Does it surprise you to know that Emily is still in the hospital?
She'll be there at least another week.
We're waiting to see if her little body works like it should.
The little miss was born with an 'infection' in the lining of her bowels/intestines.
Specifically the infection is air bubbles that are only seen through an x-ray.
If left untreated the infection could cause the intestines to 'die', causing life long problems.
Her first surgery was postponed by several days until they were confident her infection had cleared up.
While Emily was back in the hospital because of the infection in her sternum , the doctors saw signs of a repeat infection in her intestines.
The treatment is simple: bowel rest. They keep her stomach and intestines empty for 7 days, and then reintroduce milk at a very slow rate and pace. The entire process increased Emily's stay by 2 weeks.
Emily had been home for a week when she started throwing up, and having diarrhea. I've mentioned several times how traumatic it was for all three of us. We didn't sleep at night for fear of Emily choking. There were several times we would hear Emily whimper and get up to find her little face covered in bile.
The morning we took Emily back to the hospital we found blood in her diaper.
Her x-rays showed no sign of the infection but they stopped her milk just in case. Her symptoms disappeared almost immediately. Every day for three or four days they did an x-ray and every day her
x-ray looked good. They started Emily on milk again, a little bit faster and at a higher volume. On the third day her symptoms returned and they stopped all feeds.
Emily is kept filled with nutrients and lipids (fats) through an IV in her arm and continues to gain weight.
She has gone so long without food in her stomach she no longer feels hunger.
Emily's doctors agreed that they needed to extend her treatment period and so she went 10 days without milk.
In that time they ran some tests and found nothing anatomically wrong with her intestines.
They are confident that this infection has nothing to do with her weakened immune system.
And it has nothing to do with an intolerance for milk. Emily's formula has neither dairy nor soy proteins and is the most easily digestible formula there is.
We have been told that we may just have to 'slog' through this until Emily has her next surgery, when the doctors are hopeful Emily's body will no longer have this problem.
Day 10 was yesterday.
They put a feeding tube back in and started Emily out at one mL of milk an hour. They raise the volume by one mL every 12 hours.
The goal is to reach 24 mLs an hour.
Clearly we're going to be in the hospital a while.
Seeing the feeding tube makes me sick to my stomach.
I have mini panic attacks at the thought of Emily coming home and getting sick again.
I have slightly larger panic attacks at the thought of Emily not ever being able to tolerate food.
I cry every day at least once because of the worry I feel.
And every day I feel guilty at the relief I feel knowing that Emily is in the hospital, where I know if she throws up she'll be okay.
Last week Emily's doctor told us they lost a baby to this same infection two months ago.
That little lady of mine is so patient through it all.
She tolerates the daily shots, the daily x-rays, the tube being stuffed down her nose...and she does it mostly without crying.
She sleeps through the night and is rarely fussy.
She smiles at the nurses and doctors, and she watches football with her daddy.
Really, you should have seen her today. Emily's eyes were glued to the football game her daddy was watching.
She does everything her physical therapist puts her through, and holds her head up for as long as she can.
And those eyes of hers are always watching...always observing...she doesn't miss a thing.
Emily has had two blessings of healing - I believe that some men, Emily's daddy and grandpa among them, have been given the authority to act in God's name and give blessings of healing and comfort. In both of these blessings, Emily has been promised that her body would be healed - not of her heart condition - but of her gut issues.
I have faith that God will honor those blessings...and I'm doing my best to have faith in His timing.
Emily's life...her health...they are almost completely out of my control, and the ONLY thing I can do is pray, and trust that God will hear and answer my prayers.
It's the hardest thing I've ever had to do. And it's exhausting in so many ways.
There have been times when people have asked me why - why is Emily having to go through all of this?
There have been times when I have asked why.
Everywhere I go there are healthy babies and when I see them I think of my sweet baby, who has spent six out of the last seven weeks of her life in the hospital.
It's really hard not to ask why.
I always stop myself.
Asking that question isn't going to change anything, and it will probably only make things harder.
Instead I say a quiet prayer asking for the strength to get through this...asking for an increase in faith and trust...and hope.
And in the end, I always give thanks for my Emily ... I love that little girl with all of my heart.