Sat, May 13 2000

So this was allot harder than I thought it would be.. I mean I had anticipated it being difficult re-living the events in 2000 BUT my mood the rest of the day after posting my last journal entry was a bust I was cranky and emotional etc. SOOO I am going to post this date in its entirety but be prepared for summarys' from here on out...


Sat, May 13,2000
Its about 3:40AM, we got called in because Lane's heart rhythm had fell and they couldn't get it "paced" w/ the internal heart monitor so we got a call at about 3:00AM the nurse was going to tell me everything but I couldn't hear it over the phone, I had to be here, we got here and his heart had gone to a normal rhythm on its own which is good BUT they want to put another pace wire in to try to be able to control if this happens again.  I was so scared I just about lost it I was just running w/ no direction or purpose, Ben just stopped me put my head in his big hands and said "Ky take a deep breath".  That helped allot I can't say I was totally calm after but I was able to think straight.  Ben suggested we say a prayer in the car, at first I told him I could do it but we had to stop for a minute and he could do it then BUT things got crazy and I got myself together enough to say a short prayer.  I don't remember everything I said I just remember saying we are thankful for our blessings of which I know we have many; I think this is the first time I have given a prayer and something else entirely took over, I really can't explain it but thanks for the blessings as we are going to see if our Baby is going to make it through the night??? WOW, But now that I have some perspective I do now realize that we have many blessings and many things to be thankful for.. the Second thing I remember is just for Lane to be strong and for us to be strong again.  Why didn't I say for the prob. to be solved? I think I said to be strong because at that moment we all needed to be strong.  Ben and I needed to be strong enough to be able to get here and strong enough to hear and understand what was going on.
Its interesting that this happened because yesterday we were on such a high! we were almost gitty and we had both mentioned that we were a little scared that things were going so well that something was going to kick this out from under us.. and this HAS! But I also think that its taught us not to take any gift for granit, they are inside of Lanes heart right now! I can only think that those people are gifted Dr's and Nurses that they hold Lane's future we are so thankful for being here, I'm sure Ben is tired of hearing this but I keep saying that Lane was "suppose" to be born now and here because everything fell into place.  Yesterday another little boy cam in w/ the same diagnosis. We've been talking allot about how everything has fallen into place and how lucky we are that they caught this so early, well this baby that was brought in was already 5 days old, they were just starting what we had started on day 1.  it was just becoming real just how lucky we really are.  Lane is doing better this morning, its about 10:30am now he's still hooked up to the pace maker but is doing very little for him, the dr's are worried he'll have to have a perminate pace maker, they are more worried because the problem w/ the top and bottom chambers not "talking" is not a usual problem w/ HLHS.  This concerns me a little everything was going pretty "text book" until now.  I got to talk to the Boys today they seem to be taking being at Mom and Dad's pretty well.. they went to Ambers yesterday to swim and Hunter even swam, they had a good time.  I miss them allot, Ben and I talked last night and its hard not being able to see or Healthy Children.. there isn't anything easy about ANY of this.  we keep saying no one should have to go through this and its true! this is for the BIRDS! I'm trying very hard not to feel bitter its hard to take a "wait and see" attitude, I thought pregnancy as bad because I wasn't in control this is so much worse.  I"d be pregnant any day of the week in comparison to the feeling I have now.
I feel so helpless! I'm trying very hard not to get negative and feel sorry for my self, but its becoming easier to say why is this happening to "us" right now??? He's the most special baby and proud to be his mother, he's touched us all so much already I can't believe we've come this far just to fail now... I still have to believe he'll be alright I start feeling guilty about various things, Ben was getting after me I feel guilty that no one was here last night I'm feeling like someone should be here more though, Ben has a point that we really can't do anything he's in the best possible hands all we can do is trust and that is very hard to do also, Nurses are worried about MY recovery, they said once Lane gets to his own room I'll (or one of us)have to be here 24/7 to learn how to take care of him,give him his meds etc. etc. so they are encouraging me to go home to sleep each night etc... more later...
well I'm becoming a little too familiar w/the PICU part of me wants to be so helpful but another part doesn't want to acknowledge whats going on, 2 kids that were on our cardiac unit were released into rooms, it was encouraging but gave me the thought that I wonder if we'll get to go to a room.. obviously not today and not tomorrow etc.but I can't even think right now about getting into a room. that's way too much into the future I have to think about right now, I can maybe think about tonight or tomorrow but for now no further than that...

Sun May 14th Mothers Day 2000
Well, today is a pretty good day, we got to sleep all night he had no complications last night which is good. As the nurses said that was my Mothers Day gift, and it was a good one! I woke up at about 5:00am and said "no one called?" sighed a big sigh an went back to sleep I must have slept pretty soundly because I feel very rested today and so does Ben he's pretty punchy but anyway today is Mothers day I've been thinking allot about my Children and the "roll" I play as their Mom and the roll I'll play in Lane's life I guess that yet to be seen.  the mother of Baby Oscar the boy that was brought in on Friday came up to me today, she asked "what else was wrong w/ my baby?" I was confused and asked what she ment, she said "besides his heart what else was wrong?" I felt so bad when I said "Nothing" Oscar was born on the same day as Lane was and they didn't find this until Thursday he's going through liver and Kidney failure and his lungs are congested and full of blood he's not doing to good and they can't even talk about surgery until they get those other things under control, which just confirms original thoughts that we are so lucky that we found this early.  The mother can't be more than 19, they have there whole extended family in the waiting room. Ben calls it "little Mexico" they have kind of over runned the waiting room I saw Oscar as I came into see Lane, he's a sick little boy for sure.  I feel bad for his family we had everything going for us Lane was the Best kind of candidate for this surgery.
The Bishop came by a few minutes ago he had a real tough time looking at Lane, Ben warned him that it was pretty scary and he had his almost 12 yr old son w/ him.  his Son did great he was very curious and asked allot of questions and the Bishop was having a tough time seeing all the tubes and things.  The nurse had to pull some blood and the Bishop pretty sheepishly said "needles make me queasy" he's a good man, and even came when he knew he would have a tough time seeing all the stuff etc. We feel very blessed to be in this ward and I told him that! he (Bishop) asked Ben about our home teacher he told him who it was and that I was just mentioning that wouldn't it be great if Bro. Van was our Home Teacher, the Bishop instantly said he would see what he could do w/ that assignment. I was surprised that Ben had the nerve to say that But I'm glad! Bro Van is good for Us!  anyway I'm just here by Lane and we are waiting for Dr. Heinle to get here so we can talk to him about closing Lane's chest tomorrow ie: time if we are still going to do it etc. more later...