Scheduled and slowly approaching

Its Scheduled - 5 July. This will now be the pulmonary artery banding operation,which pushed out the open heart surgery until a much later date. This will give Katelyn the time she clearly needs to get much bigger.

So now that we've gone through this strange process of nearly operating, then medicating,and now back to operating - I feel like we're back at square one and now the wait just seems to be sooooo slow. Clearly God gave us this time to get ready for the operation,now doc definitely has my full support - which is why he changed his mind I now hear! They need to feel that they have the parents consent. Strange isn't it,when you feel like you dealing with such a delicate case-that they would actually delay it until you are ready for the ride(I know he wouldn't have made the call if it was detrimental to her). But it works,cos now I can't wait for it to be over.

So from what I've heard from various sources,its pretty heavy going. There's the initial days in ICU where the whole ventilator thing is apparently an adjustment to get used to,to the days following where you stay with the child and basically do all child caring while the nurses just prod and poke when they need to! So we'll see!

Before then there's lots to do- try see a physio and speech therapist...but why in this world are people incapable of phoning people back.

For now,life continues to be day at a time,trying our hardest to get her to keep these medicines down,trying to find the time to have even 5min of play time. But during this all,this little girl remains so adorable,sweet and fragile...


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My hope

We don't yet see things clearly. We're squinting in a fog, peering through a mist. But it won't be long before the weather clears and the sun shines bright!
But for right now, until that completeness, we have three things to do to lead us toward that consummation: Trust steadily in God, hope unswervingly, love extravagantly. And the best of the three is love.
...The Message

Appointment day

Seems like the usual...big appointment...big decisions...but no answers.  waiting waiting waiting - brings back bad memories.

Doc phoning back tomorrow morning to let us know what the he and the surgeon have discussed and decided. If they operate, could be as soon as Wednesday, that means hospital tomorrow. Would be nice to have at least a night's notice!!! Ok - enough Carol. I'm preparing for operating, and bonus if medication is the choice. Well...theoretically thats what I'm telling myself I'm doing!!

The first big doctor day

Because of Katelyns slow weight gain last week,we decided to phone the cardiologist.Were due to see him in ten days time anyway,but felt it right to keep him updated on her progress.My darling husband makes these calls-wow how much I appreciate that! He sounded concerned,says she may be becoming more symptomatic and they may need to do the banding op.If they do, it could be as early as next week.So here I sit,3am on sunday night,night before this appointment actually really nervous.So silly,because I know whatever happens it'll be in katelyns best interest and the right thing to do.Maybe its because I may feel disappointed that we may not have made it far enough for her to have a once off surgery,or just that I don't feel ready to deal with surgery yet.anyway,we wait and see.
Reminded of 1cor13 in the message TRUST STEADILY

The weight gain and my time thing

Never thought I'd be celebrating weight gain. Not that I'm celebrating today, as her weight is so up and down.this week was a 60(week9to10).Never beeen that low before.We did have vaccinations and changed cycle to 3.5hrs in the last week - shall I just put it to that? But now we back to 3hrs.Horrible. Feel sad about it - especially when you don't know if its because of something or just 'cardiac' related. Could have been with her more I'm sure.
I need to get myself to relax [not that i'm uptight...more just rushing around doing things],spend time doing KMC with her and just not be rushing aound-is always the best answer. Good for everyone. I believe strongly in skin-on-skin...even after two months. Why do the Africans hardly have colic? Babies with the mothers ALL the time. Of course its so effective at birth, something that I long to have had, but do believe that she's happiest when she's right with me, skin on skin - not with me rocking her in panic because i need to get her to sleep independently before she creates bad habits. I'll get to that one day.
I'm feeling pressure to do things,but I actually just want to do nothing.Don't want to sort out my house,have tons of visitors, get out and about, clean up, wash up etc.just want to move into my bedroom or sit on the couch and not have to do anything. Not in a 'bad' depressed way, more just in a time together, bonding way! Anyway,will take it week at a time,but when I already look at the calendar for next week...i wonder where this is going to come in!

being 'Normal'

What am I meant to do now-how do I know whether to follow the 'normal' course,when not to,how to have high standards,when to expect her to do things as others,or not? May God give me the grace to begin to establish my feeling, my gut, whats right for us.

however...
Daily reminded that I'm not in control of this all.She is in His hands,we go ahead doing the best we can.On her down weeks,I realise there is so much to this girl that I don't understand and how much I have to learn,on the up weeks I just think I have a 'normal' child.I want to act as tho I have a normal child.Although it sounds strange, I don't see why it should be so different.  Because its not. She's a baby, does baby things, needs what babies need - she just happens to have a few other unique aspects too. She's so floppy i can hold her in the cutest positions  - she's our flopster and she's half the size [ok not quite] of other kiddies her age. Scary how we establish our view of 'normal through our experience of life and society.  My challenge, as the weeks go by i can see how it exponentially changes. I've still got lots of processing to do...but for now...
Katelyn is normal. She's my normal. She's my beautiful daughter.