Wednesday, December 30, 2015

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

Saturday, December 26, 2015

Christmas Eve in the NICU

3 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. :) 

Saturday, December 19, 2015

Gingerbread Houses

Yesterday the girls built gingerbread houses in PreK and parents could come. 

It was a lot of fun. Elizabeth loved to put on the icing. Abigail wanted to eat all of the M&M decorations. Never have the words "please stop eatting Abigail" come out of my mouth until yesterday. 

It was a lot of fun! Stop growing girls!


Saturday, December 12, 2015

Update!

It's been a while since I have posted. I have been a super busy working mom recently. After working all day with 29 kindergarteners and then ending my day with twin 3 year olds I am pretty done by evening time. Sorry the posts gave slowed down some. 

was asked to post an update, so here it is. 

Abigail is doing well. She is still on the small side, but like I have said before- She sure doesn't know she is small! 

Abigail's orthopedic is happy with how she is walking. He even wants us to start giving her time without her orthotics on to help build up some of her foot strength. 

We are still giving her the eye drops to help with her lazy eye. And boy does she hate that!  

We do have some upcoming appointments for her. She will see her ENT doc soon and her GI doc soon. She continues to be on a lot of meds for her constipation and appetite. I am curious to see what her GI doc has to say. 


Elizabeth recently saw her orthopedic and  physical medicine doctor. She got a new handbrace made by an OT at Kennedy Krieger to help stretch out her left hand. She is wearing it for about 30 minutes each night. So far she is tolerating it, but not loving it. 

The big news is- She will get her first round of Botox in her hand this month on the 30th. Everyone is anxiously waiting to see how the Botox will work for her. Fingers crossed that she will get some benefit from it. The idea is for her to get some range of motion in her fingers. 

Her orthopedic recently told me that if she doesn't willingly start to use her hand more there isn't even a surgery that he can do at this time to help her. This was very concerning to me. I guess in the back of my mind I just hoped a surgery would help fix it and unfortunately that just isn't the case yet. So please keep the prayers coming that this Botox will help. 

Elizabeth is also set up to do her 3rd round of constraint therapy again at Kennedy Krieger sometime late Spring. More info to come on that later. 

Both girls are in PreK and loving it. Yesterday I asked the girls what they did at school and they told me all about making a snowman. They are getting too big!!!

Thanks for all the support friends! I'll try to keep you all updated more frequently! 

Next month I'll have a blog for PreemieBabies101. I'll be sure to post it for you all. 

Xoxox