RSV One Year Later

This time last year I was in the hospital with Abigail while she had RSV.

It is RSV season out there now and it isn't anything to be taken lightly. 

RSV is something that is dangerous for any baby and young toddler and it is extremely dangerous for any child with lung disease. 

It was a very scary 4 days and I can't explain how fortunate we were that Abigail was able to fight it off and bounce back.

I have reposted below the blog I posted once we got home from the hospital. It outline what happened for anyone that is interested. 

I hope everyone has a Happy New Year. I  am looking forward to being home with my family and not in the hospital this year. We have spent too many holidays in the hospital. 

December 29, 2014

On Sunday afternoon I noticed Abby wasn't herself. I checked her temp and it was 102. This totally caught me off guard because she was acting like herself all morning. Since her temp came out of no where I thought it would be good to check her oxygen level on our machine at home. To my surprise her oxygen was only 90%. Scary, scary stuff!  We were told by her Pulmonologist to not let it get lower than 94%. We gave her, her inhalers and she still wasn't able to come up. We were left with no choice but to call the ambulance.

The ambulance took her to our local Hospital. I like to say upfront that I'm not a big fan of our local small hospital because they just don't have the ability to take care of little kids. When we got there she got a chest X-ray and the attending ER doctor said that she had pneumonia. The doctor went on to say that she needed antibiotics and wanted to send her on her way home. Well being the mom I am, that wasn't good enough for me. There was no way I was going to leave with her oxygen level so low. I requested that the doctor give her Pulmo doc a call at Hopkins. She really didn't want to do that, but she did say the attending pediatrician would come and talk to me and Dan.

While we were waiting for the pediatrician a Respiratory therapist came and gave Abigail a breathing treatment. Her oxygen level didn't really improve and at this point I requested that she stay on oxygen for a while. This made me very frustrated that I actually had to request the oxygen myself and that no one else could see on the monitor that she needed it. 

Then her nurse said that she needed an IV. This is the point that I roll my eyes and begin to anticipate a fight. She attempted to put an IV in her despite my disapproval. It took Dan and I both to hold her down while the nurse tried to do her job. Abigail had a complete meltdown and screamed at the top of her lungs. There is nothing worse than seeing your child in pain and scared.  I explained to the nurse before she even started that she was extremely hard to get a successful IV in and no one at this hospital had ever got an IV in her before. She told me that she has been a nurse for 11 years (thanks for tooting your own horn) and that she could do it. Well I knew that 11 years working on adults really means absolutely nothing when you are dealing with a 2 year old Micro preemie who has had more IVs and blood transfusions than most people have in a lifetime.  Let's just say she failed and I called it.

Finally the pediatrician came and talked to me. He said that Abigail would get 2 more breathing treatments and would be sent home with antibiotics. I went ahead and started to tell the doctor all of Abigail's medical history and he started to write it all down. You could tell he started to realize that this isn't your average patient. He went ahead and ordered a test to see if she had the flu or RSV. He finally agreed with me that she needed to be sent to Hopkins where the new her.

The ambulance took about 2 hours to arrive to get her and she was finally transferred to Hopkins. Dan went along in the ambulance and I quickly ran home and got clothes and toys together because I just knew she was going to be admitted. I arrived just after the ambulance did a little after 1 AM. 

Once we got to Hopkins I immediacy felt better. The nurse got her IV in the first try and they monitored her in the ER and quickly got her admitted. The Pulmonologist on call didn't agree that she had pneumonia and thought that she had a viral infection. I wasn't at all surprised the first ER doc was wrong. Both the rapid flu and RSV test came back negative. They admitted her and put her on droplet isolation, which means anyone in her room needed a gown, gloves, and a mask. She was kept on oxygen and they began breathing treatments every 4 hours and started antibiotics a steroids.

 After 2 days I could already see a change in her and she was able to go without oxygen when she was awake. Late Tuesday night doctors told us that she indeed had RSV and that her culture grew. The course of meds would not need to change. Thank God! Despite the RSV the doctors were pleased with her recovery and of course they went on and on about how cute she is. Abigail did so well that we were able to go home Thursday night. 

She is still on her antibiotics and steroids and will need them both for a few more days. Her oxygen level is doing great at home. She is a fighter! 

Ever since we left the NICU I have been really worried that one of my girls would get RSV.  The last 2 winters the girls qualified for the RSV vaccine, but the vaccine isn't given to kids once they are 2. When the doctor said she had RSV I felt defeated, but also I expected it too. It was a strange feeling. Abigail has chronic lung disease and I always knew this could happen. I am just thankful for the wonderful doctors at Hopkins who acted quickly.

 I am also proud of myself for not letting the first ER doctor send us on our way. This is just a reminder that Dan and I are her biggest advocates and we have to fight for her. 

Thanks for all the prayers friends! 

Now the girls are together again!

Christmas Eve in the NICU

3 years ago on Christmas Eve, Dan and I were surprised by one of our favorite NICU nurses. She arranged with the respiratory team and the doctors for our family to be together and spend some time together just the four of us. With a portable heart monitor and oxygen, Elizabeth was able to take a visit to Abigail's hospital room. The girls were just a few rooms apart, but it would be the first time that our family would be all together. It was truly the best Christmas gift anyone could have given me. It's so hard to believe that we spent last Christmas in the hospital and today the girls are crawling and laughing. I feel very blessed! 

In this picture I am holding Abigail and Dan is holding Elizabeth. 

I hope everyone has a wonderful holiday. 

If you are a Parent of a child in the NICU this holiday my advice is to try to make the best of it. The truth is it really just stinks, but just focus on how beautiful your baby is and remember its only for the time being. It won't be this way next year. :) 

Gingerbread Houses

Yesterday the girls built gingerbread houses in PreK and parents could come. 

It was a lot of fun. Elizabeth loved to put on the icing. Abigail wanted to eat all of the M&M decorations. Never have the words "please stop eatting Abigail" come out of my mouth until yesterday. 

It was a lot of fun! Stop growing girls!

Update!

It's been a while since I have posted. I have been a super busy working mom recently. After working all day with 29 kindergarteners and then ending my day with twin 3 year olds I am pretty done by evening time. Sorry the posts gave slowed down some. 

I was asked to post an update, so here it is. 

Abigail is doing well. She is still on the small side, but like I have said before- She sure doesn't know she is small! 

Abigail's orthopedic is happy with how she is walking. He even wants us to start giving her time without her orthotics on to help build up some of her foot strength. 

We are still giving her the eye drops to help with her lazy eye. And boy does she hate that!  

We do have some upcoming appointments for her. She will see her ENT doc soon and her GI doc soon. She continues to be on a lot of meds for her constipation and appetite. I am curious to see what her GI doc has to say. 

Elizabeth recently saw her orthopedic and  physical medicine doctor. She got a new handbrace made by an OT at Kennedy Krieger to help stretch out her left hand. She is wearing it for about 30 minutes each night. So far she is tolerating it, but not loving it. 

The big news is- She will get her first round of Botox in her hand this month on the 30th. Everyone is anxiously waiting to see how the Botox will work for her. Fingers crossed that she will get some benefit from it. The idea is for her to get some range of motion in her fingers. 

Her orthopedic recently told me that if she doesn't willingly start to use her hand more there isn't even a surgery that he can do at this time to help her. This was very concerning to me. I guess in the back of my mind I just hoped a surgery would help fix it and unfortunately that just isn't the case yet. So please keep the prayers coming that this Botox will help. 

Elizabeth is also set up to do her 3rd round of constraint therapy again at Kennedy Krieger sometime late Spring. More info to come on that later. 

Both girls are in PreK and loving it. Yesterday I asked the girls what they did at school and they told me all about making a snowman. They are getting too big!!!

Thanks for all the support friends! I'll try to keep you all updated more frequently! 

Next month I'll have a blog for PreemieBabies101. I'll be sure to post it for you all. 

Xoxox

Being Prepared for the Hospital

Here is a blog I wrote for Preemie Babies 101. It's RSV and flu season, so I thought it would be a good idea to repost it here too.

Two years ago my twins spent 4 months in the NICU. It was a long journey and going to the hospital every single day for 4 months is an emotional feat in itself. My twins were discharged 2 weeks apart, and the day my Elizabeth could finally leave, I wanted to run home and never look back. If only it was that easy.

As much as I never wanted to step back into the hospital again, it just wasn’t possible. Since being discharged, we have had a few hospital stays due to lung issues and surgeries. Some of the stays were expected and some of them were not.

Running through your house trying to pack for an unexpected stay is challenging and also scary. Your mind will be racing and it’ll be a challenge trying to get your thoughts together. Whether you are getting ready for an expected stay or packing on the fly, here are 10 ways to prepare if you are returning to the hospital after a NICU discharge.

In the hospital recovering from lung issues

1. Pack your little one’s pillow and or their favorite blanket. There is something about letting them sleep with something familiar that helps them get a better night’s sleep.

2. Pack a bag of toys. Many hospitals have toys for children to play with and that’s great. If you are at the hospital alone with your little one, then you may not want to leave their room long enough to find them a toy. I know my daughters never want me to leave them. Just pack a bag and bring it with you. Sometimes if I know in advance we are headed back to the hospital, I’ll buy her something new and give it to her at the hospital.

3. If your baby loves a certain vibrating chair or small swing bring it with you. I know this sounds kind of silly, but if you can fit it in the car bring it along. My daughter had to go back to the hospital shortly after discharge from the NICU because she had a hernia. I brought her favorite vibrating/soother chair along, and it was certainly a life saver.

4. Bring their favorite snacks with you. Hospitals do have a cafeteria but if you have a picky eater, a hospital stay isn’t a time to try new foods. You will want to give them what’s most familiar and what you know they will eat. Remember to check with their doctor or nurse first to make sure they do not have any food restrictions before giving them something to eat.

5. Pack all of your necessary chargers. That includes cell phones and tablets. You’ll have phone calls to make so you will want your phone to stay charged.

6. Pack a bag of clothes for you and some clothes for them. If a hospital stay is unexpected and you are throwing clothes together quickly for yourself, pack clothes for your little one too. You will want them to have clean clothes to leave the hospital in. Slippers always come in handy too.

7. Hospital stays are not the time to wean off of a pacifier or the bottle. You can fight that battle when they are good and healthy again.

8. Bring along a list of current medications and their doctor’s phone numbers. If you find yourself at a hospital that is not your regular hospital this will be good to have with you.

9. If they listen to music when they fall asleep at home then bring it with you to the hospital. You want to try to get as close to their routine as possible.

10. Don’t forget your toiletries. Hospitals usually sell toothpaste, toothbrushes, and hairbrushes but they can be expensive. If you need it in a pinch it’s convenient, but if you have time to pack your own toiletries it will be better on your wallet.

 

Going back to the hospital is always a stressful and scary time. If it is last minute, knowing what you want to grab ahead of time and being a little prepared will make it a little easier. If any parents out there have any other tips please share them in the comments section. We are here to help each other and any ideas are always helpful.

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 their diapers 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. 

World Prematurity Day

Today is World Prematurity Day! 

In 2014 just over 9% of births were premature according to the March of Dimes. Premature births are births before 37 weeks. I would literally have given my arm, foot, anything for my girls to have made it to 37 weeks. I have learned a lot about preemies and what it takes for them to make it in the hospital. Today is a day to recognize how amazing these little fighters are. 

Today I thank the nurses and doctors that work so hard each day to save babies that are born way too early. You all do amazing work and I thank you from the bottom of my heart! Today I am reminded of the strength of my girls. They both are truly my heroes! 

It is hard to believe that 3 short years ago my girls were in the NICU fighting to live. I feel especially blessed today. 

My Journey

On October 25 my life changed in ways I would have never imagined. To say my journey was a roller caster can't even begin to describe it. 

My journey begins with trying to get pregnant. It took 6 IUIs and 2 IVFs to finally get pregnant. Shots after shot and appointment after appointment finally paid off after months of heart ace and disappointment.

 To this day my weekly trips to the infertility doctor mark as one of the most depressing times of my life. Sitting in a waiting room full of women of all races and ages working towards the same difficult goal of getting pregnant was something I'll never forget. 

When I finally got the call from the nurse that I was pregnant I couldn't believe it. I wanted to be excited, but I was also a nervous wreck. My first IVF ended in a miscarriage, so I didn't want to get my hopes up again. I was so envious of women who could just take a home pregnancy test, found out it was positive ad cherished in the moment of excitement and joy.

Even with the good news I still was apprehensive because I knew how it felt to be let down. 

Finally it was ultrasound day. The day I would learn the most exciting news of my life and the moment it finally felt official.  I could

see that I was pregnant with my own eyes. As I got my ultrasound I learned I was going to have twins. Twins! I was pregnant and I was having twins! My heart instantly filled with some much joy and love that I thought it might explode. I loved them the moment I saw them. There they were, Baby A and Baby B.

My pregnancy wasn't an easy one. I had appointments every other week with my regular OBGYN and a Fetal Medicine doctor. They followed me closely because baby B was small. Both doctors spent a lot of time explaining to me that they were very concerned that Baby B wasn't growing enough

and according to their medical opinion they didn't believe that

baby would make it. I cried just about every week. Every week I would go and Baby B would have a heart beat but they still would tell me not to get my hopes up. I would feel a kick and just pray that one of those kicks was coming from my precious Baby B. 

When I was just 22 weeks pregnant I started bleeding and called my doctor. I was instructed to go to the emergency room immediately. I was scared out is my mind and immediately thought the worst. I tried so hard to get pregnant and I just couldn't lose them now.  

I was hooked up to all the monitors and I was seen right away by the doctor. The doctor calmly told me that I was having contractions. Contractions?! How could I be having contractions I thought. I wasn't even in the 3rd trimester yet. The doctor told me that I was going to need to be medivaced to Baltimore to be at a hospital with a NICU incase I delivered. They pumped me up with medicine to stop my labor and off I went to Baltimore. I had no idea at the time, but this day would mark as the first day of a 5 month period that I would be in a hospital. 

I made it on full bed rest in Baltimore for 3 weeks and delivered at 26 weeks 4 days. 

My twins were micro preemies that weighed 1 pound 11 and 2 pounds 4. They were two strong little girls that were bond and determined to fight. I didn't even know the term micro preemie existed until I had two of my own. 

My girls spent 4 months in the NICU. That year Halloween, Thanksgiving, Christmas, and New Years were spent in the hospital. I went to see them every day. I learned everything I could. I tried to make it to every doctors round and learned all the nurses names that took care of my daughters. 

The NICU life is a hard one. There are so many turns and ups and downs it's enough to make your head spin. When one was doing well the other wasn't. When one need a blood transfusion the other one needed one shortly after. I learned about oxygen machines, heart rate monitors, brain bleeds, heel sticks, isolates, the importance of breast milk and everything in between. 

My fondest memory was when the NICU nurses surprised my husband and I on Christmas Eve and coordinated to have my girls brought together. They hadn't been together since I was pregnant. During their NICU stay they were down the hall from each other. I spent my day walking from room to room to visit them both. Having my family together in one room was the most precious memory I have. This is a testament to how wonderful and dedicated NICU nurses are. They are truly special people who work a very difficult job. 

My girls finally came home from the NICU after 4 long months. The moment we were all home I sat in a chair and held them both together and I remember thinking, now for the next journey, raising twins. 

Twins is truly something special. Unless you have twins or other sets of multiples you really can't begin to understand what it is like. I think that's why whenever I see other sets of twins out and about I always feel the need to say hello. Likewise, parents of multiples come up and say hello to me too. 

Twins is a lot of work, but there is also something so special about seeing two children growing up together and reaching milestones together. 

In three years of having twins I learned a few things. Here are the most important things.

Firstly get them on a night time schedule as soon as possible.  My girls have always slept in the same room together and I have always put them down at the same time. If you have infants that still are eating over the course of the night then when one wakes up to eat, just go ahead and see if the other one wants to eat too. If you don't at least try to see if the other one will eat, you could possible be up the whole night alternating feedings. 

Secondly be prepared to have baby gates all over your house. Here is the thing about twins, if one hasn't figured out how to get into something the other one will. They will learn from each other and share ideas on how to get into stuff. They learn the art of teamwork quickly.  Remember it's two minds working together. They will also be ahead of you, but that is just one way having twins is something amazing. 

Everywhere you go people will stare at you. My twins aren't even identical, but people always just know they are twins. People are just fascinated by them. Don't be alarmed but strangers will ask you random questions about them.

I guess because you have a unique situation people feel like they have the right to ask you about it. I have had all sort of questions but the most common ones are "is one easier than the other" or "is one the boss." Well they are toddlers now so just being with one toddler can have it's  challenges so, no, their isn't an "easier one," and all toddlers want to think they are the boss so no one isn't the boss over the other.   The good news is that, I can leave my house in sweatpants and my hair in a messy bun and It wouldn't matter because my twins will always be the one thing people will look at before me now.

You will change an enormous amount of diapers. You will always have to pack a very large diaper bag. And if you are alone with them with no other adult around you will always be out numbered. The amount of stuff you acquire with twins is ridiculous. Be prepared for your home to be a little disorganized for a bit. Don't worry though, you'll get your house back when they get a little older. 

Having twins will create stress on your relationship with your spouse. It could be financial stress because raising twins is expensive. It may be stressful because one thinks they do more work than the other. Just remember that you both love each other and it will get easier. When my girls came home from the NICU, my husband and I soon took on roles or jobs. It helped us get the job done. As they get bigger it does become less stressful and easier. My husband and I recently took one of my daughters to a doctors appointment together. I jokingly said to him "you know this is really easy." But with that said watching two kids grow up together is something amazing.  Watching them hold hands and talk to each other melts my heart. Watching them play together and learning their likes and dislikes becomes special memories. 

My journey wasn't easy and it still isn't easy, but I feel so lucky to have gotten this far. My girls are growing, healthy, and happy. 

A Bunch of Firsts

Last week the girls had a lot of firsts. They started PreK, rode a bus for the first time, and went on their very first field trip. 

The girls got into PreK with an IEP, due to their physical disabilities. I really like their teachers and I believe it will really help them to prepare socially, physically, emotionally, and cognitively for kindergarten. They will be the youngest in their class, but I think the pros out numbered the few cons to starting PreK your 3 year old year by a long shot.  I am so proud of them. They didn't even cry their first day. 

Thursday and Friday they rode

The bus to school. Their old physical therapist with Infants and Toddlers met them at daycare to teach Elizabeth how to get on and off the bus using the handrails. They loved the bus. They talked about it all weekend. 

Friday the girls had a field trip to the pumpkin patch. My husband and I both were a chaperone. It was great to meet some of their classmates. 

I'm looking forward to seeing what the school year brings. 

Three!

We are 3! Three years ago I gave birthday to the most amazing girls! I am so thankful for their strength, loving hearts, and spunk.

  

They have come a long way from their 4 months in the NICU. I am so thankful that it all seems like a dream now. I love you girls! 

Bed Rest

Three  years ago I went to my local hospital in a panic and ended up getting medevaced to Baltimore a few hours later. It happened on October 9th 2012. 

That was the scariest day of my life. I was just 23 weeks pregnant at the time. Once I arrived at University of Maryland Hospital I stayed in a Labor and Delivery  ICU area. It was a unit for women having serious issues with their pregnancy and required careful monitoring. A woman in the room next to me for example  had some type of surgery while she was pregnant and was there recovering. After spending 3 days there I finally got  moved to my own room. I would spend the next 2 weeks there on full bed rest until the day the girls were born. 

I don't really like to think about that time. It was truly a miserable and terrifying first 3 nights in the hospital for me, but I am stronger because of it. I thank God for the medicine that stopped my labor at 23 weekd because without it my girls would not be here today.  

During my bed rest a NICU doctor came to talk to me to discuss what might happen if I have my babies premature. She informed me of the risks and the challenges associated with prematurity.   She terrified me and it took everything out of me not to burst into tears. I know they needed to inform me for what was ahead, but it sure was a lot to take in. 

Despite everything I went through there were some people that truly touched my life during that time.  

To the two male paramedics that went with me on my helicopter flight to Baltimore- you have no idea how grateful I am for your kindness and warm nature. It was a very stressful time and your calmness helped me to stay calm too. Thank you. 

To the nurses at Maryland in the labor and delivery wing-you made me laugh when I was sad and you came to visit with me when I was lonely. And most importantly you comforted me when I was scared.  I will never forget that.  You all hold a special place in my heart!

My delivery journey was a scary time, but now it it just a distant memory. Three years have passed and we are still on a journey together. Every day is a new adventure with my girls and I wouldn't want it any other way. 

World Cerebral Palsy Day

Today is world Cerebral Palsy Day. 

My Elizabeth amazes me everyday. She is so strong and determined. Since day 1 in the NICU she has been a fighter. It hasn't been easy for her because living with CP isn't ever easy.

Elizabeth's CP is on her left side and mostly affects her left hand and ankle. She isn't able to use her hand much and has already been through 2 rounds of Constraint therapy at Kennedy Krieger in Baltimore, Maryland. She continues to have OT and PT twice a week. 

Here is some insightful info about CP.

Abby's Lazy Eye

Many of you may know the my Abigail has a lazy eye. I have posted about it in the past.

You can usually see her lazy eye the when she is tired, not feeling well, or if she has just woken up. 

We are lucky she has an amazing eye doctor at Hopkins. He has actually followed her since her preemie days in the NICU.

Abigail never had ROP, but it did take a while for her eyes to become fully vascularized. 

Over the last two years we were instructed to try patching. Patching is when you cover the good eye so you are forced to use the weaker one. Well you can guess how well that went over with a young toddler. She wanted nothing to do with it. 

I can remember one time we had to have an appointment with another eye doctor because of a scheduling issue with her regular eye doctor. I told him we were having difficulty with patching because she would rip it off as soon as I put it on her. The doctor actually told me to put swim floats on her arms so she couldn't reach up and rip the patch off. Let's just say I was done with that doctor after that. Did he really think a toddler would sit there with floaties on and not protest?!

The last time we saw her eye doctor he saId that we could try eye drops instead of the patch.  The eye drops basically cause your eye to be blurry and it'll last all day. You put the drops in the stronger eye so you are forced to use the weaker one. If we do the eye drops, then we only have to do it twice a week. The eye patch is an every day event.

I have to admit I really hated the idea of doing the eye drops, but I knew we needed to do it. It's one of those things as a parent you just know you have to do, even though you feel so sad about doing it.  I really dreaded it.

 Now that we got her thrush under control I thought it was time to try the drops out. Again I was really dreading it.  

Sunday was our first go at it. I was anticipating a miserable day with lots of fussing, but I am happy to report she didn't mind it at all. She was only upset when I put the drops in, but didn't mention anything about her eye the rest of the day. This is a big stress relief for me!  We will now be doing the drops twice a week. I'll keep everyone posted on the progress. 

Flu Season is Here

Flu season is here friends.  

There isn't anything worse than Flu season to a preemie mom. Abigail and Elizabeth already had their flu shotslast week. According to their pulmonogist the best time to get a Flu shot is in October. The flu is already out and about by Novemeber.  

100s of kids die each year from the flu. It's very serious. 

Another very scary thing out this time of year is RSV. 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 and wash my hands several times a day.

Take care of yourself and get a flu shot friends! 

National Daughters Day

Today I celebrate my amazing daughters!  You are the light of my life. I love you more than words could ever say. 

Wait, Wait, and Wait Some More

If you are human, the chances are you have had to wait on results before. It could have been results from an exam at school, results from your work evaluation, or even medical results.  

There is nothing fun about waiting around for results. When the girls were in the NICU I spent a lot of time waiting around for results. Results from blood word, ultrasounds, eye exams, EEG tests, and on and on. 

Its 3 years later and it appears I am still apart of this ridiculous game. 

Waiting on results really can test your patients. If you are like me, you want results NOW, but that's just impossible. 

There is an old saying, Good things come to those that wait." Pardon my French but that is just B.S. I have waited plenty and it didn't always turn out wonderfully.

The saying should really be changed to something like...

Sometimes good things happen to those that wait and other times it's crap

This rant brings me back to why I am writing this post in the first place. I am obviously waiting on results.... Again!  

My Abigail has another endoscopy scheduled for the 28th to see if her thrush is finally gone. This will be her 3rd one. 

 We have been on anti- fungal meds for over a month now and I am "patently" waiting to see if they have finally did the trick. On the 28th she will be put under for the 7th time! Yes- 7th! I will have to wait for the doctors to do there thing and I'll have to wait until I can go back to the recovery room to be with my little girl. 

I am also waiting to here back from Elizabeth Neurologist because she had another seizure episode on Wendesday.

I feel like it is never ending. Of the life with my micro preemies! I love them to prices and wouldn't want it any other way!

Happy NICU Nurses Day!

September 15th was Neonatal Nurses Day! Sorry I am little late. We have had a busy week.

NICU nurses are the real rockstars! 

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

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. Some bigger babies are in cribs too.

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.