Post Hospital Stay 3/30/12

After many tests:

• blood work
• abdominal ultrasound
• head CT
• upper GI
• more blood work & cultures
• echo
• complete skeletal scan
• physical therapy 2x

The doctors decided that Sophia has colitis, an inflammation of the colon (and shedding of its protective inner layer), due to milk and soy protein allergies.  They are keeping her on Neocate formula for this and they don't expect her to outgrow it by 1yr like they thought. 

She has bad GERD (reflux). They watched her GI and on her "bad" reflux times she refluxed all the way to her ears! So they added a 2nd medicine and so far, SO GOOD! It has been helping. She is on 1 acid reducer 2x a day and 1 acid neutralizer 2x a day.

She also has a kidney & UT infection. They were worried it was sepsis but said they got it under control in time. She was on IV antibiotics for 48 hours and will be on oral antibiotics for 14 days. At the 14 day mark they will do an ultrasound to check for scarring and to make sure the infection is gone. She has to lay low for 2 weeks to heal, and to ensure she doesn't get a secondary infection. 

Because Sophia is on such special formula, which doesn't have vitamins (like vitamin d from milk), she is deficient. So she has to be on vitamins 2x daily for the next 8 months. 

We are going to have to print off a schedule/checklist for every day!

We are praising God that she is doing so well now and that we have a diagnosis!

We want to thank each and every person for everything they did, even if it was "just" pray. We are thankful for such love & support. 

Hospital Stay 3/29/12

You know when you watch a movie or show and the person is receiving bad news…1 of two things happens….1. the phone slips out of their hand and bounces to the floor in slow motion or 2. They can’t hear anything after the initial shock of whatever it was they were told.

It’s true.

When I received the phone call that Sophie had direct admit orders to the hospital and they wanted for us to pack for a long stay… everything went into slow motion. I immediately tried to think of questions but when his answer was it was best to come in. I shut down. I started crying, really really crying. I could hardly breathe. I kept dry heaving. I told PJ as much as I could. My Mom & Sarah came over, Sarah stayed with Phillip & Hannah and my Mom, PJ, Sophie and I went up to the hospital and my Dad met us there.

Rewinding a little bit to Monday. We drove to UofM for Sophia’s GI appointment. We saw the nurse practitioner and she basically told us that she was fine and her family doctor could take care of everything.

Tuesday evening we received a phone call that they had an opening with Sparrow GI and asked if we wanted it. After much debate we decided a 2^nd opinion (4^th counting  family doctors) couldn’t hurt.

Wednesday afternoon at 2pm we arrived for her appointment. Within minutes of the doctor walking into the room he started spewing things like webbed intestine, neurological symptoms and surgery. He ordered LOTS of blood work, Upper GI and head CT for tumor and/or brain malformation. We did the blood work and were just waiting for insurance authorization for the other 2 tests. I left there in a slump, not knowing what was really going on. My heart hurt and I was angry that it took this long for "them" to listen. I was scared.

We got home about 4pm and got settled in. My Mom was watching Phillip & Hannah while we went to the GI doctor. She took Phillip home with her. It wasn’t a half hour later and the GI doctors number shown on my phone. I answered it and that’s when he said something was wrong.

It is still fuzzy. I was terrified, my stomach felt like it had fallen to my toes. He started talking about sepsis, metabolic disorders and that’s when he told us to head straight to the hospital.

When we got here there was a team waiting.

We don’t have many answers yet. As I write this she just getting done having her Upper GI. She had her head ct which came back normal, blood work showed infection so they started her on antibiotics, xray of her abdomen (still not sure what they said about that) and still have more scheduled.

I keep praying. That’s all I do every second. I am feeling lost, scared and hopeless. I finally figured it out though, why PJ (or I) haven’t gotten a job, we were supposed to be here for this. I am just angry that it took this long for someone to listen.

Keep praying for my baby girl. Pray for my other 2, who don’t understand. Pray for strength for PJ and I. Pray for guidance of the doctors to do the right tests to find out what’s wrong. Just pray.

3/22/12

As this week is coming to an end I am finding myself relieved. This has been one stressful week! Not that this week ending is going to be some magic solution, but I am hoping that this coming Monday will be the answer to our prayers!

It started getting bad on Saturday night. We had noticed her medication not working as well as it should have been. After researching online and talking to the pharmacist, I found out that because her medication is compounded that it loses effectiveness after 7-10 days and really needs to be filled every 2 weeks not once a month. Consequently her tummy was getting extra acid and causing her more and more discomfort.

By Sunday night it was unbearable, for her and us! She was screaming in pain and ceased eating because of it. What little we could get her to take she was projectile vomiting it right back up at us before she had time to absorb any nutrients. It was the worst feeling, seeing her in pain and not being able to help her in any way. By 3am she and I were both exhausted and crying. PJ took over and I went to bed.

By 9am Monday morning it had been 12 hours since Sophie had kept ANYTHING down and hadn’t had any wet diapers. PJ and I were at our wits end. I called the doctor’s office and spoke to the nurse, desperate for any help she could give. We had to take Sophie to the office at 2 to be seen. Luckily Jerri agreed to go with me. The doc decided to schedule an ultrasound of Sophie’s belly to see if she has pyloric stenosis. She also TRIPLED Sophie’s medication and ordered it to be filled biweekly. Which in a way is good, because it will STAY effective… but the insurance won’t cover the medication and $40 monthly was a lot and now that it is $40 biweekly, it’s almost undoable. But I can’t see my baby in pain!

Fast forward to this morning and Sophie had her ultrasound. She had to not eat 4 hours prior and they expected her to NOT cry while they performed it. Sigh.

Now all there is left to do is my FAVORITE thing…wait… We should know the results of the ultrasound tomorrow sometime. We are also waiting for Monday, for our trip to the GI doctor. I am losing what little patience I do have; I don’t know how much longer I can stand to see her miserable. I am terrified there is something seriously wrong and the doctors just aren’t catching it.

So for now we wait, and pray, and try to make her comfortable. 

3/3/12

Sophie has continued to have a raw bleeding butt, mucous blood tinged stools, projectile vomiting and FUSSSSSSY.

I finally had enough. I was at the breaking point. I couldn't stand to watch my 2 month old go through such pain! I spent one WHOLE day on the phone trying to stay polite while not crying from frustration. We got Sophie an appointment at a GI doc March 26th. We also saw our pedi and got her 2 prescriptions for her butt and a prescription for a new formula.

We also have a tentative diagnosis (tentative because the GI doc has to agree) MSPI with reflux.

 MSPI: milk soy protein intolerance

It's a whole world that I haven't been in since I was little, too little to know how involved it is. My sister Emily had issues with soy, dairy, egg and gluten etc

The neocate formula is an amino acid formula for babies with allergies. We are currently on day 2 and we have already seen an improvement! Although I didn't realize that the rice cereal we use to thicken the formula for her reflux, contains soy!! So we are switching to a new milk & soy free brand.

So hopefully Sophie is on the mend. I'm looking forward to the GI doc to have some final answers and a diagnosis on paper. But as long as she continues to get better, I don't care how it works out!

Feb 15, 12

Well Sophie has thrown us for a loop!

 She started off exclusively breastfeeding. She developed a mild case of jaundice (my milk hadn't fully come in yet) and they told me to supplement with formula to get rid of her jaundice. She had horrible diarrhea causing a raw, bleeding butt at 1 week old. She also arches her back and screams while eating, stopping to be burped every ounce. We stopped the formula and I continued breastfeeding until 3 weeks old when we switched to Gentlease formula for possible protein sensitivity. Still nothing. Then we switched to soy for lactose intolerance...the diarrhea went away and her butt healed!! But she is still screaming while eating.

We made a doctor appointment and they switched her to the hypoallergenic formula Nutramigen. Now she is spitting up...a lot! She is on a waiting list to be seen by a Pediatric Gastro Dr to figure out the next step because our dr admits she's puzzled...but we are thinking it was silent reflux that turned into full blown reflux with a bout of lactose intolerance thrown in.

I called and talked to our regular doc today and cancelled Sophie's appointment for friday.  Also I called and begged for an appointment for Sophie to see the gastro doc...I am waiting for them to call me back. Plus I'm reading all I can online about reflux and what to do to help.