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!


3 thoughts on “Making Progress

  1. nonnierms

    We shared our ICU room with an HLHS baby–he was early and between his NICU stay and his first surgery, he had never been out of the hospital. It was nice to share a room because there was another heart mom there some of the time and we got to know each other a bit. She had already been through one OHS recovery and I had been through managing heart failure and paperwork and programs so we could swap stories and get an idea of what was to come. Even so, I had really looked forward to the step-down unit because it meant a comfortable bench-bed to sleep on but they didnt have a free room so we stayed in PICU where I slept in a regular chair with my feet on another chair. I was so sore and tired……

    Im sorry they removed you from the support group 😦 Sometimes I think groups get too caught up in the minute details and forget that there are real people behind the criteria 😦 I hope you can find another group to connect with or perhaps the parents you have already met will want to keep in touch and offer some support even if the group leader wont let you be in the actual group?

    PS: I looked up the human milk for human babies group and joined the FB group for my state–took less than five hours to find someone in my area who needed my stash 🙂 I met with the mum today and handed over a bit over 130 ounces for a baby who is just one day younger than Isabelle 🙂

  2. rheannaandnick Post author

    I did find a new group. I dont know if you are on FB, Id love to add you! I joined Heart Mamas group on FB its a huge group and the most active group Ive even been a part of. I am so glad you found someone who could use your milk that is so awesome!! I am going to donate some of my milk as well. Carson has gotten to the point of not taking a bottle and while he was in surgery and 2 days post OP I was exclusively pumping so I have quite a bit of milk I wont use. Its such a great gift to give.

    1. nonnierms

      I sent you a FB request but it never gave me the option to add a message so I couldn’t tell you who I was :p My FB initials are RL 😉

      It is so wonderful that you have too much and are able to donate 🙂 With Sterling, I was always just barely keeping up so having extra with my next to just feels amazing to me :p


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