Happy Homecoming Anniversary Liz

Elizabeth has officially been home from the NICU for 2 years today! 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 actually transferred to a "step down" hospital called Mount Washington Pediatric Hospital in PG county. She had to remain in the hospital because she would drop her heart rate when she drank from 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. This kind of makes me laugh now because she still eats fast today.  

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 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.  It was miserable. 

Finally after almost 3 weeks of the girls being separated 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

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

Elizabeth is a very happy girl and she has the most beautiful smile. She enjoys coloring and she loves music and dancing.  She works so hard at therapy each week and she has truly amazed me how far she has come since her CP diagnoses. I am so proud of her! Happy Homecoming Anniversary Liz. Mommy and daddy love you!

 

Constraint Therapy Take 2

Elizabeth will be starting another round of intensive therapy at Kennedy Krieger next month. The program is called The Intensive Pediatric Constraint Induced Movement Therapy Program. Fancy name right?! 

Elizabeth’s Physical Medicine doctor and Orthopedic really encouraged us to do the program again. It was explained to us that she will most likely need this therapy every year. 

The therapy program is an intensive 23 day program. She will start this round on March 17 and it will go until April 16th. I will have to take her to Kennedy Krieger every day for a 3 hour session. Yes, 3 hours! I have to admit I am terrified. Last years program was only 1 hour a day, so this is a big change. 

The therapist at Kennedy Krieger 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 muscles in their weaker arm and hand. 

The cast was removable last year and it didn't have to stay on longer than 2 hours a day. This time the cast will stay on the whole 4 weeks, all day long. It is waterproof so she will be able to take a bath with it on.

It's going to be a very big adjustment for her, but we gotta go for it. Anything that will help we will try. Pray that we all can stay strong and the therapy is a success.

I am hoping to get into the Ronald McDonald House again.  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  right before she starts.

I'll keep everyone posted on how it is going. 

Snow Day!

One good thing about being a teacher is Snow Days!!!

Today was a snow day and the first time my girls experienced the snow. They were very interested in just walking around in the snow and looking around. They also liked throwing snow balls and being on the sled for a few minutes. It was a fun first snow with the girls.

All dressed and ready to go play!

On the sled with daddy. 

Feeding Tube Awareness Week!

It's Feeding Tube Awareness Week! 

Abigail came home from the NICU with a feeding tube and required several feeds throughout the day. If we had to go to a doctors appointment the feeding pump and equipment came too. Dan and I had to learn all about working a feeding tube pump and aspirating the tube. We basically became like nurses. I can remember how nervous we were the first night home from the NICU. We were left to set and operate the pump all by ourselves and boy were we scared, but like everything else we figured it out. It's crazy all that we have learned on this preemie journey. 

Abigail had her tube for about a year so she could gain weight and grow. It was a hard choice deciding the feeding tube was right for Abby, but it truly was the best choice. 

This week is designed to bring awareness to the feeding tube and all the various reasons a feeding tube might be needed. You can check out more info at: Feedingtubeawareness.com 

Happy Homecoming Anniversary Abby!

Today marks the 2 year anniversary of Abigail coming home from the NICU. It was a very special day but also a terrifying one. Abigail came home on oxygen full time and she also 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.

2 years later she no longer needs oxygen and has been discharged from her GI doc. She has had a few surgeries since leaving the NICU, but she continues to be so strong. 

Abigail is truly amazing. She is spunky, funny, sweet, and smart. It all makes for a perfect combination.

Happy Anniversary Abby. We love you! 

Interventions

Last year I attended a preemie conference in my area. I learned a lot of information about reaching developmental milestones and taking advantage of different therapy options. 

One thing that I enjoyed most of all was speaking to other preemie parents. We all share a special bond. It was comforting to know that I was not alone and there are other parents out there learning to take care of preemies just like me. 

I remember speaking to one mom in particular and our conversation really made me realize how well my girls were doing despite being so premature. I also felt unbelievably lucky to have the wonderful health care benefits that I receive from my job. 

The mom I spoke to told me all about her twins, who at the time were 20 months old. One of her twins has CP like Liz. He was 20 months old and was just learning to crawl. She told me that her insurance will only cover 26 visits a year. If you do the math, that is only 2 therapy visits a month. 

My heart hurts for this mom. She was clearly trying to do and learn anything she could to help her children, but insurance was causing a road block.  

Since Elizabeth is diagnosed with CP my insurance plan has NO limit on the amount of therapy sessions she can receive. When I think about how far my girls have come I know a lot of it is because of all the OT/PT therapy they receive.

The conversation with the mom made me realize how much this country needs healthcare reform. That 20 month old preemie should be able to receive all the therapy they need! But that's just me up on my soapbox. 

During the conference all the doctors and therapist stressed over and over the importance of early intervention.  I encourage new preemie moms out there to start therapy as soon as possible! I known it works. Abigail and Elizabeth are reaching milestones daily. They may still be a little behind, but I know it would be way worse without the interventions we have received so far. 

One Step Forward...

The NICU journey is a long and horrible one. I can remember getting up each morning and having no idea how the day would go. Sometimes it would be a slow and uneventful day and then sometimes I felt like I was running around like a chicken with its head cut off. 

When your baby is in the hospital you can make no long term plans because you live for the day. The old saying goes "one step forward and two steps back," but really at times it felt more like one step forward and a bunch of steps back. There would be a couple of good days and then one of my girls (or both) would get really sick or need a new test and have a set back. As they get bigger it does get easier and better.

 I can remember a nurse practitioner telling me that it really gets better once they reach 3 pounds. There  is a lot of truth to the statement, but the reality is Abigail and Elizabeth are micro preemies and we still have obstacles to face. I just keep the faith and enjoy the day. I still can't really make long term plans, but that's okay with me. 

If you are NICU/preemie mom I recommend to try not to worry about the future because it will drive you crazy. And when you think about one step forward and two steps back, just remember there will be a step forward! That's what I have to keep telling myself. :)