Wednesday, March 31, 2010

6 days

and we are HOME!!!!!! Eli was discharged this afternoon!! He had a rough night, his little tummy was not liking the formula and he was throwing up. The docs came in a few times over night to check him out, but found nothing wrong. They think it may be a little bug. We were discharged with strict orders to watch for dehydration. He seems to be doing better.

6 days was all it took for my little prince to recover from open heat surgery...God is so good!!

No time to write now, I've got some serious snuggle time to do with my cord free baby!!

Monday, March 29, 2010

Grrrr---ate!

Eli had a spectacular day! He is off every single medication...except Lasix and Diaril. He has not had any pain meds since 2am! and He has been fluid negative, which was the goal for yesterday. His right lung is looking better but still not great. Today they took him off of his high flow oxygen and put him on 2 liters of regular oxygen. His blood-work today showed his potassium and magnesium were low, so they gave him a few riders

Sunday, March 28, 2010

On the way

right out of here! Eli is doing GREAT!! He is off the high flow oxygen and on regular 2 liters. They continue to ween him off his meds. They want to get his drain tube out tomorrow and hopefully oxygen off today! They want to try and get him off the morphine, which he hasn't had since 2am. He is fluid negative and therefore his potassium and magnesium was low, they gave him riders for that and will retest in about an hour. He continues to eat like a champ and has not had a single feeding through the ng tube! Woo hoo. He is also gaining weight...and because we know he is fluid negative, we know its good weight gain and not just extra fluid.

The NP said that we should anticipate going home wed. or Thursday this week! That makes us super excited.

Saturday, March 27, 2010

Day 2 post Op

10 am- Second x-ray looked better. They are going to continue CPT every 2 hours till 9pm. They are also going to try and ween him off of the high flow oxygen as well. He gets to eat again!!

6:30 am- We got here early this morning to find out that Eli is having some trouble with his right lung. They believe he may possibly be retaining some fluid, they think it might be a little collapsed...they are not 100% sure sure what is going on. They switched his oxygen to a high flow in hopes to push open his lung. They did try to take his oxygen off yesterday but he quickly de-sated, so it went right back on. His labs have all been coming back fine, even his blood gas. We are waiting for rounds still but anticipate getting some answers soon. They also did some CPT and then they repeated his xray. We hope that it looks better than the last one.

Friday, March 26, 2010

Thank You!!!

Just wanted to take a few seconds to and say THANK YOU for all the wonderful cards!!! Eli has received so many well wishes!! We have been surrounded by people who love, support and encourage us and we are so thankful for that!! We are beyond blessed to call you friends! Your generosity amazes us and we are continually surprised by your willingness to help!! Take a look...


Day 1 post op

8:00 am- Eli is doing wonderful! The docs just finished rounding. The goal today is to extubate him and let him drink clear fluids po (by mouth). He is in a junctional rhythm but his BP and HR have stayed normal, so they are not to terribly worried.  Eli is more awake and thrashing a lot. The just stopped the sedation meds. Dr. B said he was very happy with his blood output and that we shouldn't be worried at all. He actually said we were on the fast track out of here, I hope he didn't jinx us! We will keep you all update as the day goes on! PS. If you go to Here you can send us a FREE card! We have already gotten a few, but we love them and cant wait to show them to Eli one day!!

9:30 am- Eli is extubated and on 2 liters of oxygen. They just gave him some more morphine and Tylenol. He is in pain and it breaks my heart!!

12:30 pm- Eli is Finally resting. It seem like they have gotten his pain under control and they just gave him a little Versed (midazlom). Apparently he metabolizes meds quickly so it probably wont last long. We are happy here, we believe we made the best decision we could have. The nurses have been exceptional as well as the docs and NP's. Eli is in the best hands he can possibly be in!!!

Eli is a VERY spoiled little boy! He has gotten 10 cards!! and his girlfriend sent him a cute little worm stuffed animal!!! (Thanks Davie, Eli LOVES it!) We are so thankful you all love our little man, he is a very special little boy!!!

Thursday, March 25, 2010

Oh no

They just took Eli back into surgery. He was bleeding more than they had wanted him to, so they send him back to open him back up to see if there is a leak somewhere.

Done Done and Done

Eli is DONE with his open heart surgery. It seems so weird to say that. He is done! He is out and he is peacefully "sleeping." The nurses say we wont see any eyeballs or movements till tomorrow sometime. His central line is in his right wrist and his art line is in his left collar bone area. Hes got another little IV in his foot. They have a tube draining his tummy, a foly in and then his drain tube (just one). Its so hard seeing him like this. I Hate it. I can't kiss him, I can't snuggle him, I can only rub his left foot as it the only part of his entire body that is tube free.  But he is alive, his heart is fixed and he is loved! We are so very thankful for this hospital, for the surgeon and for the nurses that are caring for our baby!

Just the start

UPDATE at 12:05: Eli is all down and in the ICU.They are working on getting him settled and then we can go and see him!

UPDATE at 11:15: The repair is still going well. They are beginning to warm him. They are going to do an esophageal study, if all looks well they will begin to take him off bypass. We still don't know if they needed to work on his Pulmonary arteries, the NP is going to check on it and let us know. Things are going well!

UPDATE at 10:00: All the lines are in. He is on bypass and doing well. They are beginning to open his chest and starting to repair his AV canal.

We are here at the hospital in the waiting room. Our bet friends are here with us keeping us entertained. Eli was taken into surgery about an hour ago. We are expecting our first update around 9am.

Wednesday, March 24, 2010

We are here

We are here in Chicago. We got in late last night. Unfortunately, the Ronald McDonald house is all full so we are staying at a hotel near by but we are hoping something opens up today.

Eli had his pre-op appointment this morning. They did blood work, x-rays and then a NP (Nurse Practitioner) did a physical. Everything went well. His potassium was a little high but they don't seem to worried about it. They are going to recheck it tomorrow morning when we get there. Other than that we are ready for surgery at 7:30 tomorrow. The rest of the day we are going to be relaxing and enjoying time with our wee one.

I am nervous. My tummy is in knots and I have been having trouble sleeping. I am going to focus on the positive and the light at the end of the tunnel. A week from tomorrow we should be home with a happy healthy little boy! I can't wait!

I will be updating this tomorrow as we get new news. They say someone will be updating us every hour and a half. Keep Eli in your prays as well as the surgeons and nurses.

Sunday, March 21, 2010

this and that




Those sweet eyes melt my heart! This weekend, in the midst of packing, planning and organizing, I still found time to snuggle and love on my littlest hero. In return I got many toothless smiles, nuzzles and even a few little sounds. Tuesday night we head to our home away from home in the big city. Wed. morning Eli has pre-op bright and early at 8am. After that we plan to go on a walk grab some lunch and enjoy some freedom. Thursday will be the BIG day. It's bitter sweet. 


A few days ago the doc. gave us permission to start baby food. This particular day Eli's choice was carrots. He loved them and responded with enormous amounts of tongue thrusting. 


Malachi got to finger paint with some cherry flavored pudding. He to enjoyed the gooey hands and face. His occupational therapist is brave, very brave. 


He also took his new ride out for a spin. It's a basic starter car and he looks forward to upgrading soon. 

Friday, March 19, 2010

Change of plans

Eli's surgery got moved...to Thursday March 25.

Wait what?

Yep thats right friends. I got a phone call today saying that they were going to move surgery...TILL APRIL 24! An entire month later. This momma was not a happy camper. After some screaming and stomping of the feet 
phone calls and civilized discussions, we got it move up rather than back.

 I mean really all of this so the surgeon can go on spring break? Ha, while I sit in a recovery room with my 8lb 4 month old who just had heart surgery? It hardly seems fair.  while my sons genetic heart defect pays for his vacation in a tropical paradise, I will dream I am right there with him, basking in the sun (rather then the hospital lights and sitting in a beach chair (rather than a sofa chair). Ahh...the good life.

I am thankful. Thankful that they were willing to accommodate us. I am thankful the nightmares will only last a few more nights and by this time next week, my little peanut will be in recovery with a fully functioning heart. Ahhh...spring break here we come...destination? The first day of our new life.




Thursday, March 18, 2010

Nightmares

The hospital nightmares have begun. Those awful wake up in the middle of the night, mind going a million miles a minuet, nightmare. I hate them. This first began in the weeks leading up to Malachi's heart surgery. With him, I drempt that I tripped over the bi-pass machine in the or. It unplugged from the wall and he died. I woke up crying. It was so real to me. The next nightmare I had was we were in the hospital recovering and there was a gunman on the lose. Not fun, another abrupt interruption to my sleeping. These dreams continued for days. Then Malachi had his surgery and they stopped.

Much to my surprise, I was awoken the other night to another horrifying nightmare. This time Eli was in the recovery room, intubated. The doc asked if I have ever been intubated, I answered no. He proceeded to strap me to the table and intubate me "so I could fee what it was like." But he keeps me intubated for days on a bed next to Eli. It was horrible to be awake and with it, but not able to talk or eat. Ugh.

I hate the weeks leading up to heart surgery. It's all I can think about and dream about apparently. It feels like I am living each day to get me to the next so that we can be one day close to the 31st. I feel like our life is on pause and we can't move forward until Eli's heart is fixed. I am so looking forward to the big day, but at the same time I don't want it to come. I don't want to see my baby hooked up to everything in the room with a machine breathing for him. I just don't want to do it...again. I don't want to read over the or room notes and see that they used a saw to cut his chest open or that they stopped his heart and relied on a machine to keep him alive. I just don't want to do it.  BUT...I will do it, because I know that what lies on the other side is the sweet life. Life with no meds keeping him alive, the life of no NG tubes and the life he would never have if we didn't do this surgery.

In this situation, the grass is greener on the other side. We just  have to get through the dessert to see it. And we will. Again.

Monday, March 15, 2010

Potty Training

I know this may be early, but I have already begun thinking about the dreaded potty training. Malachi will be 2 this summer and our plan is to start working on it while Josh is home from work. Bad news is, I have no clue how to potty train. To me its as easy as sitting on the pot and going, to kids, not nearly that easy. So I am looking to you my dear friends who have mastered peeing on the pot...teach me your magic! I would love any tips, tricks or secret bribery to accomplish this goal. THanks!

Friday, March 12, 2010

Us moms

Last night I had the joy of going out to dinner with another mom. Her youngest has Down syndrome too and we met while in the hospital with our little peanuts. Her daughter is a day older than Eli. They too, will be going through heart surgery this month. Dinner was wonderful and we talked all about out kids, of course.

On the way home I began to think about us moms. Not the mom to the  "perfect" blonde hair, blue eyes child, but us moms who have been chosen to mother the extra special. While driving through the dark country side (yes we live in the middle of nowhere), I began to cry. Us moms have an instant bond. Without saying a word, us moms just know. I spotted a mom at the store the other day who was fighting with her spirited 4 year old daughter, I had a little chuckle, seeing the mom tell her daughter "no you can not get candy" made me think of my own struggles with my stubborn almost 2 year old. Her daughter had Down syndrome, and although I never said a word to her, we locked eyes and she knew I understood.

Us moms can talk for hours, us moms "get it" and us moms have a invisible bond that will last a lifetime. I am thankful I was chosen to be an "us mom."

Thursday, March 11, 2010

LONG OVER DUE

This post is LONG over due! I have been busy, crazy busy, like run around not know where you are going busy. Life with 2 kids under 2 has proven to be eventful.

Eli was taken to the ER on sat. this past weekend and diagnosed with croup. They put him on a steroid and sent us home. Monday he was breathing funny and retracting a lot so Josh gave him a breathing treatment (Malachi's) and let me know before he left for work. About 2 hours later when I got up, I went in to check on him and his list were slightly blue and he was dusky. I decided to take him back to the ER. I gave him a quick breathing treatment and threw both the kids in the car. At the ER they took him right back and stuck him in a trauma room.  The oxygen was thrown on a about 10 nurses got blood, started an IV, did an RSV swab and started him on continuous breathing treatments. The doc came in and asked a bunch of questions and told me that we were going to be transfered to another hospital in town. He was in "trama" for about 3 hours before we were admitted to the other hospital. When we go there he seemed to be doing fine. He went the remainder of that day without oxygen and all night. We got to come home late tuesday night. They are not quite sure what happened, but he is now on breathing treatments every 4 hours for about 2 weeks.

We did get his surgery date for March 31st. We are excited to get it over with, now we just need to keep everyone cootie free till the big day!

Malachi is doing well, we start music therapy today and I am super excited for it. He LOVES music, so I know he will really enjoy this! They come right about the time he goes down for a nap, so we will see how he does.

Things are going well otherwise. The snow has finally melted and revealed loads of dog poop that hasn't been picked up since fall.Yikes! The water in the pool has started to melt and we have enjoyed some 60 degree days here! Unfortunately they have been rainy. That is all for now!

Wednesday, March 10, 2010

Ohhh, yes.

Eli is having heart surgery March 31st. We are excited about this date because it is in the middle of Joshes spring break, which means he will need to take fewer days off!

Gotta run, Ill write more later!

Sunday, March 7, 2010

Croup

On top of all the other cooties we have in a house, we can now add croup. Yes my littlest love and I made a trip to the ER early sat. morning. After 2 breathing treatment, one being a steroid, we got to go home. I am so thankful he didn't get admitted, but I am still worried. His cough is nasty, so very very nasty. His eyes turn red and his entire body moved. Not fun. He is not sleeping at night, he is not content anywhere. We go back to the doc tomorrow morning praying that she has a mystery drug that will help our peanut. Please say a little prayer for all of us tonight.

Friday, March 5, 2010

blah

Blah, Blah, Blah...

Both of my boys are sick. Malachi has a sinus infection and bronchitis. Eli....Pneumonia. Blah...

Eli had a night stay in the hospital so he could receive antibiotic injections, we got home yesterday afternoon.
Malachi is now on 2 meds, with breathing treatments every 6 hours. We gave Eli 2 treatments too...he was sounding weezy. Blah, Blah...

Today we took Eli to Children's. He had an Echo and then we met with the surgeon, Dr. Backer. Well, that didn't go as planned because Dr. Backer was in surgery, so we met with his partner, Dr. Russel. We were expecting to get Eli's surgery date but since his Echo ran long, the secretary was already gone. Now we wait till monday. Blah, Blah, Blah...