A few lesson's I learned...again!

If you think to do something or most likely you are really prompted to do something....DO IT THEN,  not tomorrow, not next week.  Sometimes it is too late.

If your son runs out of the bedroom of the SLEEPING BABY YOU FINALLY LAID DOWN, and were washing the dishes for the first time in days...DON'T instantly get mad.  Because his response might be, "I was singing her songs to sleep."

Never sit down at the computer during the day because you will find a 2 year old coloring post-it notes in your lap while you try and type and look over his head to see the screen and the baby that you laid down will start to cry so you are now DONE with your blog :)!  

Hiccups :(

peach-fuzz
I don't know if you can see this but I took this pic because if you look at the screen in the background, the blue number shows her o2 level and its 97 without any help (which is normal)!!  
Mckinley's going home!
Harrison's spaceships--it fun to see what he's thinking about through his play...
One of my friends has a daughter that had open heart surgery and she has been such a help preparing me for this, including letting us borrow her daughters onesies that have button's down the front!  I would have never realized how hard it is to get someone dressed if your supposed to not move their arms!!  We have to "scoop" her up with her bum and head--not pick up under her arms.

Binky--$2

Blanket--$20

Couch--$1000

Daddy and baby--sleeping--priceless :)!


Mckinley decided that through everything we're not all that bad and has been smiling and "talking" to us--though I really try not to let her talk because she gets the hiccups and that has been one thing that bothers her the most--it really hurts her chest and she gets the saddest frown and cries the whole time :(!!!  

We've been doing well at home, though I CAN'T WAIT to break free of this 1500 sqft sanctuary!!  

Miracles never cease...

So WE'RE HOME!  Really that is enough said!  I am so glad to be home.

Can you believe that after OPEN HEART surgery she only had to spend 5 days in the hospital??Amazing to me!  When I last wrote and came home to shower, when I got back to the hospital they'd PULLED EVERYTHING OUT (almost)!   They took out her Chest tube (the big tube draining from her chest, where the surgery happened), the pacing wires (they had attached wires to her heart because after heart surgery a lot of times while the heart is healing it can have strange rhythms...too slow, too fast (this surgery usually has too fast problems)...so they have her attached to a machine that can pace the heart if this happens--about 5% of the time they actually have to put a pacer inside), and her arterial line!!! WOW!  In one hour she almost had a normal looking tummy!!!  

I was so happy they were out but kind of annoyed that they did it all when I couldn't be there for her. I had waited for the doctor rounds to run home, but they never came so I asked the nurse if she thought that they would come out today and Mckinley was still draining so she didn't think so.  I had to be back for an apt. with the cardiology NP so I didn't have a lot of time. They gave her morphine and said she did okay. So really that was the biggest thing we were waiting for!

That day she de-sated a couple times (her O2 level dropped to the 80s) and we gave a little O2 but after doing a chest x-ray that looked fine, they said that she still has mixing of blood due to the really small valve she had so that is going to be normal for her, and really we probably do that as well sometimes.  So that night I was able to start to nurse her finally!! She did great!  I was afraid to even hold her, because I didn't want to hurt her but she is a little trooper!  On Sat. we did another chest x-ray and echo--everything looked good, pulled her last line out and here we are!!  Finally able to start recovery at home!!!

We are again supposed to stay away from people for 6 weeks but then we can start leading a little bit more normal life!  Miracles never cease!!!! 

post op: day 3

Yesterday she really slept most the day and we needed to wake her up to eat, which is totally unlike her so it made me a little more nervous.  But I stayed the night and she started to wake up and we took off the O2 and she did fine!  So this morning she started to eat more and wake up more and is acting like herself again.  I guess her body finally realized that she needed to rest from her surgery.  She still has her chest tube and art. line and fem. line (checking pressures) but the other IVs stopped working so they will have to put another IV in and she has bruises and marks all over from their attempts before so that will be a little rough.  She is still doing really well and they moved her to the Anex of the PICU today since she is doing so well!  We are heading back to see her and meet with the cardiologist staff to learn how to do her dressing changes and other care for bringing her home so we can start here at the hospital to be ready for when she comes home.  Thanks for all the well wishing!!  Love you all!!  

Post op: day 2

So today was another miracle day!!!  Here are a few comments from all the Cardiologists that stopped by today...

* "Does she realize that she had Open Heart surgery yesterday?"

* "We are making her are new poster child for heart surgery and show all these other heart patients how to really recover!"

* Doc:  "so pink"

   Me: "yes we had to bring a pink blanket for her"

   Doc: "no no, SHE'S so pink!!"

* "She's thinking, "what just open heart surgery?  What more can you throw at me?  I can take it...give me more!"

So basically she's just blowing her recovery out of the water.  She started eating today and as mentioned earlier she loves to eat so she's already known as miss piggy--eating great even with a sore chest!  She got her folley catheter out today as well since she's doing well in that area also.  She's still swollen but she's not near as puffy as most kids are either!  So slowly, well actually not that slowly, she is getting out all her attachments!  they tried to take her O2 off but her sats dropped some so they kept that one on.  Shes taking morphine, tylenol and an iv drug like ibprofen for pain.

We are so blessed, just can't say that enough.  I had a really hard time a few times yesterday and was unable to hold back the tears, like when we had to give her to the anest. and watch her walk away for surgery, and when they took out the ET tube--it was uncomfortable for her.  I used to be able to hold those in...I could be strong for Kennedy, but it is just too close to home here.  I am so grateful for all the incredible blessings because I'm not as strong as I used to be and they'd have a basket case on their hands...and luckily Heavenly Father knows it!  Thanks for all your comments!  We love you guys!

Surgery Day

SUMMARY:  IT WAS A HUGE SUCCESS!!!!  So if you want to stop reading you because she is doing so well and we are so happy about how things went...your thoughts, fasting and prayers continue to show miracles!  If you want more on how things went, here are the details...

DETAILS:  we got there about 6:15 this morning and ended up waiting till 8:15 to finally get her into surgery.  She hadn't eaten since 3:30 in the morning so things were getting pretty close there at the end and she survived thanks to the binky, walking and rocking (this girl loves to eat and when she doesn't get it...blue faces can happen...literally!).  The anest. took her back and we went and waited in the cafeteria for updates.  

The cardio nurse came three times to let us know when they were finally done with all the "prep" work ( multiple IVs, arterial line, cvp line, NG tube, ET tube, monitors...all the fun stuff.  Luckily they put in 1 IV and then put her to steep to do the rest--which was good because the anest. said she definitely turned blue and needed the surgery when she got upset!).  Then the nurse said she was on the bypass (hear lung machine--this was a surgery where they put all the blood on a machine to continue to pump throughout the body and then cool the body down and stop the heart to work on it).  Then she was off  the machine, the echo looked good and they were starting to close her up!!  

The surgeon came to talk to us around 1pm I think and told us what he did. One HUGE thing was that he was able to do all the repair in less than and hour!  That means less than an hour on the bypass=much faster recovery=decreases risks=Mckinley does much better=comes home sooner!  YeAH!  So he fixed the VSD ( the large hole in the middle of the bottom chambers).  Cut away the muscle that was blocking the pulmonary (lung) valve (the biggest problem--it was hardly letting any blood get to the value let alone up into the lungs),  ended up cutting the pul. valve (it was smaller then they thought originally, only 4mm and it is supposed to be 10-11mm--so this will need to be replaced when she gets older), and then widened the pulmonary artery (the tube after the valve leading to the lungs).  So he did all that in less than and hour---he is an amazing surgeon that works here on Tues. and then goes to Stanford and another hospital, he is the head surgeon in this team and known around the world.  We are so blessed!  

Then we waited for a while again while they got her settled in PICU.  The rest of the afternoon she stabilized and did amazing AGAIN!!!  Usually there are heart rate problems, o2 problems,  blood pressure problems...anyway, she didn't have ANYTHING!  So they started weaning her off the ventilator (the machine breathing for her) and letting her wake up!  So by the time we left tonight around 10:00.  They took her off the machine and was breathing on her own with some oxygen!!!  

Truly amazing, truly a blessing, truly another miracle in our lives...

(will try to keep you posted on how her next few days go but as you can tell we are pretty optimistic!!)

Surgery and some pics...

No, I'm not pregnant again but I forgot to do the everymonth pic as usual, so when I was adding these other pics, I saw my night before delivery pic and thought I'd through that out there since I forgot since 21 weeks!  Also, This is a pic of one of my greatest friends that I grew up with that was able to come and help me with labor.  She has been there for both my girls deliveries and it has been amazing to have her there.  She is a doula and lives in Utah (you lucky Utah people :)) and I couldn't have gotten through without her wonderful help!  Thanks Becca!  She even suffered through a night of no sleep on the chair/bed thing that is slightly better than the floor!

Since we couldn't go to church I wasn't able to get any cute dressed up pics...later...here are a couple of the egg decor and hunt...



...and eat!
Pre-surgery pic...i'm going to have a hard time with that scar I think...
What do you do at home 24/7?  you build a boat and pretend sharks are coming around growling at you so you run "super fast" around and then run in the boat (this is Harrison's new favorite game, from the world of a 2 yr. old).

Mckinley has reached her limit.  We have been home for a month and each week her oxygen level has dropped a little bit, which has been expected, we just didn't know when.  She is scheduled for surgery this coming Tues., April 21, at 730am.  I went this past tues. for her pre-op visit and was there for 7 hours getting lab work, x-ray, meeting with cardiologist, surgeon, cardio nurse, anest. nurse, child life, weighed, measured...all to prepare for this coming week.  It was a hard day and had to fight back tears a few times to be honest throughout the day.  Part was thinking of Kennedy, part was realizing that this was really happening and part was watching Mckinley turn blue and crying so hard she basically couldn't move for a while later due to no energy and not enough O2 (oxygen) after a horrible blood draw session!  

But she needs it so it will be nice to finally be able to not worry and check her coloring everyday and be able to show off my beautiful girl :)!  Her O2 is mainly in the 80s now which isn't great but okay.  We actually almost admitted her today because yesterday her O2 were mainly in the 70s which is really not good, because she woke up in the middle of the night Wedn. with a stuffy nose (she just doesn't have any O2 reserve so anything could bother her).  I couldn't believe it and was so worried...we've tried so hard for her not to get sick.  I prayed all night and yesterday and the congestion started coming and going so the cardiologist wanted to wait the night to see how she did in the morning and her nose seemed better and her sats were back up so we are still at home.  She is stuffy again but I'm hoping it might be a sensitivity to milk--like my other two kids--and not a cold because then she would need to be admitted but push the surgery later when she really needs it now.

So anyway...too much info as usual but letting you know whats happening right now.  We are going to have a family fast Tues. during the surgery and we know that the surgeon will be the instrument in the Lord's hands.  I will post about the surgery and how it goes.  All your prayers have been a wonderful blessing, thank you.

Chromosomes...

her first car ride...


my attempt at a cute pic...I really need help huh :)

I don't know if I ever wrote this on the blog but during the first u/s that we had with the cardiologist we were told that  50% of kids that have this heart defect have a chromosome problem ( a deletion of part of the 22 chromosome) called DiGeorge syndrome.  We were therefore worried that our little Mckinley would have this as well since HALF of the cases do.  I didn't do an amniocentesis so after birth her blood was drawn and sent away for the test.  Well...we got it back and  SHE DOESN'T HAVE IT!!!!  I can't tell you how grateful we are!  After her heart surgery she will be able to lead a healthy, happy normal life!  We would have loved her either way obviously, but it is so nice to know she won't have many other things to worry about as she gets older!

After all that has happened since she was born I was just thinking about the scripture in 2 Nephi 2:11 about "opposition in all things."  I was feeling so blessed and realized that I probably wouldn't  have felt so lucky and so blessed if I hadn't gone through other things...SO I really see that opposition in our lives brings us closer Our Father...

 (here's some examples in no particular order)

**If I hadn't known that she could be blue/purple at birth due to her condition, would I have noticed just how wonderfully pink her little face was the first time I saw her?  

**If I hadn't had an u/s letting me prepare would I have been so grateful for the time she spent in newborn ICU making sure that she was okay (not to mention all the mds and nurses that were there waiting for her to be born?)

**If I hadn't gotten a cold and not been allowed to see her for three days after birth, would I have been so grateful for the time that I was able to spend in the crowded NICU at Children's, nursing in front of EVERYONE and their dog (oh I mean students/residents/mds/families/socialworkers/respiratory/childlife specialist...)?

**If I hadn't known that there was a possible chromosome deficiency would I have even thought to thank my Heavenly Father for NORMAL ones?

**If I hadn't seen the other babies in the NICU would I realize just how good my little one was doing?

**If I was able to go to the grosery store or anywhere for that matter would I be as grateful for the wonderful dinners that are being brought to us STILL! (since she can't get sick, I can't take her anywhere right now before surgery)

**If Harrison hadn't gotten sick this past weekend (the 24 hour throw up thing) would I have been so grateful that he got sick sat. morning and felt fine sunday night (just in time for Ryan to care for him so I could hibernate in the bedroom and keep Mckinley safe) and that it was just the 24 hour flu and not a cold/lung thing that could seriously harm our little girl?

**If Ryan wasn't gone starting yesterday till Thurs. out of town (my first solo with the two kids with no hubby or mother to help) would I be so grateful for him in the evenings soon or the fact that people are bringing dinner mon, tues, and thurs while he is gone AND this morning another friend offered to take Harrison on a playdate AND another friend brought dinner FOR THE SECOND TIME so that now, even wend. we will have dinner so that I don't have anything to worry about except the kids (and neither of them knew ry was gone)??

**If I hadn't delt with surgery before would I be so grateful for the fact that we moved here just in time to receive care by a world renowned pediatric heart surgeon that has pioneered some of the heart techniques used today?

**If I hadn't had two kids that DON'T like to eat ( I know its crazy!) would I be so grateful for a little girl who absolutely LOVES to eat?

**If I hadn't lost my first daughter, would I have been as grateful for another even though she does have a heart defect?  Sometimes is seems so big (the heart things) but really how small is the fact that she will have a surgery by an incredible doctor since we are blessed to live in these days, and then (if we are so blessed) be able to live a long healthy life here?

okay...so I could go on and on (as I did :)) but sometimes you just have to say something or explode...so I exploded here :)

**Would I have realized just how special all you guys are, all our friends and family, if I hadn't gone through the things I have and found so so many incredible people help me along the way...thank you...

We're home!!

We made it home!!!  After the cardiologists looked at her last echo they sent  us home!!!  We feel so blessed.  They did the echo cardiogram on Monday and her heart and lungs had finally stabilized.  The pressures were the same as the friday one and so the changes after birth had finally happened.  So since the heart and lungs were stable and she was still pink, and o2 sats were still in the high 90's they were able to send us home. 

I kept wondering why they were having such a hard decision when she was looking so good, but one of the cardiologists said that her heart didn't look good--that is looked like she needed surgery,  but then you look at her and she just looked great.  So they were waiting for her to suddenly go downhill like her heart looked.  But she never did!!  So I just want you to know that fasting, prayers and blessings sure do work--so we can have the time for her to mature and get bigger so that the surgery has the best possible outcome!!  

They are watching us closely--the home health nurse came Wed., we saw the Cardiologist again thurs. and then we saw the pediatrician today.  They all said she looked good!  So we are taking it a week at a time.  When her o2 sats are in the mid 90's they will watch us closer and when they are in the low 90's high 80's she will go in for surgery.  So we are hoping she can wait for 2-4 months!  

In the meantime we need to fatten her up and not get her sick!  She loves to eat (unlike EITHER of my other kids) so hopefully that will be easy but the not getting sick part is going to be hard.  I can't take her in crowds or inside  a lot of places, but we can go on walks and parks when the weather is nice.  So church sounds like its out for a little while and it will be really hard on Harrison if he can't see his friends during the week--but these months will go by and she will have surgery and then recover and then be a healthy little girl!  I am looking forward to those days !!  

Thanks again for all your love!

Introducing...Mckinley Linton

Mckinley Linton

March 6, 2009

7 lbs. 4 oz., 20 in.

Mckinley came on Friday, March 6.  It was my longest labor yet, due to the induction, but after I let my doctor break my water at 4:05 pm I went from a 4-10cm and she was born at 4:50!  She did incredible!  The neonatologist, the respiratory therapist and NICU nurse were there and she amazed all of them by pinking up so fast that I even got to hold her for a few minutes before they took her to the NICU!  She had her Echocardiogram done and she looked okay enough that after a couple hours they let me go in and nurse her!  

Things were going really well till the new shift came on and found I had a cold (which I told the other shift...) and I wasn't aloud to see her anymore incase I got her sick.  I was so sad but I didn't want her sick either.  So I started pumping milk.  She stayed there at that hospital till Monday, when they did another Echo and decided that she needed surgery sooner so that transported her to Children's hospital Oakland (I was finally able to see her monday!).  Then Tues. all the ped. cardiologist and the surgeon meet and decided to wait and see a few days more.  So then we thought she could go home on the following Monday.  Well, then they did another Echo Friday and put her on the schedule for surgery this Tues (march 17).  But now she still looks so good they are doing ANOTHER echo Monday and bringing it to the Cardiology group again tues morning adn they will decide then if she has surgery that afternoon, or if she gets to finally come home!

So, what the hard part is, is that her Echo does not look very good, it looks like she really needs surgery and she isn't getting the oxygen that she needs.  But then if you look at HER she is pink (with a little bluish hands and feet sometimes) and has oxygen saturations in the 90's (normal) almost all the time!  So they just don't know what to do.  On cardiologist said that "she will tell us what we need to do"  so I think that she will.  I am just praying that the doctors will be lead to the right decision for her that she will get the best outcome and the surgery will go the best.  So wether it's this Tues, or a few months from now, she will be taken care of!  

Thank you all so much for all of your congrats, thoughts and prayers!