November 27, 2009

Milestones

A mom friend recently reminded me that is does no good to compare Annabelle to our boys, other babies of similar age or even those books that tell us what a baby "should" be doing at any given age. I appreciated the reminder as I was slightly wondering if Annabelle was doing what she was "supposed" to be doing. Silly, I know, but I guess it's normal mom behavior. I know now that when Annabelle reaches a milestone will be when SHE was supposed to reach it and that will be the right time.

Since this blog is Annabelle's baby book I want to document all the wonderful milestones she has reached so far. It's hard to believe that our baby girl will be 4 months old on Sunday (11/29). The time is going so fast and I want to make sure we always remember her milestones.
  • She "talks" a lot - lots of cooing, gurgling and ya ya ya.
  • She blows bubbles and raspberries.
  • She smiles, big open mouth smiles. Her whole face smiles and her eyes sparkle.
  • She laughs, big belly laughs. She likes to shake her head when somethings really funny.
  • She loves her tongue! She loves to stick it out and works hard to get you to stick yours out at her. When you do she will give you one of those big happy smiles.
  • She can bring her hands together and clasp them. She likes to play with her fingers.
  • She has great focus and attention. She loves to connect eyes with you and talk.
  • She has great head control and enjoys tummy time much more than lying on her back.
She is such a joy! She brings us all such happiness. Her brothers just adore and love her so much. They can't get enough hugs and kisses from her. They pray for her and her health everyday. We are so blessed to have Annabelle in our lives. She teaches me daily about strength and courage and I am inspired by her her happiness and good nature.

PS - Branden added that she's a good sleeper as one of her milestones. I didn't think it qualified but he seemed pretty happy about what a good sleeper she is I felt I should add it. She really does sleep much better (in the night) than either of the boys did at this age. If I only I could get myself to bed earlier :-0

November 23, 2009

Follow up Dr. Appointment today - 11/23/09

I took Annabelle to the doctor's today because she has been spitting up a lot and I was a bit worried since she just had her latest shunt revision and a UTI diagnosis less than 2 weeks ago. Thankfully, Branden was kind enough to meet me there at 4:20 so that I didn't have to take the boys in with me. I think they would have REALLY been freaked out watching their sister be catheterized.

Thankfully, all checked out well. Here urine tested negative, which means her UTI is gone (yeah). Although, she has been spitting up she has still gained weight, so the Dr. wasn't concerned. Her ears, nose and throat all looked good as well. We are going to watch her for more signs of acid reflux. Jack has this and if she does it would mostly likely be mild so I'm not concerned either.

Annabelle gained 6 oz in 6 days!! That is pretty good. She currently weighs: 10 lbs 13 oz. Not to bad when less than 4 months ago she only weighed 4 lbs 9.5 oz!

November 21, 2009

I can see!


Annabelle enjoyed facing forward in the Baby Bjorn for the first time. She is such a focused little girl and she loved looking at everything at the museum. It was a GREAT day. We ended the night at Red Robin for some yummy french fries and ice cream sundays. Unfortunately, Annabelle slept through most of it. Probably better since she couldn't have any :-0

Annabelle with her Big Brothers - 11/21/09



November 17, 2009

Mommy and Annabelle


Relaxing together at Benjamin's Lantern Walk earlier tonight

Follow up Appointment - 11/17/09

Today was a follow up with the pediatrician after last weeks shunt revision. Thankfully all seemed fine except for some increased spitting up. Annabelle is scheduled for her VCUG on December 1st.

10 lbs 7 oz
didn't measure her length
39 cm (head circumference)

November 14, 2009

We are home

To tired to write anything else tonight but wanted to make sure everyone knew we got to come home. Annabelle is asleep in her bed and I can't wait to get into mine!

Thanks for the prayers everyone.

THANK YOU!

Mom: Thank you for all of your help this week. We are so grateful for the wonderful care you gave our children. Thank you for always being willing to adjust your schedule no matter what to take care of them. Thank you for playing with them, feeding them and bathing them! Thank you for loving them as much as we do. We have NO idea how we would get through these situations without you.

Mingie: Thank you for coming down yesterday to help with the boys. Thank you for being there for them. Thank you for playing with them and being silly with them! Thank you for making dinner for us all and helping to get them to eat it :-) Thank you for cuddling Benjamin when I left ~ my heart was breaking for him and I was so grateful that you were there to take care of him.

We LOVE you both very much!

November 12, 2009

Time to recover

The surgery went well and I was able to be with her in the recovery room. They said she was pretty inconsolable before they brought me back at about 3:30. They gave her some pain meds and that seemed to help a bit. I was able to rock her and feed her while we waited for her room to be ready. We are in the room now. It's on the second floor of Miller's Children's West. It's different up here. This is where the "chronically ill" children come. It's a different feel. It's a 4 to 1 nurse ratio so you don't seem them much. Thankfully, it's a private room so that helps a lot.

She is medically doing well, but visibly seems to be having a lot of discomfort. She's crying a lot and her face is red. Bran is rocking her right now and trying to comfort her. He will be leaving soon to relive my mom and be home with the boys. My little Ben was so sweet on the phone, but was sad when I told him I couldn't home tonight. He's still so little and I wish I could hold him to. Jack my "big boy" seemed happy when I talked with him. They just finished dinner and were watching a movie. Doesn't get much better than that, right?

Annabelle will have a kidney ultrasound in the morning as well as a VCUG test to look for signs of kidney reflux. We are hopeful these test will come out negative and that this UTI was just one of those things and not connected to a bigger issue. I am unsure when baby Belle will be coming home but I am hopeful it will be this weekend.

As always, thank you for all of the love and support. We will update again when we can.

Shunt Revision Surgery # 2
























Our sweet little Annabelle is currently having surgery to correct her malfunctioning shunt. We arrived at the ER this morning at about 9:00 am and they have been poking at her every since. She's so little and now dehydrated from the vomiting that they were having a really hard time drawing her blood. They tried both arms, her hand and both feet. She was crying SO much ~ much harder than she has in the past. I truly can't think of anything worse than seeing your child cry in pain. Having to try and kiss away the tears streaming down her face while helping to hold her down for them to draw her blood. This truly feels like hell. I am so sad and I am so angry that she has to go through this again. I would literally do anything to take her pain away. She is such an amazing little girl with such a beautiful smile.

The test also found that she has a Urinary Tract Infection. We know these are very common in children with Spina Bifida and will be treated with antibiotics but it does add a new element to this situation. According to the Pediatrician they will need to run a whole series of tests (mostly focusing on the kidney's) after the surgery to see if anything is going on there that may have caused the infection.

Although we are deeply saddened that this has happened again we are so grateful for the wonderful care that she is getting. Dr. Javahery is a top notch Neurosurgeon and we were lucky enough to have Dr. Alexander the head of Anesthesiology working right along side of him.

After the horrible part of handing Annabelle off to the doctor's I of course completely broke down. I feel so very lucky to have Branden's loving ams to wrap around me and hold me tight. We are both in so much pain, but are so grateful to have each other. I can't imagine having to go through these situations without him. He truly is my rock, my love and my everything.

Thank you Lord for my family, my friends and all that I have. I beg that you please watch over our sweet Annabelle and put your healing hands on her.

Heading to the ER

Vomiting has continued and the Dr. wants us to head straight to the ER. She will most likely ave another shunt revision today. Please keep all of us in your prayers. The boys are not happy that their mom and sister will not be coming home again tonight.

I will update again as soon as I can.

November 11, 2009

More signs the shunt is malfunctionng

She still has a full fontanel
She was super sleepy today
She's started vomiting this evening

I'll be calling the Dr. again first thing in the morning. I know I need to get to sleep but I don't want to stop holding her. I just love her so much and my heart aches thinking of the discomfort she must be in.

PS - I don't have a picture but Annabelle looked so adorable today in the super cute jean/ladybug outfit that she got from her great, great cousin Rachel.

November 10, 2009

Oh what a day!

Branden and I both noticed that Annabelle's fontanel seemed to be "bulging" a bit, which is a drastic difference from her normal sunken in post surgery fontanel. Of course we were concerned since a bulging fontanel is typically indicative of a non-working shunt. It's been just about 6 weeks since her shunt revision and the the thought of going back in for surgery just breaks our hearts.

I knew that I needed to call Dr. Javahery, her Neurosurgeon and let him know. His immediate response this morning was to send her for a CT Scan. Although, I may complain (a lot) about how much we pay for our health coverage, I must admit that we do have good coverage for the most part. We are very lucky that when a Dr. believes that a procedure is necessary we always get approval and typically within a very reasonable amount of time. I have read stories from other moms in my Spina Bifida group that sometimes have to wait weeks to get an MRI or a CT Scan for their child. Waiting to know if your child is going to be okay or if they will need surgery is a very stressful thing and each day you are left worrying most be horrible. Thankfully our Dr. was able to arrange for Annabelle to get her CT scan today. We had to wait a little more than an hour because we were an "add on" to the schedule but we got it. Annabelle was very patient the whole time. She was actually cooing and just being a sweetie.

I don't think I will EVER get comfortable seeing Annabelle strapped down on a table with her head placed between cushions to keep it straight. Even though I knew she wasn't in any pain it was still very difficult to witness. However, in typical Annabelle style she was calm and composed and got through it perfectly or should I say GRACEfully :-) After the CT Scan we headed over to the doctor's office to discuss the results and have him take a look at Annabelle.

So, the results, well that's the tricky part. Her ventricles look good ~ in comparison to how they looked before the last revision. Although she felt a bit more full in the fontanel and pulseatile (his word) the shunt does appear to be working. Obviously, this is good news, right? Well, I don't think it's that cut and dry and truly either does the doctor. It's really going to be a bit of wait and see right now. If her heard circumference grows or her fontanel becomes more full or bulgy than we will need to have another CT Scan which will be compared to the one done today. This is exactly what happened last time. She had a CT Scan, all looked good. Three weeks later we were back having another CT Scan and subsequently having a shunt revision the following day.

So for now the decision is to move forward as normal. We have decided to not sit and worry ~ it's a waste of precious time and energy. Secretly I worry, but I am trying hard not to. My mommy instincts tell me that the shunt is either not working or at least not working optimally. However, until we know more there really isn't anything we can do.

Thank you to those who sent Annabelle and I prayers and positive thoughts today. It was a long day and I appreciated knowing that you were all right there with me. We left the doctor's office with 20 minutes to get ourselves over to Annabelle's physical therapy appointment at 2pm. Amazingly she did AWESOME! I had totally prepped the PT with how much Annabelle had been through and that we left the house at 10:30, excuse...but to both of our surprise she tolerated 50 minutes of PT.

That little girl is so strong and so inspiring. She brings us so much joy each day. We will certainly keep everyone updated on any changes in Annabelle's condition.

November 5, 2009

Reading before bed


Annabelle is typically asleep before we start the "bedtime routine" with the boys so she misses out on the nightly book reading. However, tonight she was wide awake at bedtime so she got to listen in. It was great seeing the three little ones with their daddy before bed. We hope she will develop a love of books like her brothers have.

Benjamin couldn't sit still long enough to be in the picture so I just got Jack and Annabelle this time. He's so wiggly sometimes video works better for him :-0

Too many stretches today!

I worked SUPER hard in physical therapy today and I wasn't very happy about it. Just check out my bottom lip in these top two pictures.









Today was a good PT session although Annabelle did cry a lot. She's building great head control and we are very pleased with her progress. They did find some tightening in her shoulders that we need to start working on ~ yes, that means MORE daily exercises! It's kind of non-stop, but we know that it's important. The concern with the tightening is that she is curving her torso a bit which could in turn weaken her spine. It's good they caught it now so we can address and correct the problem and prevent any potential future problems.

Check me out - I'm wearing jeans!

It's hard to get a good picture when you can't sit up yet, but we had fun trying. It really was fun, I just didn't feel like smiling on camera today.