January 30, 2011

YOU WON'T WIN!

Yep, I'm talking to you SPINA BIFIDA!!! You thought you were winning but you won't!

I have once again realized that I can sit here and be sad and waste my days away or I can be happy, strong and thankful for all that I have. Life is what you make of it and I refuse to let Spina Bifida ruin my family's life. It is part of our life but will not take over our life. It won't, if I don't let it. I know that I set the mood and tone for our home. When I am worried and overwhelmed everyone feels it and in turn reacts in their own way - which is usually not the best way either. So, enough of that! Those days are over.

I woke worried and had many tears this morning but enough is enough. Yes, Annabelle is sick again. Quite sick from the looks of it. I don't know if it's another UTI or if the C-diff has returned or never went away. Sadly, she is uncomfortable, nauseous and has a fever. My goal is to keep her hydrated over the next 24 hours so we can avoid another hospital stay. The Dr. will see us in the morning, start the lab work to determine what in fact is infecting our sweet girl. We will then figure out where to go from there.

My head is clear and I am in charge once again. This set back will NOT break me, it will NOT get the best of me. I am stronger than I think I am and we WILL get through this.

Thank you everyone for the love and support you have all shown us. I can't thank you enough. I thought it had been too long since I posted any videos of our sweet girl so here you go. This video was taken on Monday, 1/24/11. Because she has been almost non stop sick since Christmas she hasn't really made as much progress with the walker as we had hoped. But really, who am I to judge HER progress. She is doing awesome and is doing what her body is able to do today. Progress is progress regardless of how small it may seem. Check her out for yourself.



*side note for my mommy friends who have been around since baby #1 - yes, that is a LBLO original tie dye onesie.

January 28, 2011

P. H. S. D

So it seems I have been noticeably quite these last two weeks. Transitioning from the stress of a hospital stay to hustle and bustle of our home life is always hard for me. This last stay/transition was particularly hard. I'm not sure exactly why, it just has been. I guess four days of constant noise, interruptions, doctors, nurses, med students, injections, bad news and more bad news, set backs, lack of sleep, etc. can really upset ones rhythm. Unfortunately, mine was really knocked out of whack this time! I am slowly starting to come back around - which means I only cried once today (scary, I know!). Sadly, I have been a big ball of emotions these last two weeks. I'm trying, really trying to snap out of it. I need to snap out of it. My family needs me to snap out of it! So please bare with me friends as I find my way back.

Clearly my Annabelle isn't suffering from the same post hospital stay distress (PHSD) that I am, which is great (that was my attempt at comedy). She has jumped right back into normal life and is her happy self again. She does HATE all of the medicine I've had to give her though - 9 doses a day, 4 of which make her vomit if not on an empty stomach. This has been a major challenge for me. 3 of those doses (the C-Diff antibiotic) stop tomorrow (yeah!), however, we are starting a new medicine on Monday to help stimulate her appetite. She is eating more than she was this last month but clearly is not eating or showing enough interest in eating that she should be. I am happy to report that she has put on some weight ~ just about 9 oz in the 2 weeks since she was admitted to the hospital. We are very hopeful she will keep gaining and moving in the right direction. BTW - with the 9 oz gain that puts her at 16lbs. 1 oz, 27 inches long. If only I could gain that slowly :-o

Here she is being her typical ROCK STAR self with her super cool brother Benjamin

Thanks for checking in on us.

January 16, 2011

Hospital Highlights

It's Monday night and we are home! We actually got home yesterday but I have been and sill am totally still exhausted. I figured I better get some stuff down about the last 3 days in the hospital before life gets back to crazy, I mean normal tomorrow. We were VERY lucky to have Branden home with us today.

So just to recap, Annabelle was admitted to the hospital on Thursday and was released on Sunday afternoon. Click HERE if you would like to read the details of what lead to her hospitalization and how the first 12 hours went.

Friday was very up and down. The first half of the day (morning and early afternoon) Annabelle was feeling pretty good. She was hydrated from all the fluids, had passed large amounts of poop (sorry if that TMI) and was getting medicine to fight the infection that we didn't know she had yet :-o You can see in the pictures below that she had become much more comfortable and playful. It was so great to our sweet Annabelle shinning through again.




We are VERY thankful for the Child Life Department at the hospital who so graciously brought us over toys, books and even a swing to help entertain Annabelle. I have learned that it is quite difficult to keep an almost 2 year old happy in a hospital room - especially when they can't really get out of their bed.

Annabelle loved getting a surprise visit from her Papa. Mom and Dad loved getting lunch brought to us. Thanks again Dad!

After my Dad's visit Annabelle and I went for a little ride down to radiology. The Dr.'s wanted a renal ultrasound since she was testing positive for a UTI and they were concerned about her kidney's. Sadly, the results showed that her hydronephrosis has come back on both sides - ugh! We are hopeful that maybe once she isn't impacted, not infected and has recovered from all the stress of the clean out that the kidney's will look healthy again. We plan to do a repeat ultrasound in a few weeks.

By mid afternoon Annabelle's diaper rash was getting to be too much for her to handle. Word of Advice - if your child ever has to be hospitalized for a clean out PLEASE request hospital grade diaper rash cream (i.e. Sensi-Care) and A and D ointment to put on their bottom BEFORE the poop starts to come. We were putting A and D ointment and Desitin (which is what they provided to us) but it wasn't doing anything. Her bottom went from beautifully soft to reddish purple over night. It was heartbreaking! She cried for almost 2 hours non-stop. I was able to get her some Tylenol and then Seni-Care which started working immediately.

We also got the disappointing news on Friday afternoon that Annabelle had tested positive for C. Difficile. Here's a short explanation of what it is: Antibiotic-associated (C. difficile) colitis is an infection of the colon caused by C. difficile that occurs primarily among individuals who have been using antibiotics. The belief is that Annabelle developed C-Diff after taking the antibiotics for her ear infection that started on 12/31 or possibly after her last round of Cipro (in Oct.), which would mean my poor sweet has had it a little while. Thankfully, they started her on the antibiotic (yep more antibiotics) to fight it right away so she actually got 24 hours worth of it even prior to actually knowing she was positive. Apparently, this is also why she was put into isolation (i.e. private room for mommy!). Sadly though this meant we would NOT be heading home on Saturday as we had hoped, which meant sad mommy.

Saturday came and Annabelle was feeling pretty good. Visibly tired but I was as well so I think that was to be expected under the circumstances. It's funny how they say rest is the best medicine yet you can't get any rest in hospital!

Here she is taking care of her baby

Taking a wagon ride down to X-ray. They wanted to check and see how much poop was still left in her belly. Because it's RSV season we opted to have her wear a mask to help prevent her from catching something from someone else. I was disappointed that the nurses didn't suggest it themselves but glad that we ensured that it happened.

Thankfully, we got the news that she was finally cleaned out and could stop the clean out medicine which by the way is called "GoLYTELY". I thought that name could be debatable :-)

We also so got the go ahead to start eating!! After about 35 minutes of gulping, I mean nursing she had a few of her favorite graham crackers, then 2 cereal bars and 4 ounces of Pediasure. My little girl was hungry and finally had somewhere to put it.

One more cereal bar please!

Sleeping so peacefully on Saturday night without her NG tube.

Sunday afternoon - dressed and ready to go! Just waiting to get our papers to get out of there!!


Once again I just want to thank everyone for all the love and support. Bottom line, being in the hospital is hard, very hard I won't lie, but we got through it and we are moving forward. However, I know we would not have been able to move forward as well without all of you - your love and support means so much to us! Just to name a few that really came through for us this week:

Grammy (my mom) - for watching the boys on Thursday & Friday
Papa (my dad) - for lunch on Friday and watching the boys on Saturday morning
My mom's group friends - for sending over the yummy food and goodies from the Secret Santa party I had to miss :-(
Our two neighbors - one who brought a complete dinner on Saturday and the other who brought us a wonderful lunch today.
Our good friend Greta - for bringing us a huge batch of pasta and all the trimmings which we ate both last night and tonight. FYI - Greta has 3 children and is pregnant but somehow found time to make us a meal - pretty awesome!

WE ARE SO VERY BLESSED! Three sleeping babies and a huge pile of laundry to fold. What more could a girl ask for :-)

January 14, 2011

Crappy News

Okay, so that was a bad attempt at some humor during a pretty stressful time. Annabelle was admitted to the hospital yesterday (Thursday, January 13th) due to sever constipation, coupled with diarrhea. We have been battling this for what seems like 3-4 weeks now and I am so thankful we are finally getting some answers and finally making progress.

I have been talking with her pediatricians for several weeks about the diarrhea and what seemed like an extreme slow down in solid stool. Everyone attributed it to one thing or another - first it was a side effect of her ear infection, then it was a side effect of the antibiotic given for the infection. My heart told me different. I was noticing an increase in her belly size and a decrease in the already very little amounts of food she ate. I brought this up but after 2 exams everyone still felt that although there was some small amounts of stool in there it didn't feel hard or obstructed and to just continue as I was doing. Well this was wrong advice and sadly a wrong diagnosis.

After 3 days of being off the antibiotic and still no regular stool I called and asked for an abdominal x-ray. The Dr. had just saw her the day before so I felt nervous asking for this procedure but knew it was what needed to be done. She agreed with out hesitation. We are blessed to have pediatrician who trusts me and knows that I don't overreact. She knows that I am the primary care giver and that I know my daughter better than anyone. We were getting the x-ray performed in less than an hour.

You may (or may not) be wondering how I even knew to ask for the x-ray. Well that's the cool part. Although I never asked to part of this amazing community, I am, and honestly I couldn't be luckier. Through technology, I am surrounded and supported by wonderful mothers (and some fathers) whose children have Spina Bifida just like Annabelle. They know exactly what I am going through because they have been there. They understand and share in my deepest sorrows as well as celebrate our amazing joys. This community shares - they share their knowledge, their resources and their courage. So when I noticed (on FaceBook - yeah for FB) that anther family was having similar issues - slow weight gain, chronic diarrhea, etc... I reached out to her. She didn't just respond, she partnered with me to see how she could help Annabelle. She outlined for me in detail all that they had been going through and all the steps/tests along the way that got them to where they were now. She mailed me (good old snail mail) literature on high calorie diets. That is how I knew what to ask for - that is how I had the courage to ask for a procedure that had never crossed my mind for the several weeks leading up to where we are today. Thank you Lisa M for all of your help. I pray that Evan continues to make awesome progress and that Annabelle will follow his lead.

Okay, so we got the x-ray and low and behold our girl is packed with poop! The pediatrician and the GI. Dr. conferred and the decision was for us to up her Lactalose (poo poo medicine) from once a day to 3x a day and to perform a Fleet enema and they would call me in the morning. Well, we did those things and saw very, very little change. It was pretty discouraging since that seemed like our best bet to keep Annabelle out of the hospital for a total clean out. When Annabelle woke on Thursday morning she was in visible pain. She was bearing down trying to poop (which she never does) and she was unwilling to eat or drink. Then came the vomit - big nasty, smelly vomit. Boy do I hate vomit! Things got a little intense at this point and it because clear that more intervention was needed. The GI Dr. was able to get us in at lunch time and in light of the fullness of her belly, his and our inability to get any poop out and her newly developed fever (101.8) he felt he needed to admit her for full testing and a total clean out. Although very disappointed (yes, I cried) I knew this was the best and safest decision for Annabelle. However, when you have 3 kids and you have to be at the hospital with one of them, that means two will be left behind. This part is very hard for me. I feel bad not being there for the boys. I am their mom and I am responsible for them. This goodbye was especially hard for me. Benjamin had been such a good boy all morning. When I was attending to Annabelle's needs (poop, throw up, etc.) he just played quietly and didn't get in the way. He could have whined and tried to get the attention on him - he didn't. He was a true angel!

Check in was extremely smooth. Our Dr. actually called and pre-admitted us and the hospital called me at home when Annabelle's room was ready. I was able to go home, get packed up and get the boys situated. We avoided the whole ER scene and that was AWESOME! Once we got here it hasn't been so awesome though. Don't get me wrong, the nursing staff has been great and we are actually in a private room. They call it "isolation" but I call it PRIVATE!!! I was told that because she is being tested for a poop infection that her orders came over that she was to be isolated. No complaints here.

She has had the following procedures performed in the first 5 hours here:

vital signs taken
catheterized for a urine sample
blood drawn
nose swabbed for infection
poop tested for infection
IV started - receiving fluids and medicine
NG tube put down her nose to start the medicine that will "clean her out"

And through all of this she is unable to eat or nurse. It is so difficult to see her so uncomfortable and not be able to do anything for her. I just continue to focus on the fact that relief should be on the way soon.

Here she is getting a surprise visit from Emi, her physical therapist. Although Annabelle wasn't feeling well she was very happy to see Emi. She showed Emi her happiness with a smile, kiss and a wave. She is such a sweetie!


This girl LOVES her daddy!


Unsuccessfully trying to get comfortable.


She wasn't interested in sleeping in her bed so we both slept in the chair bed for the majority of the night. I think I need a neck massage to say the least!


There is no question the medicine is working because A LOT for poop is coming out. This is truly the grossest thing I have ever experienced. We are hopeful to have more answers by midday on Friday. I will update as time permits.

As always, thank you for your continued prayers for our family. Specifically, If I may ask that you please pray for comfort and healing for Annabelle, love and understanding for the boys and strength for Branden and I. Thank you to all of those that already expressed your love and support on Facebook.

*this was a super long post and I am exhausted so no proof reading is happening this morning :-). Thanks for understanding!