.

So, don't worry, just keep in mind that this is a marathon, not a sprint, and do your best to make your own observations of what does and doesn't work for her.

In my experience, I have been the only one able to do that for Giac. In fact, getting him on his feet tummy wise took going AWOL on doctors' orders re: formula - tho after the fact they all agreed he was better, none of the docs would ever have recommended my found solution -- goat milk (and prevacid and miralax).

Anyway, the feeding thing has been our #1 day to day battle, but in the scope of things, totally overcomeable. Did I mention that feeding issues kept him in the hospital a whole month after he'd recouped from the Norwood???

Anyway, glad to see she is making good progress on the heart issues, which are paramount.

j