Happy Birthday, Aiyana!

It's hard to believe that Aiyana has been a part of our family for a whole year already.  She has grown up so fast!  In the past month she has added the words "Papa" (Grandpa), and "Nana" (Grandma) to her vocabulary and she's been trying really hard to say "ball." 

Today for her birthday she woke up and opened presents (now that she's an old pro at it after having lots of practice over the past few days) and enjoyed playing with the wrapping paper.  She had lunch with Mommy, Daddy and Ashlyn before Daddy had to leave for work.  She was unimpressed with her cupcake...I think she would have been happier if it had been chocolate cake.  Grandma and Grandpa came to take her out to dinner to her favorite restaurant, Pizza Ranch.  She rivaled Ashlyn with the amount that she ate.  Overall, she had a fun day.

Merry Christmas

We had a wonderful time celebrating Christmas together as a family this year.  The past several years Corey has had to work on Christmas Eve and Christmas Day, so for him to have both days off this year was really special.  Ashlyn enjoyed being a part of the Sunday School Christmas program at church.  Both girls enjoyed opening gifts, though it took Aiyana a while to get the hang of things.  Ashlyn was more than willing to help her out and show her how things are done.  In the end, Aiyana decided that the bubble wrap that came in some of the boxes was the best present around.

Another Month Older

Today Aiyana is 11 months old.  During this last month she has learned how to walk and is now almost up to a run.  Pretty soon she'll be chasing Ashlyn around the house.  She has also added the words "Mama," "Hi," "Wa-wa," (water) and "up" to her vocabulary.  She has decided that during some meals, baby food is unacceptable and demands to eat the same "num" as the rest of us. 

Happy Birthday, Lynnea

I admit, I never really know what to write on Lynnea's birthday, and today is no different.  She would have turned four today.  It's a hard day; on one hand, I really want to celebrate what a wonderful day it was when she was born, and how incredibly happy I am that she was a part of my life even if it was for such a short time, but on the other hand, it's impossible not to be really, really sad that today I'm not having a birthday party watching her open gifts and blow out candles on the cupcakes that we baked for her.  There's nothing that can really make this day any easier, but it is nice to remember some of the favorite moments that we had with her.  So, here's my Lynnea memory for today:

This morning when I was rocking Aiyana in the rocking chair before her morning nap, she kept leaning forward and then flinging herself backward against me.  This reminded me of when Lynnea used to do this.  We called it "Kaboom" and, I admit that it's not really one of my favorite baby games, but Lynnea thought it was a lot of fun.  I remember specifically the time after one of her heart caths when she thought it was an appropriate time to play "Kaboom."  See, after a heart cath, it is important to keep still for a few hours in order to prevent bleeding.  For Lynnea (and all babies/small children) this meant spending a few hours in the hospital crib strapped to a board to keep her from moving her legs.  Well, Lynnea hated this, and after this particular heart cath, the doctors and nurses thought that she might be happier if she were snuggling in my lap instead of strapped to the board.  I agreed that holding her might make her happier.  It did.  But it didn't keep her still.  As soon as she got out of the crib and into my arms in the rocking chair, she decided that nothing would be more fun than playing "Kaboom."  I ignored her the first few times she flung herself backward hoping that if I ignored her she would stop.  She didn't stop.  Since I didn't think this was what the doctors and nurses had in mind when the let her out of bed, I told her that she had to stop playing "Kaboom."  She reluctantly stopped and immediately found other ways to occupy herself: she set diligently to work trying to remove all of the medical equipment that was attached to her.  She removed her pulse oximeter several times (I kept putting it back on her toe, and she kept pulling it off as fast as I could put it back on), she pulled her nasal cannula out of her nose, she tried to remove her IVs and tugged desperately at the Velcro on the blood pressure cuff.  And, of course, she just laughed at me when I told her "No, no."

That's one of my favorite Lynnea memories because, despite the situation, she really was just being a typical naughty toddler.  I loved seeing her do "normal" things like that even though there was nothing normal about what was going on in her life. 

Aiyana is 10 Months Old!

Aiyana is looking and acting less like a baby and more like a toddler every day.  She easily walks around furniture and has no problem going from one piece of furniture to the next.  She also stands on her own for a little while.  She has a vocabulary of three words: "Da-da" "Num-num" and "Nigh-night."  She is especially fond of "Num-num!"  While she still eats baby food, she has decided that table foods are wonderful and enjoys eating whatever the rest of us are having whenever we are willing to share with her.  Fortunately, she has a big sister who is willing to share snacks with her whenever she asks. 

We Have a 9 Month Old

Aiyana is in a big hurry to grow up!  She can walk around furniture and she puts every little crumb she finds in her mouth.  She has eight teeth now -- the better to bite with!  We've had many conversations about whether or not it is OK to chew on socks while people are wearing them...we're not always in agreement on this one.  She has outgrown her sleep sacks, so now she gets to wear big girl pajamas.  She's not really convinced that this is an improvement, and makes it challenging to get her dressed after her nightly bath. 

The First Day of Kindergarten

Today was Ashlyn's first day of Kindergarten.  She was excited to go and had a really great day.  She made some new friends, played outside for TWO recesses (that was very exciting!), ate lunch that she brought from home, and listened when the teacher read stories.  She told me that she is really glad that she gets to go back tomorrow. 

8 Months Old Already!

Today Aiyana is 8 months old.  She's a busy girl these days.  She finally mastered crawling and has now decided that she desperately wants to walk.  She pulls herself up to standing in her crib and at the baby gate on the stairs.  She also has five teeth now and enjoys eating Cookie Crisp cereal and cut up bananas. 

Aiyana is 7 Months Old

Another month has flown by and Aiyana is now seven months old.  She now has three teeth and is addicted to Gerber Graduate puffs.  Her main goal in life is still to learn to crawl.  She is very close to crawling, but can't quite seem to coordinate her efforts to get herself to move forward. 

A Trip to Como

On Tuesday we spent some time at Como Zoo and Como Town thanks to HopeKids.  It was very warm outside, but both Ashlyn and Aiyana seemed to have fun anyway.  Ashlyn liked seeing the animals, but she liked the rides even better.  Aiyana loved watching all of the people and seeing all kinds of new things.  We had a picnic dinner before going home for the evening.

Two Years...

We sat around the table at lunch time.  Ashlyn happily chattered about the butterfly mask that she had made at Aunt Megan's house yesterday, and Aiyana drank water from her favorite sippy cup.  Most days, moments like this make me smile; I look at my two beautiful, healthy little girls and I know that I have a lot to be thankful for.  Most days.  And then there are days like today.  Today watching Aiyana drink from her favorite sippy cup, the small one with a pink top, it reminded me of how much Lynnea loved that cup.  It was Lynnea's cup.  Her favorite cup.  The one that we didn't dare leave the house without.  The one that she picked out herself at the dollar store one day with her favorite homecare nurse. 

I know that I should be happy with the family that I have, and I am, really, but sometimes it is hard not to think about that family that I should have had -- the family that had three amazing little girls that could have been the best of friends.  It still feels like there is a giant hole in the middle of my family, a hole where Lynnea is supposed to be; a hole that can't be filled.  It often makes me very sad that Aiyana will never have the opportunity to get to know her big sister, Lynnea.  It also make me sad to see how much of Lynnea's life Ashlyn has already forgotten; I am grateful that she has found a way to move on and seems to be a pretty well-adjusted five-year-old, but it is sad to watch her forget her little sister -- if this is how much she has forgotten on the second anniversary of Lynnea's death, how much more will she have forgotten by next year? Or five years from now?  Ten years?

Fortunately, even on days like today, there is still a great deal of comfort in knowing that Lynnea has no more owies in heaven.

Another Month...

Another month has flown by already.  Aiyana is six months old as of today.  She is growing up so fast!  She has now discovered that she can get where she wants to go by rolling over and over and over; of course, she hasn't given up on her dream of crawling (actually, deep down, I think she just wants to get up and run around like she sees Ashlyn doing all the time, but I'd like her to stay on the floor for a little bit longer...).  She tries so hard to crawl; she just can't quite figure out how to get her knees up under her and make herself go forward (and, there's nothing more frustrating than trying to move forward only to find yourself moving backwards, away from that toy/sock/something of Ashlyn's/etc. that you were trying so hard to get).  One of these days she'll figure it out.  She continues to love every flavor of baby food we offer her, and she now has two teeth (bottom front) to bite with (she thinks it's funny to bite you if you stick your fingers in her mouth, which, I suppose, is only fair). 

Ashlyn is also getting more and more grown up every day.  Last week she lost her first tooth.  She thought that was great.  She has another one that is wiggling and will probably go soon if she keeps pushing on it. 

Ashlyn's Garden

Last week, Ashlyn planted a garden in the backyard with some help from Grandma and Grandpa.  She planted Lettuce, Marigolds, Carrots, Asparagus Beans, White Beans, and Coleus.  Everyday she goes out and checks her garden to see what's growing.  Yesterday she was very excited that lots of little lettuce was starting to come up and one of her marigolds had come up. 

Ashlyn's garden last week right after planting it.

Ashlyn's garden today, 1 week after planting.

New Experiences for Aiyana

Aiyana has been a busy girl the past couple of weeks.  She has tried a few exciting new things.  She is now old enough for solid foods, so we started feeding her baby food.  Rice cereal wasn't great the first time, but she has decided that it is OK.  She also enjoys pears and carrots.  Next we'll try peas.

One of the nice days that we had recently she went outside to play with Ashlyn.  Aiyana enjoyed swinging in the baby swing.

She also rolls over all the time now.  Of course, she's only mastered going from her back to her tummy, so once she's on her tummy she's stuck.  Hopefully she'll learn how to roll back sometime soon. 

Ashlyn's Belated Birthday Party

Yesterday Ashlyn finally had her birthday party (we had originally planned on having it the weekend after her birthday but had to cancel so that we could go to Benjamin's funeral).  She enjoyed helping make the butterfly snacks and had fun playing with her friends and family at the party.  Thank you to everyone who helped us celebrate her birthday!

Four Months Old

Aiyana is now four months old.  If you ask her, she'll tell you that she's all grown up now.  She is quickly outgrowing her 3-6 month clothes.  She smiles and laughs all the time now, and she rolled over twice this week (from her back to her tummy). 

The Joy of Easter

Last night Ashlyn and I colored Easter eggs.  It was fun to watch her get excited about coloring them, and I didn't mind coloring a few as well, but it wasn't nearly as much fun as it was when I was a child. Today I watched her open her Easter basket filled with candy and toys, and I remembered what fun it was to get an Easter basket when I was a child.  The more I thought about it, the more I realized that, even though those things were lots of fun when I was younger, I don't really miss them now.  I have outgrown the fun of Easter.

It's a good thing the "fun" of Easter isn't what's really important.  Even though I am too old for the fun of Easter, I am certainly not too old for the joy of Easter.  The joy of Easter doesn't come from colored eggs, baskets full of toys, or the latest flavors of jelly beans.  The joy of Easter comes from the reassurance that I will get to spend eternity in heaven because Jesus suffered on the cross, died, and rose again to provide me with forgiveness for my sins and eternal life in heaven. 

Busy Week

This has been a busy week for us.  First, both of my girls grew up; Aiyana is now three months old and Ashlyn is a five year old.  Ashlyn had a fun birthday -- we took her to Chucky Cheese's for lunch and then made her favorite taco salad at home for dinner.  She enjoyed her birthday presents and had a great day overall. 

On Thursday we left to take a trip to Iowa.  I wish that Aiyana's first road trip were for a real vacation rather than going to a funeral, but this is just how things are.  My sister's son Benjamin passed away on Monday evening.  He was only 26 days old -- he had been born early (27 weeks) and his lungs were simply too underdeveloped for him to survive.  We attended his memorial service on Friday and will attend his funeral on Monday.  The trip has been tiring (both physically and emotionally), but the girls have been handling it OK.  Aiyana is a good little traveler, but she gets a little uptight if you keep her out past her bedtime.

The Last "Break Even" Day

Lynnea spent the majority of the first few months of her life in the hospital.  During that time, we were often sent home from the hospital only to return a few days later because Lynnea was not healthy enough to handle living at home.  During one of those early stays, a nurse assured me that eventually Lynnea would be able to spend more time at home than in the hospital.  It was then that I started to keep track of how many days Lynnea was in the hospital and how many days she spent at home, always looking forward to the "break even" day when the number of days at home equaled the number of days in the hospital.

At the time, I really thought that there would only be one "break even" day -- that once she managed to have more days at home than in the hospital, that would be how things would always stay.  Of course, with Lynnea, that's not how things were; the next time she had a "break even" day it was when she was in the hospital with no discharge date in sight, which meant that she was again on her way to spending more of her life in the hospital than at home.  The doctors and nurses at the hospital who knew me well knew that I kept track of these things, and I would often point out during rounds when it was a "break even" day in order to remind everyone how badly I wanted to take her home.  Throughout her life she ended up having several "break even" days; if they happened when she was at home it was a day to celebrate, if they happened when she was in the hospital it was often a day of discouragement. 

Today is "break even" day.  It has been 612 days since Lynnea died, so today the number of days that she spent on earth equal the number of days she has spent in heaven.  This is the last time she will ever have a "break even" day.  Happy "break even" day, Lynnea.

Two Months Old

Aiyana is now two months old (as of Monday, actually...I'm just a little slow at getting this posted).  She had her well-baby check-up and she is healthy and growing nicely.  She smiles all the time now and once in a while she almost laughs.  Yesterday she and Ashlyn discovered the fun of old video games.  Here's a picture of the two of them playing Mario Kart 64 (OK, so Ashlyn is playing and Aiyana is intently watching...she's not big enough to hold the controller yet). 

Remembering Heart Surgery #6

I know that it is not uncommon for people who have lost a loved one to have a tough time around birthdays and the anniversaries of their deaths.  This is true for me around Lynnea's birthday, and the 5th of July, but those days aren't the only ones that are hard.  In fact, in some ways, the anniversaries of the days she had surgery (especially heart surgeries #2, 3, 4, and 6) and other days that she nearly died (there are too many of those instances to count, but there are a few that stand out in my mind more than others) are even harder.  The day that she died is hard to think about, but when I woke up on July 5, 2010, I knew what the day would bring; there was no fear that day -- I wasn't terrified that I might lose my baby that day because I already knew that I would -- there wasn't the same worry and tension that earlier moments, like surgery days, had brought because I had already accepted the fact that her death was inevitable, and deep down, I knew that she had suffered enough and, really, for her, this was for the best.

But, like I said, surgery days were different.  Two years ago today, Lynnea had her sixth heart surgery.  She was 15 months old.  She was old enough to know what was going on.  When we woke her up at 3am that morning and her nurse and I put her in the van (Corey had to work; since he was still a new employee, he didn't have the protection of FMLA and since we couldn't afford to have him lose another job due to excessive absences, he went to work that morning and came to the hospital in the afternoon when he had finished) Lynnea knew that the odds of this being a trip to Grandma's house were slim.  The roads were icy and it took longer than usual to get to the hospital.  When we pulled into the hospital parking ramp, she began to whine.  As we walked through the long tunnel from the parking ramp to the main hospital building, she gave us both a worried cry as we walked past the turn off for the clinic building.  She knew this meant she was going to stay.  When we got to the pre-op waiting area, she looked at me with teary eyes and desperately lifted her hands and signed, "All done!  All done!" and pointed towards the door to leave.  I told her that we couldn't be "all done" yet.

We spent a couple of hours in the little pre-op cubicle.  Lynnea screamed at every medical professional that walked past the curtain.  She gave hugs to Ashlyn when Ashlyn showed up with Grandma and Grandpa.  When the surgeon came with the consent form, he barely spoke to her (he was one of her favorite people at the hospital -- one of the few medical professionals that could enter the pre-op cubicle without her screaming) and I knew that he was worried about how this surgery would go.  Lynnea's track record in the OR had never exactly been good, so he, like the rest of us, was dreading this day.

At 7:30am she was taken to the OR.  We all went for breakfast in the hospital cafeteria.  I had biscuits and gravy, like always.  Then we sat in the OR waiting room and we waited.  At 9:03am we were told that they had started working on her at 8:56am.  At 10:30am we were told "She's on pump."  At noon we learned: "She's doing OK.  things are going fine."  At 1:30 an OR nurse informed me over the phone, "We're back on pump.  This is our third time on pump.  We're tried to come off twice now and were unsuccessful, so we're back on.  We're going to try one more time, but if it doesn't work, we're probably going to end up on ECMO.  Steve will be out to speak with you shortly."  I felt like saying, "No, don't send Steve out to give me the ECMO talk; I've already heard it.  She's been on ECMO before.  I already know what this means and I don't want to sit through the talk again."  But I didn't say that, instead I politely thanked the nurse for the update and sat back down in my chair and waited for Steve.

Steve came out to the waiting room and gave me the abridged version of the ECMO talk and asked if I had any questions.  I told him I didn't.  He assured me that the surgeon would go over everything that had happened after they were finished with Lynnea in the OR.  By this time, Corey had arrived.  We sat and waited some more.  At 6:30pm the surgeon came out to talk to us.  He summoned us back to the private conference room as he had done after each of her other surgeries.  As we walked to the conference room he turned and said to us, "You know, I've gotta tell you guys, your daughter tires me out like no other.  You have no idea.  She always gives me one hell of a time."  In the conference room he gave us the run-down of how things had gone in the OR: the short of it was that she bled a lot (and continued to bleed) and that she ended up on ECMO because her lungs couldn't handle the increased blood flow from the B-T shunt he had placed.  After he explained how things had gone I said to him, "I'm just happy that ECMO was the worst news of the day.  We've done ECMO before.  We can handle ECMO.  Honestly, going into this surgery, my only real hope was that ECMO would be the worst news of the day; I just didn't want the news that...there was anything worse than ECMO."  He and Corey both understood exactly what I was saying, and the feeling was completely mutual.

Lynnea was moved from the OR to the PICU at 7:30pm.  She was still "oozing some" which Corey and I had learned long ago was really just a euphemism for "losing her entire blood volume on an hourly basis."  She continued to "ooze" all night long.  In the morning the surgeon did a chest wash-out to try to find a way to control the bleeding.  After he finished, her bleeding slowed so that she was only losing half of her entire blood volume every hour.  By the end of the day, he had done yet another wash-out and had finally managed to get her bleeding under control.  The next day she was taken off ECMO successfully, but her recovery continued to be filled with challenges for the next three months that she spent in the PICU before finally being sent home so that we could "have some time together as a family."

Congenital Heart Defect (CHD) Awareness Week

The words are never easy to hear, whether it is from a doctor trying to gently break the news at a 20 week ultrasound, or in the delivery room shortly after birth, or in a chaotic emergency room days or weeks later..."We think there is something wrong with your baby's heart."  Those words change everything.  Hopes and dreams go crashing to the floor; thoughts of the future come to a screeching halt, and the fear creeps in -- the fear that you don't want to admit aloud...the fear that you might outlive your own child.

Corey and I first heard those words in the E.R. when Lynnea was seven days old.  We knew throughout her life that there was a very real chance that we would outlive her.  I remember the first time we spoke about this to each other.  We were driving back to the hospital to be with her after my six week postpartum check up.  We desperately hoped that this fear would never become reality, but we couldn't ignore the fact that her heart defect meant that there was a very real chance that it would.

That's what comes along with the words, "We think there is something wrong with your baby's heart."  One out of every hundred babies is born with a congenital heart defect.  This means that in the U.S. approximately 40,000 sets of parents have to hear those words, and 4,000 of those families will never get to have a birthday party for their babies.  Congenital heart defects are the most common type of birth defect worldwide, and the leading cause of defect-related infant deaths.   Sometimes these defects are diagnosed prenatally, sometimes they are missed.  Some require one open heart surgery; some require several; some require only close monitoring by a cardiologist.  All of them are very scary for the parents.

February 7-14 is CHD Awareness Week.  Awareness brings funding (nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for Congenital Heart Defects), which is an important part of finding treatments for these heart conditions, but awareness isn't just about raising money.  It is also a way of increasing support for families that are faced with devastating news and challenging situations.

Awareness is also about detecting and diagnosing congenital heart defects earlier, rather than later.  When babies are born, there is a whole panel of things that make up standard newborn screening -- their hearing is checked, a heel-prick is done to check for PKU, etc.  Some of these tests, like the hearing test, are non-invasive and painless for the baby, while others, like the heel-prick hurt.  Screening for heart defects can be done with a simple non-invasive test (pulse oximetry) that causes no harm or pain to the baby.  Currently, this is not standard practice at every hospital in the U.S.  There is work being done on the governmental level to make this screening a standard part of newborn care, but changing policies takes time.  For us, Lynnea's defect was not diagnosed prenatally, or in the hospital after birth; in fact, we were sent home with her believing that we had a perfectly healthy newborn.  If I had known about pulse oximetry at the time, I would have asked for it, and her condition would have been diagnosed much sooner, saving us from the emotional mayhem of that night in the emergency room.  This is why awareness is so important.  Awareness can save lives.

One Month Old

Aiyana is now one month old.  This past month has flown by and it is hard to believe that she has been with us for this long already.  We are still waiting for her to give us that first "real" smile, but I have a feeling we won't have to wait too much longer.  Ashlyn continues to be a super-star helper big sister.  She's getting the hang of feeding Aiyana with a bottle without letting Aiyana swallow too much air and without squishing Aiyana's nose with the bottle (who knew that feeding a baby was really harder than it looks?).  We are all happy to have Aiyana in our lives.

Celebrating Aiyana's Baptism

After experiencing everything that we went through with Lynnea, especially her baptism in the emergency room when she was seven days old, we decided not to wait very long to have Aiyana baptized. We had a private baptism for her at church on Friday, December 30, when she was three days old.  Last Sunday we celebrated her baptism by having it publicly recognized during the church service, and we named her sponsors at that time. 

Welcome, Aiyana Faith Callison

Aiyana at the hospital.

Ashlyn helps feed Aiyana

Already one week old!

Ashlyn's picture of her new sister

Ashlyn gives Aiyana kisses

Ashlyn's picture of Daddy and Aiyana

On Tuesday, December 27, 2011, at 4:38pm we welcomed Aiyana Faith into our family.  She was 6lbs. 14oz. and 19.5in.  Most importantly, so far she seems completely healthy.  She is already 8 days old...this past week has flown by and it seems as though she has always been a part of our family.  I admit that I've practically been holding my breath since she was born in fear that something was wrong with her -- when Lynnea was born we had her at home with us for seven days before it became obvious that she was very, very sick, and the fear that we could be blindsided like that again is still something that lingers on.  But, like I said, so far Aiyana seems to be completely healthy; the only issue we've run into is that she seems to be lactose intolerant, so we've decided to bottle-feed this time around.

Ashlyn was very excited when she heard the news that her little sister had arrived, and has been an amazing big sister.  She loves to help out in any way that she can (throwing away diapers, getting blankets, picking out clothing, feeding, and burping...).  She also enjoys taking lots and lots of pictures of her new baby sister with the camera that she got for Christmas.