Feeding Tube Awareness

I am a little late but last week was Feeding Tube Awareness Week! 

It was Feb. 7th-13th

Abigail came home from the NICU with a feeding tube and required several feeds throughout the day. 

If we had to go to a doctors appointment, then the feeding pump and equipment came too. 

Dan and I had to learn all about working a feeding tube pump and aspirating the tube. We basically became like nurses.

 I can remember how nervous we were the first night home from the NICU. We were left to set and operate the pump all by ourselves and boy were we scared, but like everything else we figured it out. It's crazy all that we have learned on this preemie journey. 

Abigail had her tube for about a year so she could gain weight and grow. It was a hard choice deciding the feeding tube was right for Abby, but it truly was the best choice. 

Feeding Tube awareness week is designed to bring awareness to the feeding tube and all the various reasons a feeding tube might be needed. You can check out more info at: Feedingtubeawareness.com 

Happy Homecoming Abby- 3 years later

February 6th marks the 3 year anniversary of Abigail coming home from the NICU. It was a special day, but also a terrifying one. 

Abigail came home on oxygen full time and she also had a feeding tube. I can remember how scared I was the first night she was home. I was so nervous I would mess up one of her medications or I wouldn’t know how to work her feeding tube, but it all worked out in the end. 

Today she is making great progress and her doctors are very happy with her. Abigail loves to dance and look at books. 

I am so happy she is doing so well. Due has come a very long way!! Happy Anniversary Abigail! We love you.

8 Clinical Signs of Cerebral Palsy

Since cerebral palsy is most often diagnosed in the first several years of life, when a child is too young to effectively communicate his or her own symptoms. Cerebral palsy is a neurological condition which primarily causes orthopedic impairment. 

Cerebral palsy is caused by a brain injury or brain abnormality that interferes with the brain cells responsible for controlling muscle tone, strength, and coordination. 

 The eight clinical signs of cerebral palsy involve:

 • Muscle Tone

 • Movement Coordination and Control

 • Reflexes

 • Posture

 • Balance

 • Fine Motor Function

 • Gross Motor Function 

• Oral Motor Dysfunction 

 I noticed that Elizabeth had very tight muscle tone and her gross and fine motor function on her left side was different from her right side. I noticed this when she was about 5-6 months old. 

Her doctors at Kennedy Krieger diagnosed her with a neuromotor abnormality at first but after an updated MRI and a visit with her neurosurgeon at Johns Hopkins it was decided that she did have CP. If any parents have any questions about her CP, please feel free to ask. I am happy to discuss what we have been through so far. 

It has been a difficult road and it can be hard to see your child not move and get around like other children, but I am so proud of how far Elizabeth has come. She amazes me every day. It's so important to keep up with physical and occupational therapy. Without the therapy I know she wouldn't be able to do the things she can do now. 

  I found the above info from CerebralPalsy.org #CPorgInformation

Due Date Anniversary- 3 years later

3 years ago on the 27th was my actual due date. When I look at Abigail and Elizabeth, it is so hard to believe that 3 years ago they were still in the hospital. Sometimes I think to myself - how in the world did you go to the NICU every day for 125 days?  

Abigail and Elizabeth are doing a lot of the same things a typical 3 year old toddler can do, and because of that I feel totally blessed.

When I look back at the last 3 years I can hardly believe what we have overcome:

-feeding tube and feeding issues 

-oxygen 

-4 hernia surgeries

-ear tubes twice

-adenoid removal surgery 

-a CP diagnosis
-an Ehlers-Danlos diagnosis

-frequent ER visits

-RSV and a week in the hospital

-a week in the hospital with a feeding tube malfunction 

-lazy eye

-5 Sleep studies 

-Torticolis

-MRI

-allergy testing  

-orthotic fittings

-ABR and other Hearing tests 

-hip X-rays 

-and tons and tons of OT and PT
-EEGs
-3 endoscopes
-stigmoidoscopy
-rectal biopsy
-2 rounds of constraint therapy
-Botox

hmmm... I feel like I am still missing something!  We have been through a bunch... But we fight on!

Here is a cute picture that Abigail's primary nurse from the NICU sent me 3 years ago on my due date. They have always been so beautiful!  

These shoes are made for walking

We have had a ton of snow here and schools have been closed. I took advantage of the snow day and took the girls shoe shopping at our favorite place Shoe Train in the Cabin John Mall.  

Elizabeth recently got a new orthotic because she out grew the other one. Since she got a new orthotic she needed new shoes too. Abigail on the other hand has new orders from her orthopedic to start wearing her orthotics a little less to help build up her foot strength. I needed to get her shoes that she could wear with her orthotics or sometimes without. 

I know driving over an hour to get some shoes seems silly, but the place is amazing! Her Orthopedic recommended the store to us because they are so knowledgable about fitting children with the appropriate shoes. This trip was our third trip there.  

Shoe Train is just like any other kids shoe store but they are experts in fitting kids that have orthotics. You have a child or know someone with a child who wears orthotics in the area you have to tell them about this place! I seriously don't know what we would do without them.  

You can check out their website at 

http://shoetrainpotomac.com

Elizabeth's new orthotic

Elizabeth's new shoes

Abigail's new shoes 

Cabbage Patch Preemie

Did you know that in 1985  Cabbage Patch Kids actually came out with a preemie doll? 

I recently came across an article about odd toys sold in the 80s. I was truly shocked when I saw this toy and just had to share it with all of you. 

The preemie doll was three inches shorter than the regular Cabbage Patch Kids and came complete with tiny diapers and very little hair. They also smelled like baby powder like the "regular" Cabbage Patch Kids.  

According to the article, The Preemie packaging boxes even listed information from the March of Dimes on the definition of a premature birth, along with details of complications and how to care for a Preemie. I would love to get the chance to see the information that was listed on how to "care for your preemie."

The Preemie Cabbage Patch brand even had accessories like additional preemie clothing you could purchase, sewing patterns to make your own clothes, paper dolls, and even a preemie cake pan. -Seriously a cake pan. Strange right?

This whole marketing idea was truly strange. I'm just glad they decided to stop the idea all together.