Starting a new chapter!

It has been a bit since I've updated! Things are going relatively well here in the Johnson house, with the exception of a few illnesses that keep coming back over and over again! B1 is doing fairly well. She is having some reflux issues and is still having headaches.. so we have two new specialists in our lives! A Neurologist and Gastroenterologist. Fun stuff!

In other news.... I opened an Etsy shop! Over the last months retail therapy has totally been my friend. We weren't working with a whole lot of funds.. SO my retail therapy consisted with a good amount of thrifting... and so begins the story of me falling in love with all things Vintage for the kitchen!! Pyrex was my gateway drug and it has just spiraled out of control since then.. :)

Because I started having irrational fears that I would end up on an episode of Hoarders, I decided to share the wealth and opened up an Etsy shop called ThreeGirlsVintage ! Please stop by and check it out! You can also catch me blogging strictly about Pyrex over at the Pyrex Collective II .

One hurdle jumped!

I know it's been a while since I updated.. B1's surgery went well! She had surgery on the 24th of February and we stayed a total of 5 days in the hospital. What a bunch of ups and downs that was. I have a definite respect for parents that have chronically ill children who stay months or years at a time at the hospital. You can't ever "rest" there. It's always monitors beeping, nurses and doctors coming in and out of your room, and lots of other stimulation.

I'm glad I stuck with my initial decision to only have my husband and my sister at the hospital during B1's surgery. I brought all these things to occupy my time (Kindle, phone, etc.) and I ended up wanting absolutely nothing to do with anything or anyone. I wanted to be alone. I roamed around the hospital and went down to the gift shop and tried to occupy my mind, unsuccessfully I might add. I can't explain to you the feeling of knowing that right at that moment in time your child is being cut open and cooled down so that her heart is almost in arrest. The surgery process ended up taking a lot longer than we originally thought. We arrived at 9 am and B1 didn't end up getting taken back until almost 12. What a long 3 hours that was trying to keep a 5 year old occupied in a pre op room! Thankfully we brought a few toys and the Child Life Dept brought a few things for her to play with too, as well as a stuffed dog and a blanket that she got to keep! We are so thankful we had such a GREAT children's hospital so close to our house with EXCELLENT doctors and nurses!!

After they gave her the "silly medicine", Versed, to relax her to be taken back to surgery we started to relax a little too because she was being SO cute and silly.. but when they rolled her out of the room I broke completely down. It is one of the worst feelings and I can't even find the words to explain it. We were told to go to the Cafeteria to get something to eat and then come up to the OR Waiting area. I had NO appetite. I tried to eat something but just ended up feeling more sick to my stomach than before. We made it up to the waiting area and they called about 1 pm to say they had started surgery. We heard 2 random updates through the next 5 hours and finally the surgeon came in and told us all went as planned and we could see her shortly in the ICU.

I was terrified of the ICU. I just knew that I wouldn't be able to handle seeing her hooked up to all those machines, but oddly I didn't even cry. Being an EMT, medical info/knowledge are a comfort to me and we had an AMAZING ICU nurse that immediately jumped right in and explained everything to me. Learning everything about what was going on around me made me feel more comfortable. She had an arterial line (IV type device inserted into an artery to get a real time accurate blood pressure), an IV in her hand and an IV in her foot, plus her chest tube, EKG leads and nasal cannula for oxygen. There were 2 medicines being delivered by IV on a constant drip by an infuser (pretty neat device that dispenses the medication out of a syringe at a controlled rate).

B1 was obviously still out from anesthesia and had very recently been extubated. When we walked in she was having some VERY loud stridor breath sounds.. (not a good thing!) and for a few hours or so we all thought she was going to have to be reintubated. THANKFULLY she started breathing more normally and the RT decided to just keep an eye on her. She had her chest tube dressing changed just a few minutes after we walked in and my sister and husband had to leave the room because they didn't feel like they could handle watching it. Of course it didn't bother me at all.. I found it oddly interesting I guess..? B1 didn't really regain any kind of consciousness other than to moan and cry in protest when she was moved or repositioned for anything until the next morning. I spent that first night watching her vital signs on the monitor, and sleeping off and on while my husband went to the sleep room (like our own private hotel room) that was just outside of the ICU.

The next morning when I woke up the room was FULL of people.. at first I panicked and then I realized that they were doing rounds. I quickly got up and tried to focus and pay attention to what they were talking about. Once B1 started to come around later that morning, the next 4 days are almost a blur of unhooking her monitors to take her to the bathroom, wagon rides and trying to get her blood pressure under control. My husband only stayed the first night and went home to be with our other two daughters Friday afternoon. He came back for a few hours a day the rest of the time we were in the hospital, and brought A to see her big sister (whom she missed SO much) which was a nice little visit.

Finally Monday morning we found a dose and medicine to keep her BP at an acceptable level and after she had an Echocardiogram we started the "Check out" process. Her ECHO was good in regards to her Aorta repair. However it was a little less than stellar in regards to her mitral valve. We will further investigate this Friday at her post op cardiologist appointment. We got home Monday evening in a HORRIBLE thunderstorm and Miss B1 was SO super cranky and in pain from the car ride. The next few nights she didn't sleep well at all but I am happy to say that she started back to school yesterday! We feel blessed and are hoping to have even more good news after her cardiologist appointment!

I'll do my best to post again after that appointment!

9 more days..

Only 9 more days until we have to hand our sweet girl over to a surgeon. I have gotten by these last few weeks being distracted by sickness and doing my best to not think about the surgery at all. I'm finally feeling better.. thanks to a 10 day round of antibiotics for a nasty sinus infection. A and B2 still have a slight runny nose but I'm more convinced it is allergies at this point.

We got our tax return and have spent the last week catching up on bills and repaying a few loans from this past year when times weren't exactly great. Thank God that that my Hubby finally got a promotion to a new job that he LOVES and that pays well. The downside is that he has to be out of town 1 or 2 days a week, which is an adjustment for us, but it is well worth it.

The kids and I are starting to get a bit of cabin fever.. we have quarantined ourselves to avoid another episode like 2 weeks ago. I don't think I could emotionally handle having to put surgery off again... so we are doing what we have to do to stay healthy! The kids have been coloring and playing playdoh while I clean and organize our house to prepare for company in the next few weeks... and shop online a little.. lol :)

Our pre op appointment is coming up 1 week from now. I'll update again after that appointment.

Postponed..

Well the last few days have been a whirlwind. We have been busy preparing for B1's upcoming heart surgery and suddenly last night we all came down with a nasty cold. Being only 8 days out from surgery, our surgical team and pediatrician have decided that we need to postpone surgery until we are all healthy and germ free.

This is both frustrating and relieving for us. Frustrating because we have been mentally and physically preparing ourselves for THIS day. February 10th was THE day. We had started making plans for my husband to be off work, for my mother and friend to be available to help out with the A and B2. Relieving though, because now we have a few more weeks to breathe before this extremely emotionally taxing event occurs.

More time with our baby, more time to make memories. It may seem a bit morbid to think like that, but who knows what will happen? We have to make the most of the time we have, never knowing what tomorrow will bring. We have to cherish every moment.

In other news, we took B1 to the ophthalmologist yesterday hoping to find out why she was having headaches and eye pain, usually at the end of the night. Her cardiologists were convinced it wasn't a blood pressure issues so we were hopeful we would find some answers after having her eyes checked. It turns out that she has astigmatism. Her right eye is worse than the left and apparently her brain isn't using this eye as much as it should be. We are hopeful that with the glasses she will begin to use this eye more. The Dr. requested that she get glasses and wear them at all times while she is awake.

In 8 weeks she will be re evaluated, and if the right eye is still being neglected we will have to start patching her left GOOD eye to force the brain to use the right eye. If we didn't take these preventative measures, she could lose vision permanently in this eye.

I'll have to admit, it was hard to hear that my baby has ANOTHER battle to fight. Something else to deal with. Something else I can't fix. Being helpless as a parent is one of the WORST feelings in the world. It makes you feel sad, angry, depressed and guilty all at the same time. All I can hope is that after all is said and done, my baby girl will be just that much stronger as an adult.

First post..

Welcome to our new blog! Our family consists of Daddy, Mommy (me), and our three daughters B1(5), A(3) and B2(1). B1 will be having heart surgery on February 10th so I think this will be a good place for me to talk about some of my fears surrounding the surgery and recovery time for our sweet girl.

She has such a low pain tolerance and I am so worried about how she is going to feel when she awakens from surgery. The closer we get to surgery day, the more unstable I feel. In church today, I could hardly hold it together and had to leave early. I am trying to be strong and not let B1 feel any fear from me, but I really am scared.

I know she is in God's hands but I can't help but worry. She hasn't been baptized and we are trying to get that accomplished before her surgery. Still waiting on a call back from our Pastor about that.

I guess that is about it for now..