PICTURES

PICS...

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I love her so much!

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Before surgery

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After surgery (she's got so big!)
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Poor baby has my fair skin now!

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MADISON NICOLE'S BEAUTIFUL AUNT NICOLE

Nicole would have been 25 years old today. She was the most beautiful loving friend I have ever had. I still think about her everyday and miss her so very much.

We are home!

We got discharged yesterday around 6 pm and got home around 8! Madison is doing fabulous! We are so blessed to have a healthy baby with a fixed heart! We are so relieved that the surgery is over. She has got a long recovery ahead of her, but she is such a fighter! We are still on restirictions with visitors and public places. Chris and I cannot wait untill we can actually take her out and show her off! (maybe Christmas!) Thanks to everyone for reading my blog and caring so much for our beautiful Madison. (...pictures coming...)

Unhooked...

MY BEAUTIFUL MADISON NICOLE (with no tubes!)Making faces at Papa

My baby free of wires and tubes!
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Today was a great day! The doctor said that I could just nurse her everytime she is hungry. I think she has been so crabby lately because she was hungry. They were only giving her 2.5 ounces every 3 hours. She gets double that when she nurses. She is back to being a content, happy baby. We also got "unhooked" from all of her monitors. She also got her feeding tube out for a trial 24 hour period. So as long as she eats good and gains weight we don't have to go home with the feeding tube. So far so good though. She has her final echo tommorow, so as long as everything looks good we may go home tommorow or Tuesday! I feel like her surgery was sooo long ago. She has come a long way and I am so proud of her. All the doctors and nurses have been saying that she looks so great.

Our 12th day at U of M

Sleepy girl

MOMMY'S BED

Our tiny tiny room


We have been SUPER BUSY! Madison has been doing great! We are now in the general care unit. The only tube Madi has now is a feeding tube. It is so wonderful because we can pick her up anytime. We even got "unhooked" and took a stroller walk to the 8th floor where they were having a "tailgating" kids party. Her feedings are going better...she is finally taking the bottle. We are just going to stick with that untill we get home and then we will introduce nursing again. Chris and I are very much on own own with her care which is nice but tiring! I get to "sleep" on a tiny bench. We have a roomate that is very active and loud at night. Madison has been sleeping pretty good at night untill her buddy next door starts screaming. We are seeing the light at the end of the tunnel. The discharge nurse came to talk to me today and I got really excited, BUT she still said that we will probably be here untill at least tuesday. I have just been praying for patience because I don't want to come home too early.

Moving on up!

We moved to Moderate Care!

She is praying for food!

Looking at Gramma.

Look at how coordinated she is!
The nurses had fun dressing her and making her bed cute!

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Yesterday was a buzy day. We moved from the ICU to Moderate care. I am so happy we are moving in the right direction (HOME!) but I loved everyone in the ICU. The nurses are so buzy in Moderate Care. I had to remind them to give her her pain meds. I had to tell them her machines were beeping. My mom and I are pretty much on our own. It's pretty stressful because I have never taken care of a baby that just had major heart surgery. Madison has been pretty crabby the last 2 days. We started feeding her a bottle, but they can only give her less than an ounce an hour (yesterday it was only 1/2 ounce and hour). SO she sucks it down and then gets ticked because she is still hungry. She is doing better with the bottle today though. Yesterday she had no clue what to do with it because I had only nursed her. I wish they would have told me that she would only be getting the bottle because I would have stopped nursing her. They told me today that when she goes home I will have to feed her 1/2 breast milk and 1/2 formula in a bottle for extra calories. I am so upset that I probably won't be able to nurse her. BUT if that's the worst thing that comes of this...I will take it! She is such a fiesty little thing, I think that is why she is doing so well. I am so glad that she will never remember any of this though. This is our 9th day at the hospital and I already feel like I live here. My mom and I are taking shifts with her because I don't like to leave her AT ALL. Thank heaven for my wonderful mother. I don't know what I would do without her. She has helped me so much and I have never been so greatful.

What a "WONDERFUL" night!

HER PERFECT STATS:

146-Heart rate (perfect)

58-Respirations (supposed to be 40-60)

79/46-Blood Pressure (perfect)

15-Blood flow (perfect)

100%-Oxygen level (perfect)

Sleeping Peacefully

In her bouncer, happy as can be!
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I got up this morning and called the nurse to see haw Madison's night went and she said she had a "WONDERFUL" night! YAY! I was so happy! She slept peacefully, got her c-pap off and her blood gas tests are getting better. All she has is one IV, oxygen and the feeding tube. They also tried a bottle and she did great. But they did give her a feeding tube for today just to make sure she can handle food in her belly. Hopefully tommorow I can feed her a bottle or even nurse her! We should maybe be out of the ICU by tommorow or Thursday. I am so happy that my girl is back to her happy self. She is such a cutie!

Our 7th day at the hospital...

Last night went great, just fussy again. She has a temper and she is really ticked off about not being held and having all of these iv's and silly head/nose thing (c-pap). They say it is good that she is working her lungs but they need her to rest! A 6 week old baby should not be up all night. The plan for today is to SLOWLY wean her off the c-pap, discontinue her meds to make her pee and REST, REST, REST! Chris left yesterday to go to work today and he has already call a few times. I miss him already. It's hard not to have your husband by your side. Plus, he can calm Madi down easier than me for some reason! The nurse said that Madi knows its me and she may be getting upset that I'm not nursing her. I held her a lot yesterday and I got really emotional because I was so happy. I will never take for granted holding my baby again (even if it's at 3 am!). We got into the Ronald Mcdonald house last night, so we will be there for the rest of the stay. It's only $10 a night and walking distance from the hospital.
**Madison is such a trooper! She is so loved by so many people! Especially her MOMMY!

Not all days can be good :(

***Yesterday she got off her ventilator (YAY!). She did great all day and night with breathing on her own. She was up all night with gas though (that's my girl!). This morning they did an ultrasound and found a little bit more fluid around her lungs. They sedated her a bit and did a procedure to drain the excess fluid and it worked beautifully. She has had a really hard time waking up from this though. I think because she never really went into a deep sleep all night, so she finally felt comfy and she passed out! But because of this she has been lazy with her breaths. Her stats have been up and down all day. They decided to give her c-pap (?spelling?) which is oxygen with a positive pressure to expand her lungs. They were really happy with her stats right after but then they started to go down again later. She turns really blue when she gets mad. They are watching her really closely right now. They may have to put her back on the respirator if she doesn't get better. I felt so lucky the last 4 days, but today is a slight set back. I still think she is still progressing well considering that she is 6 weeks old and she just had major heart surgery. I am up in the computer lab at the hospital right now. I feel so stressed out when there are nurses and doctors around doing stuff to her, so I needed to get away for a second. Sandy (my mother in law) is sitting with her. GOOD NEWS OF THE DAY: I got to hold her!!! It was such good therapy for me and her (her stats went up!). I needed that so bad. Not holding your baby for that long is not natural and it was killing me. Although, it is such a process with all of those tube and wires, it was well worth it!
**Thank you so much for all of your comments, emails, calls and prayers. I miss the real world but my world revolves around Madi and as long as she is getting better, I couldn't be happier.

Go Michigan!

GO BLUE!

Michigan's winning and she had another great night!

Madison got all of her chest tubes and foley cath out and she is off her blood pressure meds. They have done two "sprint" tests where they turn her respirator off for an hour and let her breath on her own. She did great! They are going to do a few more just to make sure she will do good. She will probably get her respirator out today! Right now she is pretty sedated from getting her tubes out so she is resting peacefully. God is good!

Madi is awake!

Her eyes look a little different because she is sedated.

Her bandages are off and the scar is so thin and tiny!

She is so awake today! She has been looking at Chris and I and moving around. She had a great night last night, no real changes! They are weaning her from her blood pressure meds, epi and respirator! She is breathing mostly on her own! The doctor came in and said that she will probably get her respirator out by Sunday or Monday. Yesterday her belly was so bloated and they thought it was gas but they did a scan and saw lots of fluid around her lungs. SO, they had to put 2 new chest tubes in on each side. They are under her armpit though, so the scars shouldn't be too noticable. They drained her fluid so much that she looks like a new baby! She is nice a slim again. They said that she is making wonderful progress. YAY!

2nd night...

Well the 2nd night went okay. Her blood pressure kept decreasing and they had to give her more meds. They said that this is to be expected though because she is getting so many fluids. As her fluids leave her, it causes her blood pressure to go down. So untill all the extra fluid is gone she will continue to be on blood pressure meds. The doctors took out one of her tubes! We are excited to see progress! They said that she will be on her respirator untill the middle of next week. So she will probably be in the ICU untill NEXT weekend and then in general care for another week. SO, we will definitly be here for thanksgiving.

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When we got here Chris's Dad and Ronda were here and they were reading a Curious George book to her. Inside Grandpa Leideker wrote a poem to Madison...

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MADISON

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To our newest member

of the Leideker family

I write you this note

most lovingly, most Happily!

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We all sit and watch you

as you restfully sleep

your eyelids closed soft

in slumber, so deep

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Just 5 short weeks old

your life's just begun

yet already you've endured

like your Dad, like my son

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Your're THE only focus

of so many that care

the brightest of Surgeons

Nurses beyond compare!

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So many machines,

tubes, lights, and attention,

Meds, Guages, soft hands

MAXED love and affection!

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Your tiny body just stretched

to our elated suprise,

and for a brief moment

you opened your soft eyes!

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Life's never seen

more care and true love

from family and friends

and from God above.

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So rest, dream, recover

young Madison Nicole

for love's ALL around you

helping you reach your goal!

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Chris and I went in to see her and she was WIDE awake! The nurses said it was okay to touch her and talk to her today! I said Hi to her and she saw me and SMILED!! Chris took a turn too and she smurked at him. I could tell she was happy to see us! It made our day! I never thought I could miss someone one so bad that is right in front of me. But I miss holding her, rubbing her face, changing her diapers, giving her baths, kissing her checks, nursing her, and even staying up with her at night! I love her more then I ever thought I could love anyone. She is my beautiful miracle!

Pictures of Madi at the ICU

SO MANY TUBES!!

Madison in the ICU (she is stretching out like usual!)

She still looks so beautiful!

It's 3:30pm and she is doing well. Her blood pressure is getting better and they are slowing trying to wean her off of the epi (which keeps her heart rate up). She is very resistant against the sedation drugs because as soon as you talk to her or touch her she will move around and open her eyes. (which they don't want her to do yet) It is so hard to just sit next to her and not be able to talk to her or touch her. I feel so helpless!

The first night went well

Well the first night went well. Chris and I stayed here untill about 11pm, then we went to the hotel and got some needed sleep. I felt guilty about leaving but the nurses and doctors said that she wouldn't know if we were there or not and that it would be a good night to get some sleep. This morning we went in and she looked a little puffy. They said that she was given a lot of fluids that make her look puffy and gain weight (she gained 1.8 lbs). They said that her blood pressure meds caused her heart rate to go up so they had to switch it to another medicine. When Chris and I started to touch her and talk to her she started waking up and moving around. This stimulation caused her blood pressure to go down again so we had to stop. They are going to start her on her sedation meds again because they dont want her to be that awake yet. It was nice to see her awake though. She had her arms above her head (like she always does) and she was kicking her feet. Someone put a cute ribbon headband on her and she looked so adorable. I had a hard time seeing her today though because she was awake and moving around but still has the respirator and all the other tubes in. There are so many machines that beep non-stop. It's scares the heck out of me! The surgeon came in to see her this morning and said that she is doing very well though. To me it seems like she is not doing well, but after such a huge surgery I guess she is doing good. Madison is so strong. I am so proud of her!

The Surgery is over!

Madison's surgery is over and it went great! Very "textbook" the surgeon said! She did great and now we are just waiting to see her. We will probably be at U of M for 10-14 days. I will try and update the blog every couple of days. Thanks for all your thoughts and prayers.

Madison is 4 weeks today!

Ghost shirt

"Mommy's under my spell" Shirt

Pumpkin shirt


She's saying HI!

Getting burped by mommy

Madison had a good Halloween, we hungout at Grandma Sandy's house and passed out candy. She had 3 outfits! So we just put her in all of them and took her picture! We have so many pictures of this girl! She doesn't know what life is like without flashes in her face! Madison is getting big, she is over 8 lbs now. She is sleeping pretty good (sometimes 6 hours at a time!). Chris has been pretty sick for the last week with a cold. SO, Madi and I have been staying at my parents house or Chris's moms house. Chris offered to leave and stay somewhere else but I was too scared to stay home alone!! Such a baby, I know! Chris is missing his girls so much that he has been stopping by and saying hi with a mask on! We wish we could come home, but it is not worth the risk. Her surgery is in a week and she needs to be healthy. Chris got a tattoo of Madison's name on his arm. It's really pretty font and its not too big...I love it!