March 31, 2010

Remembering and Reflecting (long post)

It's hard to believe that it has been a year since we found out that our precious baby would be born with Spina Bifida. When I think back to that very sad day in the doctors office I can hardly recall the exact words they used to tell us but I can still feel the very raw and deep pain I felt when hearing them.

So much has happened since that day last year - so many scary moments while pregnant and so many wonderful moments since Annabelle's birth that it's really hard to mentally go back there. But with it being 1 year since the diagnosis I couldn't help but think about it a lot this past weekend. Because I didn't blog as much last year, I searched through my old e-mail to find my emotion filled words from that week that changed our lives forever.

E-mail dated: March 23, 2009

Hey friends,

I am writing asking for some special thoughts and prayers for my little baby in my belly this week. My OB called today and it turns out my sequential screening test came back positive. Apparently the baby has a 1 in 27 chance of having an Open Neural Tube Defect. I realize that until I have the follow up ultra sound she has requested (hopefully tomorrow) I am stressing and worrying over maybe nothing - but maybe not. I am feeling really sad and really scared right now. The little bit I have read about open neural tube defects since I got the call tonight at 5:00 has not been good.

Thanks for listening. I will of course keep you posted on what we find out.

Nicole


I was blessed to have received so many e-mails and calls from friends encouraging me that it would be ok. They shared countless stories of other families who received false positives, etc... I loved reading through all of the e-mails and being reminded that my family and friends really have been here with us every step of the way of this journey.


E-mail dated: March 24, 2009


Thank you all so much for all of the emails of love and support. I have been a wreck since yesterday when I got the call, but am truly starting to feel a bit more calm after reading through everyone's e-mails. I am still very concerned that something is going to be wrong. 1 in 27 are good odds in the CA lottery but not the baby lottery :-( but I am once again reminded that I am not alone and that I am loved. Remembering that gives me strength to focus on the tasks at hand. As everyone has pointed out there is nothing I can do between now and Thursday to change what the results are going to be so I just need to try and stay calm and as Paurvi pointed out STAY OFF THE INTERNET! You are very right P - thank you! Reading about very scary diagnosis before I may or may not need to doesn't help at all. I'm sorry to read about other group members false positives but am encouraged that it does happen and maybe that will be our situation as well.

I was able to find a baby sitter for tomorrow's counseling appointment and also for the ultra sound on Thursday so thankfully that is all squared away - thank you Becky and Cheryl so much!

Cathy - thank you for your insight on the counseling. I will be interested to see if we get the same lady (yes, I'm going to Magella) and if she has improved a bit in the last 3 years. I too think it's crazy that we have to be counseled first before having the ultrasound results. It seems like so much extra stress and discussion.

Theresa - I am reciting the mantra you sent over and will do each day until this baby is born - healthy or not! You are right, it is a blessed soul that God has sent me.

Thankfully, Benjamin decided he would go down for his nap with out a fuss and is sleeping so I am going to try and rest a bit myself before I go pick up Jack from preschool.

Thanks everyone.


E-mail dated: March 26, 2009

It's with a very heavy heart that we write this e-mail. We unfortunately are not one of the lucky ones to get a "false positive". The positive reading was correct and it does appear that our precious little baby is ill, most likely with some form of Spina Bifida. They were unable to actually see a hole in the spine, however, the complete spine was unable to be seen during my ultrasound.
The baby was being a bit stubborn and stayed curled up the majority of the time. This diagnoses comes from the shifting of brain tissue that was observed. We were told that shifting in the brain like this is almost always indicative of a hole somewhere. The hope is that the hole will be as close to the bottom of the spine as possible as paralysis (due to nerve damage) is typical from that point down. The baby was however moving it's legs and arms and this is a very good sign. It appears that we will most likely not know the full extent of the severity of the illness until the baby is born.

I did have an amniocentesis today which will provide a conformation of the diagnosis but probably little else as far as we understand. It wasn't horrible, however, not much can compare to the feeling in our hearts and stomachs when they told us that the baby did indeed have a problem. I am resting now and don't anticipate any residual issues associated from the
procedure. As of right now, the plan will be to have follow up appointments every few weeks with the specialists to monitor the baby's progress as well as create a plan of action for once the baby is born (i.e. in the event that surgery will be required right away). The baby may even have an MRI (while still in me) as it gets closer to the delivery date. It is our understanding that we will just take things one day/week at a time.

We don't know too much more than this right now, but we ask for your continued prayers for our family and the health of our baby. We are unsure what we will be telling the children, Jack especially as he is a bit of a worrier like his mother and we certainly do not want him to carry around any extra stress or worries for the next 5 months. That's our job :-(

Oh and by the way, we welcome any and all suggestions on baby names since we have never named a girl before. Yep, it's a GIRL!

Please keep us in your thoughts and prayers. We have a long road ahead of us and we need all the support we can get.

Lots of love,

Nicole and Branden


And so for the next four months we moved forward as best as we could. We had good days and some really down days. We were lucky not to have had doctors who gave those worst case scenarios I hear so much about. Our Doctor was great. She was encouraging and positive. She even corrected me one day when I referred to the baby as being sick. she said "your baby is not sick, she has a birth defect and we will be fixing it when she is born". I don't love the word birth defect but I understand what she was saying.

The boys developed a strong bond with their baby sister right away. They loved talking and singing to her in my belly. They called her their FLOWER. According to Jack they named her that because "a flower is the most beautiful thing in the world" - so sweet! Jack would often share with others that his sister had an ouchie on her back but the doctors would be fixing it after she is born.



On April 10th I found what in so many ways has been a saving grace for me - Spina Bifida Kids through BabyCenter.com . It's an online group for parents and mom's to be of children with SpinaBifida. I was a silent observer for awhile but soon jumped in with my questions. These women are amazing! They are all very encouraging and supportive to one another. It's a safe place where you can ask your questions, express your frustrations and share your joys with other women who completely understand what you are going through. It's a great group and through it I have connected with several women that I am proud to call my friends. They are people I would be friends with even if their little ones didn't have Spina Bifida. I feel blessed to have these new friends in my life. They encourage and inspire me.

They all told me that the pregnancy would be the hardest part - they were right!

Some might call this a coincidence, but I know better. God put someone in the right place at the right time to literally become my SB Mentor. Sarah was picking her daughter up from preschool and just happened to over hear two of my friends talking about Annabelle's diagnosis. Sarah politely interrupted and shared with them that her oldest daughter has Spina Bifida and Hydrocephalus. She proceeded to gave my friends her telephone #, e-mail and blog address to give to me. Sarah's friendship has become very special to me. She "gets" me. She understands my pain and my joys - regardless of how small they may seem to some. She provides perspective because she has been there. She validates my feelings. Bottom line she's a good person. Once again, she is someone I feel proud to call my friend and someone I clearly would be friends with even if her daughter didn't have SB. What a blessing that even before Annabelle was born she was helping to bring great people into my life. Until this past weekend Sarah and I had only corresponded online - we email and followed each other's blogs. However, thanks to her new business venture Little Penelope Lane we had the opportunity to finally meet in person. It was like meeting a long lost friend or a pen pal from summer camp. It was really great and I feel like we could have talked for many more hours. I hope that we will get the opportunity to get together again and I look forward to meeting her daughter.


(March 27, 2010)

It has been an amazing year: 4 months of not knowing her but feeling her in my belly and watching her on the Ultrasounds and 8 months of being able to love her so completely. Our lives have been forever changed since we were first introduced to the world of Spina Bifida last March. It has been a roller coaster of emotions which has included 5 surgeries but also a daily lesson is the beauty of life and the beauty of friendship. New friends have been made and our longtime friends have shown us more love, kindness and support than any one family could even imagine. Annabelle has brought so much happiness into our lives. She is patient, kind, happy and funny. She is sweet and cuddly and she is wonderful! I am proud and honored to be her mother.

I am glad to have taken the time to remember the first four months of this journey, but I don't anticipate needing to think about them again anytime soon. We are no longer living in the unknown and what ifs. She is here and she is great. She is writing her story now. What Annabelle will or will not do is not be based on statistics but on her abilities, her strength and her determination. I am confident that Annabelle will amaze each of us with what she will make of her blessed life. I feel so thankful to be a part of it.

I love you Annabelle - our sweet, beautiful, perfect angel.

It's official

My little girl is a chatter box just like her mommy! She is officially saying daddy - which comes out more like dada dada. She's been saying it for about 2 days now. It's super cute and I can't wait to get it on video. She had said it for me several times and then she said it for Branden yesterday who of course loves it. She then she said it a ton of times tonight when we were having dinner with family from out of town.

I love her little voice - it's so cute!!

March 29, 2010

Big girl stroller

Until recently, whenever we went for walks I would have Annabelle in either the snap-n-go (in her carrier) or on my chest in the Ergo or the Mei Tai. However, lately I could tell she wanted to be up and a part of the action more so we finally broke out the big girl stroller. I received this beautiful brown (my favorite color) stroller from my Dad and Alex when I was pregnant.

Annabelle is finally big enough and has enough body control to sit up for longer periods of time. She was a little unsure at first, but then seemed to really like it. She even fell asleep on the walk home.



Doesn't she look like such a big girl in this photo? These photos were taken on March 29th

March 27, 2010

Big girl snack



We are still working on not choking but I can tell she likes them. She has really good finger control so it's impressive to watch her pick them up and put in her mouth. Such a cutie!

March 24, 2010

A word we won't be using around here

Last week there was a very inspiring video circulating among some friends. After watching the video I attempted to write a blog post about it but in typical Nicole style I didn't get it done - I am easily distracted and am buried in paperwork and laundry over here. However, a friend of mine, Joanna, Jet's mommy's wrote about it in a great post on her blog. After reading it I knew I couldn't have said it better so why even try. She captured everything I felt and more and put it out there for people to read and hopefully learn from. It's a great post and if you have the time I encourage you to read it. She even has a cute picture of our Annabelle and some of Annabelle's friends on it.

What's the word I was referring to in the title you ask? I guess you will need to check out Joanna's blog for your Vocabulary lesson.

Also, if you decide to read her post you will know why I posted this picture of OUR little Rock Star!


(Rock Star pictures taken February 27, 2010)

March 23, 2010

Meeting Auntie Pammie




Aunt Pam drove from Texas for a surprise visit to see Brent in the hospital and to meet Miss Annabelle. We were SO happy to have her here to visit for 2 days. What a treat! We sure love you Auntie Pammie. Thank you for all the Texas goodies and the love. Hope to see you again soon.

March 17, 2010

St. Patrick's Day 2010

The day started off super fun, mostly for her big brothers but Annabelle is always happy to be part of the action - sporting her green dress.


We went to a splish, splash play date at a friend's house

and Annabelle ended her afternoon with a little nap on a towel under a sun shade. It really doesn't get much better than that! What fun we have when the weather is warm.

I love you my sweet Annabelle

March 16, 2010

Meeting with the Occupational Therapist

Today, an Occupational Therapist came to our home to do a developmental assessment of Annabelle. Although we feel that she is doing great and essentially on target for her age, it's always a little worrisome when someone else is actually going to be evaluating them.

The therapist was extremely nice and seemed to really enjoy interacting with Annabelle. Annabelle liked her as well. Seriously, who am I kidding, Annabelle is a pretty likable girl so it's no surprise she won her over with her happy smiles and big belly laughs.








The therapist did a whole series of "tests" with Annabelle and although we haven't gotten the official report she was pretty clear to say that Annabelle is doing great. Unfortunately, Annabelle had been having a lot of eating and gaging issues since the last surgery which is what prompted this assessment. Thankfully, she had started showing improvement several days prior and was able to successfully eat her rice cereal and yogurt. She has continued to improve and had her best day eating so far today. The therapist also introduced Annabelle to Cheerios and helped her drink out of a sippy cup! We were excited to see how well she did with both. Because she is still so little (only 12 lbs 13 oz) and is 100% breastfed (no bottles) the cup was a little hard for her, but she was very interested and I'm confident she will get better and better at it. In typical Annabelle style she tolerated the entire hour and a half assessment without a complaint. She is such a sweet and loving little girl

March 13, 2010

Whoo Hoo

it's an ear infection!

It's funny how happy I was to hear the doctor say that this morning. She is starting antibiotics and we should have our sweet and happy girl back soon! Thanks again for everyone's care and concern for Annabelle (and her mommy) this week.


(picture taken March 10th)

Spoons are fun!




Annabelle enjoys holding her own spoon now while I feed her. No, this picture wasn't taken at Halloween time. I let the boys pick out her bibs each day and this was the lucky one for the day.

March 12, 2010

Could it be happening again?

This picture is cute ONLY IF her shunt isn't malfunctioning.....

Annabelle has been having a tough 24 hours. She is exhibiting some of the signs of a shunt malfunction again. I know, crazy considering the last revision was only 4 1/2 weeks ago. We do know these same symptoms in a "typical" child - fyi - that is the PC word (thanks) could be for an ear infection, UTI, teething, cold or flu but since she has a shunt we have to consider that a possibility. She has been very sleepy which is not like Annabelle, except when her shunt is malfunctioning. This afternoon when I was feeding her, she just turned her head and fell asleep - what in the world???

Please pray that whatever is hurting her right now that it not be the shunt and that it can healed easily without requiring a hospital stay. I know that is a lot to ask of God and I know that I have been asking way more than I am have been giving.

I will try and remember this:

Philippians 4:13 ...I can do all things through Christ who strengthens me

March 6, 2010

Floor time - March 6th

We have really started working on getting Annabelle up on her knees more during "play time". I'm always looking for creative was to make her floor time better for her. We know that strengthening her legs and core is critical for her to reach her developmental milestones.

She really loves playing with this activity cube. It was Jack's first (of course) and was one of his favorites as well.

Thankfully she loves floor time, but with two very active brothers she doesn't always get enough of it.

March 2, 2010

More PT pictures - March 2nd

It's so impressive to watch Annabelle in a 50 minute PT session. She is she so agreeable and works so hard. She will let Stacey know when she doesn't like something, but then she moves on and refocuses so well. She is such a determined little girl. I can't wait to see her master sitting and crawling. I am confident it will be happening sooner than later.







Watch Annabelle in action
video