FRAZZLED...

The last couple of days have left me so out of it.

We took Makily to Orlando yesterday to the Neuro's office for an EEG. We went early because we were looking to buy a van (in fact we bought one yesterday). When I went to get Makily out of the carseat I notice her leg is wet.....I look down and realize that the med port on her g tube had popped open and the formula has leaked all over her and the carseat.

THIS DRIVES ME INSANE FOR MANY REASONS!

One of which is because taking off the cover of the carseat to wash it IS A FLIPPING NIGHTMARE! You basically have to DISASSEMBLE the entire carseat to get it off. Then be a genius once it's washed to get it back on and assembled correctly. I have only done it once and vowed not to do it again. Well obviously with formula like this all over it, I don't have a choice. I get to wrestle with the carseat again...Oh joy.

Also I have no idea how much formula went in Makily for that feed and how much got fed to the freaking carseat. God only knows how many calories she lost for that feed. Plus I did not bring an extra outfit so I had no way of changing her clothes. I dry her off the best I can, we sign the paper work for the van. We leave there and planned to stop and get Makily something to wear on the way to Neuro. I know that the office is ON Turkey Lake Road and behind Sea World. So I tell Allen the address and where to go....we drive and drive and it's no where to be found. Nothing looks familiar. I look in my address book and I cannott find the number for the office. So I call information and they SWEAR there is no listing for the doctor I am seeking. At this point we are 15 minutes late for the appointment and I am cussing like a sailor (Lord please forgive me). FINALLY after driving up and down the road for a good 45 minutes Allen says I am just going to keep driving down Turkey Lake until I find it, of course this leaves no time to grab a new outfit for Makily so she gets to stay in formula soaked clothes. Sure enough we find the office..THERE IT WAS.....want to know WHY we got so lost?

It was my fault...yes mine...instead of being behind Sea World it is actually behind Universal Studios. I am an idiot.

I got a call to schedule Makily's ASD repair today. It is scheduled for July 13th. I am not the least bit excited about it and if I am being totally honest I have cried on and off all day since we scheduled it.
Driving home from work today I was really out of it. All I could think about was the surgery and how I wish it was all over with. I was thinking that I am going to ask for special prayer for Makily in church the Sunday before. Then I look in my rear view and there is a cop with his lights on behind me *great*. I clumsily try to find somewhere to pull over without being in the way or sitting in front of someone's house. The cop comes up to the window and says "Is there a reason why it took you so long to pull over?" I was a little dumbfounded and stuttered while clumsily saying "yeah I didnt know where to go and this was the most open area I could find, without blocking anyone's house". Then he went on to say that I should have pulled over earlier and that I only need to ensure that my car would be safe and bla bla bla bla.......he went on but I don't know what he said I kept wondering how long he had been behind me and how long I was so zoned out on thinking about Makily's surgery. I was getting annoyed because it's not like I was running from the police. Finally I cut him off and said "I wasnt sure where to go and I WOULD NEVER run from the police...my baby is in the car sir". Then he said that is not what he was suggesting. Whatever. Next he asks if I knew why I got pulled over. I answered honestly and said "no, I really don't.". He said that I had slowed down but not stopped for a stop sign two streets back. I wasnt sure where so I asked him. He told me the street number and I just said "okay". He got snippy AGAIN and said "there is no reason to argue, I have it on tape". I wasnt arguing...I just didnt know where he was talking about. I said "I didnt argue with you, if you said I did it, then I guess I did".
He walked back to his car with my drivers license. I cried while he was in his car, don't know why other than I was annoyed for being so zoned out, I made sure to wipe my face before he came back...with a $185 ticket. Lovely. I havent had a ticket in 5 years. I am gonna take the lame driving class so I don't have to pay as much and I won't get any points.

When I got home Allen called. I just started crying again and told him about the ticket, Makily's surgery date etc. He was so sweet about it and said not to worry...it's just been a bad day.

That it has.

Here we go again.....

So Makily had her appointment with the cardiologist on Monday. I was totally fine about going until I started getting ready to go and then I felt the "panic" setting in again. I cried on and off all the way there. Anxiety sucks.

So we get there and the nurse weighs Makily, does an EKG, takes her blood pressure etc etc. Makily was pretty upset because it took several tries to get her blood pressure, they started out with the cuff on her arm. She has never had it done this way so she was crying and fighting. It also made her arm turn different shades of blue. During the third try her arm was REALLY purple and she was SCREECHING so mid-way through I ripped the cuff off and said "sorry, can we PLEASE do her leg?" She got it the first try on her leg. Her little arm still has tiny bruises on it.

Then the "resident" came in. I like the medical community as a whole in Orlando but I have to admit I am still kind of irked by residents learning on my kid (thanks again Shands). She was terribly nice but this didnt help the fact that Makily was already grumpy. She did all the normal "heart doc" stuff and then we talked about Makily's history. She asked if Makily had a cleft and I said "she did but it was repaired at 18 months of age". She went to leave and then said "oops I forgot to check her mouth". They have never done that at the cardiologist's office but I didn't think too much of it at first. She tried to get a very grumpy Makily to open her mouth, Makily fought and cried....and I just kept thinking "why are we doing this part?" Eventually she gets Makily's mouth open and then she says "Oh yes, the surgeon repaired her cleft very nicely...looks good".
In the end I realize that the prying open of Makily's mouth was just to see a repaired cleft palate.....very annoying.

So the cardiologist came in and was VERY sweet. She ordered the echo and we had it done right there. It took 45 minutes and I laid on the table with Makily the whole time. She did very good and was actually happy at this point. We got her to fall asleep and the tech got some really good pictures.
I knew they were going to want to go ahead and repair the ASD's this time because she is so stable and her weight is so good. It was when the doctor came in and actually said it that I got sick to my stomach.
I could never have imagined that I would have a child that needed anything done to her heart. Although it's been three years, it's times like this that I say "is this really my life?" I don't think that way as often as I used to but truth be told, five years ago I never could have imagined I would be living this life.

On the way home I kept catching myself staring at her in the backseat of the truck. She watching Nemo, kicking her feet, cooing and laughing. The tears just kept filling my eyes. She is so happy, something as simple as a movie she has seen eight million times brings her so much joy. She has the most beautiful smile. I kept thinking "how could I go on if anything ever happened to her.....how could I NOT live this life....how could I get up every morning and live like a "normal" person again". I VIVIDLY remember when Makily was born how I LONGED to go back to being a "normal" person and living a "normal" life. Now three years later Makily has changed me and I know I wouldnt be able to live a "normal" life ever again. Of course I have all the "what if's" flying through my brain. I tried to tell myself the other day that I was being dramatic, this isnt a big deal....but then I thought about it and well it is. They are messing with my child's heart...and essentially her lungs because she is going to have to be intubated AGAIN for this. Maybe I was trying to convince myself that I shouldnt be worried....but I am.

Feeling Accomplished!

Allen and I are OFFICIALLY MAPPS certified for the STATE OF FLORIDA! WHOOOO HOOOO! I am so happy I could do a dance! We only have 4 steps to go before we are licensed as foster parents! How exciting is that?! Here are the things we need to do:

1. Homestudy number one with social worker: SCHEDULED for June 15 (this Friday!)
*basically the social worker comes over to the house and gives me a TON of paper work to fill out. I have already filled out two tons of paperwork BUT I guess they need more.

2. Home Inspection with Health Department: Will call and set up on Monday morning!
They will come out and make sure we have appropriate smoke alarms, fire extinguishers, thermometers in our freezer and fridge and other things like that. I have waited to call them because I want to make sure EVERYTHING IS PERFECT before they come. If you have one thing out of place they fail you and then have to reschedule a time to come back once you have fixed whatever it is that failed you. This draws things out longer so I want to get it done in one shot!

3. Homestudy number TWO with social worker: Allen and I both have to be present for this. She will talk to both of us together and then separate about our childhood, thoughts on parenting and the profiles we filled out on ourselves. I don't really look forward to this because I am afraid they may dig into how I dealt with Makily's diagnosis and birth. I understand they want to make sure we are emotional able to do this (and I feel I am) but going into the details of that with someone who is looking for a weak spot in me isnt something I want to do.

4. Doctors appointments: YUCK! Allen and I both have to have a form filled out by a doctor saying we are healthy enough to foster a child. Allen has been to the doctor in the last year or so for work purposes (he has to have physicals every year) but I on the other hand have shamefully NOT been to the doctor since two weeks after I gave birth to Makily. I know that's horrible but I really havent had much time to be sick myself and I don't like going to the doctor...who does really? So I will be calling to schedule all that on Monday too.

Makily's room is TOTALLY up and running now. We have all her equipment moved in there now and she is sleeping in there by herself at night like a champ! I am so proud of this kid! I do miss her sleeping right next to me and we still have the pack n play in our room. I guess part of me wants it there just in case she decides she wants to come back in my room!? I AM SO LAME! It's nice to have the video monitor though because at night when I wake up I can look at her and see she is fine. We also have her on the apnea monitor which really gives me peace of mind. I know if she has a seizure and runs into trouble breathing it will go off and alert us. It did go off last night. Allen and I darted in there so fast! Thankfully it was just a loose cable. We replaced it and it was fine the rest of the night. Hearing that alarm though is a SCARY feeling YUCK!

Here is her GORGEOUS bed...I love her room!


I ordered a crib set for the "foster baby's" room. It is Dancing Frogs. It looked neutral online when I ordered but now I am worried it's kind of boyish. I don't know. It came in the mail when I was at the store. Allen was so excited he put it all up while I was gone as a surprise. It's really cute. Here is a picture of the set.


We have Makily's old crib set so if worse comes to worse we can use that. We wanted to paint that room but I am not sure what we are doing.

Fostering has so many uncertainties to it.

Are we getting a boy or girl?
How old will the child be?
How long will they stay?
When will we have a placement?

I have grown used to uncertainty since I had Makily for obvious reasons. I do not think that I would have been able to foster before I had Makily. She has really taught me so many things about life and living. I definitly have the "jump in" attitude now. She has taught me life is too short and to not live in fear of the unknown. Some days are harder than others though...which leads me to this.

Tomorrow Makily has a follow up with her cardiologist. Her heart is enlarged on the right side and she has two holes in her atrium (ASD's 8.5 and 3.5 mm w/shunting and moderate cardiomegaly). Every year they say she will have need it repaired the next year. I am hoping they will put it off again. If not though we will deal with it. I am sure she will come through it with flying colors but heart surgery is just a scary thing no matter how you look at it.

I will try to start blogging more regularly. Andrea has been urging me too and I really should. It helps me so much to get all these things out. I know alot of people also wonder how we are and what we are doing.

Thanks for keeping up with us!