GI Check Up

Last week I took Abigail to her GI check up. It was a positive appointment overall. Her doctor doesn't want to see her again for 4 months because she is pleased with her growth. That is music to my ears friends because that means her next appointment won't be until July when I am off of work. :) yay!

Abigail weighed 19 pounds 7 ounces and she has grown an inch in length since her last visit 3 months ago. I can't believe she is headed to 20 pounds. She has come a long way since her birth weight of 1 pound 11 ounces. 

Abigail still doesn't care to drink much and this does affect her size. She is in the 15 percentile for her corrected age.  Some days she hardly drinks anything but a few ounces. Then there are days when she drinks all of her bottles to the last drop. Abigail just has a mind of her own. 

I am thankful she likes to eat. She enjoys sitting in her high chair and feeding herself. She doesn't want to be feed anymore and she makes that perfectly clear when she puckers up her lips and pushes your hand away if you try to feed her. Again... She has a mind of her own. 

She currently likes to eat apples and ravioli and she loves cookies. She even says cookie now. :) 

Her doctor wants us to start introducing whole milk into her diet, so we will see how she does with that. I gave her one bottle over the weekend and she wasn't interested. Abigail is currently on Pediasure which is a high calorie formula. Luckily since her doctor prescribes it, insurance covers the cost of it. 

I will keep you all posted on how she does with the whole milk. 

PTSD

I have read a few really good articles about parents who had children in the NICU and how they struggle with Post Traumatic Stress Disorder now that their NICU life is over. 

I kid around and say yeah... that's me, but the truth is Yes! That is me!

I live maybe 2 miles from the hospital that sent me out by helicopter to a bigger hospital with a level 3 NICU. I am fortunate that my local hospital acted quickly and got me to a hospital that could actually give me the level of care I needed and the girls needed, but man do I HATE the sound of the helicopter now. 

I can hear the helicopter clear as day from my house and I cringe when I hear it. It's like the helicopters path is directly above my house. Whenever I hear the helicopter I am immediately reminded of all the hard times. It's very strange how I can be having a completely normal day and then BOOM here comes the stupid helicopter. 

My journey began with a terrifying helicopter ride, so I assume that is the connection.  Literally right as the helicopter paramedics moved me from the hospital bed to their gurney my water broke. I was 23 weeks pregnant. 

The helicopter ride took about 20 minutes. The crew was amazing and so kind to me. It was like they were angles sent to calm me down and comfort me. Along the way I got so scared and nervous the medic had to remind me to breathe and they had to give me oxygen. The medics were amazing, but the flight terrified me. I couldn't see out the window because I had to lay completely flat.  I just kept thinking the whole ride  ...this is bad... I am on a helicopter and they only send people out on helicopters when it is bad.... This is bad...

Once the helicopter landed I was taken to a pregnancy ICU area. Women there were all experiencing some type of serious medical problem while pregnant. For example, the woman in the bed next to me needed some type of surgery while she was pregnant. 

I stayed in the ICU area for 3 days. Those 3 days were the hardest part of my bed rest. I couldn't eat, couldn't drink, and I had a catheter.  I also had to stay on a delivery bed. And boy are they uncomfortable. 

While I was in the ICU a NICU doctor came to visit me. She went over in detail the seriousness of my situation. She went over all the terrifying statistics and all the many medical complications that can occur when you have a preemie. Several of the things she mentioned actually happened, but despite their extreme prematurity my girls still have done well. 

About 2 weeks after Abigail was home from the NICU she ended up getting her second hernia. She had to me transferred by helicopter to Children's in DC. If you are counting friends, that's 2 helicopter rides in 6 months. Ridiculous!  That was also a horrific experience for me and yet again there is another helicopter involved.  It's one thing for me to have to be transferred by helicopter, but seeing your child get sent off is a miserable experience that I can't even put into words. 

So fast forward to today. My

beautiful girls are now a year and a half and they are just amazing little people. I can already tell my "PTSD" is getting better and I think the time passing by is helping. When I hear the helicopter coming I don't see flashes of images from my scary 3 days in the ICU and I don't vividly

remember the look on the nurses and paramedics face when my water broke. I now just get a sinking feeling in my gut. It still really bothers me, but I try to focus on the positive and remember how blessed I am. 

The truth is even though I have been through a truly awful situation it could've been worse. And not to mention I really like the person I am today. I am stronger, more compassionate, and thankful. I just have some minor details to work out that's all.

 I just pray no more helicopter rides. 

And now some cute pics. 

  

I Don't Have An Excuse

I recently came across this picture again and it got me thinking. I normally just post about preemie stuff, but this is a special post for all my mother friends out there! :)

This message makes me mad for several reasons.

1. You had your make up and hair done, so you don't always look that 

bright-eyed and bushy-tailed yourself. 

2. Don't assume I am making excuses. I have a life and it's a really good life. I don't think it could get any better, even if I had those abs. 

3. She is a little misleading in her message. She works at a nonprofit that encourages people to be in shape, so it's basically her job to look like that. I applaud her efforts and work, but if I had her job I would be in better shape too. 

4. Do not assume I don't like the way I look just because I don't look like you. I like me. I like my curves. You don't get to be the judge of me and how I look. I only get to do that. 

5. You sound like a bully. You are not encouraging at all and you sound arrogant and rude. Women should be supportive of one another. We shouldn't make each other feel bad about the way we look. It can be hard sometimes to find the time to go to the gym. If you are anything like me, it's hard to say no to a cookie or a donut when you really want one. She makes it sound easy and it's not.

Can you tell I really don't like the picture or the message? We are all just trying to do our best.  Don't shame me into working out lady. It's not helpful and makes me dislike you! 

I am a school teacher, so I spend a lot of my evenings when I am not with my own children thinking about lesson plans and ways to help kids learn to read. It seems that she spends her extra time working out.  It's a personal choice how we dedicate our time, but I think my time is better served. I am helping shape future lives. You are just shaping your butt.  

The girls are getting older so I have just started working out again. I go to Zumba and yoga during the week. If I don't make it to a class one day it's no big deal. I do what I can and I see a lot of my mom friends out there who do the same too. I think the important message is to try to be healthy and make good choices. Our lives can be perfectly fulfilling without abs and no body fat. 

Learning Disabilities which often affect preemies.

LDs – What they ARE and are NOT

There are many misconceptions about learning disabilities (LDs), which often affect preemies. Here is a quick review of LDs – first, the misconceptions, and then the truth.

LDs are NOT…

• the result of laziness.

• caused by a child’s home environment or cultural factors.

• the same as autism.

• the same as an intellectual disability (formerly called “mental retardation.”) In fact, persons with LDs have average or above average intelligence, and some are gifted!

• all the same. There are various kinds and degrees of LDs (mild to severe) and a child can have more than one kind.

• curable, and a child will NOT outgrow them. But they are treatable and most kids that receive appropriate educational interventions and supports overcome obstacles.

• associated with blindness or deafness.

LDs ARE…

• often unidentified or under-identified. Many students (as much as 15%) struggle in school as a result of having a learning disability that is not diagnosed or treated.

• prevalent.  Almost half (42%) of kids receiving special education services are children with learning disabilities. Roughly 2.4 million children in public schools in the U.S. have been identified as having LDs.

• more common in boys. Two thirds of students identified with LDs are boys.

• treatable. Through appropriate educational programs, kids with LDs are able to learn in school and succeed in life.

• brain based disorders, and often co-exist with attention problems.

• often seen to run in families.

The key to success is…

• getting a diagnosis as early as possible.

• getting help and support in place. “Specific learning disability” is one of the 13 conditions that qualifies a child for special education and related services.  (The other 58% in special ed have the remaining 12 qualifying conditions.)

• providing positive reinforcement so that a child’s self-esteem is not damaged.

• understanding your child’s diagnosis so that you can be an effective advocate for him. Arm yourself with information. See prior posts for general info on LDs, and specific info on dyslexia, dysgraphia and even dyspraxia and CAPD (cousins to LDs).

Have questions? Send them to AskUs@marchofdimes.com.

Source:  Data for this post provided by NCLD’s 2014 publication of “The State of Learning Disabilities: Facts, Trends and Emerging Issues.”

I found this article on March Of Dimes Facebook page.

 

An afternoon at the park

The weather was nice this past Saturday so Dan and I took the girls to the park.  They both got to go down the slide on Dan's lap and ride on the swings. It was a great afternoon. I am looking forward to  more family outings together. Come on Spring!!!!! :) 

Preemie Diapers... Can you believe it?

I just had to share this picture because it demonstrates the size difference between a newborn diaper and a micro preemie diaper. 

 Micro preemie diapers seriously look like small doll diapers. I am not afraid to admit that I honestly didn't even know they made diapers this small before I had the girls. 

I can still remember how amazed I was when I watched the NICU nurses change a diaper for the first time. They moved so quick and they were never afraid to move them around despite how fragile they were. 

I can also remember the first time I changed a diaper. My first diaper was Abigail's. Her nurse that day was Carrie and she was so nice and supportive. I was very terrified to do it the first time. It's a horrible feeling to be afraid to touch your child because you don't want to hurt them.  I had changed babies diapers before, but nothing like that. 

As time went on I became more confident and with practice I wasn't so scared. It wasn't how I imagined my first diaper experience would be, but that's okay. 

Looking at this picture it's hard for me to even believe Abigail and Elizabeth actually wore those little diapers. Looking at this really reminds me how far they have come and it brings back so many memories. 

When people ask me... How small were they? I think I should just show them this picture from now on. It really puts it into prespective. 

Picture Collage

My sister-in-law made the cutiest collage of the girls. It's so cute I had to share it! Thanks again Jessica. I love it. 

What It Means To Be Born at 26 Weeks

No More Oxygen!

HOORAY! What great news! No More Oxygen!!

If you haven't already heard the good news, Abigail is officially done with oxygen. Abigail spent the first 9 months of her life on full time oxygen. As time went by, we were slowly able to take it away. 

The last 6 months Abigail only used oxygen at night. She failed her first sleep study because she had several episodes of apnea during the night. Due to the apnea, we had to keep her on oxygen while she slept. 

The oxygen at night was a big headache. She constantly pulled it off of her face and she would even fight us when we put it on her. Abigail is very strong willed. I wonder who she gets that from?! Wink, Wink :)

Her most recent sleep study was February 20th. I got the call from her doctor Tuesday with the good news.  

No More Oxygen!

Abigail will need to repeat her sleep study again in 6 months. There is also a chance  she will need her adenoids removed. Abigail still has obstructive apnea and we will discuss if she needs them removed with her Ear, Nose, and Throat doctor next month. Keep your fingers crossed she won't need them out. I can't stand the thought if her needing a 3rd surgery in her short life. 

Here is a pic of all the oxygen that was at my house. Sooooo glad to see it go! 

And here are some cute pics of the girls...Can't leave them out!

Do You Ever Think Why Me?

Over the weekend we had dinner with Dan's family for his birthday. My mom watched the girls so we could go. While we were there Dan's grandmother surprised me with very heartfelt question.  

She asked If I ever looked at other children and asked myself why my children had to have special needs and other children are just running around? 

The question really surprised me. She was very genuine and her thoughtfulness    touched me. I never knew she felt that way or wanted to know how I felt. I was happy she asked. 

The truth is yes, there was a moment in time that lasted for about 1 minute that I thought why did this happen to me? Why did I have to have a child with CP and another child with eating issues and lung disease? After that one minute of feeling sorry for myself, I realized how absolutely ridiculous I was being. Nothing good comes from feeling sorry yourself and I have nothing to feel sorry for.

Abigail and Elizabeth are amazing. They amaze me how strong and determined they are. They amaze me how smart they are. They amaze me with what they can do with their disabilities. There is nothing to be sad about. I feel lucky and fortunate. 

I have to take the girls to Kennedy Krieger and Hopkins for their appointments. I sadly see lots of kids that are much more sick than my girls and have way more challenges. I don't feel sorry or sad because I know how it could have turned out to have twins at 26 weeks. 

World Rare Disease Day

Feb. 28th is World Rare Disease Day. 

"There are nearly 30 million Americans-and millions more around the world-affected by rare diseases," said Peter L. Saltonstall, president and CEO of NORD. "Everyone knows someone with a rare disease. But, while many of these diseases are serious and lifelong, most have no treatment and many are not even being studied by researchers. This leaves patients and families without hope for a better future."

A rare disease is one that affects fewer than 200,000 Americans. There are nearly 7,000 such diseases affecting nearly 30 million Americans.

World Rare Disease Day was launched in Europe four years ago and last year was observed in 46 nations. It is always observed on the last day of February.

Cerebral Palsy (CP) is a rare disease. I continue to learn more and more about CP as the doctors appointments contiune. You never think that your child will be the one with a "rare disease" but to me Elizabeth is perfect. We will do whatever it takes to make her a wonderful life.