Sunday, December 28, 2014

Signs Your Child May Have 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


Friday, December 26, 2014

The Graham’s Foundation

The Graham’s Foundation is a foundation specifically for preemie parents. It is a non-profit organization founded in 2009 by Jennifer and Nick Hall in memory of their son, Graham.  The foundation supports the parents by providing free care packages during their journey in the NICU and transition home.The foundation's website provides a place for parents to share their stories and find support. 

When my girls were in the hospital my mother requested a care package for my girls from the foundation. The package was great and it let me know that people were thinking about me and I wasn't alone. To any NICU parents out there I really recommend that you visit the website. On the website you can communicate with other NICU/ preemie parents. The website even has cool merchandise you can buy like T-shirts and buttons to support preemies.

If you are not a preemie parent but you are looking for a way to support preemie/NICU parents, you can make a donation directly on the website or you can buy something at their online auction online. All the money they receive helps support preemie parents like me. I am very thankful for all the good work the Graham’s Foundation does.



You can visit their website at http://grahamsfoundation.org/home.html

Thursday, December 25, 2014

Merry Christmas!

Merry Christmas from our home to yours!

On this day I am reminded of the Christmas we all spent in the NICU. I feel so blessed for Abigail and Elizabeth's health. With every day they grow smarter, stronger, and more amazing. 

I want to send a special thanks to all the doctors and nurses working today to help others stay healthy. Thanks for all you do. 

Wednesday, December 24, 2014

Christmas Eve

2 years ago on Christmas Eve, Dan and I were surprised by one of our favorite NICU nurses. She arranged with the respiratory team and the doctors for our family to be together and spend some time together just the four of us. With a portable heart monitor and oxygen, Elizabeth was able to take a visit to Abigail's hospital room. The girls were just a few rooms apart, but it would be the first time that our family would be all together. It was truly the best Christmas gift anyone could have given me. It's so hard to believe that we spent last Christmas in the hospital and today the girls are crawling and laughing. I feel very blessed! 

In this picture I am holding Abigail and Dan is holding Elizabeth. 

I hope everyone has a wonderful holiday. 

If you are a Parent of a child in the NICU this holiday my advice is to try to make the best of it. The truth is it really just stinks, but just focus on how beautiful your baby is and remember its only for the time being. It won't be this way next year. :) 

Sunday, December 14, 2014

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.  




Friday, December 5, 2014

Surgery Take 4

took Abigail to the surgeon on Tuesday for an office visit. I noticed that her old feeding tube site was starting to leak. Her GI doctor recommended that the surgeon see her because it wasn't usual. 

The surgeon said that the area did need to be repaired and that he would need to do a quick surgery to fix it. 

While we were there, I pointed out a small bump she has above her belly button. My suspicions that it looked odd were correct. Turns out that she has another hernia. This is her third hernia. Poor Abby!

She will also need to have the hernia repaired, so both things will be done on December 15th. 

This will be her fourth surgery and she is only 2. She is such a trooper. 

Please keep her in your prayers. 
 

Saturday, November 29, 2014

Trip to Storyville

Today we took a trip to Baltimore and visited Storyville. 

Storyville is located at 2 different public library locations in Baltimore County and it is designed for kids under 5. 

We met up with our good friends Anna, Bruce, and Nick. It was a really fun day. I can't wait until we can do it again. 

Check our the pics. 



Saturday, November 22, 2014

Chicken Pox, Eye appointment, and ENT appointment- Oh My!

So this week was officially crazy. My girls both had the chicken pox vaccine last week and Elizabeth ended up getting the chicken pox. Just our luck right?! 
Luckily she didn't have a really bad case and she was her normal self. She was able to get over them quickly, but Thursday and Friday she ended up with a fever, which I thought was odd because she was pretty much over her chicken pox. 

Dan took her to the pediatrician Friday morning and she now has an ear infection. My poor baby. She can't catch a break. 

Abigail never ended up getting the chicken pox. Knock on wood she doesn't ever! 

We had an eye appointment and ENT appointment scheduled for both girls this past week, but since Liz had the pox she had to stay home and Abigail just went ahead to the appointment. 

Both of Abigail's appointments went very well. Her eye sight is the same as last time and she doesn't need glasses "yet." It is very common for preemies to need glasses, so I am pretty surprised so far we haven't needed them. 

Her ENT doc said she looked good and that both tubes are still there. This was news to me because we had two other docs say she was missing at least one of them. That's why it is always good to leave it to the specialist. She doesn't have to go back for 6 months so that makes me happy. 

Here are a few pics of my girls. I can't stress enough now incredibly difficult it is to get a photo of them both smiling and looking. 

And one silly pic of them fighting over the same toy... Any guesses who won?

Monday, November 17, 2014

World Prematurity Day!

Today is World Prematurity Day! 

Today I thank the nurses and doctors that work hard each day to save babies that were born way too early. You all do amazing work and I thank you from the bottom of my heart! Today I am reminded o the strength of my girls. They both are truly my heroes! 

It is hard to believe that two short years ago my girls were in the NICU fighting to live. I feel especially blessed today. 

Thursday, November 13, 2014

Tuesday, November 11, 2014

Preemie Support Groups

There are great groups you can join for preemie parent support on Facebook. It's a great way to meet and have conversations with other preemie parents.  All you have to do is search in Facebook. 

Here are some great ones I have found:
 
Micro preemie Support Network

Parents of Preemies Day  

Preemies Today 

Peek A Boo ICU


I also really like a group on Facebook called The Preemie Parent Exchange. The page is basically like a Craiglist for preemie parents. Parents can post extra supplies they have and parents can also request supplies that they may need.  


I find the groups really helpful but I do have a one suggestion worth noting. 
If you are the parent of a micro preemie I think it is truly best to stick with groups that are dedicated to just micro preemies in my opinion. 

Other preemies groups often have parents who post things about their 34-36 weekers and their issues/concerns are way, WAY different than micro preemies problems/issues.  There is a  reason there is the word micro in front after all. 

 I understand how devastating having a baby early (even if it's a week early) can be and I don't want to down play the seriousness, but the issues are different and I find it helpful to talk to others that have a similar situation. With that said, any time you can talk to another preemie parent it's helpful.

Share the knowledge friends!


Sunday, November 9, 2014

Preemie Parent Conference

Next weekend is a conference just for parents of preemies. We are so amazing we get our own conference!  :)

I attended last year and learned a lot. I am looking forward to going with a different perspective this year. The girls are 2 now and are doing more and more things each day. Preemies are at a high risk for learning disabilities and speech delays. Any new info to help us on our journey I'll glady take. 


Saturday, November 8, 2014

Kinetic Sand

Today I gave Kinetic Sand to the girls to play with. It is a play sand that you can ball together, similar to Playdough. 
I used a kindergarten teacher trick and put it in a baking sheet to help with the mess. 
Elizabeth loved it and Abigail liked it for about 2 minutes and told me "all done."

I am trying to find more ways for Elizabeth to use both hands. I actually got her to hold the pan with her left hand, so that was a positive. 



Happy weekend everyone!

If anyone has any ideas on ways to keep two toddlers busy over a cold weekend I would glady take any ideas! 

Sunday, November 2, 2014

10 Ways Your Life Changes

A good friend of mine who is also a fellow  micro-preemie mom shared this blog post on Facebook and I just had to share it with you all. 

1) You have acquired basic nursing skills.During my baby’s NICU stay I learned to give epo injections, insert an NG tube, read monitors, perform infant CPR, and various other skills. Many were required in order to take my baby home.

2) The smell of hospital food makes your stomach turn. With my stay on the high risk perinatal unit included, we have spent over one hundred days of Charlie’s first year in the hospital. I could happily live my life without ever tasting hospital food again. I don’t know why they serve it every year at the NICU reunion.

3) Sizes lose all relevance. Charlie fit into newborn clothes for three months after she came home from the NICU. At the age of two, she wears sizes twelve to eighteen months.

4) Simple questions become complicated. The questions that people generally ask new parents can’t easily be answered. It starts in the NICU with “When is he/she coming home?” Then it continues with questions like, “How old is your baby?” or “Are you breast feeding?”

5) You learn loads of medical terminology. You know what a physiatrist is. You understand what words and abbreviations like apnea, bradycardia, IVH, tachycardia, desaturation, bilirubin, CPAP, hematocrit, NEC, PVL, and ROP mean.

6) Baby showers are complex situations. Baby showers are emotionally loaded. If you are brave enough to attend one, you wonder how to socially appropriately join conversations about birth stories and pregnancy. All the while, you are trying to get over that feeling of being the elephant in the room (being the physical proof of one of the many ways a pregnancy can go wrong).

7) People constantly remind you how lucky you are. I realize we were lucky. We got to bring our baby home. However, there are days I don’t feel lucky. On some days, I feel like we lost. On those days, I resent people who feel the need to tell me how lucky we are. I wonder why people don’t feel the need to tell every mother of a newborn how lucky she is to have had a full term pregnancy.

8) Things are put into perspective. For me, facing the possibility of losing my child was looking my greatest fear head on. Everything else in comparison is small potatoes.

9) You almost become an expert on insurance policies. As much as insurance companies try to misguide you, you’ve managed to learn about automatic denials, appeals, DME coverage, and much more. You learn not to accept the first “No” as the answer. You fight and you fight like hell.

10) No accomplishment is ever small. I remember the date that Charlie first rolled over (January 27, 2013) and the date she took her first steps (January 7, 2014). She worked incredibly hard to reach these developmental milestones and nobody was sure that she would reach them. Every little thing, from tolerating food in her mouth to learning to wave, is a cause for celebration.


The above 10 ways are from a blog called Cheering on Charlie. It is another preemie mom's blog about her life with her preemie. 

Wednesday, October 29, 2014

A Secret NICU Gift

Two years go (can't believe it's been the long) I was left a very special gift by a caring NICU nurse. The gift was this cute Halloween card.

 When I saw it hanging I felt tears in my eyes. I never got the girls foot prints after birth, so this is the closest thing I got to it. I never actually figured out which NICU nurse left it for me, but I am certainly very thankful.

Happy Halloween everyone! 

Saturday, October 25, 2014

Happy 2nd Birthday!

Today my beautiful girls turn 2! Happy 2nd Birthday Abigail and Elizabeth.

Today was a perfect day. The weather was perfect and so was the view of the water. 

The girls were surrounded by family and friends.  I'm so thankful for all the people that are there for the girls.

2 years ago was the scariest day of my life. Having babies born at 26 weeks was terrifying. My girls had to fight to survive. That's all in the past now. Today was one of the best ever! I'm so thankful to have these two miracles in my life. They are amazing. 

Check out the picture from the day.