So we're heading to Sick Kids this week

So I got the call from Liz today after she spoke with Sick Kids. The team there agrees that Yale's function has decreased again, and so they want us to come this week (I'll be getting a call tomorrow with the specifics). Liz says they plan to do an MRI to see if there are any obstructions or causes for the decreased function that they can intervene. If that is not the case than there will be a med change. Hopefully the med change will help because if it doesn't, it looks like we will be heading towards a transplant.
Please everyone we need the prayers again.
Oh and to update on little Abby Knight, the baby I asked for prayers for, she is doing great. She's had a Gtube placed and is expected to go home sometime this week.... YAY! I am so happy for her. Her parents and family are ecstatic! Even though she will soon be back for her next surgery, they are glad she made it through this rough road! Sick Kids do it again!!!

So the freedom is gone :(

So cardiology visit today didn't go so well :( I'd go into all the details and whatnot, but really.... I don't feel like it. The gist of the problem is Yale's leaky valve. Its worse and his right ventricle has enlarged some more. So Yale is being presented on Monday when Dr Golding will be back at Sick Kids. Then we'll know if we have to go for a visit. (most likely) Liz says its most likely they will make a medicine change that can be started here in London. Only we'll have to make weekly visit until it is at a theraputic level...which Liz said could take quite a few weeks. There are other things that could be done.... but we don't want to think about surgery or cath lab or anything...
I just hope this is the course that everyone agrees on and it gets Yale's heart stronger. My biggest fear is it not getting better and them no going through with the Fontan. Luckily the fontan is quite a ways off, but still... Immediately when I got the news I went straight into the what ifs. I didn't ask anything yet because I just don't want to know the worst case scenerio...(but of course I know). Once again I have to put faith in the doctors..they know what they are doing... Its just so disheartening. He seems to be doing so well. I knew right away today looking at his xray that his heart was enlarged. and if I can tell...thats a bad thing :(

On the other hand I am very glad we got our visit home in there while we did. Yale had a great time and we had lots of visits...and lots of normalcy...which is far and few between.




Here are a few pictures of our visit :)
Yale having tea with his Great Aunts Nancy and Louise

A four generations picture!!

Hanging with Great Grandma Hartzke

Relaxing outside on the patio...enjoying the fresh air:)

We lost a friend

I got the message today and am very saddened by the news that we lost the fight for another heart child. Yale's last surgery was scheduled the same day as little Meghan's TOF surgery was. Her's was posponed for an emergency surgery to take her place. I got the sad news that Meghan didn't make it...... here is the message.

Hello Everyone,My name is Jenn and I am one of Lynn's good friends. Lynn asked me to write to you all on her behalf. It is with deep sadness and sorrow we let you all know our beautiful baby Meghan went to be with Jesus early this morning - August 23 2008. Meghan had a wonderful last day and evening before becoming suddenly ill early this morning. Once at the Children's hospital her condition deteriorated quickly and soon after, she passed away. Of course the family is absolutely devastated and in shock however, they are surrounded and supported by family members and close friends. I did talk to Lynn again to tonight and she did want you all to know, they did get to spend some time with Meghan and know she is now at peace and is with God.At present time funeral details are pending however, I will update this site as soon as I hear from Lynn or Ian.Please continue to prayer for the family as they struggle to come to terms with devastating loss.With much grief...Jenn

Meghan was a darling for the day I met her at pre-op. She brought light into her parents lives, and a smile to my face. I know her parents are greatful for the time they had with her, but this sort of loss is devastating for anyone involved. Please help me pray that her family finds some sort of peace and strength to make it through these days.

Heart hugs to all those babies out there fighting the good fight. It makes us hug our children a little tighter to know that a loss can be so sudden.

Here is a link to her facebook group http://www.new.facebook.com/group.php?gid=21033355667

Rockin' in the post glenn world!

Okay...so lets talk about my day today. Today Yale was supposed to have bloodwork done to test his Enox levels... well this afternoon while sitting with Yale at the bus stop I lean in and ask..."Yale, did mommy give you your needle today?".... LOL.... so ya, my days have been running into the next and I forgot to give Yale is enox this morning... kind of a bummer because his levels need to be taken right in the middle of a dose... 4 hours after I gave it.... so...Yale didn't get his blood taken today...LOL...which is fine because the bus was late so we wouldn't have made it on time anyway.... the bus was so late in fact I decided to walk to the hospital (a 35 minute walk) so that I won't be late for Yale's cardiology appointment...which was conveniently scheduled for after his bloodwork.... So I swear barely five minute after I decide to walk, my bus flies by... OMG... this to me is a bad BAD omen for Yale's appointment... not to mention my bike being stolen, and the pounding headache from the monster sized woodpecker banging on our building (balcony repairs with a jackhammer)...anyhoo I finally get to cardiology and Liz greets me with a "there you are, wow is it hot out?" and I say "not too bad" although I obviously looked like I just ran a marathon...thats what happens when you walk outside at noon on a seriously hot day...

Anyhoo...onto the appointment. After our last appointment I was totally expecting to have the full work up on Yale once again...because well thats just the history...Yale give the drs concerns... they give multiple echos then they find something bad... Last time they couldn't see his LPA...you know the stented one...Anyhoo... Liz exclaims, "So I talked to Dr Golding and he explained that they've never seen his LPA"...never ever, and the only reason they know he has one is because of his CT scan and the fact they can see it during caths...oh and Dr Caldarone never mentioned a none existent LPA during surgery... LMAO... So all that was done was Yales Sats and his weight (sats were great last week and weight was down) this weeks his sats were fine (not great but fine) and he gained! WOOHOO! Then we got to meet our new Cardiologist Dr Welisch.... It was just a quick greeting so that she could see Yale and meet me... then Liz explained that in around 6 weeks Yale will have a lung perfusion test. This is where they put dye into his system then watch how the blood flows into the lungs... A great thing I think! Anyhoo...then Liz says so when did you want to go home and I say next Friday...for two weeks and hold my breath and she says "Okay thats fine" and I'm shocked cuz last time she gave me a dirty look and told me to wait for her answer at our next visit.... anyhoo... I was/am elated. I get to take my baby home to meet family and I get to spend two weeks that is the serenity of the house I grew up in, in a small town, on a lake...with Yale and NO FREAKING dr appointments.. OH YEAH... and you want to know the best part? Yale's next appointment is scheduled for a MONTH away... a freaking month.... Man I love post glenn life... :)

Oh yeah and please keep praying for baby Abby.... its working... still no results from the MRI as it was delayed a few times, but her Mom says they are weaning her vent settings...and she is tolerating it.... lets really show this family...and anyone that doubts us, what we can really do for her!

Prayers for our little friend

Okay everyone, remember when I was talking about the sick little babies that we were sharing a room with? well there is still one sweet little girl there and she needs our prayers. Her name is Abby Knight and she has been proving herself to be a fighter. I can't recall how many times her parents have been told "she may not make it" or "its up to Abby now". Any parent knows how hard it would be to just have to wait, and this family has been waiting for a good long time. Abby Has fought her way to a more stable situation. She's finally had her chest closed, and she is proving to battle all the infections (and fungus) that have rittled her tiny body. She is barely three months old and has been through more that anyone should ever have to face. Now they are worried she may be facing brain damage due to her lack of oxygen during the many times her saturations plummeted and were impossible to regain. She is scheduled for an MRI in the near future.
I'm asking for us to pray for strength for her family. I don't know how many times I told her that the power of positive thinking works, but even I would be faultered by disbelief after all they have gone through. They really need us at this time, so lets put all our effort into showing them the power of prayer and positive thinking. We know without at doubt that the love we all have for Yale helped him, now lets show this family and sweet little Abby that we are here with them and fighting for them!
thankyou!

I'm terrible

So okay... I know I promised pictures...I'm so terrible... I'll see what I uploaded...I have some good ones....but can't put them up yet, because they are going to be gifts....

Yes, we're going home! Finally.... turns out I haven't been back home since I was pregnant with Yale. thanks giving I think....its almost been a year...and a long year it has been.

So those of you back home... we're coming home.. Just a note though that Yale isn't going to be on display. He still (and will always be) a little fragile, and so passing him around from person to person is the quickest way to get him sick... and that can be a REALLY bad thing. I think that is the main concern everyone has with us going home. I even got the "I don't want to say you can't go, so we'll talk about it again at his next appt." Ya... so... basically is going to be a one on one thing.... and there will be a whole lot a hand washing...and please...if you are or have been around anyone sick... DO NOT COME NEAR US! thanks! And if you think I've turned into the germ nazi....just go back and look at pictures of Yale in the hospital.... we don't want to go through that again any time soon...

Anyhoo.... here are some pictures...

HAHAH...okay so thats the only picture thats been uploaded to my computer since we've been discharged... I swear I'll get around to it someday... but look....he's home...and he's pink! :)

Maybe Grandma has so pictures she wants to add, seeing as I stole her camera and took a bunch of pics with it.... ???

We're home!

So we did it! We made it home...finally! Yale really meant it when he thought....enough is enough I want to go home!
My mom came down for the weekend and was so lucky to be there to witness our discharge and is here with us for our first night at home alone. YAY!!!
I'll post some updated pictures and maybe some details tomorrow...but I thought everyone should know that we made it! Stage 2 is behind us and we have some time now before we have to think about surgery again....phew!