One Step Forward... A Bunch of Steps Back

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. :) 

7 Doctors and Keeping It All Organized

These are the 7 doctors that follow my girls regularly.

GI Doc

Neurosurgeon

Eye doctor

Audiologist

Pulmonolgist

Pediatrician

Developmental Doctors

When the girls were in the NICU no one really prepared me for the amount of doctors appointments that would be in our future.  I don't mind the appointments, but there can be a lot of paperwork and things to remember.  

For some reason my brain has developed some type of super memory power because I can  tell you anything you need to know about their medical history starting from day one. This isn't true in other areas of my life. I am the type of person that usually has to write myself a note to remember. I can remember everything, but I needed a way to organize all the paperwork I received after each appointment. 

I have always liked to be organized so I now keep a binder with all of the girls important documentation. I totally recommend this is other NICU/preemie moms. The amount of paperwork you will get will totally surprise you. I have dividers in my binder to help me stay organized. Some of my dividers include pulmonary, GI, and NICU Follow-Up. This seems to be the only way I can keep track of all of their records and documentation. I even have a separate binder for their physical/occupational therapy documentation. 

For their first few doctors appointments I brought the binder with me so I could refer back to it if I needed it for anything. I don't bring it with me anymore,  but after every appointment I file away their appointment documents in the binder. 

I totally recommend NICU moms to get yourself a binder or develop your own method of organization because there will be a ton of doctors appointments and documents in your future. 

Preemie Parent Conference

FYI- Here is some information on a conference for preemie parents. Sounds really wonderful. A specials thanks to my Aunt Jenn for sending it to me!

More County Fair Pics

Here are some additional pictures from our family trip to the fair. We are counting down the days to Flu and RSV season. :( This might be our last trip out for a while.

Puppies and Babies

There isn’t anything cuter than puppies and babies! Last weekend we took the girls to our county fair. At the fair there was a puppy tent and for $1 you could go into the tent and play with all the puppies. Elizabeth is in love with all dogs so we had to take them in. Elizabeth loved every second of it and Abigail enjoyed herself too. Check out the pictures of the girls with the pups.  I bet you say awwww! :)

My Stressful Week

I have had a very stressful week trying to figure out the child care situation for my girls. As some of you are aware, our Au pair was just not right for our family. She really had no experience with infants so she is gone. Abigail and Elizabeth are unable to go to a child care center yet because of their weaker lungs and immune systems. I have been worrying myself sick and losing sleep trying to figure this out. I keep the faith that someone perfect will pop up. As a mom of preemies this is just another situation where I just tell myself to keep on moving! If you are a NICU/preemie mom out there having a bad week also, I pray that you keep on moving too!

Enjoy these cute pictures of the girls! 

Rub-A-Dub-Dub

The girls started to get their baths in the NICU. It broke my heart when I learned that I wasn't the first person to give my girls their bath, but it's just the nature of the beast when your little ones are in the NICU. Abigail's primary nurse at Hopkins learned quickly that she loved to take a bath. When her health was up and down one thing was certain, a bath always calmed her down. Her heart rate and respirations leveled out. She also would get a good nights sleep. Elizabeth didn't mind taking a bath during her NICU days, but she didn't exactly love it either. Today Abigail still enjoys her bath and she splashes so much that water ends up everywhere. It always makes me laugh. Elizabeth enjoys her bath too, but like with everything else she does she is very serious and likes to check everything out. 

Check out these adorable bath pictures from last week!  

Sept 15th is National Neonatal Nurses Day!

Happy Neonatal Nurses Day to my NICU nurse family out there. You will forever hold a special place in my heart. Thank you for all that you do. <3

Throwback Thursday

It's throwback Thursday friends. Today I  decided to post some pictures of the girls a few months ago to show how far they have come. 

They sure were small, but they have always been very cute! 

             Can you tell who is who?

The Graham’s Foundation

The Graham’s Foundation is a foundation specifically for preemie parents. It is a non-profit organization founded in 2009 by Jennifer and Nick Hall in memory of their son, Graham.  The foundation supports the parents by providing free care packages during their journey in the NICU and transition home.The foundation's website provides a place for parents to share their stories and find support. When my girls were in the hospital my mother requested a care package for my girls from the foundation. The package was great and it let me know that people were thinking about me and I wasn't alone. To any NICU parents out there I really recommend that you visit the website. On the website you can communicate with other NICU/ preemie parents. The website even has cool merchandise you can buy like T-shirts and buttons to support preemies.

If you are not a preemie parent but you are looking for a way to support preemie/NICU parents, you can make a donation directly on the website or you can buy something at their online auction online. All the money they receive helps support preemie parents like me. I am very thankful for all the good work the Graham’s Foundation does.

You can visit their website at http://grahamsfoundation.org/home.html

This is a picture of the care package you receive as a preemie mom. 

Ready or not...it's flu and RSV season

I think I need to post this picture all over the place. Flu season is coming friends.  There isn't anything worse than Flu season to a preemie mom. I have already scheduled the girls flu shots for the end of the month and have put in paperwork for them to get the RSV vaccine. 

RSV is Respiratory syncytial virus. It causes an infection in the lungs and breathing passages.  In adults symptoms are similar to the common cold, but in premature babies RSV can be very serious and  it can lead to other more serious illnesses.

RSV is highly contagious and can be spread through coughs or sneezes. It also can live on surfaces and on hands and clothing. So wash your hands often friends!  RSV can spread rapidly through schools and childcare centers. This is scary news for a preemie mom that is also a kindergarten teacher! This is why I change my clothes as soon as I get home from work. The threat of RSV is the number one reason why we decided to get an Au pair. I refuse to take the girls to daycare. 

My girls qualify for the RSV vaccine again, but I did have to get their Pulmonologist to fill out a referral for their pediatrician.  The RSV vaccine isn't authorized for all babies, but my advice for NICU/preemie moms is to request to get it and fight for it. The vaccine is very expensive and I don't believe health insurances like to pay for it, but it's worth the fight! 

Feeding Pump-What to Expect

When I first got Abigail home and I had to feed her over night via her gtube the  idea really scared me. I thought to myself "Can I really do this?" Well the truth is, it's not really that big of a deal. It took me 2 nights to really master the pump. The hardest part is honestly getting up in the middle of the night to fill the feeding bag. I have to say a big THANK YOU to my husband Dan for taking over that job. I did learn that it is best to have Abby in front snap-up clothing when using the gtube. The tubing fits nicely between the snaps and it is easy to get to the gtube if needed. My advice to preemie moms is to  invested in snap up (not zip up) PJs. In the winter when I had Abby in a sleep sack we cut a small whole so the gtube tubing could come out and that worked well too.  

Make sure  you keep the area around the gtube dry. We always keep gauze around the house for when we need it.  Gauze is great to use to clean around it. 

And just a heads up to parents- As Abigail got stronger we noticed that she started to pull and play with the gtube tubing. We now always keep an eye on her.  It seems that she was close a few times to actually pulling it out. 

If you have any questions about feeding tubes and pumps please let me know. I would be happy to answer any questions. Don't be stressed if you have to use one. I was honestly very scared at first, but like I said it's really no big deal. If you can work a cell phone, you can work a feeding pump. Below are some pictures of the supplies we use. I hope it gives you a visual. I had no idea what things looked like before I got them. Hope it helps! 

This is the pump we have. It's very easy to use. 

This is the pump bag. The formula goes right into the bag. The pump has a long tube that runs from the bottom. The tube goes right into Abigail's gtube on her belly. 

Just Cause...

I saw this the other day and it made me smile. Having twin preemies wasn't at all how I imagined my life would go, but I am so happy they are my girls!  

I am a proud preemie parent! 

Abigail Has Found Her Voice!

We Got Teeth!

I am happy to announce that both girls have two bottom teeth. This makes me happy and sad at the same time. Happy because they look so darn cute, but sad because they are getting big way too fast!  It’s funny… I can't believe I am actually complaining about my micro-preemies getting too big. I never thought I would say that.  

One of their therapists recommended that we begin introducing the toothbrush and rub their teeth with it. The goal is to introduce them to some additional oral sensations. I have used their little toothbrush on them several times so far. Elizabeth didn't mind it and Abigail just looked confused and made a disgusted face.

The therapist told me that it is possible they could have an oral aversion due to their prematurity. This isn't anything new to us. When Abigail first started feeding on her own she didn't really like having the bottle in her mouth and she didn't show an interest in nursing either. She does a lot better now, but she still has her moments. When she eats baby food her first reaction is to make an awful face like she ate something sour.  Once the food is in her mouth for a few sections she recovers and is fine. It is just another reminder that my girls still have little things they have to overcome, but we’ll continue to take it one day at a time. I will continue to brush their perfect little teeth as I was instructed to do. I look forward to seeing them with more teeth and don't worry I will post more pictures. :) 

To my NICU/preemie moms out there who have a little one that doesn't like to eat or nurse, it does get better. My Abigail is proof of that. Stick with therapy. I know it can be a long process, but it really helps.

 

Down on the Farm

This weekend we took the girls to a berry farm in Colonial Beach. It was our first official family trip together. It was one of the best times I have had in a long time. It is so nice to be able to take the girls out and do things as a family. Abigail can go off of her oxygen for up to 3 hours at a time now so it is a lot easier to do things. The oxygen doesn’t bother me, but I really can’t stand the looks we always get when we are out. I think it upsets people to see a young child on oxygen and I honestly think they are confused by it.  While we were at the farm we let the girl’s pet the goats. Elizabeth loves dogs so I figured she would like the goats.  My theory was that a goat was kind of like a dog but just bigger. Elizabeth of course loved the goat and grabbed him by his horns immediately. Abigail looked very seriously at the goat and checked him out. It is so neat to see their personalities developing. It was an amazing time. I love going out together as a whole family. It is something we haven’t really had a chance to do yet.  Sadly with cold and flu seasons approaching we won’t really be able to get many more trips in, but I look forward to the family trips to come!