New Shoes and a Ridiculous Encounter

My mother and I took the girls to Montgomery county on Sunday to get them some new shoes. 

I know driving over an hour to get shoes seems silly, but their Orthopedic at Kennedy Krieger highly recommends a shoe store called Shoe Train. They are just like any other kids shoe store, but they are experts in fitting kids that have orthotics. 

You can check out their website at 

http://shoetrainpotomac.com

The employees there are great. We received excellent customer service and they are very knowledgable. Getting shoes to work with an orthotic can be tricky, but we got the girls some really cute and functional shoes. 

Our trip wasn't all great though I have to admit...

While Elizabeth and I were looking at the different shoes on the displays, I heard another customer start to talk about Elizabeth to her friend. 

The conversation went something like this:

Random Lady 1- "Oh, that poor girl. Look at her. That's so sad."

Random Lady 2- "Yes, that is sad. Look at her hand in that brace... That is so sad." 

Random Lady 1- "So, so sad."

Me- "There is nothing sad about her and do not say she is sad. Do not look at my daughter and say she's sad. You should really mind your own business."

I picked up Elizabeth and we walked to the other end of the store. I found my mom with Abigail and told her what happened.  This was the first time a  stranger has said something about Elizabeth. Yes she may have CP, but I am not ever going to let her think of herself as "sad" and I am certainly not going to let some ignorant lady call her sad. 

We were shortly called next and the girls got fitted for their shoes. 

This whole situation got me thinking about how ridiculous some people are.     I have to be honest, it tugged at my heart some. It makes me sick to think about how cruel people can be. Elizabeth is perfect and I will stick up for her and fight for her until the end of days. 

This pic was right after we got home from the trip to the store. The girls are enjoying cookies at grandma's house. They are wearing their new shoes. :) 

The Preemie Parent Exchange

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

Something Cute

Just a couple of cute sayings.

I couldn't agree more! :) 

Extreme

According to this chart my girls were "extreme." No real surprise there. Everything was extreme. The 145 days in the NICU was extreme. Abigail's time spent on the ventilator was extreme. The amount of times Elizabeth dropped her heart rate, stopped breathing, and then turned blue was extreme. My anxiety level was extreme. I can go on and on here but I won't. 

I would have given my left foot for my girls to have made it to any other section of this chart, but thats just not what happened. 

I remember being jealous of babies that were 30- weekers in the NICU,  but I also know for those parents it is a stressful situation too. 

The truth is having a baby in the NICU is extremely hard no matter what.  Just one day in the NICU is hard. If you are a parent out there with a little one in the NICU keep strong! Just love your baby to the extreme and take it one day at a time. It is a roller coaster with extreme ups and downs, but you can do it. You're stronger than you think. 

RSV-say it ain't so

This has been a long week and I am glad to say both girls are healthy. 

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!