Monday, September 28, 2009

One Happy Family, We are so blessed!

We have now been out of the hospital for 4 days! Colin is back to normal, well even better than normal. If you can imagine he is even MORE happier than before, and he was already a very happy baby. His feeding has surpassed what it was BEFORE the surgery, with less fussing and a lot less issues. This last bottle was 5 1/2 ounces in 15 minutes, it was taking me 45 minutes to get in 4 1/2 to 5 ounces before. He is a little more clingy than before, but he has a great excuse!

We are so very fortunate to have him with us, 20% of the babies with his condition never make it the 2nd surgery.
We can now see how his heart really affected him. This last surgery took a lot of pressure off his heart and it not making it work as hard. He is eating better, gaining the weight it would take him to gain in a week and is now gaining it in one day. He now weights 13 lbs 9 oz, he went into surgery at 13 lbs, so he weight more now! He is staying awake through bottles instead of passing out, which is slightly a minus.... the other night after his 9pm bottle, he was wide awake! He has never had to "go to bed" because he always passed out from the bottle.

Katherine is simply loving it that he is back! She is growing up so much, I can't believe it. She is taking dance and tumbling at school at really enjoys her classes. She has such a vivid imagination! She loves to play princesses.. she has a sleeping beauty and snow white costume. She makes Colin her Prince Charming, so we have to pick him up and make him kiss her so she can wake up. She is quite the talker and her conversation skills have really sky rocketed. She is really into birthdays lately. She told me yesterday that was was done with being three and is ready to be four! She loves to help clean, which is great because she makes the most mess. She is the spit up police, whenever Colin dribbles just a little bit, she yells "SPIT UP" and grabs the burp cloth and cleans him up. She is used to that we wash or purrell our hands a lot due to Colin's bo-bo, but I think she has taken it to a new level, we might be turning her into a germ-aphopic!

Friday, September 25, 2009

We are HOME! Released on Thursday Sept. 24!

Katherine hitting the balloon, making Colin laugh

Colin in ICU waiting of our room on 15

We we discharged from the hospital yesterday about 5:00pm, well they told us about 11:30am, then time SLOWLY dragged until they had all the paperwork ready. I wanted to post more while we were in the hospital, but time just flew by really. SO here are the highlights:

Monday Sept. 21 - Released from ICU and into our own room about 4:00pm. Matt and I got up to the hospital about 6:30am that day, my dad had stayed the night with Colin. Colin was his happy go lucky self, we were just waiting on a room to open up on the 15th floor. Matt and I went home about 7:00pm to see Katherine for awhile. Matt's mom and dad stayed with Colin. We got a call at 1:30am, Colin was being difficult and not eating for Bill. The only way to get out of the hospital, is to eat well and gain weight, so I got up there about 2:30am on Tuesday morning and never left to go home after that.

Tuesday Sept. 22- Colin had a chest x-ray and echo - everything looked great. Was having a hard time eating, mainly his reflux had flared up and they forgot to give him his second does in the evening the last few nights! So that was a BIG problem!!!! My dad stayed the night with me, so I can rest in between feedings.

Wednesday Sept. 23 - Eating picked up. Occupational therapist came to work with us on his reflux issues. She had some great advice. Colin will be able to start baby foods now! I think he will really like that! My friend Jess came to the hospital and have lunch with me and play with Colin, it was great to see her! We had friends check into the hospital for their baby's second heart surgery, so we went and visited them for a little while, it was a reunion.

Thursday Sept. 24 - Russell's birthday! And what a great present... when the dr's did their rounds, they said Colin's heart looks really good and that they were impressed with his recovery. His oxidation rates before the surgery were about 78-80 and afterwards has been about 83-87. His eating picked up a lot, so the dr. asked, when we wanted to go home, and I of course said "Today" and he told me to pack our bags. I have to admit I started crying!

When we walked through the door, Katherine AND Colin both squealed when they saw each other. Colin's eyes really lit up when Katherine was with him. She was dancing around and he was cracking up, they say laughter is the best medicine and I couldn't agree more. I was so great to see them BOTH so happy.

So we were in the hospital a total of 8 days, it went by both very fast and VERY long. The emotional stress of another heart surgery is hard, but we are so thankful that Colin did so well and was able to come home so quickly this time.. and NO FEEDING TUBE at all!!!

Colin is now where he belongs, at home with Matt and me, and his loving big sis! Thanks everyone for all the prayers, it really helped Colin with his recovery!

Sunday, September 20, 2009

ICU Day 3

I had to throw a picture of Katherine in here.. she got a new toy for being so good!
Hopefully we should get to our own room by Monday afternoon. They were going to send Colin today, but he was still pretty cranky, so they want to get his pain management under control. It is very typical to be very cranky after the Glenn, the body has to get used to the new blood flow, so the babies get very bad headaches. Plus he is only getting to eat about half of what he is used to so he is very hungry. But the plus side is he is eating just fine from the bottle so NO FEEDING TUBE this time!!!!!
In the morning they should remove his drainage tubes then by afternoon we should move to our own room and out of ICU, but things can ALWAYS change.
Today Colin started being more like himself. Today is the first day since his surgery that he was smiling, laughing, and playing a little bit. It was so great to start seeing our baby come back around. I missed him so much. We have pretty much been holding him the whole time since he is more comfortable in our arms than in the bed, but he did lay in bed and watch football for a little while! My mom is staying with him this evening and my dad is spending the night with him.

Our friend Elle was suppose to have her second heart surgery Monday, but she got bumped for a little baby that was in need, so her surgery is now on Thursday. Please pray for Elle and this other heart baby. Both Colin and Elle got bumped for babies who needed the surgery more, I am very happy that Elle and Colin are doing so well. Our families are very lucky! Somtimes we forget how blessed we are in life until we see others that are struggling.

Saturday, September 19, 2009

ICU Day 1 & 2

Matt holding Colin on Saturday
Colin's "Great Job" & NEMO stickers on his bobo
Friday Sept. 18
I got to the hospital about 9:00 am, Matt's dad had been there most the night. The doctors were happy with Colin's progress. The only thing they noticed was that his platelet count was low from loss of blood and was causing more drainage out of his chest tubes, so they gave him some platelets. It worked and the drainage out of his tubes was minimal. They had a hard time keeping him knocked out, he kept wanting to wake up, and of course was very unhappy when he woke up. Once they got his dosing right, he slept much of the afternoon.
That night about 7:00 pm, his breathing tube was taken out, it was ready to go before then, but he was a little too knocked out and they wanted him to be a little awake for that. He had two chest x-rays, everything looked good both times.
11:30 pm 3 oz pedialite in 5 minutes wanting more
1:15 am 1 1\2 oz formula in 5 minutes
4:40 am 3 oz formula in 15 minutes
6:30 am 3 oz formula in 5 minutes

Saturday Sept. 19
Matt woke up this morning about 6:00am and headed up to the hospital. Matt's parents were there already, Matt's dad spent the night and Matt's mom got there about 5:00am.
I stayed home with Katherine and took her on some errands with me. I came up about noon (which Matt and I are still here and it's 9:00pm) Matt's dad is coming back tonight.
The doctors decided to leave the drainage tubes in as just a precaution, that should come out tomorrow. The arterial lines in his neck and wrist were removed and his bandage on his chest came out (now just the dressing).
He has been eating 2oz with rice cereal mixed in every 2-3 hrs (they backed the feeding down today, the night nurses were giving him more than what he was suppose to have.) He has been drinking the bottles in about 10 minutes.
MOST IMPORTANT ------ Matt and I have been able to HOLD him ALL day LONG! Colin is in a much better mood when we hold him.
Plan for tomorrow is to get the chest tubes out and maybe get out of ICU, but that depends on if there are any beds and if the doctors feel that Colin is ready.

Thursday, September 17, 2009

Got to see Colin after surgery

After surgery, we all got to go up and see Colin. He was out on morphine and was resting. He looked a lot better this time, Dr. said that 1)the initial shock of all of it is better than the first time, you know what to expect 2) it's a less invasive surgery, less tubes and things going on with him 3) they are bigger and stronger for this one.
Colin will be knocked out all tonight, so we came home to get some rest. Tomorrow I am heading back up there in the morning, good thing we only live 15 minutes away. The "plan", and I say plan because it can always change. The plan is tomorrow the breathing tube will come out, they will give him a few hours to make sure he is breathing fine, then he can try to bottle feed. If he does well, we won't have to have a feeding tube. Then hopefully by Sunday we can be out of ICU in our own room, and maybe home by next Thursday. But we have heard the average stay for this is 7-10 days, so we will see. Just depends on how well he can recover and go back to eating like normal.
We had to wait to go in and see him because there was a medical emergency in the ICU, something every parent fears. Coming back from the information desk, we overheard one family member tell another that their little girl was not going to make and and the family was called in so say goodbye. It brought all of us to tears, so hard to imagine. We are so thankful for the blessings we have with Colin.
In sharing this story, I hope everyone reading hugs and kisses their children, nieces, nephews, grandchild extra tight tonight, for there are so many things out of our control and second chances are hard to come by.
Before Colin was born, I thought you plan to get pregnant, have a baby, the end of the happy fairy tale. Never does it include the things we have experienced. I am so grateful for every second I have with Colin, even if he is spitting up every thing all over me, or keeping me up all night, or fighting me on his medicines. I love him for his smiles, his laughs, his wide eyes to the world, his grunts, giggles, and growls. I love the energy he brings into Katherine's life, I love the smile she has when she comes home to see him, how tonight when I talked her her the first thing she said was "Is Colin alright, did the doctors make him better."
I pray for the family that is saying their goodbyes right now, how I wish in a million years it never has to happen to anyone else. I pray for all the kids in ICU, may they get better and stronger, and grow up and prosper.
I will be heading back up tomorrow. I will try to keep posting.

Surgical Update #2 - He's Done!

Colin is out of surgery! We just met with his surgeon. Everything went well! They removed the shunt from surgery #1, did the Glenn, and enlarged his left lung artery. Colin is now on his way to CVICU and we will be able to see him in about an hour!
The success rate for this surgery is 95% (the last one was 80%)!!!!! So that is exciting to hear.
His next and final surgery will be in about 3 years! Good, we need some time to rest from this one!
Can't wait to give him a kiss, will have to wait to give him a hug, but it will be worth it!!!!

Surgical Update #1

We just spoke with the surgical nurse, they are now starting the Bi-Directional Glenn. Though they took him back at 9:00am, it takes a long time to put a baby under and they put a scope down his throat to get a better look at his heart. The actual surgery should take about 2-3 hrs, the whole process is about 6 hours or so.
The great news is that Colin's valves will not have to worked on this time!! He still has a slight leak, which sometimes is improved after the surgery. But they felt it wasn't enough to have to operate on, which is great news, since to do it they would have had to stop his heart. We are very excited that they will not have to address that.
We will have another update in about 2 hrs.
Will keep everyone posted.

Update from Hospital - Surgery going on

Waiting for surgery

Wouldn't sleep in his bed

Katherine kisses are the best

Day before surgery

Eating his IV bandage

Watching cartoons

Colin went into surgery this morning at 9:00am, they were running a little behind. Colin was doing pretty good, he was starting to get cranky because they would not let him eat since midnight.
We got to the hospital at 7:00am yesterday for all his lab work and pre-surgical test. He had a chest x-ray, EKG, blood work, consultations with the surgical & anaesthesiologist teams, wellness check to make sure he is fine for surgery, and an IV put in. He did well all day long, flirted with EVERYONE!!!
We got to our own room about 2:30pm, so we had the evening to relax.. somewhat. Matt's parents came by and spent some time with Colin while we got a bite to eat.
Then Russell brought Katherine to see him. Katherine (Russell) was very sweet and brought Colin a new toy, which Katherine TOLD Colin it was now his favorite toy.. what are big sisters for! We didn't get too much sleep last night.. Colin did not want to sleep in the hospital bed, ended up all three of us on the fold out bed.
We were up at 4 am this morning. It was an emotional morning. My parents came to see Colin before surgery.
Colin was suppose to go up for surgery at 6am, but they didn't come get us until 7:15, then we waited some more with him, finally it was time, about 9:00am.
It was so hard to hand him over, of course I broke down. I know he is receiving good care right now, but what can I say, he's my baby! No mother ever wants to have to hand over a child to have major surgery. But I know his life will be so much better after this.
They are going to update us every two hours, so one should be coming up soon.
I can't wait to see him this evening, though I know it is hard, and that image of him after surgery is the worst. But we will make it through this.

Sunday, September 13, 2009

Surgery Date Change and Roller Skating

We started the weekend thinking we would be heading to the hospital on Sunday to check in for surgery. Matt and I got up Saturday morning and started our errands when Matt got the call that Colin's surgery has been pushed back to Thursday September 17, my dad's birthday. There is a heart baby that is need of his surgery on Monday or they don't think he will do well if not.
I have to admit at first I was very upset. When we went in to clinic last Tuesday, the cardiologist saw a decrease in Colin's heart function and was glad his surgery was less than week, she said we were going to be on the no "bump" list since Colin is ready for surgery. He has been struggling with weight gain, which is a side effect of the decrease in his heart function. Plus it is mentally draining to prepare for another heart surgery, I was just really happy it was time and we can move on.
Saturday when the surgical team called, she said our surgeon looked at Colin's test from Tuesday and feels that though his function has decreased, he is still doing well, his oxygen sats have been fine.
Then I realized how blessed we are that Colin is doing so good that his surgery can wait a few days and there is a baby just like him that can not. I started to think about if that was my baby who was in need right away. It put a lot in perspective for me. I am so thankful for Colin's health and wish this other baby and his family all the best.
So now it will be on Thursday, we check into TCH at 8:00am Wednesday morning.
This weekend Colin has been sitting up on his own for about 20-30 seconds at a time before he tumbles over. He is advancing so well. They told us though after surgery not to worry that he might degress some. But I think he will come home working on sitting up still!!

Today just to get out of the house for a little while, Russell, Lara, and me took Katherine roller skating for the first time. Matt has not been feeling well this weekend, so he stayed home to rest. Katherine at first was a little scared of it, but she got out there and did really well and ended up liking it a lot. We even did the Hokey Pokey out there! I have a feeling we will be doing this a lot for the next 10 years! She was doing better than some of the kids bigger than her.

Thursday, September 3, 2009

Thriving at 5 months

Colin turns 5 months old today! I can't believe how fast it has gone by lately.
- Now weights right about 13 lbs
- Teething has began
- LOVES to play in the excersaucer
- Laughs hysterically when Katherine jumps and dances around
- Still struggles with acid reflux
- Reaches for objects.. especially food in your hands
- Everything goes to the mouth, especially his foot
- Can do mini-push up
- Rolls from front to back
- Can roll in circles around the floor, can move himself off his playmate
- Drinks 5 ounces 6 times a day
- Can sit by himself for a few seconds at a time before falling over
- Sleeps most the night.. we have to WAKE HIM up for his 1am bottle
- Recognizes own name

Colin is a very happy, laid back baby.. which is great since Katherine is soooo full of life!
He never cries except for feeding times due to acid reflux!!
Katherine and Colin really do love each other so much! They are each other entertainment in the evenings. Katherine is always "Colin watch this", "Mom bring Colin here to me", "I want to play with Colin", "Can Colin take a bath with me".. and so on. It will be hard on Katherine when Colin has to go back into the hospital in a couple of weeks. We are trying to prepare her now. She seems to understand, but we will see.