Did you know?

A new study published in the journal Pediatric Research shows that boys are 14 percent more likely to be born premature than girls and are at a greater risk of developing a disability. 

"One partial explanation for more preterm births among boys is that women pregnant with a boy are more likely to have placental problems, pre-eclampsia, and high blood pressure," conditions which are all associated with preterm births, said the research team leader Dr. Joy Lawn. 

For the study, the researchers analyzed data from more than 15 million preterm babies worldwide. Of the 13 million who survived beyond the first month of life, 4.4 percent had mild disability and 2.7 percent had moderate or severe disability. 

 Info taken from CerebralPalsy.org #CPorgResearch

Hello Tubes and Goodbye Adenoids

I am sitting here in Abigail's hospital room reflecting on the day. It's been a very long day, but it is finally coming to an end. 

I woke the girls up at 4:45 AM to try to get them to drink something before their surgery.  Elizabeth willingly drank some juice and Abigail just looked at me like I was crazy.  I then got them dressed and ready to go. We got to the hospital at 7. The were scheduled at 9 and 9:30. 

Elizabeth was first. She had tubes placed in her ears to help with the many ear infections she has had. Her procedure was very quick and she was in and out. She did great and had no issues. 

Abigail was next. She had her adenoids out and tubes put it. She had to have her adenoids out to help with her sleep apnea and like Liz needed tubes to help with ear infections. 

FYI- Abigail does not like doctors and nurses. She has pretty much had it with them. Her days in the NICU and all of her doctors appointments have really put her over the edge, so I knew today would be a challenge. 

Once she was in the recovery room she became very upset. She has been under anesthesia before, so I knew it wasn't just waking up. Abigail was in pain and didn't want anyone messing with her. 

Her recovery room nurse was great despite Abigail's strong opinion of her. She stayed on top of her pain and did everything she could to make her happy. She ended up getting some extra pain meds to help calm her down. I was very thankful for that. 

After a few hours they moved us up to her room for the night. After a while I noticed her eyes were swollen  and she had a rash on her checks and under her eyes. The doctor thought she was having an allergic reaction, so they gave her Benadryl. 

Just my luck something else would come up. 

She is sleeping now peacefully and I am laying on the little parent bed next to her. She is so precious and I can't believe how strong she is. This is her 3rd surgery and she isn't even 2.  It doesn't seem fair, but it is the life we live. 

I still can't believe everything they have gone through and bring back at the hospital is just a reminder of our journey. A few doctors today said that they looked great...They are not just great, they are completely wonderful.   

Elizabeth Did It!

Elizabeth is finally done with her 4 weeks of therapy at KKI. I am going to be honest it was a very long 4 weeks. It was hard on her and very challenging for her. It was also hard on me at times. I hated being away from Abigail. 

Despite everything I believe the therapy was a success. Elizabeth is more aware of her left hand and she moves her left arm more freely. Before the therapy she paused before moving her left arm and she really had to think about it, but the therapy has helped her to instinctively move her arm more freely.  She is also transferring objects to her left hand better. She isn't able to grasp anything with that hand yet, but we are moving in the right direction. 

I did learn that she will most likely have to do the program again once she is up walking. We have no idea when that will be so we will just wait. 

Elizabeth is set to see her orthopedic and physical medicine doctor in a couple of months. We will just have to wait and see what is next for us.

Thanks everyone for your support! 

Ronald McDonald House... You rock!

Being back at the Ronald McDonald House has been a powerful experience. I like talking to the other parents because it helps me realize that I am not alone. Our situations are all different and our children all have different needs, but the fact is we all know what it's like to have a child who is need of serious medical support. 

Parents here just get it.  They understand the million doctors appointments or therapy appointments. They understand long hospital stays or watching your child be sent off to surgery. They just get it.  Friends and family try to understand and they mean well, but unless you have lived it, you don't get it. I didn't get it myself before I had babies in the hospital for 4 months.  My world is different and it's nice to talk to others who understand. 

Being surrounded by other parents in similar situations really is powerful. 

No one is judgmental. They ask questions about your child because they care. They may have even been through something similar or have the same doctors. It's really nice to talk to the other parents. 

Staying here also puts things into perspective. Despite the girls troubles and needs, some families are unfortunately having an even harder time. It helps me get grounded and reminds me to be thankful. 

Last week a family checked in with their teenage daughter. She was wearing a mask and she had lost her hair. I assume she is fighting cancer. 

When I saw her my heart dropped into my stomach. Despite all they were going through her family was smiling as they talked together. They are all so strong. 

A mom I met has her 2 month old son in the NICU. He wasn't a preemie, but he was actually born without the cells/enzymes to digest food. He isn't able to eat and will need a full intestine transplant in order to ever eat food. It is extremely rare. She is a brave mom. 

A dad I met has 4 adoptive children and they all have special needs. He was there with his daughter who had eating issues. She would only eat just a few things and was in an eating clinic to help her to accept more food. He was a great dad.  

Finally I met a mom who had her 3 year old adoptive son from China with her. She actually only has had him for one month and he already needed a surgery to fix a surgery mistake that happened in China. He wasn't able to urinate due to a severe blockage. He has had a surgery to repair the mistake but they are expecting several more in the future. She too was a brave mom  and he was a brave boy. 

All of these parents are so strong and they keep moving. They don't give up and it is encouraging to me. I am so thankful for the Ronald McDonald House.  It's amazing a place. 

Eye Patches

About 10 months ago Abigail's eye doctor confirmed my suspicion about her eye and diagnosed her left eye as "lazy."

Her eye doctor instructed us to begin patching her good eye to force her weak eye to get stronger. We were told to patch her 2 hours each day. We tried our best to patch her, but we had difficulty with getting her to keep it on. 

Her doctor instructed me to literally put swim floats on her arms to stop her from pulling the patch off. Well I didn't care too much for that idea, not sure any moms would, so I did some research to find out which eye patch brands other moms liked. 

While doing my research I came across the Ortopad brand. It was highly recommended by other moms which I liked. I ordered a box and I was very pleased. The patches stay on a lot better than the brand we were previously using. The old ones just took one little tug and Abigail could pull them right off.  The Ortopad brand isn't easy for Abigail to remove but easy enough for an adult to take off.

I am very happy with the product. We have finally been able to get 2 hours each day with the patch on which never happened before. I recommend this product to any parents out there who are struggling with patching their child.   

Ortopad comes 50 in a box and they aren't real expensive. I order mine from Amazon. They even come in cute patterns. :) 

International Kangaroo Care Awareness Day!

Today is International Kangaroo Care Awareness Day! 

The kangaroo hold is a safe way for moms to hold their preemie babies. The baby is placed on the chest on direct skin. The baby only wears a diaper so they can feel your skin. It is a wonderful time for a mom to bond with her baby, but it is also beneficial for the baby. The skin-to-skin helps comfort the baby and can even help with stabilizing their heart rate and breathing patterns.

 Elizabeth was about 3 weeks old before I could hold her.

 

Abigail was about 6.

 I can still remember the first time I got to do the kangaroo hold with them. I was nervous because they were so small, but it also felt amazing to hold them for the first time.  

So to all the moms out there in the NICU world take some time and celebrate today by Kangarooing! 

Elizabeth in action

Here are 2 videos from today's therapy session. Elizabeth is doing so great!

Popsicle Time

Grandpa bought us our very first Popsicle. Abigail wasn't sure what she thought and Elizabeth loved it.

Tummy Troubles and Other News

As some of you may know, Elizabeth has had nothing but diarrhea  and loose poo since January. Sorry so gross but that's my news for the day.  If you don't like poo talk you should stop reading now. :) 

I was able to get Elizabeth in to see Abigail's GI doctor who I love. It was difficult at first to get her an appointment because she is not currently seeing any new patients according to the scheduling line. Well let's just say it pays to have your doctors personal e-Mail address because when I told her the scheduling line wouldn't let me make a new patient appointment with her she quickly e-mailed me back and gave us authorization to see her. Point for me! 

Any who, Elizabeth's appointment was this morning at 8. I told the doctor in detail everything that I have done to get her tummy troubles under control. 

-BRAT diet 

-pedialyte 

-probiotics

-soy milk

The doctor was impressed with everything I have tried and agreed that something was off.

I would like to mention that I took Elizabeth twice to the pediatrician before this and they had no real concern because she was still gaining weight. Well I still have concern because having nothing but diarrhea for 4 months isn't normal. It pays to have good insurance because I didn't even bother with getting a referral. 

Her doctor ordered blood tests to see if anything pops up. They will check for food allergies, a vitamin deficiency, celiac disease, and they will also run a full blood work panel. They took 7 vials of blood.  Yes seven! She screamed her head off and it was miserable. We will get the results in about 1 week or so. 

The doctor did mention something called "toddler diarrhea." It's name says it all. It's literally that toddlers get diarrhea. I am hoping it is that, but even the doctor thought it was possibly more. She says it's been going on for a while so she wasn't convinced it was just that.

Of course I will keep you posted. The life of micro preemie is never dull!

Abigail also had a pulmonology appointment today and it went really well. Since she had an appointment today she stayed the night with us at the Ronald McDonald House. We learned that se will have to repeat her sleep study in July. This makes me sad, but we got to do, what we got to do. The good news is her doctor decreased her inhaler and her lungs sounded good and clear. Woo hoo!

After the appointments we headed to Elizabeth's therapy at KKI. She was very fussy, but I really think she was still mad about the blood work. 

It has been a long, long, long day. It was so nice to see Abigail. I miss her already. I will be home tomorrow, so I will get more time with her. I can't believe we have almost 2 weeks done already. 2 more weeks to go! 

Abigail photobomb!

Happy Nurses Week!

This week is neonatal nurses week. 

I wanted to take this time to thank all the amazing nurses that took care of my girls at University of Maryland and at Hopkins.

You were supportive to me and took care of my girls when I couldn't. 

You were there when I was a nervous reck. 

You were there when we had joys.

You taught me how to change their diapers when they were first born.

You also taught me how to hold them for the first time. 

You taught me to advocate for them and to speak up when I thought someone was wrong. 

You took my calls at all hours of the night.  

You encouraged me to get some rest and to not feel bad about taking a break. 

You were honest with me, but you were also reassuring and gave me faith.

You helped me in so many ways, but most important you cared for my girls and took wonderful care of them.

There is a  hopeless feeling when you can't take care of your own child but I trusted you. You took care of my children like you would have taken care of your own. 

THANK YOU!  THANK YOU! 

You all have touched my life in so many ways and you will always be apart of our journey. Thank you all and God bless. 

March of Dimes Walk

Here are a few pics from the March of Dimes walk. We had a great time today and our team raised about $700! Way to go team Preemie Turner Twins! 

Here is a picture of the shirts I made the girls. The 26 weeks was on the back. 

Tomorrow we start week 2 of Elizabeth's therapy. Elizabeth and I are back at the Ronald McDonald house for round 2. 

This weekend Elizabeth actually helped me put her cast on. I am hoping that is a good sign for this week.

As always I will keep you all in the loop. :) 

1 week down... 3 more to go

Elizabeth has officially completed week 1 of her therapy. The first few days were very hard. She doesn't cry but she is upset. She kind of yells in frustration at times which is difficult to watch. The cast is very heavy and it is hard for her to hold up the extra weight. It just really surprises me with all our modern technology there isn't anything else she can wear that would do the same job but wouldn't be so uncomfortable and heavy.

As the week went on I think she got a little more comfortable with it. I am surprised that I can notice a little difference already with the use of her hand. I pray it continues.

Being gone was hard. I really missed Abigail. It was the first time I have been away from her since she came home from the hospital. Thank goodness for FaceTime and video messages.

I am at staying at the Ronald McDonald House again. I haven't been back since the girls were in the NICU. There was a moment that I got a little teary-eyed while I was there holding Elizabeth. I just thought to myself that last time I was here I didn't even know if you  would ever get better. She has come a long way and so has Abigail.

When I am at Ronald McDonald House I see other parents and how tired they look and it reminds me that I am not alone. There are other parents out their dealing with difficult situations too and they could be even harder than mine. It helps me realize I am not alone and things could be even worse. 

We have 3 more weeks of therapy to go. Elizabeth has already worked so hard, but I know she is tough and will keep it up. Next week both girls have some additional doctors appointments at Hopkins so it will be a busy week. I of course will keep you posted. 

I want to say thank you to my amazing friends out there that took the time to wish us luck Monday morning or contacted me this week to see how she is doing. You are all an amazing support to me and true friends.