Back Home We Go

Well we are going home today! They watched M on telemetry through the night and his heart rate only went in the 200's a couple times.  It is still higher than it has been but they have no explanation why it all of the sudden has changed.  So now he just will be seen more often so they can monitor him very closely.  We just have to keep a very close eye on him to watch for anymore changes, I guess he just needed a night stay in his other home.  Now he's good to go back to our real home! :)

Mobile

I set up blogger for my phone to try to make things easier so here are some pics off my phone. Its a pic of M last night in the bath.

Well We're Back

I guess we can call it here our home away from home. We
are back at the hospital for another stay. This morning my
mom and Z noticed he was breathing kinda funny so I grabbed
the monitor and it was saying his heart rate was in the 180's
so I checked it manually and got 200. He was also retraction
mildly. I called down here and they told us to get down here
to get checked out. When we got here his heart rate was 200
still. They did an EKG and it just said fast heart beat but no other
abnormalities. They've done labs, urine tests, chest and stomach
xrays and they still are trying to figure it out. They admitted him
at least for the night and have him on telemetry to see what they
can figure out. So we will be here at least one night maybe more
depending on what's going on. I'll keep updating but I'm doing
it from my phone so sorry if I don't detail because it's hard to
post on it.

Update!

Thanks for wonderful neighbors who let me use their computers while I don't have one!!! M is still doing really good! When he came home his diet was to eat 50ml every three hours so he'd eat about 10ml and the rest we'd have to put through his feeding tube. Well he was throwing up and pooping like crazy so at his appointment this past Thursday he hadn't gained as much as they wanted to so they changed his diet to 45ml ever 3 hours then in the night have him hooked up to the feeding pump and have it feed him continuous all night, and it has made such a difference he still spits up but it isn't throwing up like it was before. And yesterday he ate for the first time a full 45ml! He did it 3 times yesterday and so far 3 times today and we still have one feeding left so I'm hoping that one will go as good as the last ones have! Everything is still going as planned and he hasn't gotten sick so far! We still have to limit visitors so how we have decided to do that is just no kids over at all until at least after his second surgery and if your kids are sick if you'd wait to come until nobody is sick at your house! We have so much support from everyone and feel so lucky for all the friends and family in our life! We hope everyone has a safe and fun Thanksgiving (and Black Friday ;) ) I will be making my first turkey for our little family and my mom so I hope I don't burn the house down! We are getting a computer on Black Friday and then hopefully get the internet hooked back up that next week so I'll be able to load some cute pics of my little guy!

HOME!!!

We're home!!!! M got discharged Friday evening. Everything is
Going good, just trying to get adjusted to our new life! Is definitely
An adjustment! He isn't strong enough to eat on his own so he has
a feeding tube and pump. He has a home health nurse that will
Come in twice a week and a speech therapist that we will see also.
His nurse came today and he's up to 6lb 13oz! I'm trying
to post this from my cell phone So it's going to just be short and
sweet, hopefully we'll have a computer soon so I can do a better update.

FRIDAY!!!!

The plan is..... TO BE DISCHARGED FRIDAY!!! :) So I'll go back to Monday. Monday was supposed to be his swallow study but whoever took the order forgot to order it, so they didn't have any openings when our nurse called Monday morning so they ordered it for Tuesday. So monday basically we just hung out and took things easy. Monday night he started throwing up about every four hours bright yellow/green bile, and lots of it. They just decided to watch it until after his swallow study Tuesday. So Tuesday was a busy day, he was still throwing up so it was just patience until the study. The study was at 12:50 and he passed! He threw up during the study and that made the speech therapist kinda concerned. Because he passed he was able to start getting food into his belly after nothing in there for 2 weeks! So first they taught me how to place a feeding tube, once that was placed they started out by doing a very low continuous drip through the feeding tube into his belly, he handled that very well and hasn't thrown up since!! So today at 8am they started bolus feeds. They stared by doing 32ml anhour every 2 hours. They did that until 6 tonight and now at 9 they just started doing 5oml an hour every 3 hours. If he tolerates this well then in the morning speech therapy will come and we will start giving him a bottle! If he tolerates all that well and gets up to goal feeds they will send us home FRIDAY! He has to be on high calorie formula called pregestimil and it has to be concentrated to 27 calories. Breastmilk and formula is 20 calories. They do that because they say these heart babies have a really hard time gaining weight then that affects their next surgery and they have a harder time recovering from it. When we go home he will have to be on quarantine. They've told us until at least the second surgery no church, grocery store or anywhere where there will be people. His next surgery we are thinking will be sometime around february or march. We appreciate everyone and hope you will respect that we are going to be very limited on people coming to visit until the next surgery, because we cannot afford to have M get sick because if he gets sick at all in that time period he will have to come back and be hospitalized until he gets better. If you want to help out one way you could is if R will have playdates have him over to play sometimes if your kiddos are not sick so he can maintain somewhat of a normal life because I took him out of preschool/daycare. So I feel bad keeping him inside without kids his age all winter long. We feel we have the best family, friends, neighbors, coworkers, and ward! We are so blessed to have so many people who care about us and have helped us get through this all! I'm going to end this with a heart poem. Thanks to everyone again!

It's a beautiful day up in Heaven. Jesus is rounding up his tiniest angels, to go live on Earth, and be born. One of the sweetest angels says to Jesus, "I don't want to leave, I like it here, and I will miss you." He reassures the scared little angel that everything will be okay, and that he is just going for a visit. he is still not swayed on this idea. So Jesus kneels down, and says, "How about if you leave half of your heart here with me and take the other half with you, will that be okay?" The angel smiles and says, "I guess that will work." But the little angel is still a little scared. he asks, "Will I be okay with only half of my heart?" Jesus replies, "Of course you will, I have other angels there that will help out, and you will be fine." Then Jesus gives the angel more details about his plan. He says, "When you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart. Enjoy your time with your family, play and laugh everyday. And when it's time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves."

Movin' on Up!

We are officially out of the CICU/PICU!! The past two days have been big but good days! So I'll start with Saturday, Saturday they took out his pacer wires, art lines, AV lines, and the last chest tube so WE GOT TO FINALLY HOLD HIM!!! Such a great feeling to finally hold my sweet little baby again! That afternoon the Nurse Practitioner came in his room and said guys we have a problem so we were like oh crap what, and he said "I don't think we can find a reason to keep him down here anymore!" Problem for them because they fell in love with little M but good for us because that means he is doing great and is one step closer to going home! So he is still doing great but in the night he started having withdrawals from all the narcotics he has been on so they had to start him on methadone to help him get over them. Today around 11:30 they moved him to the Children's Surgical Unit. He is awake most the time and just is content as can be. When we got up here they taught us both how to give meds through his feeding tube just in case he has to go home with it. Tomorrow he has to do a swallow study to make sure he can protect his airway when swallowing and if he can then we can start giving him a bottle. It looks like we will be home sooner than anyone ever thought we would be, he has really exceeded everyones expectations down here. We are so proud of him and are so privileged to be his parents! We wouldn't have made it this far with out going insane if it wasn't for everyones support and prayers! I probably won't have a computer again until Wednesday so take it that no news is good news until then!

Great Day!!

Today they extibated him!!! He is breathing 100% on his own and WITHOUT oxygen!! He is such a little trooper! We couldn't ask for a stronger baby! They also took out 2 of the 3 chest tubes. Tomorrow they are hoping to take out the pacer wires and the art lines (sp?) when those come out they will take out the last chest tube and we will be able to HOLD HIM! It has been over a week since we held him last and I am dying to just cuddle him! Him being such a fighter and all the prayers that each of you have said, and the such great staff here is what has gotten him to where he is today! THANK YOU!! :)

Today

Sorry I haven't updated for a few days, we went home Tuesday night to spend some time with R and let him know we still exist so we just got back this afternoon. M has still been doing good, he is having a harder time when he is awake because now that he is awake more and not sedated he is sick of the breathing tube down his throat and fights it so they have been doing some spontaneous trials on the ventilator and he has been doing great. On of the times today though he didn't do very good but he was MAD the whole time so they are thinking he will do better once he is extabated. Today I asked the nurse what exactly he has because we have been told so many names through all this and honestly my brain is still kinda foggy and I have a hard time processing some things but anyways what he has is Hypoplastic Left heart, unbalanced AV canal, Mild Co-arch, small mitrovalve, and two ASD's. Anyways we are still all holding up really well considering. Thanks for all the kind words and prayers that are still being said, it means so much to our family and we are defiantly feeling all the love that is being sent our way.

Some pictures

M had a good night last night and tolerated the chest closure pretty well. The reason the first 24hours after is rough is because it changes the pressure in the chest. They have been really worried about him because he is so much older than the "typical" baby who has the surgery done, because his body was used to the pressure from before then they have had to change it two different times now. They are going to try to start to ween him off the vent tomorrow. They say it could take from 3 days to a week for that to happen. Today they put 2 feeding tubes in. An NG and and NJ. One is for food and the other is for a study drug that we are participating in. Here are some pictures before and after surgery.

The day before surgery

Our family

After surgery. We got rid of the first drainage tube today!!

Our little bright eyes! They are suprised how alert he gets! He will wake up and just look around and be awake for a good hour while on pain meds and sedation! It makes his blood pressure go up but not to a number that they stress about because it goes right back down after he goes to sleep. The white dressing on his chest is because in these pictures his chest is still open and that is what is covering it. Now he just has a long bandaid down his chest so we can actually see his skin now!

First Milestone

Today we hit the first milestone!!! Baby M got his chest closed!!! And also today he is one month old! Last night he had a rougher night. But I guess it is expected. He is still on a vent so they have to suction him out. Every time they would suction him he would decide to drop his heart rate into the 60's. So now they bag him while they suction him and that has helped those issues. When they close the chest it changes everything again so they say the next 24 hours can be pretty rough. Some of his labs are pretty low and he keeps having episodes where he drops his oxygen into the mid 60's. But he does bring it back up on his own. They say those are minor things so for us not to stress too much about them but that is easier said than done. So other than those things he is still just going along as planned. Hopefully tomorrow or the next day they will start weening him off the sedation meds and the vent. Once that is gone and they take the lines out that are going to his heart we will get to hold him!!! Thanks to everyone who is still checking up on him and praying for him!