September 11, 2010

Shunt revision # four

Can you even believe it. Our sweet Annabelle had to have another shunt revision yesterday (9/10/10). As I mentioned in my previous post, she had woken up on Wednesday night vomiting and of course we thought it must be another UTI. After being checked out on Thursday it was determined that her urine was super clean and no bacteria was growing. This was exciting for us because it's been almost non-stop UTI's since about May.

On a side note, we had recently decided to take charge of our urology issues and seek out a second opinion for her care. We connected with a new urologist, Dr. Roger DeFilippo, who is based at Children's Hospital LA. He has an impressive background and seems to approach his patients with the proactive attitude we appreciate. We met with him a week ago yesterday and were immediately impressed with his communication style and were secretly happy that he has a satellite office in Torrance - which is WAY closer than Los Angeles.

So back to the latest shunt saga. After another 24 hours of almost complete lethargy and sporadic vomiting Dr. McCormick, Annabelle's super awesome pediatrician felt it was best that I bring her back in to be evaluated. The pediatrician's office is within walking distance from the hospital so once she ruled out all other possibilities she had us walk on over to the ER for a full evaluation. It was pretty much a whirlwind after that. Annabelle was immediately seen by her Neurosurgeon Dr. Javaheri who thankfully was available and at the hospital. You all already know how great we think he. They did a complete shunt series (x-rays and CT Scan) and the determination was to more forward with the shunt revision that night. Dr. J clearly could have pushed it until the following day, but he is a caring man and didn't want Annabelle to suffer any longer.

Drawing some blood before heading off to surgery

It's so hard to see your baby in pain and feeling scared

They asked me if I would like to accompany her into the operating room this time. I was able to hold and comfort her until she was "asleep" from the gas. Although, it wasn't pleasant to see her this way I appreciated being able to see the surroundings she would be in, talk with the surgical team (who seemed great) and to be with her until she was no longer aware of what was going on. I am hopeful that I helped a little to make her feel more comfortable and safe.

The wait was long and stressful. It seemed like it was taking forever and I was pacing up and down the hall waiting to see Dr. Javahery. When he rounded the corner I burst into tears and said "what took you so long?" He gave me a hug and assured me that everything had gone fine and that she was on her way to recovery. It turns out the anaesthesiologist had a tough time getting her IV in so that held up the surgery quite a bit. I was so eager to see my little sweetie so he and I headed on over to recovery to check in on her. She was crying a bit but looked and sounded pretty good. They were attempting to give her a bottle but little Miss Annabelle acted as if she didn't know what to do with it. She did however nurse like crazy once I showed up. I love nursing her. I think knowing she's my last baby makes me treasure that special cuddle time even more.

Check out her incision and new haircut

Today's recovery hasn't gone as smoothly as we had hoped. She seems to be in quite a bit of pain and my heart is breaking for her. She's been nursing non-stop mostly for comfort I am assuming, but clearly my body isn't used to this much nursing and I was fearful that she wasn't getting enough milk. We offered her some juice and she sucked down the 8 oz in record time. We think that, on top of the nursing and the IV fluids were just a little to much for little tummy. She vomited big, which of course sparked them to take her temperature and reassess if she was well enough to actually go home.

Resting comfortably with Daddy

We were anxiously awaiting the removal of her IV which we believe was causing her some additional pain.

Annabelle was sporting CRAZY HAIR after this surgery! She had a major Flock of Seagulls hairdo in recovery last night. (example below for those of you too young to remember.) It's toned down a bit tonight, but still kind of silly.


So after a few extra hours of observation and a few calls to her doctors the decision was to let us go home. Thankfully, there is enough confidence in us as parents that if she takes a turn for the worse they know we will bring her back. She threw up again right when we got home, but her temperature had dropped to normal. She actually seemed to feel better after she threw up and was visibly happy to home. I nursed her a little more and then put her to bed where she is comfortably resting right now. We will be checking on her in another hour and our hope is that her temp is still normal and her fontanel is still flat or even sunken in a bit. I will of course update if by chance she has any major changes in her recovery.

Once again we are humbled by the amount of love and support that has come our way for Annabelle. The text messages and e-mails through FB and on the blog are just heart warming. I truly have no idea how I would find the strength each day to keep it all together if it wasn't for you guys. Knowing we are surrounded by so much love means the world to us and although I don't seem to find the time to personally respond it is not because I don't read each one or that I don't care because I do - I really do! So, thank you, thank you and I look forward to sharing happy pictures and good news about Annabelle very soon.

Good night friends

20 comments:

  1. Nicole, we love you! I am so sorry you have to go through all of this! What a year! Please let us know if you need anything. We will keep Annabelle and you all in our prayers. Sending so much love your way.

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  2. Thank you so much for sharing. You guys are amazing - so strong and so able. Totally laughed at the Flock of Seagulls photo comparison! Hugs, hugs and more hugs.

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  3. seriously, love that you found some humor in all of this with the Flock of Seagulls comparison. "And I ran, I ran so far away, I couldn't get away.." Love you guys. XOXO

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  4. That sounds awful. Isabella does not have a shunt, so I haven't gone through that. :( I hope she feels better soon!

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  5. I'm so sorry Annabelle had to go through yet another revision. I am praying for a quick recovery, and for a break in the madness for you guys.

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  6. Miss Belle looks so beautiful when she's sleeping. You are all in our thoughts today. We love you guys so much!

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  7. Your poor little angel!! Those pictures of her in the hospital just break my heart so I can only imagine what it was like to be living it. I'm so happy to hear that she's at home with you again and hopefully making a full recovery! You are so right about how amazing nursing your little one is, especially through times like this. The power of a mom is amazing.

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  8. I cried reading this and knowing what Annabelle and you are going through. I hope your dear, sweet baby feels better soon. Sending good thoughts....

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  9. Aunt nicole I am SOOO sorry to hear about all of this!! Keith's and mine prayers are with sweet little annabelle and of course you and uncle brandon and the boys. PLEASE let us know if we can do ANYTHING to help you guys out, even if its taking Jack and Ben for a few hours. We love you so much. You doing so good with staying strong, keep up the amazing work. Give little annabelle a kiss for us. We love you guys
    xoxoxo Amanda <3

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  10. Oh Annabelle and Nicole! You guys have had a really tough summer! Sending you guys happy thoughts and prayers!
    It breaks my heart seeing her in the hospital. I'm glad you guys are home and healing.

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  11. Nicole, Catherine forwarded your blog. I'm so glad you are writing about Anabelle, this is a great resource for other parents. It's kind of you to share. I'm glad to hear they let you stay with her for anesthesia induction. I believe it is a great comfort to Anabelle to have you there, but I know it can be difficult to watch. She's a lucky baby to have you for parents. Good luck.

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  12. I happens so fast doesn't it? I hope 4 is the magic # and all things are good and well for you for a very long time! It breaks my heart to see our kids in pain. So glad she's feeling better.

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  13. Definitely praying for you, sweet Annabelle, and your whole family! Sounds so stressful, but it seems you have it all under control--even if you think you don't. I'm so glad she seemed better when you got home in her normal (less stressful) surroundings. And I'm SO glad the doctors have confidence in your ability to care for her and know when she needs to be back... what a great feeling you must have about that!

    And that she doesn't have a UTI--what GREAT news! Glad you have a new urologist. I hope things continue to improve in that area, too.

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  14. Wow, I was out of the loop for only a day and I totally missed this-and never even saw it coming. If I may say, although I know this was definitely not easy for either of you, I get the impression that you are getting stronger when these things happen. Just trying to point out that you seem to be a very STRONG momma who is doing EVERYTHING she can for her little girl. And your strength will only help Annabelle be strong, too. Praying for you guys and that Annabelle has a quick recovery!

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  15. Praying for you and Annabelle. Quick recovery sweet girl and then maybe some uneventful days and maybe even weeks for your family!

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  16. wow i dont know how i missed all this!! I will be praying even more for your sweet annabelle and her mommy!!!

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  17. OH Sweetie,
    You and Miss Annabelle are always in our thoughts and prayers. I am glad you are back home,and I hope to see that sweet smile back on her face very soon. Love and prayers, from me and Maddie

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  18. Thanks for sharing Nicole. Glad to hear she is home and it went well. You're all in my thoughts.
    xo

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  19. Nicole, I'm so sorry to see Annabelle has surgery again. RJ had tubes put in his ears a few months ago, I can't even imagine how difficult this is for you. There is no doubt your girls is strong and so are you! You are doing an amazing job! Much love to you! Suzanne Kuhns

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  20. I'm sending prayers that she's back to her sweet self soon and no more shunt revisions needed!!! How incredibly stressful and tough on all of you. Hugs!!!

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