Happy Homecoming Elizabeth!

Elizabeth has officially been home for 1 year! Happy homecoming Elizabeth! You are a very special girl and you are loved so much. 

As some of you may be aware, Abigail actually came home from the hospital before Elizabeth. Abigail was able to come home sooner because she had a feeding tube and she was still on oxygen. 

After Abigail was discharged from Johns Hopkins Elizabeth was transferred to Mount Washington Pediatric Hospital in PG county. She had to remain in the hospital because she was dropping her heart rate when she drank her bottles. It didn't happen with each bottle, but she wasn't able to leave the hospital until the problem got under control.  She basically drank so fast that she wouldn't take a breath. 

Despite her being a little closer to home, the time when Abigail was home and Elizabeth was still in the hospital was extremely hard. I was able to really bond with Abigail and develop a schedule and poor Elizabeth was still stuck in the hospital. I watched Abigail during the day and then visited Elizabeth at night when Dan got home from work. I cried every night when I left her in the hospital and my heart literally felt broken. 

Finally after almost 3 weeks she was able to come. It was seriously one of the happiest days of my life. My family was finally all together.

 

Coming home from the hospital

Finally back together with my sister

The first thing I did when I got home with Elizabeth was put both girls are my lap

 

Exhausted

Do you ever feel like you have so much to do that the thought of actually doing it all exhaust you? That is how I have felt lately. 

My life consists of work, appointments, phone calls to doctors and therapist, balancing the family schedule, paying bills, checking in with the babysitter, being a mom, being a wife, laundry, keeping the house clean, food shopping, more laundry, fighting with insurance, and on and on. Did I mention the laundry? 

I love my life, but at times it's hard.  I feel like I could actually sleep for days if given the chance. 

This is life though. This is reality. Everyone has hard times. Life sometimes gives you curve ball and sometimes it gives you a big fat juicy ball right down the middle for you to crush. 

It's just how it goes. 

I look at my girls and I can't believe how far we have come. On Wednesday Elizabeth will officially been home a year.  I am truly blessed and proud of my family. My life is hard now, but I keep telling myself it won't always be this way. Appointments will slow down. I won't have to fight with insurance so much.  Things will just calm down.  Until then I will just have to drink lots of coffee and enjoy how completely wonderful my daughters are and continue to do lots of laundry. :) 

Please Help!

Please help if you can. The March of Dimes is a wonderful organization that helps support preemies. 

http://www.marchforbabies.org/mbfturner

Abigail's Sleep Study Take 2

Abigail had her second sleep study last night at Mt. Washington Pediatric Hospital in Baltimore. The nurse stated that she did have apnea last night. :( Sad news! This was not what I wanted to hear.

Now the fun part... Waiting!  We will have to wait 1-2 weeks to hear back from her doctor about the results. 

The nurse never had to turn on her oxygen which is good. I pray that this study went well. I really, really, really want the oxygen out of my house, but I am realistic too. If she needs it, then she needs it. 

The waiting game just stinks. I will keep you all posted when we know more. 

Baby Treadmill Time!

Elizabeth recently got her own treadmill. The purpose of it is to help her with her waking. Walking is hard for her due to her left side CP. She doesn't mind the treadmill and we try are best to make it exciting. Currently her physical therapist has her walking on it 3 times per week. 

She uses the harness to help her with her back support. She is wearing her new orthotic on her left foot and she also has a new shoe insert for her right shoe. 

Who ever knew there was such a thing as a kid/baby treadmill?! We are learning so much. 

It's Feeding Tube Awareness Week!

It's Feeding Tube Awareness Week! 

Check out Feedingtubeawareness.com for some great info.

Abigail came home from the NICU with a feeding tube. She had it for several months so she could gain weight and grow.  She has done well, but the truth is she is still on the small side. She continues to drink high calorie formula and she is followed by a GI doc at Johns Hopkins.  

Babies and young children all over suffer with slow weight gain. It's good to know you are not alone. 

The Intensive Pediatric Constraint Induced Movement Therapy Program.

Elizabeth will be starting an intensive therapy program at Kennedy Krieger at the end of April. The program is called The Intensive Pediatric Constraint Induced Movement Therapy Program. Elizabeth’s Physical Medicine doctor really encouraged us to do the program.

The therapy program is an intensive 20 day program. She will start April 28^th and will go until the end of May. It is 20 sessions long. I will have to take her to Kennedy Krieger every day for an hour session. The therapist will actually cast her good arm (her right arm) and she will receive physical therapy and occupational therapy on her left arm. The program is designed to help the individual build up muscle in their weaker arm and hand. Currently Elizabeth does not really use her right arm and hand. It is the doctors hope that with this therapy she will start to use it more.

The constraint therapy program she is going to do is specially designed for children under 2. There are other programs for older children as well. This program is very intensive and it is really going to be emotionally draining because Elizabeth is going to get very upset. Pray that we all can stay strong and the therapy is a success.

I am hoping to get into the Ronald McDonald House again in May. I do not want to have to take her every day back and forth. It is a lot of driving and time spent in the car. It would be 3 hours of driving per day. That is 15 hours a week in the car! I really don’t want to have to put her through that. Pray we get it in friends! We will not know if they have an opening until the middle of April most likely.

 

I will keep you all posted on how the program is going.

 

You can find out more info about the program here:

http://www.kennedykrieger.org/patient-care/patient-care-programs/outpatient-programs/constraint-induced-and-bimanual-therapy

March of Dimes Maryland Report Card

The March of Dimes does amazing research. One of the studies they complete each year is an evaluation of the premature birth rate in each state. They call this report the report card. 

Maryland got a C. Not so great. 

The good news is the premature birth rate percentage in Maryland is decreasing, but it's a slow process. 

You can check out how other states did at MatchofDimes.com 

Welcome Home Abigail- 1 Year Later

February 5th marks the 1 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 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. It is amazing what a difference a year makes. She is now on oxygen just at night and she no longer has a feeding tube. She is making great progress and her doctors are very happy with her. Abigail loves to dance and look at books. She is very verbal and likes to play independently. I am so happy she is doing so well. Happy Anniversary Abigail! You have finally been home a year!

Happy Birthday Mommy!

I wanted to post this yesterday, but with the nasty stomach flu running my house crazy I didn't get to it.

Not only am I 30 years old now, but I feel that I am a whole lot wiser. This past year has put a lot of things into perspective. 

Last year my birthday was spent in the NICU. Here is the best birthday present ever... 

A few of the nurses at Hopkins surprised me with it. I love it so much! 

The party hats say Happy Birthday Mommy! <3