Returning to Work :(

January

Twelve weeks have gone by really fast. Unfortunately - I will return to work next week. I'm sad to leave Aiden 3 days a week but it will be nice to get back to normal. I do miss the people who I work with and the sense of purpose that comes with my job. I'm grateful that I'll be able to return 3 days a week and share the position with another educator so that the unit is covered five days a week. Jeff is still working at FedEx and is doing well. He went skiing the other day to get "out of the house" and enjoy his favorite passion. He and I both enjoy the outdoors and it's been a little rough being held captive in our house these last 3 months.... but we wouldn't have it any other way :)

Aiden is doing so well. He is 11 weeks old and weighs 12 pounds and is 24.5 inches long. He is gaining weight nicely. He's a little finicky with bottle time but we've got some tricks up our sleeves to get him to take the volume he needs. He's being followed by a developmental specialist (courtesy of a federal program for all "at risk" babies) and she states that he is progressing nicely. He's right on target for all developmental milestones. He does loathe tummy time though and is a little weak in the upper extremities. This probably comes from the fact that we didn't put him on his belly for obvious reasons until the second month. He's sitting up with support and loves to sit on the couch like a big boy with mommy and daddy. He is also full of lots of baby talk. He loves to make new noises and wiggle around. The bouncer is his favorite place to be and he loves to smile. If you smile at him, he raises his shoulders and flashes a smile back that will melt your heart. He's holding on to rings and rattles and absolutely loves to watch baby tv and music concerts that his dad records. Currently, his favorite band is Dashboard Confessional. He bounces up and down when the songs are upbeat. It's so cute to watch.

Aiden is being followed by his pediatrician closely and his cardiologist. But we don't have to return to the heart doctor for another 6 months. At that point she's going to discontinue his medication since he will have outgrown his dosage and won't need it at that point. His echo this week showed good heart function and good valvular function. He does have a trivial amount of leaking from his aortic valve but the doctor did not seem concerned. We are hoping that it will go away on it's own as Aiden grows.

This week we saw a neurosurgeon to have Aiden's anterior fontanel (soft spot) evaluated. It's quite large and irregular. The surgeon said that it's not uncommon to have a large fontanel and Aiden's head is a little on the larger side... he's in the 75th percentile. He did however want to do a head CT to make sure that there isn't excess fluid around the brain. Luckily this issue is probably familial as the surgeon found that the size of Jeff's head is larger than normal. One less thing to be concerned about would be great!

Aiden is sporting lots of Steeler attire these days. He's a true fan already. He's looking forward to the Super Bowl... he has a Steeler Onsie hanging on the wall in his nursery and a football in his crib.

We'll update the blog next month. Hope everyone is doing well. Thanks for all of your thoughts and prayers. We are so blessed.

Love,

Kimberly, Jeff and Aiden

Happy Holidays Everyone!

Pre-Christmas

Christmas

Wow.... can you believe that I'm 7 weeks old already? Time is flying by so fast. My mommy is upset because her maternity leave is more than half over. She says that she'll have a hard time leaving me to go back to work. She says it's because I'm so cute....I dunno :)

I"m doing really well everyone! Thanks for all of your prayers. Last week I weighed 10 pounds and 4 ounces. I'm in the 50th percentile for everything except for height.... I'm the 70th percentile for that. Maybe I'll take after my dad and be 6 foot 4! I already have his blonde hair and blue eyes. I'm having fun meeting all of my Aunts and Uncles and Grandparents.... even some of my mommy and daddy's friends have stopped by to visit. It seems like I get a present everytime I see a new face. Sometimes I even get gifts from people that my mommy and daddy really don't even know! My mommy says we are blessed. I just know that I have a kick bottom wardrobe. Everyone takes my picture everywhere I go. I've heard stories about the paparazzi but these people seem really nice. Sometimes I smile for them... sometimes I pout. It depends on what's in my diaper at the time. :)

Christmas was fun... more clothes and some toys. I got 2 cool gyms to work out in... I want to be just like my dad and be big and strong. I also got lots of books. Some of them make sounds. My mommy and daddy read to me every night in my tripped out room. I love to lay there and look at all the colors and shapes. My favorite time is when my mommy turns on the disco ball and sings and dances around the room with me.

I'm getting bigger and stronger every day. I'm drinking 4 ounces every 3-4 hours. I'm sleeping through the night for about 5-6 hours. One night I slept for 7 hours. My mommy says she still doesn't sleep that well because she's always checking on me. My daddy rigged up a video monitor so every night I'm the star of my own TV show...."Aiden Curry in the Sleepsack Snooze". Sometimes I scream really loud just to see how many seconds it takes for mommy to get to the room.... she's always there in under 10.

So life is good. I can't complain. My parents say I've come a long way but I'm not sure what that means... I don't think I've ever lived anywhere else. I love mommy and daddy and all my grandparents. My 2 aunts are cool and Uncle Rob is warm and cuddly too. I guess I am blessed. Even my brother Denver loves me..... he licks my face every morning.

Well I'll talk to you later! Gotta go! It's bottle time!

xo
Aiden

Happy Birthday to me!

Aiden 1 month old

I'm now one month old today and life is good! My mommy and daddy had some friends over and they all said happy birthday to me. It was so nice and I think it made my mommy and daddy happy too. My buddy Denver even gave me a birthday kiss on my head. I'm going to love playing with him when I grow up. I had a yummy birthday breakfast, lunch and dinner today too. They all kinda taste the same but I wouldn't change it for the world! My mommy is giving me more now so I'm growing big and strong. My mommy even removed my feeding tube about a week ago. And, I get all sorts of different bottles but I like the skin kind the best. :) My daddy's skin is nice but it just isn't the same.
I love all the pretty lights that mommy and daddy hung up for this thing called Christmas. Some dude named Santa is supposed to come with a bunch of stuff for me. not sure what I'm going to do with all of the stuff yet but I'll make due. Oh and you should check out my room now! It's like a disco room with pretty colors twirling all over the walls!

Also, my daddy posted some more photos of me in the album below so check them out when you get a chance! Love you all!

Aiden (AC)

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!