Cheryl Davis-Catchpaw's Page

Hi Cheryl, we're doing good, Amayah is holding up as well. Other than her feeding, which seems to be constant issue, she is keeping well.

It's still quite busy, Gavin has been updating this site and I only check it once in a while. Actually this is the first time i am writing on this website. I thought I could write a blog each day, but that's quite far from happening any time soon. Not sure if Gav has already mentioned this, but Amayah's next surgery has been set for the end of October. Her incision has almost healed and now it will be cut again, that just breaks my heart. The docs have also decided to put her on a G tube now (through the stomach) since the NG is not working for Amayah with all the reflux she gets. So another mild surgery for this that we hope will not cause any harm in terms of getting an infection or anything like that.

I will write more Cheryl, but that is the update for now.

Love to all at home
Nel

Hi Cheryl got your facebook msg as well but we have been rather busy trying to get into a routine with Amayah. Every day we learn something new and every day we realize how much work (From doctors, nurses, family and friends) it takes to keep our baby girl healthy and alive! We were at the emergency room today to get her NG tube put back in because we noticed some blood in one nostril during re-insertion. We were there from 5:30 till 10:00 it was a rather stress riddled morning.

Hi Folks thinking of you and baby Nathan.

Hi Folks sorry I missed you today. Maybe we can meet up tomorrow for a tea/coffee. We are praying for the both of you and Nathan.

Hi Cheryl,

Yes, i think we must have been in different rooms at the same time and missed each other.

I don't think i look like the pic, coz my face has bloated quite a bit and i've been wearing my glasses now, but Gavin hasn't changed a bit.

Thanks for good wishes, I will surely keep in touch with you.


Take care and try to rest inspite of all running around for all the appts.

Nel

Yesterday was a long day, we had our echocardiogram for 10:30am and then Mt. Sinai was in the afternoon, it pretty much took the whole day.

At the echo, Dr. Jaeggi told us that there wasn't any significant change; however, the one good thing that we heard was that baby's aorta is small but not narrowing. It's not a big change, but at a time like this, any bit of good news is comforting.

We have agreed to do an MRI as part of a Sick Kids research study; I have the appt. for this Thursday. It's not mandatory, but the way we see it it's more info available to the doctors the better prepared they can be to operate and provide solutions. There's no harm to baby or oneself during the MRI procedure.

Since we opted for the three step surgery, we were told that we cannot be on the heart donor list. Not sure if you knew this already, but once you have made up your mind on surgery, you can't have a back up of a heart transplant. I thought we could, in case baby was not coping well after surgery, but it's either surgery or transplant not both. Though if the baby is not doing well during or after the surgery they will put him/her on the transplant list at a higher level (given the seriousness of the condition) which is reassuring news.

We also met with a social worker, Kim Thompson. Do you have a social worker yet? You should ask for one, if they haven't suggested one yet. Kim took us for the Sick Kids tour; she showed us the ICU room where baby will be after surgery, the step down room and the private room. She discussed visiting timings, etc. I was told that no children under 12 were allowed in the ICU room, but once baby is moved to the private room, a child below 12 is allowed to visit.

Cheryl, we saw a room with two babies and it was heart breaking, I couldn't control my emotions. I thought I was prepared from all the pics I’ve seen of children with heart conditions, but nothing prepares you for the reality. Kim told us that no matter how strong we are, there will be a lot of tears and it is expected. She told us it would be very hard at first but with our continuous visits we would soon get used to it.

We'll be meeting each other for sure at Sick Kids as our babies will be at Sick Kids about the same time. My inducement date is not confirmed yet, but they are aiming for May 30th.

Good luck for tomorrow's appt. Let me know what you hear.

Nel