Coping and Adjusting :)

Aiden at home

We've been home for 5 days and I must say.... I'm not sure I knew what tired was before I became a mom ;). Aiden's special nutritional needs are keeping Jeff and I on our feet. He needs to eat every 3 hours (60 mls or 2 ounces) and I have to pump breastmilk at that same interval. So first I pump... then we offer the milk in a bottle to Aiden. He has 20 minutes to get the bottle down before we give it through his feeding tube. He has been taking anywhere from 30 to 50 mls so we're pretty happy with his progress. He is sleepy alot and we have to struggle with him to stay awake to eat. After a diaper change about 1 hour and 15 minutes have gone by and by the time we settle down to sleep there's only 2 and a half hours before we have to do it all over again! Add changing extra diapers, feeding and walking the dog, feeding ourselves, showering, doing chores around the house and answering phone calls and our day is full!

Aiden is getting stronger every day. We went to our first pediatrician appointment and the doctor heard an irregular heartbeat and insisted that we go immediately to Children's.... yes... there was some irregularity to it but nothing to be concerned about. The doctor decided to do a quick echo to check out his heart function and it turns out that his heart almost looks NORMAL! We were so excited. The aortic valve is very minimally dysfunctioning so over time we're hoping that all the medications will be stopped. We started to wean the lasix already. Tomorrow we are adding some extra volume to his feedings to try to get him to gain some weight. We are at 8 pounds. We've lost 3 ounces.

Today I pulled out Aidens feeding tube by accident and had to have the visiting nurse put it back in. I was trained to do it at children's but I just couldn't stand putting Aiden through another procedure. Aiden loves to be held and cuddled but anything out of the ordinary (diaper change, bath, changing clothes) yeilds screams that the neighbors can hear. If nothing else we're happy that his lungs are good. He has a funky diaper rash going on but other than that - normality is setting in. I'm finding myself now stressing over the normal baby stuff and the visiting nurse keeps suggesting that I drink some wine :) I may take her up on it tonight!

Again - thanks to everyone who has supported us through this whole ordeal. Jeff and I felt sick yesterday entering Children's again... but thank God that the hospital exists.... and thanks to all the special people who work there. We will be big advocates for the congenital heart foundation from this point on. If you are interested in supporting this foundation... more information may be found at childrensheartfoundation.com. Jeff and I are planning on sending gifts to the CICU each year for the patients. We received many gifts from other families during our stay there and it was really helpful to keep our spirits up.

We'll update our progress as we go. We want to wish all of you a Happy Thanksgiving. This year we are saying an extra prayer of thanks for all of our family and friends who have helped us to pull through this ordeal. Most of all, we are thankful for our little star.... Aiden Michael.

God Bless and Happy Holidays!

Kimberly, Jeff and Aiden

Together as a family

Aiden Day 12 (discharge)

12 days after birth, 10 days after open heart surgery, Aiden, his mom, dad, and Denver are home together as a family. Aiden was discharged from Children's Hospital around 11:30am and ventured out into the cold Pittsburgh outdoors bundled up and fast asleep! His mom and I rode home separately but Aiden didn't make a sound the entire trip home in dad's car (yes, I added that mental note for future reference :). After we brought Aiden into the house, I set him down in the living room and welcomed him home. Kimberly and I then turned to each other and hugged in tears of joy. "We're finally home", we said.

That was immediately followed by a taste of reality involving approximately two hours of screaming and numerous diaper changes!!! Unfortunately, Aiden also decided to not tolerate his feedings as we went through about 4 of our 150 outfits in 2 hours.

It was certainly a tough road to travel. Although, Aiden persevered through one of his toughest challenges in life. We still certainly have concerns about his health (without being able to look at the monitors anymore), wonder if we're taking care of him the right way, etc...but I guess this is what parenthood is about - making sure that your child is ok and has the best chance of success in life that he can have.

Although we knew we had an incredible group of family and friends, this experience has shown us that people are truly caring and generous. We have received so many kind words, gifts/clothes brought to us at the hospital, food delivered to our house, tending to our dog, sitting with us in the waiting rooms, thoughts, prayers, cards, emails....we probably missed something but do understand that we will never forget all of your acts of genuine kindness.

We will continue to post Aiden's progress on this site but on a less frequent basis. We think it's good to remember these times and keep track of Aiden's progression. We also love to read everyone's comments!

Thank you all again, from the bottom of our hearts.

And, thank you God for giving us our healthy little boy, Aiden.

A star has truly risen.

Jeff & Kimberly

So close I can taste it

Aiden Day 11

Hi everyone! I'm doing really well and my mommy and daddy tell me that we're going home tomorrow. I'm not sure what or where home is but they seem excited about it so I'll play along.

They say that I have a big brother and his name is Denver.... I can't wait to meet him.

Today was a really good day for me. I got to leave the unit with my mommy and we walked down to the radiology department to get a chest xray.... I was amazed at all the lights in the ceilings. A strange woman named "transport" went with us but my mommy did all the work. The nurses in the radiology department strapped me down to a big metal table and put my head in a foam box. I didn't like it.... I screamed a lot. They covered my pee pee with lead. My mommy had to wear lead to. The doctor said my xray looked good so I hope they stop clapping on my chest soon.... knowing my mommy though, she'll continue to do it for weeks after we leave the hospital.... she's scared I'll get pneumonia.

Next - I had my final echo. The man warmed up the goop this time so I kept the crying to a minimum. The doctor said my echo looked very good and that my Aortic valve is only leaking very mildly. Hopefully I will get completely better and not have to take that medicine called capoten one day. I'm also off of the oxygen. I just kept taking deep breaths like my mommy told me. It was easy.

I'm kind of fussy today... I just can't get comfortable and I don't want anyone but my mommy and daddy touching me. The nurses poked a hole in my heel for a PKU test. I was really mad and got my heart rate up to 170. Otherwise my vitals are rock solid stable. The doctor told my mommy that he cant wait until I go home becuase he wants mommy to stop watching the monitor. But I watch it too.... in the middle of the night it glows real pretty and I stare at all the waveforms while my mommy plays lullabies.

My daddy came later in the afternoon today. I was so glad. I like it when we're all together. We're all staying in my room tonight. It will be like a sleep over. We're going to watch the Steeler game. This will be my third one. Maybe it will make more sense to me the more I watch it. It must be a big deal because both of my nurses have "steelers' written all over their outfits and my daddy brought me a steeler onsie with footies. My mommy got in trouble for putting me in that brown onsie yesterday... I guess brown is her favorite color... it really didn't have anything to do with the Cleveland Browns. I spit up all over it just in case and she had to change it.

So that's it! I'm signing out. I have to go home with a feeding tube tomorrow which is a bummer. I'm sucking real well but after about 10 minutes I lose interest. There's just so much to look at around the room. I would rather do that.

My mommy is sick now too.... she says she has cabin fever... but none of the doctors are helping her so I guess it's not too serious. She says it will be gone tomorrow.

I'll write more tomorrow when I get "home". Mommy and daddy say I'm gonna love it. We'll see... I bet they are right.

TTYL

Aiden

Home is calling

Click on the above picture to view the entire Day 10 album.

I think it goes without saying, but we're all looking forward to going home together as a family. Currently, mom and Aiden are rooming at the hospital, Denver is with his grandparents and dad is at home sick on meds (been a few years for the record!). Interestingly enough though, before I left the hospital last Thursday, I put my hand on Aiden's head and said a prayer. I told God to give him strength and to take some of my strength to get better...funny how he has progressed and, I, regressed since then. ;)

The doctors still tell us that Aiden will be released on Friday. Today, they pulled his pacer, performed a hearing test (he can hear!), got a Hep B vaccine and a bath. He's still on the lowest oxygen setting but the surgeon says he'll be off of it tomorrow. Aiden buddy, you still need to work on your timing though...he still prefers to 'let it all out' whenever he gets a fresh diaper. He also needs to understand that the bottle is a GOOD thing and not an indicator to go asleep! The feeding tube may stay in tact when we go home so thank God for nurse mom who can remove it!

Dad washed a load of his threads tonight so check out his fashion shots throughout the week! Your continued thoughts and prayers are very much appreciated!

Stepping up to step down

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Hi everyone! I stepped up my game and got out of the ICU today and livin' large in the progressive care unit. I have my own crib and finally got to wear some nice threads (a onesie but, come on, don't I look good?!). I'm even sucking on a bottle...I fall asleep though...not sure what I'm supposed to do...have to concentrate...feeding lady says I need some practice. I'm really happy because my mommy doesn't have to leave at night. My sick daddy even stopped by and cuddled me with his funny mask on. Nurses and doc said I can stop carb loading today so my feedings are down to 60mL. I puked on my dad...I think he was ok with it. Pooped for my mom right after she changed my diaper. I gotta work on my timing.

My mom and I are just gonna chill here for a couple of days until I get my sodium regulated and they take me off the oxygen. I have to be able to eat right too. That's really it for today. Going to bed now. Love you all!

What a difference a day makes!

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Just getting home from the hospital and wanted to update everyone. Aiden had a WONDERFUL day today. He's made remarkable strides in almost every aspect of his care. He had his IV in the neck removed and he doesn't have any more tubes except one for feeding. They turned off the Milrinone which was the medication for his heart and also weaned him off the nitric oxide which lowered the pressures in his lungs. They even changed him from a high flow oxygen to a regular oxygen and he's down to 1 little liter. They will probably wean that off tonight.

His breathing is MUCH BETTER. He's breathing about 30-90 times a minute (40-60 is normal). So I can relax. His repeat heart echo shows that his aortic valve is only mildly leaking so that's great news too.

Aiden spent the day sleeping, and sleeping, and sleeping. Occassionally when someone other than his mom touched him - he would squeal and cry like an ambulance siren. He has the most high pitched scream.... Jeff's never going to sleep through it :) He even smiled 3 times... which we realize wasn't purposeful but thought it was perfect for the situation. The pastor came by and said prayers with us and the cardiology service gave Aiden a nice keepsake too. It's a bead journal. Basically a string with his name spelled out in beads. They gave me a cup of all kinds of different beads and a chart that explains what each bead represents. Each different bead represents something that Aiden experienced (a unit of blood, a medication, surgery, ECMO, oxygen, a cardiac cath etc.). I sat today and and put the beads together. It will be a nice keepsake for him to show him everything that he's been through.

The doctors told us that we will be transfered to the step down unit tomorrow. We're officially the healthiest baby in that unit now.... no others are getting out of bed or crying. The babies there are so sick. I tried feeding Aiden breastmilk with a bottle today but he doesn't seem to know what to do with it. The nurses tell me that this is normal after surgery on the little ones. They will consult a feeding team of therapists to work with me upstairs.

So I'll be staying in the hospital with Aiden starting tomorrow until he comes home hopefully by the end of the week. Jeff will have to update the blog. Thank you to everyone who is praying for us or visiting, dropping off food or gifts. We are so blessed by this whole experience. It really puts things into perspective..... the only thing that matters is family and friends and health and happiness.

PS...thanks Mom and Dad for taking care of our other baby... Denver. We miss you buddy and soon you'll be home too! And thanks to Jeff's mom Dona for buying me a robot that sweeps my floors each day while I"m not home. Rumba is keeping my house in order through all of this chaos!

Little, by little...

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Today I had a good day. My mommy and daddy came to visit early and later my Aunt Melissa and Grammy and Pap came too. One of mommy's friends even stopped by. I like to look at all of the faces when I'm not sleeping... but I'm really sleeping a lot. I must have been through something really big because boy am I tired.

I'm still breathing fast but the doctors keep telling my mommy and daddy that I'm not working to breathe. All signs point toward recovery... it may just take a little more time than expected. I'm still breathing in that gas that lowers my lung pressures and tomorrow they may turn it off. My mommy worries about this because she doesn't want me to struggle to breath. She was holding me today and chanting over some strange beads when the doctor came in and told her to relax and enjoy me and to stop worrying about something that will fix itself in due time. I hope she listens to him... he seems smart.

My Aunt Melissa says that I have my mommy's eyes.... I don't think so because hers are all swollen and puffy and my swelling went away a few days ago. I definitely have my daddy's hair and skin tone and long arms and legs.... the nurses say that I already have the ladies in my back pocket... not sure what that means... I haven't even had any clothes on yet.

Today I turned 1 week old. At 4:57 my mommy and daddy sang Happy Birthday to me. It made me go to sleep. I watched my first Steeler game with my dad... he said it was good bonding time. I'm not sure what all the fuss was about.... men ran around on the grass and he cheered... I just slept :)

I'm drinking so much milk that my mommy can't keep up with my caloric needs so they are supplementing my diet with formula.... I'm going to grow to be big and strong. My dad predicts I'll be 6'5''. Maybe I'll play basketball.... have you seen the size of my hands? The doctors took out my chest tube today and another one of my IVs. I"m down to just one more.

Well - I'm going back to sleep now.... I need to get ready for tomorrow. I might come off the funny breathing gas and the Milrinone drip. The doctor even told mommy that there's a chance I may be transferred out of the ICU tomorrow ...this makes my mommy even more nervous and she told me that she will stay with me 24 hours a day. I'd like that. Daddy is going back to work tomorrow so that he can be on vacation when I come home. I'll miss him though... I like how he talks to me. Wish me luck!