Shunt Revision Surgery

Annabelle will be having a shunt revision surgery tomorrow morning (Wednesday 9/30) at Long Beach Memorial Hospital. Her CT Scan from Monday showed that her ventricles have continued to increase in size which indicates that the shunt is not fully draining as it's supposed to. If all goes as planned she should be home by Friday.

Thank you for continuing to keep Annabelle and our family in your prayers.

Annabelle's 2nd month birthday

Today is Annabelle's 2nd month birthday! I took some video this morning while we were getting ready for our day but am having trouble uploading it. I will see if Branden came help me later.

Unfortunately, there were no fun parties for us today - just a visit to the Neurosurgeon. I will update more on that visit a bit later. So here is Miss Annabelle looking so cute sitting in her bouncy seat. This is the same seat that was used by both of her brothers, but with a few new girly add ons.

Our BIG guy

We planned to take the boys (oops, I mean the kids) to Knott's Berry on Sunday morning for a little fun before their nap. Unfortunately, with our concerns about Annabelle and all of the calls I needed to make we decided it would be best that I stay home but still wanted the boys to go. Thankfully, my mom decided to join the fun.
Branden and I were texting back and forth what was going on here and there. Obviously his texts were more fun than mine :-0 When this picture (below) and the words "Look who is officially a big guy" came across my phone I had mixed emotions. I was excited and happy that my Benjamin was having fun and riding the log ride -a big guy ride. At the same time I was sad that I was not there to experience that with him.



Grammy bought the "official" picture.

Yes, I cried. I'm a bit emotional this week, what can I say.
My baby boy is "officially" a BIG guy!

I LOVE YOU BENJAMIN!

Weekend of Worries

Although it was a nice weekend it was a weekend overshadowed by worries. Worries for our little Annabelle. We first noticed that she was a bit more sleepy than usual. It had been easy to say "she's a newborn, barely even 8 lbs, of course she's sleepy" but this seemed much more than that. Then on Saturday night she became even more sleepy and less interested in eating. This went on for approximately 15+ hours of wanting to sleep and not eat. We knew something was wrong.

We measured the circumference of her head and unfortunately it had grown 2 cm since the last shunt scare (September 3rd). Our research indicated that typical head growth is about 1 cm a month. Annabelle is actually averaging about 3 cm a month :-(

Yesterday, I spent the day talking with the on-call pediatrician and neurosurgeon. We all agreed that she needed a Cat Scan, but the only way to get one on a Sunday is to go to the ER. After a lot of consideration we opted to take care of her at home until I could get her an appointment. We just didn't feel that sitting in the ER for 10+ hours away from the boys and her bed, etc. was the right decision. She had a decent night of eating and sleeping.

I was able to get her into for the Cat Scan at 11:00 am this morning. She was such a good girl - didn't cry at all. I had to take the boys with me which was a bit stressful. Thankfully my mom met us there and they took these fun coloring kits they had gotten from a friend when the baby was in the hospital - thanks McClain Family. I felt so much lighter once the scan was done. Even though we didn't get the results right then, I knew the doctor would be looking at them and we would move forward from there. The Neurosurgeon's office called at about 4 pm and said they wanted us to come in tomorrow. The person on the phone was unable to give me any feedback on the results of the scan, which was super disappointing, but understandable. We are scheduled to see Dr. Javahery tomorrow at 1:45.

I am feeling like no news is NOT good news in this situation. I'm sad and worried thinking about my baby girl possibly having to go back into the hospital. She has made such great progress here at home these past 6 weeks. She is such an amazing little girl. I worry so much about this shunt and any long term effects of a malfunction, the fluid build up and of course the surgery itself. Branden doesn't want me to to worry and get ahead of myself. He's being super calm - probably to balance me out. I'm pretty stressed out and tired tonight. I need to stay strong for the kids - all of them. The boys really feed off of my stress and not in a good way. My milk supply always goes down when I'm stressed - it's just not good for anyone.

I KNOW that we are loved. I KNOW that our friends and family are praying for Annabelle. I KNOW that God will be with her and our family through this scary time. We will be okay - my head knows this, my heart is just feeling a bit heavy.

Tomorrow is Annabelle's 2 month birthday.

HAPPY BIRTHDAY BABY GIRL - WE LOVE YOU!

Insurance Update

It's been a while since I wrote about our insurance situation and wanted to provide a quick update. I have been working very diligently each week with the insurance company to see what can be done about the outrageous bills we are getting and anticipate in the future. I have to say Great West, well actually our Customer Service Rep. Bethany has been great. It's funny (not funny ha ha, just funny) how once a significant amount of LARGE bills start to rack up the insurance company assigns you a dedicated customer service rep. It's actually been very helpful and we are very grateful for her help. She has been actively working with Annabelle's non-contracted doctors (two in particular) attempting to get contracts agreed to, back dated to the date of Annabelle's birth and signed. As of today an agreement has not been reached but I am feeling encouraged and was advised to check back next Thursday. Although they will not be "regular" in-network contracts they should be way better than what is being covered for these doctors right now. So I am choosing NOT to get completely thrown for a loop regarding the crazy bills were are getting.

So, nothing really new but I am feeling encouraged. Also, we were able to confirm that her Orthopedist and her Urologist (both super critical doctors) that she saw two weeks ago are considered contracted doctors. This was GREAT news!! I will update again with the final news.

What It Means to Be Loved

We recently learned of this Artist (Mark Schultz) and in particular the song: What it means to be loved and wanted to share it. The words are so beautiful, so inspiring and really touched our hearts.

Here's the link to his website:

http://www.markschultzstore.com/comealive/
Once on his site click listen, then click on song #4 - What it means to be loved
*you can click on the title of this post and it will take you directly to his website.

After listening to this song it sparked a conversation between Branden and I that I wanted to somehow document. We want to ensure that Annabelle knows that we love her unconditionally and have loved "the baby in my belly" since the moment we found out I was pregnant. Yes, it was a very sad day in March of this year when we were told that our daughter would be born with Spina Bifida, a very serious birth defect, however, it never entered our mind that she wouldn't be born. She is our gift from God and we would never consider terminating the pregnancy. I'll admit the pregnancy was very difficult - the worrying, the fear and all of the unknowns. However, that is gone now and has been replaced with happiness and joy for this amazing little girl who completes our family.

We continue to be saddened when we think about how many times we were asked if we wanted to terminate the pregnancy. We look at our beautiful, sweet, bright eyed daughter who is so full of life and can't even imagine that someone would consider not bringing her into the world. It was primarily the doctors who asked the questions, not friends and of course not family. Anyone who really knows us, knows that as a Catholic and as a mother, an abortion would never be a consideration - regardless of how bleak a picture the doctors might have painted.

We didn't and still don't fully understand why we were chosen to be Annabelle's parents, but we are so thankful we were. We are so thankful for the opportunity to show her what it means to be loved.

Special moments between brother and sister

(click the title to see the pictures)

Behind on blogging

So life with three kids has left me with very little time for blogging, sigh.....

I'm super tired so I won't be doing any tonight but I wanted to let our family and friends know that we are doing good. Especially since I owe lots of people return phone calls and e-mail. Thanks for understanding.

We have lots to share and I hope to (in greater detail and with pictures) when I get a moment.

Annabelle had her first physical therapy last Friday and it went well.

Jack started Flag Football on Monday night. The class is called Pee Wee Sports and it's for 4-5 year olds and he seemed to really enjoy it.

Annabelle had her first Spina Bifida Clinic today at Long Beach Memorial Hospital. She met with an Orthopedist, urologist and a hand full of physical therapist. We also spoke with several nurses and a social worker. It was a great first SB clinic and we feel so thankful to have so many great specialists taking care of Annabelle.

My poor middle child Benjamin - I don't have anything new or specific to share about him. Hmm, I better make sure that doesn't become the norm. He is still super cute, a bit sassy and is doing great at preschool still.

Okay, off to bed I go. Thanks to all of those who care enough to check in on us through our blog. I will get some good pics up soon :-)

We are SO loved!

When Annabelle was in the hospital after she was born one of the Dr.'s asked if we were taking care of ourselves when not at the hospital. She asked specifically if we were eating okay under the circumstances. I shared with her that our friends and family had been bringing us meals. Her response was "you know, food is love", "They love you enough to ensure that you and your children are well fed". She was so right! Thank you everyone who signed up to bring us a meal. I can't even express how absolutely grateful we are to you. The meals were truly fabulous. The desserts - OMG I can't even put into words.

Thank you for feeding us - thank you for loving us!

Our boys are face paint CRAZY

They would seriously have their faces painted all day every day if we would let them.
Silly, but fun!

Tea for three

The other night (right before bed) Jack asked if we could have tea together. My initial thought was "come on, stop staling, it's bed time". Then I realized that maybe he just wanted some big boy time with his mommy who at that very moment was NOT holding his new baby sister. Thankfully I agreed and we made tea together. It was very special - we boiled the water, he steeped the tea bag, I poured 3 cups of tea and they added just a bit of sugar to each of their cups. Branden was home but said he was too hot for tea - it was a pretty hot night. Jack said he wanted to use fancy cups and saucers. We don't really have any "fancy" ones but what we had worked - he was happy. We also ate a few tea cookies (a.k.a. animal crackers) and shared a few laughs. It was a very nice end to the day with my boys. So glad he suggested it!

Jack has Croup

What more can I say.

It's been a very long weekend - especially for Branden. I'm guessing he is pretty happy to be back at work after taking care of all the sicky poohs in this house.

Hoping friends and family are all healthy this week!

We are home

Thank you everyone for your positive thoughts and prayers for Annabelle during the last 24 hours. It has been a bit crazy and we are so glad to be home and SO THANKFUL that Belle is doing well. She was a real trooper at the hospital and once again has proven her strength and positive nature.

After having a Cat Scan, urine analysis, blood panel, chest x-ray, 1 full bag of IV fluids and a crazy mucus test they determined that she's okay - I know, go figure. Whatever was bothering her seems to have worked itself out. Her fontanels (top of the head) were significantly less bulging this morning and after the IV fluids she seemed to perk up and started eating again :-) They did get out several big boogies from her nose (yucky, I know) and that seemed to help her breath much better.




Well, I am super tired and am just so glad to be home. On a side note, it turns out I am a little sick myself. All week I had been feeling some pain in my C-section area but really never slowed down enough to deal with it. With all the stresses of the week and my worries about Belle I just took my Motrin at the end of the day and went to slepp. The pain continued to increase and when we were in the ER last night for upwards of 8 hours waiting to be admitted I started to really notice the pain. I was able to see my OB this morning, thankfully they are in walking distance from the hospital. Turns out I developed Cellulitis (bacterial infection of the skin) - SUCH A BUMMER! So now I am on antibiotics 4 times a day and need to follow up with the OB on Tuesday. The Dr. believes I should be better by the beginning of the week. As one friend said, when it rains it pours - oh well what can you do. Thankfully it's the long weekend and I have an amazing husband to take care of me and the kids (again).

Update on Belle's condition

The Scan Results seem good. The left ventricle is full decompressed and the right is partially (not completely sure what all that means). So his intitial thought is that the shunt IS working. However, after speaking with Belle's pediatrician the decision is that we need to take her to the ER (now) and have a blood and urinalysis completed. This will rule out a urinary tract infection which is VERY common in children who have Spina Bifida. If that comes back normal they may "tap the shunt" which can tell thim if there is an infection.

Okay - off we go. The boys are going to be here with their Grammy. As always, please keep us in your prayers.

Cat Scan update

It's scheduled for today at 1:00 pm at Miller's Children's Hospital. Keep us in your prayers. Will update when we know anything new.

Possible shunt malfunction

I can't even believe that this is happening. My heart is breaking at the thought of our precious little girl going back to the hospital for a shunt revision. We saw the neurosurgeon on Tuesday and he confirmed what Branden and I felt on Monday night on the top of her head. I called it fluffy, Dr. Javahery called it bulging fontanels. Any way you call it, it is not good. The bulging / fluffiness is a possible indication that the CSF
(cerebral spinal fluid) is backing up and therefore the shunt is malfunctioning in some way. Annabelle was extremely fussy during the entire doctor's visit, which has not been her way until the last 72 hours. He was surprised by the amount of crying, grunting and straining she was doing - I was too. We noticed that she was a bit more sleepy and not eating well this past weekend, but in light of the fact that our house has been upwards of 100 degrees (not really sure of the actual temp. but it was horribly hot!) we just figured she was hot and tired like the rest of us. So, now the decision is that she will have a Cat Scan either tomorrow or Friday to see what's going on with her shunt. Obviously, this is extremely scary and stressful for our family and we are once again asking for your prayers. Please pray for Annabelle, our boys who are seeing a very sad mommy and for Branden who is doing his very best to juggle work and taking care of his family with very little sleep.

Fun times at the Long Beach Aquarium

On Monday Mom joined us for a fun morning at the Aquarium.
Truth be told I am still learning how to be out and about with all 3 kids,
so had Mom not agreed to go with us we probably wouldn't have gone.

THANK YOU VERY MUCH MOM - OUR DAY WAS GREAT!

Yes Annabelle was there - mostly sleeping. The boys love pushing her stroller

Happy 1 month Birthday (August 29, 2009)

ANNABELLE GRACE FLOWER

WE LOVE YOU SO MUCH

What I missed in August

There were several things that we did or that happened during the month that I just didn't get a chance to write about. So, I thought I would compile the highlights in one long post.
Enjoy - I know that I did when going through the pictures.

The boys visiting me at the hospital

Jack enjoying time with his Auntie Mingie and Uncle Ed

Face painting with daddy.
Jack the Joker and Benjamin the dragon face


Playing with Grampy's remote controlled car

Special personalized pancakes made by daddy

Jack's visual interpretation of a traffic jam

3 beautiful children asleep in the car and 2 continuing on the couch

Playing dress up with our good friend Camryn

Jack put his "friends" to bed - so sweet