Back at Home.....

4 days later & we are finally home. We spent all day Monday & Tuesday at the hospital just the 2 of us because Bryan had to go back to work & Sadie had a few things on her calendar. She got to spent Monday with Gigi (Bryan's grandmother) & yesterday with Doc (my Dad). I hear she may have been a little spoiled while I was gone :)

 

Sophie mostly kept to her normal routine. She would play:

 

 

take a nap:

 

 

and eat:

 

 

Thank goodness she liked her crib because she was in there most of the time. I didn't want to put her on the floor to play because I thought it was too dirty, so they brought her toys & when we lifted the sides she could crawl, stand up & cruise around without getting out. And when it was time for her to eat, I removed everything from the crib & let her feed herself. I hate to say it, but she vomited at least half of her meals while we were there so I tried to keep it contained to one area. Let's just say they had to change her sheets multiple times & she got several sponge baths while we were there :)

 

The new medicine we started on Sunday wasn't as effective as we hoped it would be so we started a second medicine to go with it yesterday. We also started another round of food while she was there but her body did not like it:

 

 

I mean who can blame her- broccoli? I don't like that either :)

 

I was kind of frustrated yesterday afternoon. They told me I could stay until today since we started a new medicine, but after talking to 3 different allergists, multiple hospitalists & 2 GI doctors, I quickly realized there was nothing else they could do for her. They have already done every test available at this time. And we have started a couple of new medicines, but unfortunately, there is nothing we can do to treat her. We have basically learned that her body has not physically developed the way it should be. As I talked about the other day, food is getting stuck in her system & has no where to go but come back up. Most babies who have this problem outgrow it by 1, but some don't outgrow it until 2 or 3 & looks like Sophie is one of the late bloomers. It is very similar to the problems we had with Sadie & her dairy allergy, although hers is much more severe. We have been told that she more than likely has food intolerances also that is making the problem worse, but unfortunately since she can't handle anything at this time, we can't identify what those allergies may be. So, the plan is to learn how to live with it. Going forward, she will be on a formula only diet. We still have her on an infant formula but we plan on transitioning her to a toddler formula in the next month or two, slowly as her body can handle it. We will experiment with food every now & then, maybe once a month or so to see how she handles it, but I have been told to expect vomiting for another year or two until her body has fully developed & can handle the digestion. She currently takes medicine for the reflux twice a day but she is taking 2 more medicines (the ones we started at the hospital) 3 times a day. These will help control some of her symptoms but will not eliminate them. Then the tricky part is experimenting with food & medicine until she is older to see if she outgrows these problems. If she hasn't, then we will move forward with additional testing.

 

Needless to say I was a little bummed when we left the hospital. We have been treating her outpatient for over 4 months now & hadn't found a solution, so I was really hoping that her being treated inpatient I would come home with solutions. Obviously we don't have a solution but at least we have a plan & I have come to accept her condition. I realize it is not life threatening but more of an inconvenience. As long as she continues to grow & thrive, we will be happy.

 

One of the benefits of her being hospitalized, is since they now medically classify her as a formula only baby with no food intake, the dietician is working with our insurance to have her formula paid for & shipped directly to me. That would be awesome because that formula ain't cheap :) And honestly, 3 days wasn't too bad. We got to spend some quality time together & at least I feel like I have done everything for her:

 

 

One last thank you to Sherry. She came up last night to bring me Pei Wei (which is so much better than hospital food!) & she helped me pack up & load Sophie in the car while we were discharged:

 

 

We are so thankful we have family close to help out. And to all our friends who have called, texted, e-mailed, offered dinner & help with Sadie - thank you. We are grateful to have friends & family like you in our lives!