Friday, January 24, 2014


Waiting in general is tough for me.  Waiting to find out about my little boys medical procedures is really tough.  We don't have any answers yet on what is next for Evan.  We have been waiting all week to find out what surgery Evan will need and when.  I have learned though throughout all of our hospital stays in the last year that waiting when it comes to medical decisions is actually a good thing.  It means you are not considered an emergency in their eyes.  That doesn't make the waiting easier on us, we are still anxious parents, but we know there are other kids that need more attention right now.  Evan is not at any risk right now as long as his blood pressure remains stable with the medication (we have to get it checked 1-2 a week).  Apparently it is quite the process to get everybody on the same page and consult with all of the doctors due to Evan's medical history.  We know the team is thorough and is not rushing into anything, so we will just have to deal with a little more waiting.  The idea of him going into surgery still terrifies me, but there is no need to freak out yet.

For a while now I always wanted to believe that Evan is just a normal healthy little boy, but deep down I always worried that something else could be wrong or that there could still be longterm effects from everything he went through as a newborn.  It was getting easier for me to relax and believe that he is healthy (you really just have to take one look at this little boy and it is hard to believe that he has anything wrong with him) and I hope this setback will be the last bump in the road.

Sunday, January 19, 2014

Not What I Expected

Here we are again a year later still worrying about Evan's health.  His check-ups on Thursday did not go as expected.  He had his heart ECHO in the mornings and that went well.  The cardiologist called right after to say that his heart function looks good.  His heart is still a little thick, but that is not a big concern right now (we have the official appointment with the cardiologist next week).
We had gone in Wednesday afternoon for his one year well visit and his blood pressure was high (I have been getting his blood pressure checked on a regular basis for the entire last year and this was the first high reading in a long time).  I was really worried about it and did not have a good feeling about it.  Thursday afternoon we went in for his renal ultrasound and we found out that one of his kidneys has not grown and they couldn't detect any blood flow to it.  His blood pressure had risen even more.  Thankfully they had a nephrologist on staff that day who came to talk to us right away.  Her biggest concern was that there could be another blood clot since the blood pressure just recently started to rise.  She wanted us to go down to Little Rock ASAP to get a CTA scan done and check for blood clots. He would have to be put under to perform this scan.   I was really shaken up at this point.  This is not what I expected.  I was expecting a clean bill of health.  He looks so perfect and is such an active little boy.  How could something be wrong with him?

Well, we packed our bags in a hurry (once again) to drive to Little Rock.  Thankfully Debbie and Dan were able to keep Hannah, so we didn't have to take her.  We knew it was going to be a long night.  We didn't even leave our house until almost 6 o'clock and it is a 3 hour drive.  The drive was awful.  Thursday was the night before the one year anniversary of Evan being flown down to Little Rock.  I made that drive last year at exactly the same time.  I can't even tell you all of the things that went through my head.  We checked into the ER around 9:30 and at 2am they decided to admit Evan.  They were consulting with lots of doctors on whether they should do the scan that night (with a skeleton staff) or wait until the next day.  His lab work came back with some elevated levels and they decided to wait until the morning, so that they could consult with some more doctors.  He hadn't eaten or drank anything since 4:30 that afternoon, because of the potential anesthesia.  They told me that I could nurse him, but still no food, because they were going to do the scan in the morning.  The hospital is at capacity and admissions was running behind, so we didn't get to our hospital room until 5am.  Evan had been sleeping in my arms as much as its possible to sleep in a hospital (somebody came in at least every 30min).  The next morning there was lots of waiting and sitting around and riding around in a wagon and we did find the toddler playroom (it took him a while to get used to playing with only one hand, because he had the IV in the other).
He is just so adorable even in a hospital gown.......

They finally got us around 1:30pm to go down to radiology.  This poor little guy was such a trooper.  You know he likes his food and he hadn't eaten anything in 21 hours (he was on IV fluids).  They let us hold him while they gave him the anesthesia.  It was really hard to watch him go limb.  The actual scan only takes about 10min or so, but we had to sit in the waiting room for 45min until they called us back to recovery.  We were both sick to our stomach sitting there waiting.  He came out of anesthesia no problem and was just a little cranky.  He was finally able to eat around 4pm.  Then we had to wait again for the results and to meet with the doctor (all while his blood pressure was really high).  Sitting in the hospital waiting is tough.  There were so many triggers that brought back a flood of emotions such as the smell of the soap and the smell of the baby wipes.  It took me right back to his critical time last year  We did walk up to the CVICU to see some people and it was so heartbreaking to walk through that unit again and see all of those babies and kids fighting for their life.
The doctor finally delivered some good news.  There was no blood clot.  Thank you Lord.  She also had an explanation for why the blood pressure has been rising recently (I am not going to attempt to explain that right now).  His renal artery is very narrow and is restricting blood flow to the kidney and therefore it hasn't grown and is not working.  The plan is to talk with the interventional radiologist as soon as possible to determine if he thinks there is a chance to save the kidney by putting in a stent into the renal artery or blowing it up with a balloon or cutting the narrow piece out and sewing it back together.  If he doesn't think that we can save the kidney then they have to remove it, because it is causing his blood pressure to go up.  So, for right now they put him back on blood pressure medication until they come up with the plan.  We were so relieved to have some answers.  We are so scared of Evan having surgery, but we know that it is necessary to get him healthy.  Evan was discharged that night.  We were so excited to take him back home with us!

Today has been a tough day for me.  A year ago today was the most stressful and emotional night of my life (and I have had many more in the last year).  We did not know if our 5 day old son would make it through the night.  Today I have been replaying it all in my head again.  Every time I look at the clock it takes me back to that time a year ago.  Last week I thought we were passed all of this and just looked in awe at our sweet healthy little boy.  Now we are back to more medical terminology (I really feel like I have been through med school in the last year), medications, doctor visits, worrying and praying for healing.
We go in for a blood pressure check tomorrow to make sure the medicine is keeping it under control.  I know I will be really nervous walking into the doctors office, but I am praying that his blood pressure is back down to where it should be.

Please pray for this sweet little boy.  Thank you!

Tuesday, January 14, 2014

Happy First Birthday Evan

I can't believe my little boy turned one year old today.  I know I sound like a broken record, but what a crazy year we have had.  I remember the day of his birth and the following weeks like it was yesterday.  The last few weeks leading up to his birthday have been a little tough for me. It's bringing back a lot of emotions and I am reliving everything that happened to him and I am just so thankful that he is here today to celebrate his first birthday.  Today is more than just a birthday to us.  It is a day we have been looking forward to for a while.   We are so proud of him and the fight he put up.

We started his special day with pictures and cake this morning.  Here is a sneak peak from our photo session this morning (these are just from my phone).  This little boy has a little bit of a sweet tooth.....actually there is not much he doesn't like.

 He loves to feed himself and eats everything we eat and it does get a little messy:)
Blackberries are so good and messy

He is such a sweet boy and we can't even remember life without him.  He is quite busy and does not sit still very long.  He loves to play in the playroom.  He loves his walker and is starting to stand hands free more often.  He loves to unroll toilet paper, open every cabinet door, move things from drawer to drawer,  put lids on things and put everything in his mouth especially paper. He laughs at the silliest things Hannah does.  He says "oh oh" a lot (he always says it right before he drops something from his highchair), he says "dada" and looks at Scott and sometimes he even says "mama".
He is probably around 24lbs and almost 31 inches tall (we get exact stats at his appointment tomorrow) and has 8 teeth.  What a big boy.  

He loves to play with my empty tea cup and he was very proud when he got a little bit of foamed milk out of there....
We are going in for Evan's heart ECHO and kidney ultrasound on Thursday.  Praying that everything looks good and normal!

We love you to the moon and back!

Monday, January 6, 2014

December Has Come And Gone

Well, it's been a while since I have updated the blog (I am sure you all missed me. Ha!).  This is going to be a speedy recap of our last month.
Scott walked out of the hospital on December 13th.  He always said that he will walk out of the hospital and I have to be honest and say that I didn't always believe that was possible.  At one point we had to have our friends measure every step and doorway and shower in our house to determine how we can make it handicap accessible.  Scott always said that he will not need any of that, because he will walk out of the hospital.  I love that he was so determined!
Here is the cookie cake I got for Scott on his last day

We made it home safe from Nebraska.  We stopped in Kansas City for Scott to see the Neurologist that was on call during his time in the ICU at KU Med.  He was pleasantly surprised to see the progress Scott has made.  He also gave us more hope that with time the pain and numbness in Scott's hands and feet will get better.
On December 14th our little man turned 11 month old.  He is such a joy to our family.  He is a busy body and is constantly moving.  He does not like to sit still or read books.  He would much rather eat the books, bang them against the wall or throw them on the ground.  He has been cruising along furniture and loves his walker. He likes to open and close every drawer and door five hundred times.  He also gets hurt a lot doing that, but he goes right back to it.
Evan had a quick visit with Santa (big sister did not want to go near him this year).  He did great and was not scared at all. I have to say I am almost a little disappointed.....I love Santa pictures with screaming babies:)

We came home to the biggest christmas tree you have ever seen.  Scott's family came to town to celebrate christmas with us.

 Hannah was so excited about christmas this year and it is so special to see this special holiday through the eyes of a child.  She was pretty excited to leave cookies for Santa and carrots for the reindeer.  She did however forget to leave a glass of milk.  Santa left her a note asking her to please leave some milk next year, because the cookies are just better with milk.  She thought that was so funny and still talks about it.
Evan has been loving Hannah's DocMcStuffins check up center (it has doors he can open and close, so of course he loves it)

We welcomed the new year at home with just our little family.  We went to bed by 9:30 and slept through the big celebration.  2013 was a year of really happy and joyous occasions (Evan being born) and really scary and sad moments (Evan being so sick right after birth and Scott's battle with Guillain Barre).  We are happy to put this year behind us.  We spent almost half the year in a different city at a hospital.  We are so blessed to have witnessed two miraculous recoveries in 2013 and are looking forward to what 2014 brings for our family.

If you haven't seen the video of Scott's Guillain Barre journey you can check it out HERE.  It is very brave of Scott to share these personal moments with everybody.  I know the videos we watched gave our family so much hope and encouragement when Scott was at his lowest point and if we can provide that kind of hope to another family then it was worth sharing this life changing event.