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.  

RSV One Year Later

This time last year I was in the hospital with Abigail while she had RSV.

It is RSV season out there now and it isn't anything to be taken lightly. 

RSV is something that is dangerous for any baby and young toddler and it is extremely dangerous for any child with lung disease. 

It was a very scary 4 days and I can't explain how fortunate we were that Abigail was able to fight it off and bounce back.

I have reposted below the blog I posted once we got home from the hospital. It outline what happened for anyone that is interested. 

I hope everyone has a Happy New Year. I  am looking forward to being home with my family and not in the hospital this year. We have spent too many holidays in the hospital. 

December 29, 2014

On Sunday afternoon I noticed Abby wasn't herself. I checked her temp and it was 102. This totally caught me off guard because she was acting like herself all morning. Since her temp came out of no where I thought it would be good to check her oxygen level on our machine at home. To my surprise her oxygen was only 90%. Scary, scary stuff!  We were told by her Pulmonologist to not let it get lower than 94%. We gave her, her inhalers and she still wasn't able to come up. We were left with no choice but to call the ambulance.

The ambulance took her to our local Hospital. I like to say upfront that I'm not a big fan of our local small hospital because they just don't have the ability to take care of little kids. When we got there she got a chest X-ray and the attending ER doctor said that she had pneumonia. The doctor went on to say that she needed antibiotics and wanted to send her on her way home. Well being the mom I am, that wasn't good enough for me. There was no way I was going to leave with her oxygen level so low. I requested that the doctor give her Pulmo doc a call at Hopkins. She really didn't want to do that, but she did say the attending pediatrician would come and talk to me and Dan.

While we were waiting for the pediatrician a Respiratory therapist came and gave Abigail a breathing treatment. Her oxygen level didn't really improve and at this point I requested that she stay on oxygen for a while. This made me very frustrated that I actually had to request the oxygen myself and that no one else could see on the monitor that she needed it. 

Then her nurse said that she needed an IV. This is the point that I roll my eyes and begin to anticipate a fight. She attempted to put an IV in her despite my disapproval. It took Dan and I both to hold her down while the nurse tried to do her job. Abigail had a complete meltdown and screamed at the top of her lungs. There is nothing worse than seeing your child in pain and scared.  I explained to the nurse before she even started that she was extremely hard to get a successful IV in and no one at this hospital had ever got an IV in her before. She told me that she has been a nurse for 11 years (thanks for tooting your own horn) and that she could do it. Well I knew that 11 years working on adults really means absolutely nothing when you are dealing with a 2 year old Micro preemie who has had more IVs and blood transfusions than most people have in a lifetime.  Let's just say she failed and I called it.

Finally the pediatrician came and talked to me. He said that Abigail would get 2 more breathing treatments and would be sent home with antibiotics. I went ahead and started to tell the doctor all of Abigail's medical history and he started to write it all down. You could tell he started to realize that this isn't your average patient. He went ahead and ordered a test to see if she had the flu or RSV. He finally agreed with me that she needed to be sent to Hopkins where the new her.

The ambulance took about 2 hours to arrive to get her and she was finally transferred to Hopkins. Dan went along in the ambulance and I quickly ran home and got clothes and toys together because I just knew she was going to be admitted. I arrived just after the ambulance did a little after 1 AM. 

Once we got to Hopkins I immediacy felt better. The nurse got her IV in the first try and they monitored her in the ER and quickly got her admitted. The Pulmonologist on call didn't agree that she had pneumonia and thought that she had a viral infection. I wasn't at all surprised the first ER doc was wrong. Both the rapid flu and RSV test came back negative. They admitted her and put her on droplet isolation, which means anyone in her room needed a gown, gloves, and a mask. She was kept on oxygen and they began breathing treatments every 4 hours and started antibiotics a steroids.

 After 2 days I could already see a change in her and she was able to go without oxygen when she was awake. Late Tuesday night doctors told us that she indeed had RSV and that her culture grew. The course of meds would not need to change. Thank God! Despite the RSV the doctors were pleased with her recovery and of course they went on and on about how cute she is. Abigail did so well that we were able to go home Thursday night. 

She is still on her antibiotics and steroids and will need them both for a few more days. Her oxygen level is doing great at home. She is a fighter! 

Ever since we left the NICU I have been really worried that one of my girls would get RSV.  The last 2 winters the girls qualified for the RSV vaccine, but the vaccine isn't given to kids once they are 2. When the doctor said she had RSV I felt defeated, but also I expected it too. It was a strange feeling. Abigail has chronic lung disease and I always knew this could happen. I am just thankful for the wonderful doctors at Hopkins who acted quickly.

 I am also proud of myself for not letting the first ER doctor send us on our way. This is just a reminder that Dan and I are her biggest advocates and we have to fight for her. 

Thanks for all the prayers friends! 

Now the girls are together again!