Orthopedic and Physical Medicine Doctors

Last week we took another hike up to Baltimore for doctors appointment with their orthopedic and physical medicine doctor at Kennedy Krieger Institute. 

I really like both of the doctors and I find them very professional, smart, caring, and intelligent. Great qualities in a doctor. Their physical medicine doctor is usually accompanied with one other person, but her orthopedic always comes in with a team. And when I say team, it's like him with 4 or 5 other people. Usually it's a physical therapist and a few students that are working under him. Med students always like to see my girls. After all, they are pretty awesome and might micro preemies. 

Elizabeth was first up to see the doctors. Both of her doctors were very happy that she is up on her feet and moving. Her balance is good and most importantly her hips looked good. Sometimes children with CP can have hip problems, but her hips have continued to look great. For that I am thankful. She will have a repeat hip X-ray in 6 months, which I expected. 

I told her orthopedic that I was concerned with her left knee because when she stands it appears to be hyperextended at times. He agreed with me and has prescribed a different type of orthotic for her. This will be her third. Her knew orthotic will be at a 5 degree angle forward to help her knee to not become hyperextended and go backwards. I'll be taking her this Wednesday to get fitted for that. And like always I'll post pics so you can see what it looks like once it comes in. 

When it comes to Elizabeth's hand, the doctors are more concerned. It is still very difficult for Liz to open up her left hand, which in return, prohibits her from really using it like she should. Her physical medicine doctor recommended another round of constraint therapy at Kennedy Krieger. He pretty much said to plan on going once a year, every year from now on. This means another month of extensive therapy. I am waiting to hear back from Kennedy Krieger for when she will be going. I wasn't surprised she was going to need it again. I was actually happy he recommend it. Whatever she needs, she will get!

Abigail was up next. She ran around and said hello to each doctor and nurse that she saw. She is really coming out of her shell. The doctor still believes she needs her little orthotics, but it is the goal to get her off of them in a couple of years. Her ankles are still weak and her right foot still likes to "V" out some. They were happy overall with how she is doing and she doesn't have to go back for a year! Yay! That's music to my ears. 

I am very happy with how the appointments went and equally happy that we have doctors at such an amazing place like KKI.

I'll be post again soon when I know when Liz will be starting her constraint therapy again. 

23 Months Old

Abigail and Elizabeth will be 23 months old tomorrow (20 months corrected). I can't believe in just one month the girls will be 2 years old! Time flies!

Here is an update:

The girls are still in daycare and loving in. On Saturday and Sunday mornings they get dressed and say bye-bye because they think they should be going to daycare. Cute right?! 

They are not content at all just being home now. They want to go! They both even say go-go and head for the door. :)  I do not blame them at all for wanting to "go-go."  They were stuck in the house for so long when they had to be cocooned inside to protect their lungs. Now they want to explore! 

The girls both know a bunch of words now and of course they love to say no. They even have started to tattle on each other to me. One points at the other and says no-no. It is cute but also effective! They are letting me know when the other one is doing something they shouldn't. Makes my job a little easier. I have a feeling this is just the start of then bossing each other around. :) 

They are both spoon feeding themselves easily now and want no part of me helping them to eat. They really think they are big girls now. 

Abigail likes to march and run. She likes cows, our play kitchen, and books.

Elizabeth is walking now and still continues to love our dog Lucy.  She also likes puzzles and playing with blocks. 

They are doing so well and they fit right in with their friends in the group at daycare. So proud of my girls! 

County Fair

Last weekend our family went to the Charles County Fair. I have been going to the county fair since I was little, so it's really neat to take the girls some place I spent time as a young girl. 

Check out the picture from last year at the fair. 

They sure have grown!

Now look at the pic from Sunday. :)

This is my new favorite picture!

Here are a few other pictures from the day. My parents came along too. Thanks grandma for riding on the rides with us.

The girls really loved the rides! 

And this is how the day ended. 

Happy Neonatal Nurses Day!

September 15th is Neonatal Nurses Day!

I have said it before and I'll say it again...

NICU nurses are the real rockstars! 

Thank you for all that you do! You're amazing! 

4 appointments - 1 Day

When I say there was 4 appointments in one day, it was just that. Friday both girls had to have a check up with their Audiologist and they also had an appointment with their ENT doctor too.  If you're counting that's 2 appointments a piece, so that makes 4! 

My supportive husband Dan and his mom (the girl's Nana) made the trip to Johns Hopkins today with the girls. I would like to take a moment and thank them both for going. I know it makes for a long day.

The girls have a few important appointments coming up in the next two weeks so I sat this one out. I unfortunately don't have an endless supply of leave, although that would be nice though right? 

When they said it takes a village...they really weren't kidding!

Abigail and Elizabeth have both been following by an Audiologist at Hopkins ever since they failed

the baby hearing test in the NICU. When I said failed, I am being a little dramatic. They actually call it "being referred" but being referred also sounds kind of odd too. 

Let's just say they didn't pass their hearing test. :) This again can be a preemie thing. Like everything else in their body, their hearing was under developed as well.

They both had to have their hearing check today for 2 reasons: 

1. Check to see how they were hearing 

2. Check to make sure that the ear tubes that their ENT doc put in didn't impact their hearing

Their audiologist said that Elizabeth's hearing was good and it was constant with the findings and results from her ABR hearing test last February. The ABR test is a hearing test that they actually put you under for. It's pretty accurate and gives you an insight into what pitches you can hear and stuff like that. 

As I write this I just thought.. Man have we been through a lot. 2 years ago I had no idea what any of this stuff meant and now look at us. Okay, back to the appointment.

Abigail's hearing test results today were a little different from before. The test revealed some hearing loss in her left year, so now they are considering having Abigail do the ABR test as well. If she needs it, it will be her 4th time under anesthesia. The doctor will be contacting me soon with her recommendations.

After the audiologist appointment the girls went on to their ENT appointment, which luckily is on the same floor. Their ENT doctor was happy with how their new tubes are doing. Their doctor will like them to come back in 6 months. I love it when they say come back in 6!

In 2 weeks we have orthopedic appointment as well as NICU follow-up. As always, I'll keep everyone posted. 

   

It is NICU Awareness Month!

September is NICU Awareness Month.

This month is an opportunity for me to reflect on where my girls started and how far they have come. 

After spending 120+ days in the NICU, your world is no longer the same.

I have seen my girls fight to live, as well as many other babies. The NICU is a whole world most people have no idea even exists. You may have heard about a NICU, but unless you have been inside a level 3 or 4 NICU, you honestly have no idea.

So here is some insight into what's it's like:

1. It can be a loud place.  It's not loud from babies crying, it's loud from the constant beeping of heart monitors and the running of ventilators and oxygen machines. 

2.  NICU nurses are rockstars. They are awesome nurses with amazing and unique set of skills. They can draw blood from the tiniest veins, anticipate health scares, change diapers and handle babies that weigh just a pound,  soothe distressed parents, insert catheters and feeding tubes into tiny babies, and they assist with scans, intubations, and oxygen levels. They do lots more but you get the idea... They are the heart of the NICU. 

3. Not just small preemies are in the NICU. Babies born with all types of health problems spend time in the NICU.  Health problems I had no idea even existed. 

4. Generally the NICU is not a happy place. Doctors and nurses are very seriously working, parents are grieving their child's existence in the NICU, and babies are living an unnatural life. It's not uncommon to see a mom cry. Most parents just walk around nervous and scared. It's almost like a place parents go to turn into zombies.

5. You have to scrub in when you enter a NICU. Some places require you to wear a gown too. 

6. Babies live in isolates. People always call them incubators, but Incubators are for bird eggs friends. :) The isolate is designed to mimic a mother's belly. It is temperature controlled and as the baby gets bigger, the temperature changes, until finally the baby can warm themselves. Preemie moms spend their time putting their hands through the wholes in the isolate to touch their babies. The first time I touched my girls was through the wholes of an isolate. Nurses also do a lot of their work through those holes... Once again NICU nurses are rockstars. 

7. Life in the NICU is a roller-coaster. Not the fun kind that makes you go whoo-hoo either.  Some days are uneventful in the NICU and some days are full of test after test. Things can change in moments and sometimes things stay the same for days. It's unpredictable with lots of ups and downs. 

8. You can surprisingly build friendships in the NICU. I am now dear friends with a fellow NICU mom. We have been through a lot together. We are a constant support to each other and it's a support only a fellow NICU mom could give.  I am also friends with nurses the girls had. We check in with each other on Facebook. They love to see pictures of the girls and I know they are proud of how far they have come. 

I hope the above 8 things give you a little insight into what it's like in the NICU. Remember it's NICU awareness month! If you know a mom who spent some time in the NICU, it's a good time to giver her a pat on the back. Chances are

She has been through a lot.

Preemie Diapers

I posted this before but I just had to share this picture again because it demonstrates the size difference between a newborn diaper and a micro preemie diaper. 

 Micro preemie diapers seriously look like small doll diapers. I am not afraid to admit that I honestly didn't even know they made diapers this small before I had the girls. 

I can still remember how amazed I was when I watched the NICU nurses change a diaper for the first time. They moved so quick and they were never afraid to move them around despite how fragile they were. 

I can also remember the first time I changed a diaper. My first diaper was Abigail's. Her nurse that day was Carrie and she was so nice and supportive. I was very terrified to do it the first time. It's a horrible feeling to be afraid to touch your child because you don't want to hurt them.  I had changed babies diapers before, but nothing like that. 

As time went on I became more confident and with practice I wasn't so scared. It wasn't how I imagined my first diaper experience would be, but that's okay. 

Looking at this picture it's hard for me to even believe Abigail and Elizabeth actually wore those little diapers. Looking at this really reminds me how far they have come and it brings back so many memories. 

48 Hours

I know I haven't posted in a while, so this is long over due. The truth is I have had a crazy, crazy week. 

School was back in session on Monday and I have a busy but cute group of kids. It was an unusually busy first week for me at school which required a lot of my time. 

Then on top of everything Elizabeth has been fighting a cough for 2 weeks. I took her to Patient First last week because I wanted to make sure her lungs sounded okay. The doctor there who obviously knew nothing about preemies and children, barely spent any time listening to her lungs, and just dismissed it as just a cold and sent us on our way without antibiotics.

We did what we normally do-

Humidifier, Vicks plug-in and Vicks on the feet. We also started her on both of her emergency inhalers we have for her when she gets sick-Flovent and Albuterol. 

She continued to cough at night and a little during the day, but it seemed like she was getting a little better. Then on Thursday night, I noticed that she felt warm so I took her temp. It was 100.5, so I gave her some Tylenol to bring her temp down. I checked her throughout the night and continued the Tylenol every 4 hours and I also alternated with Motrin. About 5:30 I took her temp again and it actually went up even with the meds to 101.7. She then threw-up on the living room carpet. 

Well, I had a decision to make.  It was 3 hours until the pediatrician's office was going to open and there was no guarantee I would get an early sick appointment, so I made the decision to take her to the ER. I immediately texted my teammates  at school and called my boss to let her know I was headed to the ER. 

I told the ER doc that she has been fighting this cough for 2 weeks and that now she was running a fever. I also went over her extensive medical history and explain that she did have chronic lung disease due to her prematurity.  He too didn't seem to know much about preemies with lung disease (nothing new for us) because he too didn't prescribe an antibiotic even though I pushed for one. I was pretty mad when we left. The ER doctor said she had bronchitis. Well, whenever an adult has bronchitis they get meds, so I left there upset. Luckily my grandmother was able to watch Liz so I could go into work late.

Saturday morning I went ahead and called the pediatrician office and got her a sick appointment. She was still running a fever around 100. - something even with regular meds. Her pediatrician listened to her lungs and they of course sounded "junky"and she even said that since her body has been fighting it off for 2 weeks, it was clear at this point she can't shake it. She prescribed her an antibiotic! Yay! Finally!

After the appointment I decided to take the girls to my mom's house so Dan could shampoo the carpet since Elizabeth threw-up on it the morning before. We gave Liz the first dose of antibiotics and I continued to give her Tylenol and also Motrin, alternating them. 

Around 1:30 Liz started to look very pale and I took her temp under her arm and it was 103 and still going up. Under the arm is 1 degree cooler, so it was really 104 and going up. Scared me to death!

My mom and I immediately ran and put her in the bath to help bring her temp down. After 20 minutes in the bath, her temp only went down to 103 and she still looked very pale and her eyes looked glasses. We made the decision to call 911. An ambulance came and got her and immediately took her to the ER. Yes, the ER again- we were just there the day before.  I toed the ambulance, which made my stomach turn from all the bumps. Elizabeth cried the whole way. I couldn't sit close enough to calm her down and watching her cry without a way to comfort her was a completely miserable feeling. I wanted to cry too. 

When we arrived to the ER a nurse there even said "They were here yesterday." Umm... Yeah we were! Now find out what's wrong! 

We were there for about 4 hours and they gave her a higher dose of Tylenol and Motrin and her temp finally came down. The ER doc (who was different from the day before) said that she felt that the antibiotic really just needed time to work. We were discharged and able to go home. I checked her temp all throughout the night and we were instructed to alternate Tylenol and Motrin every 2 hours. 

Today Elizabeth is finally feeling better and her temp is staying under 100. :) thank God. 

This leads me to my final point of the day-

I knew that she needed an antibiotic and I wish I would have threw more of a fit with the first ER doc or even took her to the pediatrician the same day instead of waiting until the next day. I learned a lesson this weekend. Go with your instincts moms! You know what's best for your child. 

I'm just happy she's feeling better!