February 27, 2010

Sitting and singing - February 27th

I sat Annabelle up on Jack's bed and couldn't believe how well she was sitting on her own. She was so into the musical bus that she didn't even realize that she wasn't being supported by me anymore.

She looked up when the boys started cheering for her

Jack just couldn't resist "helping" her. He loves his sister and that musical bus - it was his when he was Annabelle's age.

Yes, those are my hands that keep coming up ready to catch her when she falls.

February 19, 2010

Giggling with the brothers AGAIN

I guess this is why dinner takes so long at our place. There is a lot more laughing than eating going on. I guess I should be happy - they could be making her cry :-o

I titled it giggling with the brothers AGAIN because I have another very similar post (click here) from a few months back. It's amazing how those boys can get her laughing. She loves them so much!

February 15, 2010

Bath time: February 15th

Annabelle loves getting her bath. She's just about to big for her little bath sling that she uses and will probably need to start using the big bathtub soon.

I love watching her run her hands underneath the water. She seems almost mesmerized by it.

I'm embarrassed to admit it, but I never bathed the boys as babies. I was to scared to bathe Jack when he came home from the hospital at 4 lbs 11 oz so Branden did it. Then it was just part of Branden's routine so when Benjamin was born he just started bathing him to. But now getting 3 kids bathed is a lot of work so I have finally stepped up and started helping with bath time. The funny thing is I really enjoy bathing Annabelle. I guess I am not as nervous since she's bigger now and I'm also more confident as a parent since she is baby # 3. Whatever the reason, I'm glad I have started helping because I do really enjoy it. It's special time together.

February 14, 2010

Love her! Love that smile!

Just some fun shots from 2-14 when we were all sitting around outside

Working on sitting up independently

She's just so sweet

She loves watching her brothers play

Benjamin stopped playing for a little sisterly love

Annabelle's 1st Valentine's Day Card

It came in the mail from her Papa and Grandma Alex and she was super excited!

February 13, 2010

short and sweet

Annabelle is doing much better. The shunt seems to be working fine and she hasn't vomited any more. It was definitely an issue with her medicine - thank goodness! She has unfortunately caught a cold/cough. She is coughing and has big boogies :-( Not the worst thing by any means, but it's making it rough for her to sleep. We are up with her right now because she is so stuffed.

Just didn't want anyone to worry since I haven't posted. Happy weekend everyone.

February 11, 2010

Update on Annabelle's recovery

We were finally able to fall asleep this morning right before the boys started to wake up. Annabelle seemed a bit better, not great but not horrible. At about 8:30 am she vomited again so I called the pediatrician and she wanted me to bring her in immediately to be seen. After the evaluation it was determined that the vomiting was probably due to one of three things:

1 - the antibiotics not settling well in Annabelle's tummy
2 - the shunt was infected
3 - the shunt was clogged again

Obviously, we were all hoping it was an issue with the antibiotics and not the shunt. Unfortunately, this issue possibly could have been avoided had I not been trying to be cost conscious. Before we left the hospital on on Tuesday the Dr. called in Annabelle's prescription to the hospital pharmacy. When we went to pick it up they told us that the co-payment would be $50. I was shocked! This was an antibiotic that she had before and I was confident we only paid $10 for it. Then I was reminded that our heath insurance benefits had once again changed effective January 1st. So now all brand name drugs cost $50. Well, since there is no generic for this medicine I called the Dr. and asked if he could prescribe something else. He did but now it seems it was a medicine that clearly didn't sit well with her. So today, they changed the medicine back to the original prescription and I purchased it for $50. In reality it has now cost us $70 because I had to pay $10 for the other prescription and $ 10 for today's office visit - ugh! Oh well, the good thing is that she is keeping it down. She has had two doses and didn't throw up either.

It wasn't a great day, but she did show small improvements over the course of the day. She was still a bit sluggish, her face and eyes seem fluffy and her fontanel seemed to not be draining as quickly as it should be. We were feeling OK though because she hadn't thrown up - and then she did. She threw up right after her bath at about 7pm. I was so disappointed and just broke down. I am so tired and so worried about her health. The thought of the Dr. having to go back in her head to unclog this shunt again just scares me so badly. Thankfully she was willing to nurse and fell asleep easily - I was very happy.

She woke up at about 11:30pm and was crying. It was such a sad cry like she was in a lot of pain. We gave her some medicine and I was able to nurse her back to sleep. We both felt her head while I nursing and we believe that it felt the best it had since her surgery on Monday - thank goodness! We can only hope that since she isn't throwing up her antibiotics it's able to do it's job and she is starting to feel better all over. We just pray that she is finally on the road to recovery.

Thank you all so much for your continued to prayers for our sweet baby girl. I will be sure to update about her fontanel and if the vomiting has subsided.

February 10, 2010

Shunt Revision # 3 update and continued vomiting

Tuesday - All seemed good. She was checked out by her doctor's and given the green light to come home. We got home at at 2:30 this afternoon. Unfortunately, Annabelle has been super uncomfortable and has started vomiting again. It's 3am and she has thrown up 3 times since about 5:30 pm. We are very confused and concerned. She can't sleep because she can't get comfortable. She doesn't want to nurse which ALWAYS makes things better. She's just not recovering like she has in the past. Her eyes are still really puffy and she is just uncomfortable.

If the vomiting continues we may be heading back to the ER so we wanted to bring everyone up to speed on what's been happening. Thank you all for you continued love and prayers for Annabelle.

February 9, 2010

Shunt Revision Surgery # 3: Feb 7 - Feb 9, 2010

On Saturday, February 6th Annabelle started throwing up. Once at about 9:30 pm and then again several times during the night starting at 3:30 am. Unfortunately, because we have done this several times in the last 6 months there was no question in our minds that it was her shunt malfunctioning. Obviously, we were devastated but had no choice but to pack up and head to the hospital. This time a bit different though, I packed up and headed off to the hospital by myself. Branden stayed home with our two sleeping boys. I recall it vividly and it was a very scary feeling driving to Long Beach Memorial without Branden and knowing in my heart that I was driving Annabelle there to have surgery.

Because our neurosurgeon is so considerate he had already contacted the ER and let them know Annabelle and I were on our way. Thankfully, we were checked in within minutes, put into a room and then the procedures began. They did an complete shunt series - CT Scan, X-Rays, blood work and urinalysis. As expected the results indicated that her shunt was clogged - same issue as the two previous revisions. It also showed that she had another UTI (urinary tract infection).

It had been very strong all morning. Talking with the various doctors, specialist and technicians, holding Annabelle while she was poked, prodded and had a catheter inserted and even rocking her to sleep at one point. However, I finally lost it when the ER doctor said to me "ok, so as you expected, the shunt is not working. I just spoke with Dr. Javahery (this is her neurosurgeon) he will plan to do the surgery in a few hours". Uh, wait a minute, I need to catch my breath a bit. I was there alone and I knew I needed Branden there with me badly. Because of a a very unfortunate and heartbreaking family situation that happened the day before where my nephew Brent was seriously injured in a car accident (read here if interested in additional details) I was unable to contact my parents to ask for help. It as a very scary and lonely feeling. We rely very heavily on my mom for help with the boys. She knows their schedules, she knows their temperament and loves them unconditionally. I have no idea what we would do without her.

It's amazing though how you can feel so alone one moment and in an instant that all can change. My longtime girlfriend Rachel graciously took the boys all day so that Branden could come be with his girls at the hospital. I was so thankful to know that they were safe and happy - thank you for all of your help. The following day two other great friends took turns watching the boys so that Branden could be at the hospital for Annabelle's surgery. Thank you Cheryl and Becky!! Your help was invaluable and greatly appreciated! We also received several other very kind offers from friends to help out with the boys - thank you for those!

After more discussions with the neurosurgeon it was decided that he would wait 24 hours to do Annabelle's surgery. He wanted to allow her body some time to respond to the UTI antibiotics and see if by chance it would make any difference in her very bulging fontanel. Sadly, it not and the decision was to move forward with the VP shunt revision as soon as he could get an operating room. Now this is a hard thing to do at LB Memorial! It was a VERY long day of waiting. Poor Annabelle hadn't eaten since 7 pm on Sunday. I was allowed to feed her until 3 am but she started vomiting at 7 pm so her feeding were stopped early. She was hungry, cranky and uncomfortable. It was a very difficult day.

The stress was taking its toll on all of us

I took this picture because I was sad that she had finally grew hair over the last incision and now they were going to have to shave it off again - ugh!

She was finally taken back to the OR holding room at about 4:00 pm. We sat there for about 30 minutes waiting and answering questions. Handing her over for surgery is clearly the hardest thing I have ever had to do. My heart aches so badly and I am so full of fear each time. I hope some day it will get slightly easier. I know I won't be able to cry like I do in front of an older child. We kissed her and prayed that all would go well. I just found one of my Facebook posts from while I was waiting:

"still waiting for my baby girl to come out of surgery. I just want to snuggle her and kiss her sweet cheeks"

The doctor came out about an hour and a half later and let us know that all went well and that I would be able to see her soon. My heart stops and I am literally frozen in fear until the doctors says those words "all went well, she is fine". He knows now and tries to give me a big reassuring smile as quickly as he can when he sees me so that I can relax a bit and we can chat. She did have some bleeding which he said he was able to clean and take care of - scary, but normal I guess for this type of procedure.

It was a pretty good night. She slept from 11pm until about 5am which is better than any previous hospital stay. Because all seemed fine the Doctor was comfortable discharging us so that Annabelle could rest and recover at home. We were however told that is she gets another UTI before her birthday (August 29th) she will have to start cathing. I am not happy about this at all! I knew it was coming but I am really struggling to get my head around it.

Waiting to be discharged on Tuesday (2/9). We will all sleep and eat better at home.

This time they put Annabelle's IV in her foot. It was better for several reasons - her lack of feeling in her feet made the needle stick virtually painless and the location made it much more difficult for her to pull it out. The nurse wrapped it in a diaper to help keep it in properly. We thought it was a pretty ingenious idea. Her foot looked pretty fun though.

Our swollen little girl

Of course we are very grateful that Annabelle's surgeries have all gone so well. We know how blessed we are and that many people have it so much harder than we do but the truth is I am frustrated. I am frustrated that this darn shunt keeps getting clogged. I am frustrated that we have to take this precious time to be in the hospital away from the boys, I am frustrated that her physical development is interrupted so often and that her sweet body has to heal after each surgery. I try not to express my frustrations often as I don't want them to overshadow the great moments in my life but I don't want to suppress it either. I really want and need this shunt to work. I do not want to be back in surgery for a very long tome!

February 4, 2010

Trying out some new stuff at PT (February 4th)

A few weeks ago at PT our therapist wanted to try out some new stuff with Annabelle since she is getting older. I have to admit I wasn't really ready for any of this and although she was only trying it out I sort of pushed back a bit. I feel silly now that I did that but sometimes it's hard for me to look at the future and picture what it may or may not be like. It's much easier to live in the present - Annabelle is a baby and babies don't walk! But that is not reality. Annabelle is 6 months old and we hope one day she will walk.

I am feeling much better about all of this now and know that they will be introducing many new things over the next 6+ months. I know that it is all for Annabelle's best interest and I am excited to see what her little legs and body will start doing as she continues to grow and build more overall strength.

These are unofficially called Mermaid pants. I'm guessing you can see why. Our PT asked that I put her in these for 15-20 minutes each day when she is lying on her belly. Because Annabelle's legs "froggy out" we want to bring them in as much as we can. The goal of these pants are to help rotate her legs and knees inward. It's like a mini stretch without actually stretching her. Really no big deal - Annabelle doesn't mind at all.

This is a stander. It's actually different looking than any other stander I had seen before, but they are very commonly used on children with Spina Bifida to help them build strength while standing, hence the name stander. Well, this was the "thing" I was most resistant to. Not really sure why now because I have read all about them, seen cute pictures of little guys in them, etc.. but when she put Annabelle in it I was overwhelmed.

As you can see Annabelle didn't mind at all. She is just such a sweet and accommodating little girl. She just goes with the flow and looks at every knew thing we throw at her as something fun to do. She is so positive and happy. She is how I want to be. I learn from her every day.

Unfortunately, Annabelle is WAY to small (and short) for the stander. So it will be a while longer before they try putting her in one again. I really am thankful to have a great physical therapist whose focus and goal is for Annabelle's success. I know that Emi wants the best for her and I am confident that she will do all in her power to build Annabelle's strength and get her the resources she needs to be as mobile as possible.

I look at the pictures now and think that Annabelle looks super cute. It's funny how just a little bit of time can bring on such a different amount of perspective.