Friday, June 5, 2009

Annaliese's Story

I posted this on Facebook the other day, so this may be repeated information for some of you. For those of you who don't know about Annaliese's medical issues, this will give you the background.

I've had several people ask me to explain what happened to Annaliese, so I figured I'll just write one note and whomever is interested can read it. :) *disclaimer - this will reference bodily functions a lot, so if you don't want to read about that, click away from here!*

When she was born in 2002, Annaliese appeared to be a perfectly normal newborn. The only problem was that she had some difficulty with nursing. She just wouldn't eat. And she wouldn't poop. The pediatrician from the practice our kids are patients at was doing rounds and discovered that she had a meconium plug at that time. He got it out (don't try to envision's not pretty) and we thought that would be the end of it. She immediately started nursing better. There was nothing making her feel 'full', so she was hungry again. We were discharged and went home to enjoy life with our new little girl and her almost-2-year-old-brother Luke.

Within the next week, the eating problems popped up again and she started vomiting after every feeding. And not just spitting up. I mean projectile, across the room, waiting for her head to start spinning around vomit. I took her to the doctor and they said it was probably just a stomach bug (it was March, after all) and to see how she did through the weekend. We went out for dinner with some friends that night and brought her along with us. While we were there, she started vomiting again, only this time it was green...bile. I wasn't about to call the pediatrician's office again, so we headed straight to the ER. We waited there for several hours and were finally admitted. That began a 2 week hospitalization for Annaliese. Several tests were done, and she was unable to eat. She had a tube down her nose and into her stomach, and received all her nutrition through an IV. The first IV site went bad, so a new one was placed in her scalp...not pretty. Many tests were done and they ruled out Cystic Fibrosis, cancer, etc. Finally, a biopsy was done near her rectum, and we received the diagnosis: Hirschsprung's Disease. And yes, it took us a LONG time to be able to spell it.

Hirschsprung's Disease is a congenital disease that occurs when nerve cells are absent from a portion of the baby's intestines. When there are no nerve cells, stool cannot pass through the intestine. Surgery was performed to remove the affected segment of her colon. Thankfully, it was done in one stage, so a colostomy bag was avoided.

The day after surgery, Jared decided to head to work for a few hours, leaving me at the hospital to visit with our friend Miriam. We were just chatting away when Annaliese's monitors started going off. We had been used to a few beeps and buzzes when she would shift positions, but this felt different right away. Her O2 level dropped drastically from 100 down to the 30's. Immediately our room filled with nurses and residents. I remember thinking "She's going to die". Miriam stood next to me with her arm around my shoulder as I frantically called Jared (who was only just leaving the parking garage) and told him something bad was happening. Within what I'm sure was only a few minutes, but felt like an hour, she was stabilized and most of the team left the room. They discovered that the morphine they had been giving her to control her pain had built up to a level so high it caused her to relax to the point of not breathing. It was immediately discontinued and she was fine. We were able to go home within a couple of days.

Life was pretty normal for a long time. We had routine follow-up appointments with the pediatric surgeons and they always said she looked good. We made a few visits for some constipation issues, but they usually resolved themselves to a point that was comfortable for her and us.

Two and a half years ago, she got very ill. I remembered the surgeon telling us that a normal intestinal bug would hit her harder than it would a 'normal' child (meaning one without Hirschsprung's) and that she was at a greater risk of dehydration. They told us to expect a need for IV fluids at some point. This was that point. She had not been able to keep anything down and was so 'backed up' that she started to vomit *THAT* up too. She was admitted to the hospital and we were there for 10 days. At that time, her lungs had been so constricted from the buildup of stool that she developed borderline pneumonia. Those 10 days were filled with breathing treatments, enemas, and a very angry 4 year old girl who refused to poop. It was exhausting for all of us, but she finally got cleaned out and came home.

Fast forward to this past weekend. Annaliese was at a girlfriend's house on Friday night for a sleepover. We received a call from her friend's mom at midnight saying that Annaliese had a tummyache. She came home and went to bed and seemed fine Saturday morning. We went out for some family time and while we were at the park, she fell asleep on a blanket. On the way home, she cried when we made a few stops because she was too uncomfortable sitting up. She started vomiting in the car. We got home and she spent the next 8 hours vomiting. She was able to keep some liquid down Sunday morning, but was vomiting again by that night.

Monday morning, I took her to the pediatrician and within one minute, the nurse pracitioner went to get one of the docs, knowing she'd need to be sent to the ER. The poor girl couldn't even sit on the table...she lay there bundled up in a blanket, cringing every time someone touched her. Her belly was very distended and was getting hard and more swollen higher up. We headed to the ER and by the time we got there she was vomiting blood. An abdominal xray showed a ton of air and stool mixed in her large intestine. She was given an IV for dehydration and admitted. That night, things started 'moving' a little and the swelling in her belly decreased. She was kept an additional day for observation, and was released today (Wednesday).

One of the docs from the surgeon's office came to speak with us yesterday (Tuesday). He explained to us that Annaliese's large intestine is very enlarged. He compared it to her xrays from 2 years ago and said that they both look very much the same. What he wants to know is, what does it look like when she's healthy and not in an acute situation? Does the swelling go down? If yes, that's good. If no, that's bad. The intestine is a muscle...when it's stretched to that capacity, it does not retain it's strength and loses its ability to contract (hmmm...kind of like my stomach after 5 babies!). It cannot move waste through it when it's that damaged.

Since Annaliese's belly is always somewhat distended, our guess is that the lg. intestine is always enlarged. We are going to wait a couple of months, then get an xray of her while she's healthy. If it is enlarged, those sections will need to be removed surgically. We have many questions about that, but will cross that bridge when we get to it. Right now, we have to focus on getting her back to normal...whatever that is!

So that's Annaliese's story. While we go through things like this with her, it's easy to get scared and worry about things. But, we cling to the knowledge that she is "fearfully and wonderfully made" by God, and that He always knows what is going on with her, even when we and the doctors are scratching our heads and wondering. Thank you all SO much for your concern and prayers over the past several days. The phone calls, visits, and notes of encouragement were very much appreciated. We are so blessed to have such wonderful family and friends surrounding us. We love you all!



Rebekah said...

Hi Amanda,

Somehow I missed this note on Facebook. But then, I haven't been keeping up with my friends' posts very well lately. I will be praying for Annaliese and the rest of the family!

Beckie T.

Quiver Full said...

Wow, Amanda. I had no idea. We will certainly keep little Annaliese and the rest of your family in our prayers. You are an incredible woman and mom.