Got to see my baby

We finally got to see Kayden at 3:35. It wasnt nearly as bad as I thought. While she was hooked up to alot of stuff. The machines were compact and not as bad as I thought. And her face did not swell. She looked so peaceful sleeping.

**Disclaimer** ignore my spelling !!!
She has the heart incision, 2 drainage tubes for the "bad" blood, 2 holes for wires for the pacemaker, 3 IVS, a catheter, a breathing tube for the ventilator, and a tube to drain her stomach. She is on alot of medicines including morphine, dopamine, valaximine (Valium) and ephanifrine to name a few (of course I spelled them all wrong)

The doctor told me they have had some issues with her heart rhythm. It is beating a little off which is commen after that type of surgery. they are going to watch it and see if they need to treat it with medication.

Caitlin came to the hospital. Child life came and talked to her and explained to her about all the tubes. They are definitly overwhelming. they helped her to get ready to see her sister. Caitlin handled it pretty well, but then again the nurses covered her body (and all the tubes and wires) with a pretty pink blanket ! We have given her a camera and her job is to take pics to help document the whole thing. then we are going to make a book to show Kayden later. that way if she asks about her scar she will know exactly how she got it. It has been a good distraction for Caitlin and gives her a job to make her a prat of this whole thing. teresa has to work so she cant see her sister until tomarrow. My sister Lori took the girls to school this morning and then came to the hospital to be with us until she had to get Caitlin for school, I cant express what a relief it is to have her here ! My friend Jill came up to the hospital and waited with us too and then my friend Melissa stopped by to see us as well. We really appreciate the support and the text messages and comments. We stayed there until 6 when the PICU closed for shift change. there isnt much we can do as she is heavily sediated so they told us to go home and get some sleep. We have the most expensive babysitters we can get and need to get some sleep while we can. It has been a very long day and I am totally exhausted so I am going to bed. thank ful for the day we had and praying things continue to ge well.

Surgery update

12:50 they called and said that she wasnt coming off the machine very well. her heart was too tired and they were waiting for her heart to wake up more

1:15 Kayden is off the pump and they are starting to get her off getting her off everything

1:35 Closing her up and the Dr will come talk to us in 35-40 minutes

2pm Came and got us. Dr said worse then he thought. It was thought the mitro valve was mild but turned out to be severe, there could be still some leaking. There was an extra artery he took care of. And he siad her lungs looked really bad. She may stilll have some problems breathing. We got to see her as they moved her to her room. She looked good and her face wasnt really swollen like we thought it may be. They are not in a hurry to take her off all the machines since he had problems coming off the bypass machine. We should get to see her in about an hour

Holy Cow !!!!

Got a call from emory. they finished at 12:10 !!!!! they are waiting for the echocardio down the esophagus (I know its spelled wrong) to make sure there are no leaks. if there are they will go back in, if not they will then take her off the bypass machine ! praying everything is okay and no leaks... more updates to come.......

Its happening

It is realy happening ! Kayden is back in the surgery section and we are waiting for a call to say that she is under and the surgery is begining. lets hope the rest of the day goes better then it started.

I wanted to gt up early so I could give Kayden a bottle. I wanted to get up at 3 because she couldnt eat after 3:30. But my alarm went off at 3:25. I went down and got the breastmilk I had put int he fridge at 6pm the nite before and discovered that it was still frozen and I was too tired and didnt have enough time to do much about it so I just went back to bed. Then had trouble falling back asleep. So we get to the hospital and it takes forever to get called back. when we do the nurse discovered that Kaydens band had fallen off which identfied her blood. We panicked. The called the or and had the blood sent back to the blood bank. They are going to take her blood again and cross reference it to what they have before they do the surgery !!! Lets hope that is the last of the problems.

The nurse "Emory" is going to call us times. The first to tell us she is on the breathing tube and the surgery will start. 2nd to say she is on the heart/lung bypass machine 3rd to tell us the procedure is done, 4th to say she if off the machine, then they will do an internal echocarddiogram and go back in if need be, if not call us 5 to say she is being closed.

While typing this the nurse Kina came in to go over everything with us and let us know what to expect. We got the first call and then almost an hour later (11:10) the second call to say the surgery was begining !!!!!!! I know this post seems pretty unemotional but believe me there has been lots of emotion today and a few tears !! The past 2 days have had ups an downs. I just happen to be on a "up" right now- more like a level, not really an up. more to come...........

It's tomorrow !

Kayden's sugery is tomorrow ! OMG !!!!! Kayden's surgery is tomorrow ! I have so much to do tonight. Rob works at 5:45 so it is just me. I will do girl scouts with Caitlin, run home and bathe Kayden and put this medication on her chest, then run to the airport to pick up Lori ! And then home to bed ! It is still getting hard to believe that is is tomorrow ! WOW !!!

IF anyone that has a blog would like to put a "pray for Kayden" button on their blog. Kele made one for us- thanks Kele ! We will take all the prayers we can get ! just copy and paste into a sidebar gadget under HTML/JavaScript, it turned out cute, and we would really appreciate it !

Update......

Where do I begin......

Last week my sister came to visit. I was so glad to have re-enforcements so I could sleep ! Little did i know how bad I would need them. I went to lunch for a co workers bday, and felt like I ate too much. by the time I went home I felt sick to my tummy and made a b-line for the toliet (do not pass go, do not collect $200 kind of b-line). I had horrible chills and even with a sweater and 4 blankets I was still cold. Caitlin took my temp and it was almost 102. I tried to stay away for the baby incase it was flu but I think it was food poisoning .Robert had to work and Caitlin (my hero) put on the baby carrier, announcing "this is what it is like being pregnant" and made herself dinner and ate all while taking care of Kayden so I could rest. I was in no shape to take care of anyone. Caitlin asked if she could have coke, I replied "you are being so good you can have anything but a horse" (remember she asked santa for one). then she asked "can I have choc cake" I replied "you can have anything but a horse". My sister called to tell me she was going out with a friend and then found out I was sick and said she would come back for a couple of hours. she took the baby. then my brother brought teresa home 9who was staying with my mom while she had her wisdon teeth out) since teresa was there, Lori went out and I went to sleep only to wake up and barely get to the bathroom throwing up ! Teresa sent me to bed and cleaned it up. Told Caitlin to take care of me and she took Kayden until Lori got home at 1am. The rest of the week I was scared to eat much. I think I lost a few pounds !

I got a thank you card from Jennifer in the mail (Jude mommy- not just Jude's mommy but Emily's too !) She thanked me for the frame we sent ! I dont know wehere she find the time and she wants to go back to school ! She is a true inspiration ! My new years resolution is to be more like her !!!!!! lol

And the big news......... Pre op was yesterday !!!! Surgery on thursday ! I feel good about it. I am actually more stressed about getting my work done then about the babys surgery ! After sharing the stories of Presley, Henry, Dylan, Gabi and others I feel really prepared ! Thanks guys !!!! My sister flies back Wed nite to take care of the big girls. I have notified both Teresa's and Caitlin's schools incase they show a behavior change.I have my FMLA papers in. I am ready...... I think. And at the same time I think I am scared.NOt of the surgery but of seeing my beautiful little baby like that and then thought of her on a heart/ lung bypass machine ! I wish I was more the science type and thought this medical stuff was cool instead of disquesting !!!

Have a new date

Yesterday we went to see the surgeon. I can not tell you how much I REALLY like him ! We talked about the emergency room visit and her being sick. He explains things better than anyone and said it is normal for surgeries to be postponed because babies get sick. He called Kayden princess and told her that guck coming out of her ears is not very attractive for boys. (heehee) He said he could get us in before the end of the year but he prefered not to. That the hospital is on low staff and he did not want to do the surgery and then leave town. How awesome ! A doctor who actually cares about their patient. Not saying that others don't, he was just so sincere about it. I feel totally confortable with this man holding my daughters heart in his hands- he has already captured our hearts. Even Robert really likes him and he has been cranky when it comes to Doctors lately- I think because Kayden's ear infection was not caught sooner. When we told him aboutr the ER Doctors reaction to the chest xray, he even made a point to pull it up and look at it while we were there. He said there is some streaking in her lungs but was okay with it considering she was sick. I almost forgot... the new date.... January 8, 2009. It seems so far away but yet at the same time it seems so soon. I started getting scared yesterday. I read Kele's story about Presleys heart suregery and all of a sudden it hit me that they are going to cut my daughters chest open. And I started getting teary eyed. As soon as I got home from the Surgeon's office I called about her synagis shot. I can not take a chance of her getting sick and postponing the surgery again. Especially since Dr Fox said that is the main reason of surgeries getting rescheduled. So I called and she goes thursday for a new synagis shot. I called my sister and she is going to talk to her boss about being here for the surgery ~she is really coming through and it is such a relief to know she will be here to help with the big girls. Then I get a text message from my friend Melissa asking about a date, I told her the date and her reply was "Nice! that will be here before you know it!" then her next message was "I know ur disappointed but the good news there is a date. She will be strong and healthy" Got to love Melissa, she always seems to know the right thing to say : )

Hope this doesnt interfere with surgery

Robert took Kayden to the peditrician this morning. she has an ear infection. She inst fussy or cranky she just has guck coming out.thank good ness for day care who realized the problem. Maybe this is why she has the low grade temp. She is on antibiotics for a week. Hope it doesnt affect our appt with the surgeon on monday ! She seems to be back to her self- talking and spitting (that lip thing she started doing) and putting her fist in the air (like you expect her to say charge !)

Here's what happened

It all started wednesday night.Kayden woke up around 2:30 throwing up, by 3:15 I woke up daddy and he said she threw up on and off until 5am. She does that sometimes and takes medicine for it but never that long. We went ahead and brought her to day care. After lunch Kristi called to say Kayden wasnt really eating and had a fever.I called the pediatrician who said take her to the hospital. So I left work and drove north, picking up Caitlin from school, stopping by the house to get the diaper bag (and something told me to grab a couple of bottled waters from the garage) and then I got Kayden. We drove to the Childrens hospital ER. When we got there they checked us in and we went to triage. Kayden wasnt too happy about leaving mommys arms for the hard scale to get weighed and started cying. While they weighed her they decided to take her temp via her bottom. That is when Caitlin walked into the room, heard her sister screaming, and the hurse shoving something up her bottom. Caitlin got upset and left the room ! We got into our room and the nurse mentioned child life for Caitlin. Shortly after the Doctor came in- she said that she suspected RSV since 8 out of the 10 kids coming in had it ! She didnt think that the shot Kayden got may have been enough in her system and that if it was RSV she wanted to admit immediatly cause the worse was still to come. GREAT I thought ! She also ordered a chest xray. The nurse came and got Kayden and I for the xray and Caitlin waiting in the room. I dont know if you have ever seen this contraption they use but it looks like something out of midevil times ! it has 2 holes for her legs and she balances her body on this small ledge between her legs then half a clear tube comes up on each side while her arms are straight up by her ears, and the tubes straps together (thank goodness Caitlin wasnt there to see that thing )When we get back to the room there is a nice guy named Matt from child life talking with Caitlin. the nurses come in to do the RSV test and Matt takes Caitlin for a walk. the rsv test is them sucking boogies from her nose and they test the mucus. Seems like forever before the dr came back with thumbs up saying RSV test was negitive. then a nurse came in to take Kaydens temp. Caitlin put both hands over the babys bottom saying "no one is touching my babys butt !!" the nurse stepped out and called Matt who came and got Caitlin again- gotta love that Matt !! child life got Caitlin some games to play to help us pass time cause the wait was forever ! We munched on the chips
I had grabbed out of my car and the bottled water I brought. I looked at the clock and it was already 7pm (we had gotten there at 3:30)A social worker came by (real nice jewish girl named rachel who had 2 boys in the 3rd and 5th grades and is divorced- can find out about someone when you are waiting that long in the ER) Anyway, I told her I need to fed Caitlin before CPs gets called on me- I wouldnt be surpsied that was my luck at the time ! So she helped me ordera pizza to the Er- who'da thunk it - I told Caitlin that all our visits to the ER growing up, I had never had a picnic in the ER before. The nurse then did a urine test on Kayden, and they were consulting the radiologist about the chest xray. Seemed like forever and it was getting later and later and I was getting really tired since it was past mine and Kaydens bed time. Eventually they told me everything came back negitive and they called the heart doctor on call who said it was okay for us to go home but wanted us in the office at 9am the next morning. We finally got released at 11:30- eight hours later- and dont think they didnt have us go to insurance first to collect their copay ! I was exhausted ! The next morning I let Caitlin sleep in. robert took Kayden to the doctor and I got Caitlin to school by 9:30 so she counted for attendance and I went to work. Robert called to say the heart doctor cancelled the surgery- I started to cry. We were so close to this being over with. they are thinking it is a virus and want us to follow up with the pediatrician on Monday and see the heart docotor again on the 19th. that is 2 weeks away ! After the appt we took her daycare.I picked her up and Krisit said her fever was 103.I waited for Robert and justlost it.I know anyone would tell us to go the ER with 103 fever but I couldnt. After being there for 8 hours and not sleeping in a couple of days I was exhausted and drained and couldnt do it. so rob called Dr Rowe (cardiologist) and he gave us some things to do and said if it got any higher to go to the ER. Well Friday nite, Saturday and Sunday- was much of the same- fever, fussing and no sleep.I tried to sleep when she slept but it was hard. I started getting sick myself and it really wore on me.I never take naps but was falling asleep any time I laid down ! Caitlin, Kayden, and I took over the living room. We put her pump next to the recliner and the swing next to that. She would start the night in the swing and then when she woke up I would move the the recliner and sleep with her there.I could hear the raspy in her chest and she sounded congested. And thrugh all this Caitlin has been my hero. she wouldnt leave the ER without her sister and she has tried to help so much. and bless her heart- the pump beeps so loud but she didnt wake up, when the phone rang this morning for Daddy to wake me she didnt wake up, but when her sister cried or started to cough- Caitlin jumped up to takecare of her. I am so glad she was here to go through all this with me. I dont know what I would have done without her. and where was daddy...... working through the night and sleeping during the day. but his 4 days off starts today so he gets Kayden duty- I just want one night to sleep all night long !!!!!

Surgery cancelled

Well-Kayden's surgery is cancelled- or at least postponed. I am so bummed and frustrated I can not even talk about it. Of course not sleeping a full night in 2 nights isnt helping or the fact that we were at the ER until midnight last night. I guess I will have to wait until I feel more sane to be able to put it into words.

We have a date !

First I want to say that I spent half of Friday trying to push through Kaydens synagis appt ! I think they just dropped the ball and didnt want to admit it ! The Drs office gave me a load of crap that my primary Dr wouldnt get the referral ! I know better ! Anyway after me throwing fits- we now have it scheduled for Wednesday ! I am not taking any chances of her getting sick. especially cause Teresa is staying home for school today cause she feels sick !

So Caitlin is on her antibiotic for her tooth and it is scheduled to come out on Thursday. Well, she goes to a party Saturday and comes running home, she had eaten a piece of fruit and it pushed up her tooth and made her loose tooth worse ! She ends up calling our friend Jill to come over and pull it- cause after all, Mommy doesnt do that sort of thing ! Jill comes, tooth comes out ! YEAH !!!! except the excitement didnt last long... the tooth fairy didnt come : ( Guess she was just too tired. With a little help she made it the next night and everything is good in the world again. She even left a note saying sorry ! Then Caitlin has the nerve to do a handwriting analysis on the note ! She is definitely going to be a hand full !

So yesterday was our appt with the surgeon. I REALLY like him ! After talking to Kele, I took a list of questions, after asking a couple he asked me "how am I doing ?" She here is the nitty gritty..... He said (btw, his name is Dr Fox) that our of all the scenarios- hers is the best !YEAH !!! He is going to cut her open and open her breat bone (with a saw- I asked if he was going to break it- it made it sound much nicer- although there is no nice way to tell you her breast bone will be held together with wires for the rest of her life ! But he did say the wires wont set off the metal detectors) and repair the atrial septum and ventricular septums ( the walls) and then the mitro valve and tricuspid valves. He thinks it will take about 4 hours for the surgery (his part) but the other things could take 30 minutes to 2 hours. The ventricle septum is real close to a "conductor" and there is a chance he could get to close and then she would need a pacemaker. I little scary to think about ! I am soo glad that I had talked to Kele and Heidi- it game me a good idea what to ask and what to expect so it wasnt such a blow to hear it all from him. Knowing that Presley, Henry, and Zoey have all been through it is so reassuring !So he said "lets pick a date" then he asked "how important is Thanksgiving to your family?" what ? that fast ? no way ! thinking of the other kids I wanted it as close to xmas break as possible so it didnt interfer with school but far enough that she would be home for the holidays. We picked thursday December 11th. I have to call today or tomarrow to schedule her pre op which could take 3-4 hours- fun !

Then I got home and had a "come to jesus" meeting with Teresa. I know she is a teenager but I really need her to straighten up so we can focus as a family on Kayden and not be distracted by her behavior. Besides her grades (2 c's and a f)I discovered yesterday morning that she had taken my phone and text a guy from 10:30 ish to around 11. I found out cause yesterday morning my phone vibrated- I knew I hadnt put it on silent, looked at it and there was a text. I looked in outgoing texts and there was nothing there so I text back and asked who was this. The reply was "Teresa, it's will" I confronted her and she tried to lie but eventually told me that she had used my phone and went in and deleted the texts she sent and put the phone on vibrate. then I find out that when she babysat she asked to use the computer to look up stuff for school- yeah right she got on myspace and facebook and was talking to boys. We discussed that she lied to the parent and how can they trust her with their most valuable possession (their child) but cant trust her with the computer. She is a little embarrassed so hopefully it wont happen again. We also talked about what is going to happen to Kayden and that at her age she needs to step up to the plate and help rather that distract and cause stress because she is sneaking around and lying ! Hopefully we got through to her !

Sugery coming fast

So I called the surgeons office to make the appointment. she asked me when I wanted the surgery, I replied "I didnt know it was up to me!" She said that once we make the initial appointment, surgery will be within 30 days of that appointment. YIKES ! Its coming fast ! We have out appointment on Monday ! I took Kayden to have her pictures done before her surgery- it took forever. Iw ill try to post the pics when I get more time. It took an extremely long time and the camera flash wasnt working very well. I called Sears today and they are sending me some coupons for some new pics.

I also spoke with Kele whos daughter Presley had heart surgery. I find it comforting to talk to people who have already been though this type of thing. It gives the feeling that everything will be okay and that we are not so alone.

On top of everything, Caitlin cracked a tooth and the piece fell out. she now has to have the tooth pulled. Robert took her and I asked him if he scheduled the follow up appointment. He said he was lucky to get out with his life- Caitlin was that upset. She actually left the office and was waiting for him downstairs in the lobby ! By the end of the evening,I had her somewhat agreeable to it but I am sure that will all change once it is time !

Kaydens Dr visit

Robert took Kayden to the Doctor today. Little disappointing as she only gained 4 ozs. But the Doctor is taking her case to confrence on Friday and next week we are to call the surgeon's office to meet him. Starting to feel like her surgery will be in the near future ! I called the primary doctor to get the referral already- don't want to wait until the last minute! It's begining to get scary.