Change of Plans

This is the longest hospital stay so far.

Everyone keeps complaining how hot it is. Id love to feel the heat, or the sunshine on my face, or the wind blow in my hair. Id love to breath in fresh air, not stale dry hospital air.

But, the truth is my son is in great hands. Being here is hard. Its lonely, very lonely!

Yesterday, we got news that we would go home tomorrow. Well tomorrow has turned to today and we have no end in site.

The past few days he has been weaned off oxygen and has done well during the day but then his stats dip at night so they put him back on it. This happened last night as well, and the doctors what to figure out why.

They say kids post Glenn are very stable, and hardly ever require oxygen. They think that he may have some fluid in his lungs so they upped his lasix and are going to see if that helps.

Its very frustrating hearing different things from different doctors.

Yesterday was hard. It was day 3 that Carson had not pooped. (Once you have a kid you become poop obsessed, and really pay attention to these things.) When he had pooped three days prior it was because of a sapository. So I was concerned and he was extremely uncomfortable. I asked for a sapository again and they gave him one which made him go right away, but it wasnt much. 10cc’s when weighed.

I asked if in a couple hours we could give him another and they said they would talk to the doctor. They tried to give him milacon, which was a joke. He barely takes a bottle of breastmilk, so he definitely wouldnt drink that nasty stuff mixed in non-flavored pedialyte.

They had to give it three hours to see if it would work. I knew it wouldnt, but they had to wait. I was so frustrated. They acted like they knew my baby better than I did. Finally the stupid three hours of suffering was over at 11:30 and after me getting pissed and arguing with them they gave him another sapository.

He fussed almost all night and he was doing that hold-your-breath-I’m-in-pain breathing, so of course that didn’t help his stats.

Yesterday the plan was that we would go home, he would have oxygen at home for when he needed it, and that we would have a follow up appointment to see how he was doing.

Today a new cardiologist came in, and said that he wanted Carson to go to the cath lab AGAIN. I sternly told him that all the doctors need to get their shit together.

I was so mad. Its like telling a little kid they are going to disneyland tomorrow but when tomorrow comes saying oh I was just kidding.

When the doctors did rounds today I went out and took part in it. I wanted to know what the plan was, if any. They said they were all going to get together and discuss things and then let me know.

Apparently, on Monday he will have another echo done, another bubble study done, and a GI scan (where they put a camera down his throat and look at the back of his heart.

Carson seems to test these doctors every step of the way. He has not been a typical case since he was diagnosed. They say its weird that the left side of his heart developed but his aorta didnt. It was also weird that his aorta kept narrowing, and now its weird that his stats arent stable.

So here we are, still in the hospital. It will be 3 weeks on Tuesday.

This is hard, its a test of everything. I am trying to be the best mom I know how, and the best girl friend I know how. Mine and Nicks relationship has gotten so much stronger because of this, but it has been tested. It’s so hard being here, with Carson alone. Sometimes I am resentful. Sometimes I wish I could go to work just to get away. But more than anything I am grateful. I am grateful that he is such an amazing dad. I didnt have a Dad growing up. He failed to be around, and my heart glows to see Nick with Carson. As soon as he walks through the door Carson stops what he is doing and just stares at his Daddy and smiles so big. I love it. Nick has been amazing. I am so grateful that he gets to go to work and support us financially while I get to be here 100% of the time with my baby and for that I am most grateful.

Making Progress

Its been a very long couple of days. Today is our 16th day in the hospital and the lack of sleep is getting to us.

Yesterday was a big day, he was transferred to the step down unit. This is the last step before going him. They are saying we should go home this weekend =D

Last night was frustrating. They came in every hour to do something.

Here they are very concerned with input and output, because it show how hydrated the kids are among other things.

Yesterday, Carson only head 3 wet diapers all day and didnt poop at all. He has been very fussy and irritable. 

He is definitely suffering from the “Glenn Headache” because his body has to get used to the new pressures. I also think gas is hurting him as well, and the fact that he hasnt pooped since Tuesday. Carson usually goes at least two times a day. 

When he came out of surgery and started to wake up he was thrashing his head back and forth because he hated the breathing tube. Because he was thrashing they were trying really hard to keep him sedated and asleep, so they were pumping him with meds (morphine and something called dex). These kind of meds can cause constipation so I think thats another problem.

His stats are decent. He is on a half a liter of oxygen and is doing well except for when he cries but that is expected. 

He is back to his normal happy smiling and flirting self most of the time.

I am sick of being here, Im tired, and breastfeeding is a challenge right now.

I pumped every 2-3 hours while he was in surgery and while he was recovering before he could eat. This made my supply increase A TON. Currently I am always engorged and leaking. I could pump to realieve it, but breastfeeding is supply and demand. So pumping would create demand and thus creating more supply which I dont want. So right now I have to live with what feels like rocks on my chest until my supply regulates itself.

Being here is difficult. There is not a ton of support from other heart parents. Really no one talks to each other. The rooms here are great. They are private, with a couch that turns into a bed for the parents, and a private bathroom with a shower. Its wonderful, but it is bitter sweet because you are in your own world and so are the other parents and no one talks to each other.

I would have given anything to talk to someone in my position now when I was pregnant and Carson was just diagnosed. I was actually talking to another heart dad the other day and he was telling me at the Childrens Hospital where his son had surgery has a heart parent meet up once a week and its awesome because it helps them be able to support one another.

They have social workers here, and that is great, but unless that social worker has a heart kido then they really cant relate on that level. There are some groups online that are supportive but I yearn to meet other heart parents in person. 

I actually found and joined a group on facebook that is regional based and it ended up that a couple of the moms kids had appointments here at the hospital on Monday so I got to meet them briefly. It was so nice to talk to parents who have been there and know EXACTLY how you feel. 

I was so excited! Then I got a message on facebook. Apparently because Carson does not fit the specific diagnosis that they support group is made for I am not welcome to be a part of it. The funny thing is that the group is for HLHS and HLHSers have the Norwood and the Glenn and then the Fontan. The only difference between them and Carson is Carson wont have the Fontan but he has had his Norwood and Glenn. I hadnt been in the group long but I already felt like I could relate to the ladies and they could obviously relate to me.

When I got that message it brought tears to my eyes. I was so hurt. I know there group offers care packages, but I wasnt asking for anything like that. I just wanted someone to talk to, someone to relate to, someone who knows exactly what its like to know where I am. And I want to be able to be that support for a mom who is just starting this really difficult but rewarding journey.

I dont understand how you dont support someone. The girl wasnt rude, she was actually very nice. She linked me to a few other sites for support. I just hope that they learned from this, because if they would have talked to me first they would have realized that that is exactly where I belong. 

I actually would love to start a support group here. One where we meet up in person, once a month or so. Id love to be there for a mom who is pregnant, scared out of her mind, to talk to, to support, to listen and to tell her its going to be hard, but its going to be ok. 

Carson has taught me so much. You never know what someone is going through. If you see Carson with his clothes on you would never guess that he is a heart baby. He seems normal. Never judge a book by its cover!

5 Months Old Today

Yesterday, I did not cry at all! Carson did great. 

This is my facebook update from yesterday. Sorry I didnt not update the blog, the day got away from me.

Carson UPDATE!! I am so proud of my little warrior!!!!!
He is doing great! He is on meds to keep him asleep and for pain management. They took out his (2) drainage tubes today, as well as his pace maker wires. Last time he had one drainage tube and it didnt come out till 5 days post OP. They are pushing him to see how much he is willing to breath over the ventilator. If he does extremely well, they will take it out tonight, if not they expect it to come out some time tomorrow. We can hold him as soon as the breathing tube comes out. He is still not able to eat, because of the breathing tube. They have him on IV fluids though so he is getting nutrition. Overall he is doing well. He is pretty swollen, but that is to be expected. If you have questions let me know. =) Please continue to pray that he kicks recoveries ass!

Today, Carson is 5 whole months old!! Time has gone so fast! Seems like yesterday we were just here recovering from his first open heart surgery. It’s so crazy and sad that in only 5 short months of life he has gone through so much. I couldnt be more proud of him and how amazing he is.

Today has been a hard day. I was so anxious to have his breathing tube out, but its so freakin scary when it does happen.

They took it out about 11:45am and he seemed like he was having a hard time breathing on his own at first. Also, they had to take him off the narcotics because it sedates him too much and he wont breath. So they put him on some kind of strong ibuprofen, and something else. 

He was not happy after they took his breathing tube out. He was so upset. I bet parents who hear “I miss my babies cry” would think I am crazy, but I seriously miss his cry so much. When they took his breathing tube out he cried, forever, and it was a raspy very different, sad cry. It broke my heart.

The Glenn procedure makes the blood from his head and shoulders go straight to his heart, and while his body gets used to the pressure change it causes him to have a major headache. They say to compare it to the worse sinus headache you have ever had, and that is how he feels.

When they took his ventilator out he cried a ton, and his head was bothering him. He wouldnt calm down for anything and they told me I wouldnt be able to hold him today. But when he was crying I couldnt leave his side. He was so upset I was desperate to sooth him. I lifted his head and laid it in the crease of my elbow, to make it seem like I was holding him and I patted his butt. After about 15 minutes he finally started to calm down.

I stood, hunched over his bed for at least a half hour if not 45 minutes before I asked if it was possible for me to hold him. Thankfully, his nurse today was awesome and understood Mommy is the best medicine, and he let me hold him.

After the initial move, he calmed down and slept in my arms for a couple hours and then in his daddy’s arms for another hour.

Right now it seems like the pain medications have finally kicked in and he is peacefully sleeping in his bed.

Tomorrow the plan is more pain management. They say they headache can last about 3 days, as the pressure regulate themselves. Currently he is on 3 drips. One pain med, lasix (to get rid of fluid), and melrinone (heart medication). Tonight they plan on weaning the melrinone (I hope I am spelling that right).

He is also on oxygen. 6L of oxygen! Before surgery he was only on one. They said he cannot eat until he is on 4L of oxygen so hopefully they will start to wean that as well.

I am pumping to keep my supply up and also so he can be bottle fed in the beginning to they can closely monitor his intake. I love that I get to pump. I am a control freak, and I hate having no control over this situation. Pumping gives me a drive, and something I have control over that I get to do for him.

I have been surprisingly emotionally stable. What a terrible sentence, but I really dont know how to say that any other way. This has been hard. Really. Freakin. Hard. There is nothing easy about this. I just am grateful. I am grateful that my baby is alive. I am grateful for the staff here at CHLA. But most of all I am grateful to be Carson’s Mommy!

Sometimes I feel so special, I GET to be his mom. I dont understand how I earned the right to be his mom. I mean really, everyone tells me “I dont know how you do it.” Well, I dont know how I do it either! I just do, and I do the best I can and the best I know how. What I do know is love is the best and strongest medicine, and my love for this little boy is more than I could ever put in words. Only parents can understand that. And I wonder, do I love him more than other parents love their babies? Probably not, Im sure parents of normal babies love their kids just as much, but I think the difference is that I dont take anything for granite. I miss his cry! I miss getting to cuddle with him! I miss the smell of his sweet breath, or the way he looks at me. I miss him nursing, I miss everything right now. I know that my life is forever changed. I want to do so many different things now. The big things really dont matter anymore.

I am so proud of him. I know he doesnt understand what is going on. Sometimes I dont even understand, but I am trying to learn as much as I can. I hope one day he can look back and even read this blog and be just as proud of himself as I am of him.

He is my hero!

Days That Feel Like Years

What a TOUGH day!

As most of you know Carson had his Glenn today.

We were under the impression that he was going to be the first surgery today, so we did not get much sleep last night.

They came and got him at 7:30am and we went to the surgery prep/recovery area. We stayed there for an hour or so before I asked how much longer it was going to be.

The nurse asked and one of the people that was going to be in the OR came and talked to us. Apparently there was miscommunication and they wernt supposed to have gotten us yet.

Carson had been NPO (meaning no food [breastmilk]) since 4 this morning. So needless to day he was starving and CRANKY!

I was annoyed. He had to be NPO for 4 hours prior to surgery. So had I known that he was going to be taken at 10:30-11 I could have fed him. 

I guess someone in the OR was under the impression that there was going to be two people operating the lung and heart machine. Meaning that two surgeries could go on at once. However, they were wrong there was only one person to do the lung and heart machine and that is why we had to wait till 10:30-11.

When I found out he was not going to be taken till later, the OR nurse said we could give him as much clear fluid as he would drink in 10 minutes. That poor baby drank 5 ounces of pedialyte. 

We went back to our room. My mom came out this morning to spend time with us before surgery. She only got there 15 minutes before they took him the first time so when I found out he wasnt being taken for a while we went back to our room.

Finally, it was his turn. They were ready for him. But I wasnt ready for them to take him. I can never be ready for that. Thats been one of the hardest parts of my day. Handing him to the nurse. Before I even handed him over I was a emotional mess, but once I gave him a big hug and kiss and handed him over I lost it. 

Then the seconds start to become minutes, and minutes become hours, and hours well they never seem to pass. They said it would take 4 hours. 

They took him back at exactly 11:00. Nick and I went back to his empty room, we packed up since we were moving to ICU, and I took a shower. I tried to take a long shower, just to kill time. But when I looked at the clock when I got out only 10 whole minutes had passed.

Nick and I walked and had lunch, and a half hour or so after we got back the surgeon came to talk to us. WHOOO!! It had only been 3 in a half hours. I was so shocked, but scared. Why is she coming now? It’s too soon. Oh shit….

Then she said it went great! She said they procedure went just as planned except for one thing. She said that his breastbone was in the way of removing his shunt. So they had to make an incision in his groin area and remove it from there. 

Phew, I can breathe, my baby is OKAY!!! Praise the Lord.

She said to give them an hour or so to get him in his ICU room and stabilized.

We waited and waited. I was already anxious. I wanted to see my baby! An hour passed and we didnt hear anything, then another 15 minutes, still nothing. Then another 15 minutes, and still nothing!

Finally after 2 hours we just went into ICU because I needed to pump and they said it was fine to come in! Whoo hoo!! My baby looks, well GREAT!

I mean, he just had surgery, open-freakin-heart-surgery at that. Anyone else who saw there baby like this would probably freak. But knowing what he looked like last time compared to this time is night and day.

His chest is CLOSED! They said there was a chance that they would leave it open, but they didnt have to!! And I will take whatever small victory I can at this point!

Now he is doing well. The first 24-48 hours are rocky. They have to keep him in his ‘happy place’ and that is different at different times.

I thought seeing him like this was going to break me, but I am actually handling it really well. This time handing him off to the surgeons was so much harder, and seeing him post OP (so far) is much easier. Whereas last time it was the opposite. Maybe, its because I know what to expect now.

I am so proud of him. He is so amazing, and so strong. He has endured more than some will in their whole lives. I cant even put into words how proud I am. 

Please pray for a smooth recovery.

Somethings are Better Left Unknown

The surgeon came to talk to Nick and I yesterday. He had to give us all the information and then have us sign a consent form. 

Last time, when Carson was 2 days old Nick had to hear all the information alone, and sign the consent from by himself.

When the surgeon came in, he repeated the statistics of the last surgery and said how much more scary that one was compared to this one. I am so thankful to Nick for not telling me those statistics while we were in that situation. He is amazing to have that weight on his shoulders and not put it on mine as well.

Apparently last surgery 15% of babies dont make it through and then 20% more die within the year. HOLY CRAP!! I am paranoid enough already, thank god he didnt tell me that. 

This surgery, although it’s scary, is not as risky according to the surgeon. He didn’t give us statistics this time but said he LOVES doing the Glenn procedure. It doesn’t quite make sense to me right now, but basically they take the blood coming back from the head and shoulders and direct it straight to the lungs instead of the heart then the lungs.

Carson is in great spirits, and so are Nick and I. We are scared out of our minds, but know he is in good hands. 

I have been talking to Carson all week about surgery and how well he is going to do, and telling him that we will be there for him. 

This is the hardest thing I have ever had to do in my life, but I am not negative. Really, I am more positive than ever. I know this is what he needs, and this is what is going to make him better.

It’s really a blessing in disguise. This surgery can buy us two years time. With the surgery that was supposed to happen he would have been a 1 and 1 half ventrical, which kind of changes the quality of life as far as sports and endurance goes. Now this surgery is going to buy us time, and it is likely that he will have a full repair and will have 2 solid ventricals, meaning he will be normal.

I am grateful that we have spent this week in the hospital. I was a mess after he got his echo, and we knew for sure he was facing surgery. It’s so scary, and so hard. But I have got to be in this amazing place with all of its amazing staff all week. All the doctors have been in and out all week talking to me, answering any and every questions I have. It has really put me at peace. I know he will be taken care of, this is just another chapter in Carson’s amazing journey.

You know, I don’t wish this on my worst enemy. I don’t ever want any parent to experience this fear, or heartache. I don’t ever want anyone to have to trust the surgeons to open up their child and work on their heart.

Sometimes I wish so badly that Carson was normal, that he didnt have to go through this. But he has taught me to not take anything for granted.  Every time I get to pick him up under his arms is a blessing, because we wont get to do that for 8 weeks after surgery. Tonight will be his last bath in the regular bathtub for a while, because he will need sponge baths till his incision is healed 100%. It really is the little things. 

This little boy has changed me. He has changed me for the better. I never knew how much I could love someone. I never knew the kindness and beauty in people. One of his nurses even offered to donate blood for him. He touches everyone heart who meets him. 

He amazes me everyday, he is so strong. 

I hate that we have to see how strong he really is, but I know he is going to kick this surgeries ass just like he did the other one. I cant wait to get to go home and be a family again, but until then I will be here, by his side loving him through this. 

Love is a powerful drug and he has got me higher than I have ever been!

Please keep him in your thoughts and prayers!

I will update as soon as I can. 

 

 

Break-it-down

I know many of you follow Carson’s story and try to wrap your head around what is going on as much as possible.

I was so lost when I first learned about his heart defect, but I have learned a lot over the past several months.

I just want to break it down for you guys. 

This is a picture of what his heart looks like now. (Other than the fact that it does not show the VSD)

This is where his VSD should be.

The blue wall of the heart that is circled in yellow is actually missing in Carson’s heart. The problem with that is that his blue blood (un-oxygenated) and red blood (oxygenated) are mixing.

____________________________________________________________________

The VSD is an easy thing to understand. Now for the other part. 

This is where the pulmonary artery should have been (in yellow).

So they cut the pulmonary artery, and put it here:

Fixing his under-developed aorta.

Then they placed a shunt here:

This shunt replaces his pulmonary artery.

When they placed the shunt, they used one that was size appropriate at the time.

Now that he is older and double his birth weight his shunt is too small and not enough blood is going to the lungs to get oxygenated, so this has made his saturations drop and that is why we are in the hospital now.

He is going to have a Glenn procedure (which I dont fully understand, yet), but when I do I will post pictures of that as well.

I hope that helps everyone understand what is going on. 

 

 

Nothing Goes as Planned

Carson is 4 months old, well 4 in a half, and we are in the midst of our forth stay at Children’s Hospital.

It all started Thursday, May 10th. I hooked Carson up to his pulse ox machine and his stats were kind of all over the place, but mostly between 75-85, which is right where he is supposed to be.

I called the on-call cardiologist and she told me it might be because of the heat, to give him pedialyte. I did, and his stats kind of regulated.

I was carefully watching him Friday, Saturday, and Sunday. Monday, I had an uneasy feeling, and kept him on his pulse ox all night. His alarm went off like 5 times, meaning he dipped below 70.

We called Tuesday morning and talked to his cardiologist who told us to come in. We went to E.R. and he was admitted.

He got an echo done, and they didnt find any changes in his heart. All in all it was summed up that he is out growing his shunt and needs surgery. However, he cannot have the surgery that was planned because he is still too small.

He was supposed to have a 1 and 1 half repair. Meaning they were supposed to replace his shunt with conduit, patch his VSD, and repair his aorta. Instead they are doing a Glenn which is a procedure that makes some of his blood go straight to the lungs instead of to the heart then the lungs. This will relieve pressure on his heart and will bring his oxygen saturations to 95% and he will be almost ‘normal.’ They said the 1 and 1 half repair is too risky right now because it is working inside his heart. They want him to be above 18 lbs before he gets that procedure, and right now he is 13 lbs 8 oz.

Other than his stats being the way they are he is his normal self. He is not acting any different and he isnt showing any signs of distress. The doctors are all happy about that.

Today, we don’t know when his surgery will be exactly. Apparently they have a full schedule this week and “will try to fit him in.” He has to be NPO (meaning no food for 8 hours prior to surgery) so well will know at least 8 hours in advance.

It sucks, looking at your precious baby, knowing he will be facing this so soon, so much sooner than I expected, then anyone expected.

I talk to him every day, I tell him he is going to get surgery again. I tell him that they are going to have to take him away from mommy and daddy, but not to be scared because he will be sleeping and wont remember anything. I remind him that we will be waiting for him after he is done. I tell him all the time that he has so many people that love him, and so many people that are praying for him. I tell him that he has to be strong just like the last surgery and the last two caths. I tell him how proud I am of him. I thank him for choosing me, for choosing me to be his mommy. He could have chosen someone else.

I am so proud to be his mommy. Although my heart is normal, it feels broken. How is it fair that this perfect, amazing, incredible, light in my life came to this world “broken?” All I’ve always wanted was to be a mom, and I am his mom.

Sometimes I get down, and I cry. Oh boy do I cry. I cry for him.

I am so glad he is so small and doesn’t understand. All he really understands is love. He understands that I love him and I know he loves me. That look, it just melts my heart. He has be wrapped tightly around his finger.

Its so hard, this is so hard. Children’s Hospital is a beautiful place with an amazing staff. The nurses here are wonderful, and so are the cardiologists, doctors, and surgeons. I know this. I know how incredible all of them are. I have to put my full faith into their hands and trust that they will take care of my baby, just like they have the last three times.

I hate that. I hate that I cant be there with him, although if I could I wouldn’t be able to handle it.

I remember last time. I remember walking in, and seeing him so swollen, and his chest open. My heart fell to the ground. I remember those helpless days like yesterday, and to think that we are facing that again breaks me.

I never knew I could love this much. I do everything I can to keep him healthy, and make sure I pay attention to what the nurses do, so I can do that at home to make sure he isn’t dehydrated, and that his pulses are strong meaning his circulation is good.

The hardest part of this is I cannot make it better. All I can do is love him. I wont be going anywhere. Ill be by his side through all of this. I hate that it has to happen so soon, but a part of me is grateful I dont get days in advance to worry and cry. I know they will take care of him, they always have, and I know he will do great. He is the strongest person I know.

Speaking of strong. Everyone keeps telling me I am so strong. I am not strong, I am weak, I am scared out of mind, I get negative, but then I remember. I remember that I am his mom for a reason. He CHOSE me. Every time I hear someone say I am strong I think of this quote.

“You are stronger than you think”

I never knew I was this strong, I never wanted to be this strong, but I have to be. I have to be this strong for him.

He has shown me such beauty in people. He has so much support and love. People who dont even know me, or know him are praying for him, for us. Because they know someone who knows us. To me, that is beauty, people are beautiful. The kindness I have experienced blows me away. A mommy friend I have made is doing a heart work today and has Carson’s name on her badge. It makes me cry just typing that. She doesnt have to do that. She chose to, because she cares for him. That is amazing. He has touched so many peoples life. He has forever changed me, and I will forever be grateful to him for that.

One Hell of a Week

We went to the cardiologist on Monday, April 23, 2012. They did an echo, as always, and discovered is heart was not pumping as strong as it should.

They checked his weight and his pulse ox. He is 12 lbs 3 oz now and his pulse ox was 76 (they want him between 75 and 85).

The cardiologist was so impressed with his weight gain, and mentioned that she was going to talk to the surgeon to see how she felt about doing his next surgery within the next month. Previously we had been told he would have it between 8-12 months old, so we were shocked. Dr. Kung (the cardiologist) said that if the surgeon did not think it was a good idea now that he would need another cath.

Carson is in a single ventrical clinic. It’s not a big deal, its just two really nice ladies who call and follow Carson’s progress. They call and check his stats, and come talk to us when we have appointments. Anyway, Lucy said that he is the only exclusively breastfeed baby in their clinic!! WHOO HOO!! That made me feel so proud!! As if I need anything else to be proud about 😉 .

When we got home from his appt, we got a call from Nick’s dad. His mom had been taken to the hospital on Friday with chest pains. We were told to come to the hospital. We packed up a ton of stuff for Carson and were on our way. We could tell something wasn’t right. I just prayed the whole way there. My babe needs his mom! We got there and his dad told us what was going on. She had an angiogram done, and they found four blockages. They did a cath, but her blood clotted, stopping her heart and she was rushed into emergency double bypass surgery. It took over 8 hours, and when she was done the doctor said she probably wouldnt make it. Tuesday, she tried to pull out her breathing tube, so we knew she was going to fight through this.

On Tuesday night Carson’s lips were looking blue. So I hooked him up to his pulse ox machine and it was bouncing from 68 to 72 which is too low for him. So I thought to myself Ill call in the morning and bring it to the attention of the cardiologist. Well, Lucy, from clinic, beat me to it. She called in the early afternoon and asked how he was doing. I told her and she said she would talk to his doctors and call me back. She called me back and told him to bring him in that he was being admitted.

I am usually so great and positive about everything, but this got me. I was SOOO mad. I instantly started crying, I went to my room and screamed into my pillow, “WHY MY CHILD?!?!? Crack whores get normal babies!” Nick came in and just held me tight. I dont know how he held it together with everything thats going on. He is my rock! I pulled myself together and packed my room. LOL. I even packed Carson’s bathtub because if we had to be in the hospital again he was going to at least get his normal bath gosh darn-it! He loves his bath!

So here we go, on our way, we get to the hospital, we are seen in clinic (the regular out-patient area) and they check his stats, they are just where they are supposed to be, but they admit us anyway.

They put him on oxygen and we talked to the cardiologist. She said they would do another cath, that in his echo it looked like his narrowing in the aorta had returned, she also said it was possible that the shunt had some blockage. Either way I hated hearing that they had to put my baby under again.

We just hung out in our room Wednesday, and Thursday. Wednesday they tried to get blood from him to check his blood count, because if someone is anemic it can affect their oxygen saturations. They tried twice and couldnt get a vein =( so I talked to the doctors and told them they couldnt try again till the next day. A girl and guy came to draw on Thursday, she tried and got a vein, i was so happy, and he didnt even cry. WHOO HOO. Then the stupid vein collapsed before she could get all the blood she needed. F**K!!!!! So she tried in his other arm and he just let out a little wimper, but she didnt get it. F**K AGAIN!!! But since he wasnt screaming I told them they could try one more time. So Henry tried and got it right away! YAY!! Later that day they had to put an IV in. Nick and I were so nervous as we tried to console him. We just squeezed eachothers hands and the girl poked our baby ONE-MORE-TIME (hopefully). At first she didnt get it, but fished a little bit and got is. THANK GOD!! So we relaxed the rest of the day.

Nick spent the night at the hospital with us on Thursday night. The hospital is beautiful. We get a private room, with a private bathroom with a shower and all, and the couch that turns into a bed isnt too bad at all, unless you try to sleep with two adults and a baby that isnt allowed to eat after midnight. Needless to say non of us got much sleep Thursday night.

Friday morning at 7 my mom got there to see Carson before they took him back. We all just played and talked. He is always so cute in the mornings, starving or not. At 7:30 they came to get him. We walked back to the OR recovery room where they got all of his information. He was so cute, he just watched cartoons on the TV, he didnt have a care in the world.

They took him back, and we went back to our room. We tried to kill time, I showered and Nick slept. They were finally done with him at 10:30 but we wernt able to go see him till 11:30. When we went and saw him he was peacefully asleep. I had them keep him medicated this time. I wanted him to sleep off the anesthesia. Last time he cried for HOURS after. He lost some blood during the procedure so they gave him blood. The cardiologist who did the cath said everything went great. His shunt was a little narrowed so they put a stent in it, and they ballooned his aorta some. She said his heart has grown since last time.

He stayed on oxygen for 24 hours after the cath. They gave him heaprin right after the procedure to prevent a clot and instead of keeping him on a steady drip of heaprin they gave him lovanox injections twice, and his pulse in his foot were as strong as before.

They took him off oxygen early Friday morning and he did great. He was stating about 78 the whole time. So they discharged us. His cardiologist thinks he may be out-growing his shunt, so we have to monitor his stats closely and if they dip again we have to be admitted again while they put in orders to send him home on oxygen. Hopefully we can wait till he is 8 months for his next surgery but my mommy gut says it will be sooner.

Today, Tuesday May 1st Carson is doing great and so is his Grammy-Sin(Nick’s Mom). She is doing really well. She is on a balloon pump because her heart was so weak coming out of surgery, but they were walking about removing it soon. They have taken her off several med and she is doing way better than expected, but can use many prayers.

Easter!

My FIRST Easter!!!

We “dyed” easter eggs on Saturday night. Carson pretended to dye them. Mommy helped him dye one egg for pictures sake, and then he decided he had had enough ‘fun.’

We gave him his basket in the morning. He stared at it as if he was checking out all his new toys! He got toys from us (chew toys[he has begun to teeth]), as well as some candy (which is really for Mom and Dad), and some bibs, and a little monkey to play with. His grandma and grandpa got him a basket as well with some clothes, a little monkey, and a book, and his Grammy got him a amber teething necklace.

 

He is changing every day! He is so darn cute! We have started giving him baths in the regular bathtub and he LOVES it! He kicks and splashes like crazy!

Oh and he scratched his face. =(

 

All in all we had a great Easter! We cant wait for next year when he will be big enough to go on a egg hunt and really dye Easter Eggs.

In other news. Carson is considered a single ventrical right now because of how large the hole is between his left and right ventricals. So the cardiologist want us to check his oxygen saturations three times a day. We have been waiting weeks for the pulse ox machine to get here. Its finally here and we have been checking his saturations three times a day and his stats have been exactly where they are supposed to be. So he is doing great.

(For those of you who dont know what a pulse ox is: its that thing they put on your finger when you go to the doctor. It shines that red light through your finger, and it checks how saturated your blood is with oxygen.)

Sorry this entry is a mess, I just thought Id let everyone know everything all at once. 😉

 

On a different note. I may be changing blog websites….This one charges like $45.00 or something like that to customize your blog, whereas other sites allow you to do it for free and are honestly a HELL of a lot easier to use. I will copy and paste all entrys to the new site if and when I do decide/have time to change over. When I do that I will post about it and link everyone.

Time FLIES!

Seems like just yesterday we got to bring Carson home when he was just 15 days old. Not he is 3 months!!!!!!! Without thinking of him 3 months seems like no time, but considering I have only spent 3 months with him is weird. I couldn’t imagine my life without him. I had no purpose before him. I was just going day by day, year by year. Now he makes me feel alive. Dont get me wrong I had joy and love in my life before him, but not like this! I dont understand how people dont want children. How do you not want to feel this? They sure are missing out. It is worth every sleepless night (which there havent been many), and ever struggle. Its worth not being able to take a shower when I want, or having a mess house becuase he is an arm baby. Gosh I love this little man so much and me and his daddy couldnt be more proud of him.

He is definitely my son, he is BOSSY!! If he is hungry and I dont lay him down and get situated quick enough he makes sure to scream and tell me. He is also like his daddy already! He loves to ‘talk.’ Its the cutest thing. Every morning when we wake up I stay in bed and feed him, then change him and lay him on the bed in front of me while I sit at the head board and he just talks and talks and smiles so big. It melts my heart every time, it’s and amazing way to start your day!

He is doing so great. His bath time is one of his favorite things. I give him a bath everyday. Yea, Ive heard ‘that drys our their skin” or “that is not necessary” but I dont care. We have our routine and he loves his bath so why not give him something he loves everyday? He is so cute in the bath he just stares at me as if he understands what I am saying as I narrate what I am doing and what I am washing. He smiles and kicks his feet like crazy. Its as if he knows he is making a mess and mommy has to clean it lol. But it’s so worth it to see that joy on his face.

Every day after we finally get out of bed (around 9:00) we give him his medicines. He takes 40mg of asprin every day as well as a multi-vitamin. He used to be on lasix as well but the cardiologist said he didnt need it any more on the 20th. After his meds we go pick him an outfit and then he gets a bath…after his bath we play (on his play mat, or I talk to him) and then he usually takes a one in a half to two hour nap around 1:00. Other than that thats about the only routine we have so far.

Last time we went to the doctor he was 10 pounds and 11 ounces. The cardiologists are very impressed with his weight gain especially since he is exclusively breast fed. For those of you who dont know specifics about his heart defect. He doesnt have blue blood and red blood, the blue and red are mixing right now so his heart works especially hard when he eats and burns more calories than normal so lots of heart babies have to have their milk fortified meaning they make it a higher calorie than normal.

All in all Carson is doing great! We think he is beginning to teath. He is drooling like crazy and today his little gums look inflamed. He hasnt rolled over yet (probably cause I dont put him down enough 🙂 ) but he seems like he will soon. He tries to all the time.

If any of you want to know anything specific or have any questions I am an open book. Feel free to ask anything. I hope one day that this blog will help another mother or father through their journey with their heart baby or any struggle for that matter.