Wednesday, February 27, 2013

One helicopter ride and 23 days in the hospital.....the journey of Evan James

I wanted to have a "timeline" of Evan's story.  The entire 6 weeks since he has been born have been a blur to me, but I can finally relax a little more and would like to have his journey documented.

Evan was born on Monday January 14th, 2013 at 0:02am. He was 8lbs 6oz and I think he was 21inches long (I don't even remember, because everything was so hectic right away.....I am sure it is documented somewhere).  He had meconium aspiration at birth and they took him to the nursery right away.  I got to hold him for just a few seconds.  They told us that he will probably be back in our room in an hour or so.  Well, an hour later the nurse came back to tell us that he is on oxygen and has an IV and will not be back for the entire night.  His chest X-ray did not look good and he has to work out the stuff in his lungs. I was really upset and scared.  I was finally able to get up around 4 am and we were able to go see him in the nursery.  He was perfect!We did not get to hold him yet.  After more sleepless hours we were able to hold him around 9am.  They did another chest x-ray and it already looked a lot better.  He had to stay on oxygen and the IV for the rest of the day.  By noon I was able to try and nurse him.  He had no issues with that.  So, I went in to feed him every 3 hours and by 6pm that night he was able to come to our room for the first time.
Here are his first pictures

 They wanted to keep him another day for observation, but he did great throughout Tuesday and they told us we would be going home on Wednesday.
Finally big sister got to meet him on Tuesday.  She was so proud and excited!

The very first  family picture

By Wednesday morning he was a little jaundiced and had to stay another 24 hours to be under the bill light.  He was in the nursery all day except for feedings.  I noticed that he was really sleepy and didn't eat well at all, but at the time they thought that was because of the jaundice.  He also looked like he was breathing really heavy and we pointed that out to the nurses, but they said that he had just been upset and that's what was causing his heavy breathing. He did not eat well at all throughout the night and I kept thinking that I will need to meet with a lactation consultant in the morning.  On Thursday morning January 17th he had turned blue and was breathing really heavy.  They called the NICU doctor down who admitted him into the NICU right away.  They started to draw labs for all kinds of testing (viruses, infections, metabolic diseases ect).  They placed several lines in him and he was on oxygen.  They performed a heart ECHO, which was read by the cardiologists in Little Rock.  I was such a mess that day, but had finally decided to leave the hospital for a bit to pick up Hannah from school.  I was gone for about 45min when I got a call from Scott saying that Angel One was on its way to pick up Evan and take him to Arkansas Childrens Hospital in Little Rock, because his heart was weak.  I was surprisingly calm at that point (mainly because Hannah was in the car with me).  I dropped Hannah and my mom off at home and headed back to the hospital.  By that point I was starting to lose it.  I met Scott and the NICU and the Angel One team arrived shortly after that (around 3pm).  They said that they would not take me with them, because I had just given birth a few days before (or probably because I was a mess), but they agreed to take Scott.  I was so thankful for that.  It was so hard to see them load up Evan.  It still makes my stomach hurt just thinking about it.  I watched the helicopter take off and just fell to my knees crying in the parking lot of the hospital (several people walked by and not a single person asked if I was ok).  Then I rushed home to pack up some stuff, so that my mom, Hannah and I could get on the road to Little Rock.  I remember feeling numb at that point.  Scott's parents started driving to Bentonville in the mornings when Evan was moved to the NICU.  They stopped in Kansas City to pick up Allison and then continue their drive all the way to Little Rock.  By the time we got on the road Scott and Evan were already in Little Rock. I felt so bad that Scott had to be there by himself.  I received a text from Scott saying that he was so scared and that is when it really hit me.  Another text said that they are worried about his other organs not getting enough blood due to his weak heart.   I sent out a prayer request on Facebook and immediately people started praying for our sweet boy and passing on the prayer request to friends and family.  Evan had hundreds of people praying for him all over the world.  The drive was long and exhausting.  We finally made it around 10pm and I was so happy to be there, but I was also very scared to go see him.  I didn't know what to expect.  I broke down as soon as I walked into his room.  It was extremely hard to see my sweet newborn baby with all the lines in his body with medication flowing through them, all hooked up to monitors and the shades for the bili light.  They had started him on antibiotics (in case it was an infection causing his heart failure), heart and blood pressure medicine.  Scotts parents and Allison arrived around 11pm and it was so good to see them (Hannah was at the hotel with my mom by then.....she was not allowed on the NICU floor and I wouldn't have taken her in anyway).  Scott's parents decided to spend the night by Evan's side.  I was so exhausted by that point that I was good with going to the hotel and trying to get a little rest.

This is turning into a lot longer of a story than I originally anticipated (I was just going to outline his journey along with pictures).  Once I started typing it felt really good to write it all down.  I don't remember every day in this much detail, but I just want to write down what comes to my mind.

Tuesday, February 26, 2013

Family Update

Last time I posted on here we were driving to Little Rock for Evan's first follow up appointment since being discharged from the hospital.  It felt really strange driving back to Little Rock, passing the apartment we stayed at and walking back into the hospital.  I didn't think we would have to go back there for a long time, but since there was bad weather last week the cardiologist was not able to fly up here, so we ended up driving to Little Rock.  His appointment went really well and I am SO happy.  His vitals were good and his heart ECHO was normal.  Yes, they called his heart function NORMAL.  There is still a little bit of thickness in one of the walls of the heart, but it is of no concern right now.  His blood pressure was good too and they decided that they are going to let him grow out of the doses of blood pressure medicine (since the dose is based on weight the impact/effectiveness will be less and less as he grows and then we can just stop it, because it is not doing anything anymore).  Speaking of growing......he is gaining weight like a champ.  He was 10lbs 9oz at his appointment!!!!!!  He does not look like a baby that spent over 3 weeks in CVICU.  He is in the 75-90th percentile for height and 75th percentile for weight.  He is a big boy and I love it!
He has a follow up appointment with the Nephrologist in a couple of weeks to do another renal ultrasound to check on his kidneys.  As long as the blood pressure is under control (we are getting it checked at the pediatricians office every week) and he has plenty of wet diapers there is no concern about the kidneys.  He has been spitting up a lot more again, but it does not seem to bother him (it just means a lot of laundry for me).  I felt such a sense of relief when we left the hospital on Friday.  It was exactly what I needed to hear and I have been able to relax just a tiny little bit.  He looks and acts like a normal baby and IS a normal baby now, but it is still difficult for me to put everything behind me.  Every time he cries I worry about his heart and blood pressure. I know that crying is a good thing, but it still stresses me out right now. Things will continue to get easier.

Jenny took the below pictures and I am loving them.  Evan did not stay asleep very long and then he was not very happy. Jenny got some great shots in a very short period of time.  My friend Rebekah made the "miracle onesie" and it is just precious.  These pictures tell a perfect story.  Thank you Jenny and Rebekah.

Such a blessing
This is one of my favorites
My two perfect little miracles
Love this one
Family of four
Hannah is such a good big sister and tries to help all the time (maybe a little too much).  She is a little rough with him, but she just can't help it. She loves to mess with him when he is sleeping.  She says " I just have to give him a kiss and a hug".  I heard her say "Look Mama he is making funny faces" and I turned around to see her squeezing his cheeks to make a funny face.  She also tells me all the time "Two kids are a lot of work".....and yes she is right.
Hannahs teacher sent me a picture of her kissing a boy. We asked her about it and she just said "That's what we do.  We do it all the time."  When we asked her who kissed who she said "Ty kisses me and I kiss Ty".  Oh boy, we are in trouble.  Scott had a little talk with her.

Thursday, February 21, 2013

Heading to Little Rock

Evan was supposed to see the cardiologist yesterday in Lowell for his first follow up appointment. Well, the crazy Arkansas weather put a kink in that plan. Due to the upcoming snow/ice storm the cardiologist wasn't able to fly in to NWA. The clinic was not able to reschedule his appointment and had to call down to Little Rock. I was really uneasy all day while I was waiting on them to call me back. I had been anxiously awaiting the doctors appointment. I really wanted the cardiologist to take a look at Evan and tell me that everything is still ok. My mama heart needed that. It had been two weeks since we were discharged and a cardiologist looked at him. I finally talked to them this morning and they do want to see him this week in Little Rock to be on the safe side. Otherwise we would have to wait until next Thursday to be seen in Lowell. So, we are on our way to Little Rock for  a cardiology appointment tomorrow morning. I don't really want to be driving in this weather all the way to Little Rock, but I feel so much better knowing that he will get checked out in the morning. I am hoping that the appointment will be fast and uneventful meaning that he is doing good. He is acting and looking like a normal baby, but I still need the confirmation from a doctor confirming that he is indeed just a normal baby. Everything is still too fresh in my mind. It is fresh in my mind that five weeks ago today we went to Little Rock with a very sick baby.  I stare at him all day every day and thank God that he is such a miracle and that he is here with us today.

I am excited to share some pictures next time.

Saturday, February 16, 2013

One Month Old

I can't believe Evan is one month old already. It doesn't feel real since we have only been home for a week.  This last month was the longest month of my life and this experience was the hardest thing I hope I will ever have to go through.  But in the end we are home with our little fighter.  The transition has been a little tough for all of us, but we are getting more comfortable with each day.  It is hard going from 24/7 monitoring to nothing.  I have learned a lot about myself during this time and I hope that it will make me a better person.  I am hoping to be involved in some more charities that benefit Arkansas Childrens Hospital.  We are forever thankful for the care we received there.  They saved our sons life!

This blog has been a great outlet for me and given me a lot of encouragement from all of your kind words.  I appreciate the comments, texts , phone calls and emails.  I still can't really talk about everything that happened without getting very emotional, but writing it all down has actually been very helpful for me.  I think while we were going through everything I just turned to survival mode and just functioned.  Now that the worst is behind us I am starting to process everything that happened and it has been very hard for me.  Today is especially hard, because I keep thinking about and reliving every minute of the Saturday 4 weeks ago when he was at his worst and we didn't know if he was going to make it.  I keep staring at Evan and I am just so thankful to God that he is here with us today.

As far as home life goes we are adjusting alright.  The house is a mess (it always is, but it is even worse now) and I have to learn to let go.  I have more important things to do right now, but it still drives me crazy.  We are doing several loads of laundry every day......that's what happens when you have a baby that spits up a lot.  Hannah and Scott have become best buddies.  She has been handling this transition great and I am very proud of her.  She knows that I have to spend a lot of time with brother right now and she is good with that.  She has not acted jealous at all right now.  She loves her daddy and is excited that she gets to spend a lot of time with him right now.  She loves Evan a lot too.  Here are some of her quotes. "I love you buddy" "I am going to keep you forever" "Hi handsome" "Hello little fella""He is looking at me.  He likes me a lot".

Evan had his first follow up appointment at the pediatrician this week. The doctor was pleased with everything. After hearing the whole story he called him a little miracle.   Evan gained an entire pound in the week since we have been home.  He was making up for lost time.  Thank goodness he was a big boy when he was born.  He was not quite back up to birth weight (8lbs 6oz) when we were discharged, but now he is 9lbs 6oz.  We grow them big around here!  Evan has only left the house a few times (the bank drive thru and the doctors office and we went for a little walk around the block).  His immune system is still weakened and with all of this sickness going around it is just best to stay home.
We follow up with the cardiologist next Wednesday. I am so thankful that we have the ACH outreach clinic here in NWA and we don't have to drive down to Little Rock all the time.  I am also glad that it will be the same cardiologists that treated Evan at the hospital.  They rotate and one of them flies up here every Wednesday.

Evan likes to be held (I am holding him right now and typing everything with one hand).  He likes to be in his Ergo carrier and he does not like to be put down.  There is nothing I would rather do than hold him since we didn't get to hold him for so long.  I know he is getting spoiled and I will deal with "the consequences" later.  He does not like his diaper or clothes changed.  He was not a big fan of bath time at first, but he is warming up to it.  Hannah is a great bath time helper.  I think he has adjusted to being home over the last few days.  He seems a lot happier.  The transition has to be tough on him too.

One Month Old

We love you Mr Evan and Princess Hannah!

Sunday, February 10, 2013

Home Sweet Home

We made it home!  We drove back to Bentonville on Friday afternoon.  The drive was very emotional for me.  It brought back all of the feelings from the drive down to Little Rock three weeks earlier.  I kept replaying the drive down in my head and how scared we were.   I was worried about getting in a car wreck and worried about distancing ourselves from the hospital.  Evan rode with Scott and Hannah rode with me.  We also had to pass the hospital he was born in and all I could picture in my head was the helicopter taking off with Evan and Scott in it and how I fell to my knees in the parking lot.  I will never be able to pass the hospital without seeing those images in my mind.  I want this to be a happy post, because we are at home with our sweet little boy, but there are still so many emotions that I go through daily.  Every day I relive the past three weeks and I cannot believe that we are at home now.  Thursdays (when he was airlifted to Little Rock) and Saturdays (when he was at his worst and was intubated) are the hardest days and I relive every minute of those days.  I hope this will get easier over time.
It still feels a little surreal to be at home and nothing looks the same to me.  We have the best friends in the world.  We came home to welcome signs, flowers on the table, our mail delivered to us, a refrigerator full of food and meals brought to us.  Thank you so much again.  We appreciate it and it means a lot to us.
Evan has been doing well at home and we are starting to experience some of the normal baby issues such as reflux and tummy aches.  I am watching him like a hawk and am constantly worried, but overall I am doing better than I thought I would.  My biggest worry is that I would miss some of the warning signs of him getting worse again.  How do I know that his heart and kidneys are still functioning good enough?  How do I know the blood clot is really gone and not a new one has formed?  How do I know his blood pressure is still under control?  He looks so perfect though and I just have to trust in that.  It is going to take a little time to get used to our new normal and hopefully some of my anxiety and paranoia will ease up.  I am also a little sleep deprived, which does not make things easier.  Our night time schedule is pretty packed.  Here is what last night looked like: 11pm medicine, 1am nursing, 2am Hannah woke up and Scott went in to stay with her, 2:30 medicine, 4am nursing, 6am nursing again, 7am medicine and shortly after that Hannah was up for the day.  Trust me I am not complaining, I just want to document what my nights look like right now.

Last bottle in the hospital
Packing up our stuff
Getting dressed for the big occasion

Hannah is still loving on him every chance she gets.  She has been a wonderful big sister.  She likes to hold him, change his diaper and sing to him.

This was Hannah waiting outside of the CVICU the day we left the hospital.  She hadn't seen Evan in 3 weeks and was just so excited!

We finally came through the doors with Evan
Right before going outside for the first time
Hannah wanted to sleep next Evan that night.  She made herself a little bed on the floor, so she can be next to him and tell us if he cries.
On the drive home
Home Sweet Home
Finally sleeping in his own bed

Wednesday, February 6, 2013

Going Home

Yes, we were discharged from the hospital today.  We are staying in Little Rock for a few more days before heading back to Bentonville to make sure we are comfortable with everything.  I am still a little in disbelief that I am sitting here in this apartment in Little Rock and our son is finally with us (sitting on the couch with Scott sound asleep while he is watching basketball.....I am sure this will happen quite often).  It finally feels like we are a family.  It finally feels like it is supposed to feel from the beginning.....with the exception that I am still a nervous wreck (but I am actually doing better than I thought I would).  This has been an incredible journey to get to this point and the last 3 weeks feel like years.
The metabolic testing came back on Monday and it was all negative (Evan is a pro at test taking by now).  We were so thrilled with those news.  I was able to start nursing him the minute we got those test results.  Such a blessing!
 Evan's diagnosis at discharge reads: Cardiomyopathy of unknown etiology.  They still don't know what caused his heart issues and according to the doctor today they are still scratching their heads.  All that matters now is that he got better fast.  The doctors have no reason to believe that Evan has a "bad heart".  They think it was just "the perfect storm" that caused him to get so critically ill.  His heart and kidneys have made a tremendous recovery and are almost back to normal function.  They have no reason to believe that he will have long term damage or that his condition would worsen again (but of course there is always a chance and that makes me very anxious).  He will have to go to his pediatrician once a week for a blood pressure check.  He will also follow up with a cardiologist once a week for the first few months.  Luckily ACH has an outreach clinic in Lowell and one of the cardiologists from Little Rock is there every Wednesday.  The Nephrologist will see him monthly at the clinic as well.  Evan went home on two blood pressure medications and baby aspirin (blood thinner).
Last night his nurse said that in her 18 years in the CVICU she has never seen a baby turn around so fast after being so critically ill.  Then she said that she remembers hearing about Evan the night he came up to the unit (remember the note they sent to all the nurses) and that she went to see him that night and she can't believe that he is the same baby now.  I remember writing a few weeks ago that we need a miracle.  I believe we got one.  We are so thankful for all of the answered prayers and of course the doctors and nurses that cared for him during our stay.  We are so thankful to the doctor that made the decision to fly Evan down to Little Rock.  We believe that doctor saved his life!
I hope that a lot of you will get to meet Evan someday soon.  I am going to be very protective of him for a while since it is flu and RSV season and his immune system is weakened.  He will not leave the house very much (unless we are going to a drive thru) for a while.
Hannah has just been so excited to bring her brother home.  She was so excited to see him and hold him.  She will be a great big sister!

Evan had to pass a carseat test yesterday.  He had to sit in in for 3 hours (as long as it takes us to drive home) and they had to make sure his vitals didn't change (he passed with flying colors).

I have lots of pictures of the big day that I will share sometime soon.  Right now I am going to try and get a little rest.