The Callison Chronicle

One Month Old

2012-01-27T21:00:00.000-06:00

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

2012-01-19T20:47:00.000-06:00

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

2012-01-04T19:58:00.000-06:00

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.

A Trip to the Children's Museum

2011-12-17T20:55:00.000-06:00

Last week we went to the Minnesota Children's Museum for a HopeKids event. Ashlyn was very excited about this -- she remembers when we went two years ago with Lynnea and has been asking to go there again ever since (we didn't make it last year because Corey had to work). The first thing she wanted to do when we arrived was go and play in the bubbles, just like she had with Lynnea. After that she had a fun time exploring most of the other exhibits in the museum. It was fun to watch her get so excited, and we had a great evening out as a family.

Things Ashlyn is Thankful For...

2011-11-24T21:01:00.000-06:00

Over the past week Ashlyn and I have had several conversations about things that she is thankful for. Here is the list of things that she came up with:
She is thankful for her swimming pool, her pink car, Daddy -- especially when he helps her drive her pink car, her backyard, trees -- because they give her shade and help keep the air clean, Mommy, and Baby.

Lynnea's Birthday

2011-10-31T21:55:00.000-05:00

Lynnea would have been three years old today. In order to mark this occasion, Ashlyn and I baked cupcakes, just as we did last year. I think this will be our yearly tradition.

I thought that Lynnea's birthday this year would be easier than it was last year when her death was still so fresh in our minds, but this year wasn't really any easier. This year the reality hit that every year her birthday will come, and every year she will not be here to celebrate it with us.

We spent time today remembering her and some of the best moments that we had here with her. While remembering her, of course, it is always impossible to only remember the best times; all of the suffering that she went through cannot be forgotten. The comfort still comes from knowing that, this year for her birthday (and everyday), she doesn't have to hurt or suffer at all because she is in heaven where there are no more tears and no more owies. I am happy that she gets to spend her birthdays in such a wonderful place, even though I miss her so much.

Fetal Echo

2011-09-16T18:44:00.000-05:00

Today we went down to the U of M for a fetal echocardiogram. We brought Ashlyn with us because she really wanted to see the new hospital. One of our favorite echo techs did the scan for us. The baby's heart looks perfect (and she has a beautiful aortic arch). Ashlyn was very well behaved during the scan, and seemed to like getting to see the baby's heart beating. Ashlyn also enjoyed playing in the waiting area and in the hospital lobby for a while.

First Day of Preschool

2011-09-07T19:36:00.000-05:00

Today Ashlyn started preschool. She made a necklace out of Froot Loops, and said that there were lots of fun toys to play with. She is looking forward to going back again next week.

A Day at the State Fair

2011-09-04T23:18:00.000-05:00

On Monday, we spent the day at the State Fair. The weather was beautiful, and it wasn't overly crowded, so it was a great day to go. We didn't try any new foods this year, but instead stuck to ones that we've liked in the past. This year Ashlyn enjoyed the deep fried alligator much more than she did last year (she ate nearly the whole batch without saving much for me or Corey). She had fun going down the giant slide with Daddy, and riding the Merry-Go-Round with Grandpa. She was a good little farm worker and appreciated her hard earned apple. At the end of our day, we stopped to watch a show on one of the free stages, and Ashlyn was very excited when all of the kids in the audience were invited up on stage to dance at the end of the show.

Level 2 Ultrasound

2011-08-16T21:00:00.001-05:00

Today I went in for the level 2 ultrasound of the baby. Unlike in my past pregnancies, this time gender wasn't the thing that I was most anxious to find out about, but rather the cardiac anatomy. When I was pregnant with Ashlyn and Lynnea, we would often comment about whether we were going to have a "pink baby, or a blue baby," with the reference always being about the gender. After having Lynnea, who was literally a blue baby because of the way her cardiac anatomy functioned, this time the speculation had a different meaning. Fortunately, the baby's heart appears to have four chambers, all the correct size, and there were no cardiac defects that could be detected. Everything else looked good too. Of course, the baby was kind of a stinker during the scan -- when it was time to look at the heart, it moved so that it was hard to get a good look at the left side (eventually it moved back into a good position); when it was time to look at its face, it kept putting its hand over it; and, when we wanted to find out its gender, it kept its legs crossed (though we did also manage to eventually sneak a peek). So, this time, when it comes to color, the baby is pink in the cardiac sense, meaning that its blood all flows the way that it should, and it is also pink in terms of gender. Yes, Ashlyn is pretty excited to have another little sister. In a few weeks we'll go in for a fetal echocardiogram just to make sure that the baby's heart really is in good shape (because this gives an even better look at all of the structures of the heart than the level 2 ultrasound can), but at this point the odds of there being anything seriously wrong with it are very low.

Something Beautiful

2011-07-05T20:52:00.000-05:00

"I wanna start it over, I wanna start again. I want a new beginning, one without an end..."

Those are the opening lines to the song "Something Beautiful" by Newsboys, the first song in the photo montage that I put together for Lynnea's funeral last year (it's posted on here too if you follow the link marked "Lynnea's Story"). One year ago today, Lynnea received her new beginning, one without an end. I will never forget the feeling of holding her in my arms rocking her that last time, knowing that it was time for her to go. She opened her eyes for a moment to look at me, for one final goodbye, before she was taken from my arms into Jesus' arms in heaven.

Today, it is hard not to think about all of the suffering that she endured during her short life, and how truly ready she was to not hurt anymore. She was tired, she had suffered so much, and it was time for her to go. She was and always will be something beautiful in my life, and I am glad that now, instead of experiencing all of the pain that life on earth brought for her, she is in heaven, living a perfect life that never ends.

Conversations Then and Now

2011-06-30T23:43:00.000-05:00

One year ago today, Corey and I sat down in Lynnea's hospital room with three of her doctors and had one of the most difficult discussions that any parents could ever have to have regarding our child. Lynnea had just proven to everyone that she could no longer handle the work of breathing on her own. EEG and MRI results had shown that she had extensive brain damage after her episode of cardiac arrest. There just weren't any options left for her. So, the five of us had a lengthy conversation about when and how Lynnea would die.

Today we went to the U of M to meet with Dr. St. Louis to go over Lynnea's autopsy results. Really, there was nothing particularly insightful about the findings: the loss of her left pulmonary veins was the primary reason that nothing more could be done for her. In some ways, this conversation shared some commonalities with the conversation we had a year ago; in both cases, at the center of things was Lynnea's death. It was a little strange to go to a clinic visit for Lynnea without having her along; it clearly felt like something was missing as we sat in the examining room waiting for the doctor to come in. It was also a little hard to think about the fact that this really was the very last appointment that we will ever go to regarding Lynnea. Fortunately, this year's conversation did not have the same heavy tone that last year's did; in fact, our time spent chit-chatting with Dr. St. Louis was quite pleasant, and it was good to get to have this conversation with someone that had played such an important role in Lynnea's life.

Vacation Bible School

2011-06-24T22:07:00.000-05:00

This week Ashlyn went to Vacation Bible School. She enjoyed learning Bible stories (she especially liked learning about baby Moses), making crafts, eating snacks, singing songs, and playing with her friends. Although she enjoyed the songs that she learned this week, in the middle of the week she complained about the fact that "didn't like singing because she didn't know the words, and they wouldn't give her a song sheet with the words on it like they gave to the bigger kids." (4-year-olds are not typically given song sheets when they sing because most of them don't know how to read.) I told her that she could learn the words by listening to the other kids sing them, and eventually she decided that this would do, but she still thought it was unfair that she didn't get to read the words herself.

A Sneak Peek

2011-06-15T21:05:00.000-05:00

Ashlyn has had some important news that she has been sharing with people over the past few weeks. For those of you that haven't had the chance to talk to her lately, I've decided that I would share her news for her on here. This is the announcement that she has been making to just about anyone who will listen: "We're going to get a new baby at our house around Christmas time." She is very excited about this, and is happy that she will get to be a big sister again.

Officially, the due date is January 8, 2012, but since my children don't seem to like to wait around until their due dates to be born (Ashlyn was born at 39 weeks, Lynnea at 38 weeks), I figured telling Ashlyn that the baby should be here "around Christmas" was a pretty safe bet. On Monday I went in for an early ultrasound, mostly just to check my dates and to make sure everything is OK. The doctors are treating this pregnancy as slightly high risk because of our history of having a baby with a heart defect. Recent research has shown that the specific type of heart defect that Lynnea had appears to have a strong genetic component to it rather than being caused by environmental factors. So, this baby is at a significantly higher risk than the general population of also having some sort of heart defect (though not necessarily the exact same defect as Lynnea, and not necessarily anything nearly as severe as Lynnea). In August we will have a level 2 ultrasound and a fetal echocardiogram to check for any cardiac abnormalities. Monday's ultrasound showed that everything seems to be going fine so far, but that my due date might be a bit off. The ultrasound showed a due date of January 3 rather than January 8. We haven't talked to the doctor yet to find out if they want to officially change the due date or not (typically, if the ultrasound due date is more than five days different than the calculated due date, then the ultrasound due date is the one that the doctors will use...since our dates are exactly five days different, it's impossible to know which date the doctor will choose to use).

On Monday I also went in to have an MRI done. This was not pregnancy related (in fact, the only reason I hadn't had one done sooner is because I am pregnant and it is unknown whether or not an MRI causes any harm to the fetus). I have been having some vision problems since the end of March; specifically, I suddenly lost a significant amount of vision in my left eye at that time. My vision hasn't improved at all since then (in fact, during my last exam it had gotten a little worse, though this could be due to the pregnancy because vision changes are fairly common during pregnancy), and after running several tests, the neuro-ophthalmologist determined that the problem is not with my macula or retina, which left the only other probable source of the problem being with my optic nerve. The good news is that the MRI did not show any obvious signs of a brain tumor (yes, that was one thing that they were looking for), but it did show that there is some inflammation of my optic nerve, and that's what is causing my vision loss. This condition is known as Optic Neuritis. Beyond that, there was not a lot that they could tell from the MRI because the MRI had to be done without the use of any contrast dye (because contrast dye is not OK for Baby). There is a chance that my vision will improve over time (though the fact that it hasn't improved at all yet isn't really a good sign). Although sometimes Optic Neuritis occurs without any specific cause that can be found, it is often an early sign of Multiple Sclerosis. Without doing an MRI with contrast dye, it is impossible to determine how likely it is that MS is or is not the cause in my case. I will have bloodwork done to rule out a few other possibilities like Lupus and Lyme Disease, though I don't have any other symptoms of either of those, so it is pretty unlikely that they are the cause.

Eleven Months

2011-06-05T19:36:00.000-05:00

Lynnea has been gone for eleven months, and we all still have moments when we miss her very much.

Last weekend Ashlyn found a dead bird outside in our backyard. She ran in the house in tears, and sat in my lap crying for nearly an hour. As I held her, she told me about all of the things that the bird would never do again: it would never sing again, it would never fly again, it would never eat or breathe again, etc. Eventually she calmed down and went outside again. I told her that we could bury the bird after Daddy came home from work. I watched her as she went back outside. She examined the bird on the ground, and then she carefully picked it up and carried it up to her treehouse. Part of me was appalled when I saw this, but chose not to stop her. When she came back inside I asked her about this. She informed me that she had taken the bird to her treehouse so that it wouldn't be alone until we buried it. After we buried the bird, she didn't mention it again, and I thought that was the end of it.

Later in the week, while I was tucking her into bed one night, she asked me about Lynnea. She asked me about when Lynnea died. I explained to her that I held Lynnea in my arms rocking her in the rocking chair when she died. Ashlyn asked if she fell asleep while I was rocking her. I explained to her that it was kind of like Lynnea went to sleep, except that she stopped breathing and wasn't alive anymore. Ashlyn replied in an accusing tone, "Did you try to wake her up? How did you know she was really dead? Are you sure she wasn't just sleeping?" I told her that it was different than if she had just been sleeping, and that I was sure she was really dead. She sighed and then asked what I did with her after she died. So, I told her that I held her for a while longer in the rocking chair, and then I put her back in her hospital crib. Ashlyn was appalled at this and angrily said to me, "Mommy, why did you put her back in her crib?! She wasn't sleeping, she was dead, you shouldn't have put her there! You should have kept holding her. You should have stayed with her. You shouldn't have left her there at the hospital all by herself." And then she cried. I let her cry knowing that there was no way to explain to her in a way that she would understand why I had to leave Lynnea's body in the hospital. When she calmed down, she told me that she really misses Lynnea. I reminded her that Lynnea is in heaven and that she is very happy there. Ashlyn nodded and said, "Yeah, I know." When she said her bedtime prayers, she wanted to say a special prayer beyond our usual "Now I Lay Me." This was her prayer: "Dear Jesus, Thank you for taking care of my little sister Lynnea in heaven for me. Please give her lots of hugs and play with her because she will like that. I want to go to heaven too, but please let me grow up to be really old first. I love you. Amen."

Happy Anniversary

2011-05-14T23:21:00.000-05:00

Ten Months

2011-05-05T21:44:00.000-05:00

We have spent ten months here now without Lynnea. On Tuesday Corey and I had an unexpected opportunity to tour the new U of M Amplatz Children's Hospital. The move in to the new hospital took place last Saturday. Throughout Lynnea's entire life, we had been hearing about this hospital, watching it be built, anxiously awaiting its opening. Though it is a little disappointing that Lynnea isn't here to see it, and to experience how much more patient/family friendly it is compared to the old hospital, it was nice to finally get a chance to see how everything turned out after waiting for it for so long. I think Lynnea would have liked it (I know Ashlyn would have liked it...she's pretty jealous that Mommy and Daddy went to visit without her, and now she keeps asking when we'll take her to go see it), and I'm glad that we took the opportunity to tour it.

I Know that My Redeemer Lives

2011-04-24T21:18:00.000-05:00

"For I know that my Redeemer lives, and at the last he will stand upon the earth. And after my skin has been thus destroyed, yet in my flesh I shall see God, whom I shall see for myself, and my eyes shall behold, and not another." Job 19: 25-27

These verses are the basis for the common Easter hymn, "I Know That My Redeemer Lives." We sing the words as a proclamation of Jesus' resurrection, His atonement for our sins, and the assurance that we have of life everlasting with Him. I find it intriguing that these verses are not found in the New Testament spoken by Mary or one of the disciples after finding the empty tomb on Easter morning, or after seeing Christ for themselves when He appeared to them, but instead they are found in the Old Testament, spoken by Job to his friends after he has suffered the loss of his wealth, his children, and his own health. He speaks these words with confidence while enduring tremendous adversity in order to paint a clear picture that he has of his hope in salvation and everlasting life. His testimony, especially under these circumstances, is an excellent reminder of just how much hope and comfort our Redeemer brings. Job is able to look beyond his time on earth, and his earthly suffering to see what awaits him and all believers when his physical life has ended.

Job's proclamation brings great comfort as I think about Lynnea and all of the suffering that she endured during her short time here with us on earth, and all of the glory that she is now experiencing in heaven because of Christ's death and resurrection. It is immensely comforting to know that, no matter how much suffering this life brings, ultimately there is not only an end to that suffering, but unimaginable glory and joy waiting for us. He is risen. He is risen indeed. Hallelujah.

Pictures of Ashlyn

2011-04-19T22:42:00.000-05:00

Today we went over to Megan's apartment for a little photo shoot with Ashlyn. Here are just a few of the pictures Megan took today (completely unedited here -- I'll post more after she gets a chance to play with them in PhotoShop). This morning before heading over there, I told Ashlyn that auntie Megan wanted to take some pictures of her with her new camera. Ashlyn's response was, "Yes, I'm going to have my pictures taken because I am the most beautiful girl in the world." And oh so humble too...

It Takes a Village...

2011-04-13T21:26:00.000-05:00

I have a favor to ask all of you that are on Facebook. Please go to the following link (it's a link to a note that I wrote) It Takes a Village... and leave a comment on the note. The parenting website MomSquawk.com is having a contest to help them choose a few new bloggers to write for them on a consistent basis, which is something I would enjoy doing. They requested that potential bloggers write a short piece for on their Facebook page, and the winner will be determined based on the number of comments that each note receives. So, please help me start a discussion on my note. Thank you everyone!

Nine Months

2011-04-05T23:21:00.000-05:00

It has been nine months since we said good-bye to Lynnea. It was hard today sitting in the examining room with the pediatrician for Ashlyn's 4-year-old well-child check-up. This was our first time back there since Lynnea died. Ashlyn enjoyed the check-up, though I think she also sensed that it was a little strange to be there without Lynnea (Ashlyn came along for many of Lynnea's visits), and she reminisced some about what it was like when we used to take Lynnea to see the pediatrician, as we sat in the same examining room that we were in for all of Lynnea's visits. The pediatrician teared up a little at the end of our visit as we talked a little bit about how life is now without Lynnea here.

Life keeps moving forward, but I still miss her; we all do. In order to use some of the experiences that we had with Lynnea to benefit others, I have been working on a few books to help families that are faced with having hospitalized children, or the loss of a child. I have started a publishing company called Heart of Hope Publishing and will be publishing my first book in the near future titled But I Still Miss You. It is a book for young children to help them cope with the loss of a sibling or other close relative. Other books will hopefully soon follow.

Celebrating Ashlyn's Birthday

2011-03-28T23:51:00.000-05:00

Four years ago today, at 1:04pm, Ashlyn Grace entered this world, and I held her in my arms for the first time. She was beautiful; she was perfect. She's still beautiful, and she's still perfect.
On Saturday we began her birthday celebration with a birthday party with some of her friends and family. She had a great time playing with her friends and blowing out the candles on her Hello Kitty birthday cake that her Aunt Megan was kind enough to make for her. Today we celebrated by going to McDonald's for lunch and letting her play in the play place for a while. We don't do this very often, so this was a special treat for her. This afternoon she had another birthday party with family members that couldn't make it to the party on Saturday. She requested that we have "birthday soup" so that's what we had for dinner at her party (and some hotdogs to go along with it...she ate the hotdog and only tasted the soup). We had icecream cake and she again got to blow out her candle (this was a bit of a novelty considering that the past two years her birthdays were spent at the hospital with Lynnea and we weren't allowed to light candles in the family room for her). She had a lot of fun. She received many gifts, including a cowgirl outfit (various pieces given by different people...I'm impressed at how coordinated it is) that looks adorable on her. Here are some pictures from her parties, and her in her cowgirl outfit.

When I Grow Up...

2011-03-25T13:49:00.000-05:00

Ashlyn has been very opinionated lately about what she wants to be when she grows up (which, according to her, is when she is 10 years old). For a while she wanted to be a doctor or a nurse, and then she wanted to be a firefighter and an artist. Lately, she has decided that she wants to be a Mommy and a Chef at Denny's. She is determined that being a Chef at Denny's would be wonderful because then she would get to cook scrambled eggs, and she wants to be a Mommy because then she would be in charge of her babies and they would have to follow her rules.

Interesting Grammar

2011-03-15T22:52:00.001-05:00

As Ashlyn's language development continues, I've noticed that she comes up with some interesting verb conjugations. (Leave it to me, the English major, to notice things like this...) She handles regular verbs just fine, easily using the correct verb tense in pretty much every situation, but the irregular verbs still throw her off a bit most of the time. My favorite word that she uses all the time lately is "sawn" which seems to be a form of the verb "to see." I think it is a combination between the past tense, "saw," and the past perfect tense, "have seen." She uses it in sentences all the time, sometimes as "sawn" and sometimes "have sawn." For example, "Mommy, I sawn your book before -- it was on the couch." Or, "I have sawn this episode of Word World before." Obviously, I can't resist correcting her every time with the hope that eventually she'll understand that "sawn" isn't really a word...for now, when I correct her, she usually just gives me a completely confused look and continues talking about whatever it was that she was saying before I interrupted her to try give her a lesson in grammar that she's not interested in.

8 Months

2011-03-05T22:02:00.000-06:00

Today marks eight months since Lynnea died, though my thoughts today have been on other moments. Three years ago at some point during the first week in March (I don't remember the exact date), we learned that Lynnea would enter our lives. Of course, we didn't know anything about her yet at the time -- we only knew that a baby was coming in about nine months, and that the baby would be a blessing in our lives. And, every moment with her was a blessing.

Two years ago, on March 5, 2009, Lynnea coded. I remember sitting in a rocking chair in the hallway in the PICU outside the door to Lynnea's room with Ashlyn sitting on my lap while Lynnea went into cardiac arrest, and Ashlyn proceeded to throw up all over me. As a parent, I have never felt more helpless than I did in that moment: helpless as my baby fought for her life; helpless as my toddler puked all over me.

Last year, on March 5, Lynnea was still in the PICU after having heart surgery on Feb. 8. She was still on the ventilator, still running fevers, still not doing well at all. As hard as it was to sit there and watch her suffer that day, my heart was breaking for Riley's family because they had lost their son only four days earlier, and the PICU was not the same without him. It also served as a harsh reminder that not all children get to go home from the PICU -- sometimes children die, and the reality hit me that, if it could happen to Riley, it could just as easily happen to Lynnea.

I am grateful that this year I did not spend March 5th sitting in the PICU watching my baby suffer. Yes, I wish that she were still here with me. Yes, I miss her in a way that words cannot even begin to describe. Yes, the tears still fall often when I think about how quiet my house is without her here. But there is also a tremendous amount of relief knowing that she is pain-free in heaven, and that my days of sitting by helplessly as I watch her suffer are over.

Practicing Her Nursing Skills

2011-02-27T21:54:00.000-06:00

Since Grandma Maureen broke her leg nearly two weeks ago, Ashlyn has had the opportunity to put her skills as a nurse to the test. She does a good job keeping Grandma occupied so she doesn't get too bored, and she is very gentle when she does her assessments of the broken leg. She also remembers to ask Grandma if her leg hurts and offers her "I-B-Potion" (Ibuprofen) when Grandma says that her leg hurts. Sometimes, though, she gets fed up with doing helpful little tasks like filling up Grandma's glass of water...she does it reluctantly after giving us a very frustrated sigh as though she is completely overworked.

Little Yellow Riding Hood

2011-02-22T21:56:00.000-06:00

Ashlyn has a habit of adding creative twists to the fairy tales and nursery rhymes that she knows, and this evening I think she came up with my favorite one yet. After her bath every night, I wrap her up in a towel to dry her off; our towels are off-white (though, if you ask her, she'll say they're yellow), and every night when I do this, she says to me, "Mommy, I'm Little Yellow Riding Hood, who are you?" And I reply by telling her which fairy tale or nursery rhyme character that I am and we act out an interaction between these two characters. Well, tonight she told me who I should be (sometimes she makes "suggestions"). She wanted me to be "The Giant." To clarify, I asked her which giant, and she explained that I should be the Giant from Jack and the Beanstalk. I agreed to this. Then she went on to explain, "Mommy, you're the Giant, and just so you know, you are Little Yellow Riding Hood's uncle. That makes me your niece. Tonight you are a nice Giant because Jack isn't around for you to get mad at, and I am here and I want to play. Since you are a nice Giant, and you like me because I am your favorite niece, this will be fun." So, there you have it: The Giant from Jack and the Beanstalk is actually Little Yellow Riding Hood's uncle. (I haven't determined yet if Little Yellow Riding Hood and Little Red Riding Hood are the same person, or if they are just close relatives...I'll have to ask Ashlyn about that.)

Valentine's Day

2011-02-15T22:05:00.001-06:00

Yesterday we celebrated Valentine's Day at home together as a family: a quiet dinner with Corey and Ashlyn, which included sparkling grape juice to make it "special." I know, that probably doesn't sound all that exciting, or romantic, and, I guess on the surface it wasn't. But, looking back at how I spent Valentine's Day the past two years -- in the hospital with Lynnea in rough shape (last year she was 6 days post-op and they still hadn't managed to get her chest closed yet...) -- this peaceful day together at home was special. Ashlyn was full of "I love you" statements all day long coupled with lots of spontaneous hugs. She was excited about the red stuffed animal that Corey had picked out for her, and happily gave me and Corey gifts that she had helped pick out. Overall, it was a very nice Valentine's Day.

1 in 100

2011-02-08T22:13:00.000-06:00

Throughout Lynnea's battle with hypoplastic left heart syndrome, I wrote about what she was going through, giving a glimpse into what it is like to have a child with a congenital heart defect. Along the way, I met and became friends with many other families faced with the same struggle that we were going through with Lynnea because, unfortunately, "heart babies" are all too common. With Lynnea, we were not lucky enough to have her heart defect diagnosed before she was born, or even within the first 24 hours of life when the first signs and symptoms began to show themselves, and I still struggle sometimes with the frustration of knowing that the simple act of putting an oximeter probe around her newborn foot for a few minutes would have alerted us and her doctor to the fact that something was very wrong, and possibly could have meant a better prognosis for her. There are many other parents, families, and health care providers out there that are working to make pulse oximetry part of the standard newborn screening process to help diagnose congenital heart defects early on in order to give these kids the best chance possible of survival. A family that we met in the hospital one of the times we were there with Lynnea has a website full of great information on heart defects and the importance of advocacy and awareness.
http://1in100.org/finally-ready-to-screen-for-the-most-prevalent-birth-defect/

7 Months

2011-02-05T21:48:00.000-06:00

It has been seven months since Lynnea passed away. Since February is American Heart Month, and Feb. 7-14 is Congenital Heart Defect Awareness week, I have decided to share some statistics about heart defects:

Congenital heart defects are America’s #1 birth defect. Nearly one of every 100 babies is born with a CHD (almost 1% of all children born each year!).
Congenital heart defects are the #1 cause of birth defect related deaths. 1 in 3 children who die from a birth defect have a congenital heart defect.
This year almost 40,000 babies will be born with a congenital heart defect.
This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects.
In the U.S. twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined. Yet funding for research of pediatric cancer is 5 times greater.
From 1993 to 2003 death rates for congenital heart defects have declined by 31% due to advances made through research!

Personally, I feel that "awareness" is about more than just knowing the statistical data, but that's a good place to start. Being aware of how many families are faced with the kinds of challenges and heartbreak that we went through with Lynnea is being aware of how many families need the same kind of loving support network that helped us get through the challenges that we were faced with. Keep all of the other heart families in your thoughts and prayers as each of them struggle with impossible choices, long hospital stays, and all too often saying their final goodbyes to their children.

More Pages in the Lynnea Book

2011-01-29T22:25:00.000-06:00

Ashlyn decided to color a couple more pictures for in her Lynnea Book this week. This is what she told me to write about this picture in her book: "This is a picture of me and Lynnea watching Little Einsteins together. Lynnea liked Rocket the best. We both liked the "pat, pat -- blast off!" part."

For this picture, Ashlyn told me to write: "This is Lynnea playing with her baby doll. She liked to make it rattle. She liked to give it hugs."

Ashlyn added heart stickers to both of her pictures "because hearts mean 'I love you' and Lynnea loved me." I think she has been missing her sister a lot lately; we all have.

Don't Underestimate Her

2011-01-21T21:44:00.000-06:00

I don't know if I keep setting my expectations too low, but Ashlyn keeps exceeding my expectations of her. Maybe I just don't want to admit that she is as "grown up" as she is. This week there have been several moments where she has surprised me with her abilities. All week she has been requesting to play Wii Fit Plus by herself. She has her own Mii and I've been letting her play whichever games or exercises or yoga poses that she chooses too, even though I don't expect her to be able to do many of them successfully. Well, it turns out that she's a whole lot better at many of them than I ever would have thought she would be. It has been a lot of fun to see how proud of herself she is when she is able to complete these activities. She has also been very excited about doing jigsaw puzzles this week. I keep thinking that she's going to need my help with some of them, but she easily completes the 24 piece puzzles unassisted. She completed one yesterday and asked me to come see it when she had finished; when I saw it, I told her that she was getting so grown up to be able to do puzzles all by herself. Her response was, "yeah, and I'm really smart too. That's why I can do all these puzzles by myself." Ah, I love the humility.

Moose and Muffins

2011-01-14T22:03:00.000-06:00

Last night Ashlyn and I went with Grandma and Grandpa to another HopeKids event. We went to see the play If You Give a Moose a Muffin at Stages Theater in Hopkins. It was a lot of fun. Ashlyn was on the edge of her seat loving every minute of it. Today we baked some muffins of our own, but she and I agreed that we probably shouldn't share them with any moose.

Enjoying Christmas Gifts

2011-01-12T22:57:00.000-06:00

Ashlyn has had a lot of fun playing with all of the new toys that she received as Christmas gifts. She has been busy dressing up in her new dress-up clothes, she has been coloring with her new art supplies, and she has been playing with her new dollhouse a lot. It is good to see her having fun with all of her new things.

Six Months

2011-01-06T10:13:00.001-06:00

Yesterday was six months since Lynnea died (I tried to update last night, but Blogger wouldn't let me). As a family we are moving forward with our lives even without her here (I prefer the phrase "moving forward" to "moving on"). We've managed to create a comfortable daily routine, and most of the time things are pretty good. There are still some really tough moments as reminders of what we lost hits hard. Earlier this week I finally went ahead and put Lynnea's clothes into boxes and put them away. It was difficult to see the outfits that she had worn during her last month at home and remember how much fun we had together, and the ones that she had worn in the hospital that had been modified to accommodate her IVs and remember how much suffering she went through, but even harder to see the brand new ones with tags still hanging on them because she hadn't grown into them yet. But, ultimately, they're just clothes; whether they are hanging in the closet, sitting in a laundry basket in the living room, or folded up in boxes, doesn't change the fact that she will never wear them again because she doesn't need them anymore. Whatever she's wearing in heaven is probably far cuter (and stain resistant) than anything she ever wore here.

It's starting to hit Ashlyn that Lynnea really isn't coming back. She burst into tears the other day because she "would never get to play with Lynnea on earth again." Forever is starting to feel like a really long time. She is also beginning to try to come to terms with her role as a sister. She tried to tell me the other day that she used to be a sister, but now she's not a sister anymore because her sister isn't alive. I tried to explain to her that she will always be a sister, even though Lynnea is gone. She didn't believe me, and I didn't feel like arguing with her about it, but hopefully, she will eventually understand that being a sister is a permanent thing.

New Year

2011-01-01T20:22:00.000-06:00

"And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, who has been given to us." Romans 5:5

We enter into this new year remembering that there is always a reason to have hope, no matter what life brings.

Ashlyn the Photographer

2010-12-28T22:26:00.000-06:00

Ashlyn has enjoyed getting to use anyone's camera that she can get her hands on to take pictures for a while now. During some of our Christmas family get-togethers she decided to be the photographer and take many pictures. She's pretty good at taking pictures of people, when she wants to. She also thinks it is fun to take pictures of things; she was particularly interested in taking pictures of her Christmas gifts before she opened them. I'm not entirely sure why, but she thought that getting pictures of the wrapping paper and the bows on the gifts was an important thing to do. She is quite the little photographer.

Merry Christmas

2010-12-25T12:47:00.000-06:00

"For unto us a child is born, unto us a son is given: and the government shall be upon his shoulder: and his name shall be called Wonderful, Counseller, the mighty God, the everlasting Father, the Prince of Peace." Isaiah 9:6

"And there were shepherds living out in the fields nearby, keeping watch over their flocks by night. An angel of the Lord appeared to them, and the glory of the Lord shone around them, and they were terrified. But the angel said to them, 'Do not be afraid. I bring you good news that will bring great joy to all people. Today in the city of David a Savior has been born to you; he is the Messiah, the Lord.'" Luke 2:8-11

Today we celebrate the birth of Jesus, and marvel at the peace and joy that He brings to all people through his promise of salvation. Enjoy the gifts He has given.

Christmas Questions

2010-12-22T00:06:00.000-06:00

Last year Ashlyn's important question about Christmas was, "What should we get Jesus for his birthday?" This year, her Christmas conundrum is that she knows that it is Jesus' birthday, but she doesn't know how old he's going to be. I love the questions she comes up with.

Ashlyn Reads

2010-12-17T17:51:00.000-06:00

Last week when we went on our little outing downtown to Macy's, we also stopped at Barnes & Noble and Ashlyn got a few new books, including the beginning set of Bob Books. Well, it turns out that these are perfect for her and she can read them all by herself. There are 12 books in the set, and she has successfully read the first nine. At bedtime now she likes to read to me, which is lots of fun.

Baking Christmas Cookies

2010-12-14T21:44:00.000-06:00

This past weekend, Ashlyn and I started our Christmas baking. We made gingerbread cookies, and sugar cookies. Ashlyn is an excellent helper. She enjoyed mixing the dough, rolling the dough, using the cookie cutters to cut the dough, and decorating the cookies. She also enjoyed sampling the cookies afterward to make sure that they tasted good. The plan is for us to get the rest of our baking done sometime this week.

Macy's Santaland

2010-12-10T20:48:00.000-06:00

Today my Aunt Valerie took Ashlyn and me to the Macy's Santaland display. Ashlyn enjoyed looking at the display, and then enjoyed going to the puppet show that they also had there. I think her favorite part of the day though, was riding on the escalators. She had never been on an escalator before, so this was special for her. She was also impressed by all of the mirrors in the bathroom. She was a good girl all day and we both had fun spending some time downtown.

5 Months

2010-12-05T23:20:00.000-06:00

Today it has been five months since Lynnea went to heaven. As we prepare for Christmas -- a time filled with traditions and memories -- it has been difficult to continue on without her here. We all miss her a lot, and going into this season without her smile is hard. But, even though it is hard, we continue to focus on the the fact that we are celebrating the miracle of Jesus' birth -- an event that is the reason we have confidence that Lynnea is no longer suffering as she lives in the glory of heaven.

Decorating for Christmas

2010-12-03T23:05:00.000-06:00

Today we decorated for Christmas. Ashlyn enjoyed helping decorate the Christmas tree (she decided to dress up as a fairy princess for the occasion). She was very excited to see all of the lights and decorations as we took them out of boxes and put them around the house. It was a little hard for me as I took the four stockings out of the box, and as I hung Lynnea's ornaments on the Christmas tree. Last year Lynnea thought that the Christmas tree was really funny and she enjoyed having it in her house.

Hats

2010-11-30T21:50:00.000-06:00

I'm not sure why, but Ashlyn has had a thing for hats lately. Every time I turn around, she's wearing some sort of hat on her head. Really, our house isn't that cold. ;-)

Happy Thanksgiving

2010-11-25T21:35:00.000-06:00

This past year has been filled with challenges, especially the loss of Lynnea. It was hard celebrating today without her, but today was not a day to dwell on what we don't have, but instead to look at how many things we have to be thankful for. I am have an amazing husband, and daughter that make my life meaningful and special every day. I have an extended family that has been loving and supportive my whole life, but especially over the past couple of years that have been particularly difficult. I have a warm house, plenty of food to eat, and clothing to wear. All of my needs are met, along with many of my wants. I have also been blessed with many friends that we met along the way during Lynnea's journey that still mean a lot to us even though she is gone. Indeed, this Thanksgiving, I have a lot to be thankful for.

We celebrated today with extended family. Ashlyn enjoyed seeing how many people she could convince to read her stories, and she had fun trying to get everyone involved in playing "dress-up" with her, including Great-Grandpa.

Ashlyn is Thankful...

2010-11-24T13:28:00.002-06:00

I asked Ashlyn what she is thankful for, and this was her response: "I am thankful for my family, food, my tricycle, and rain and snow."

The Art Room

2010-11-19T18:54:00.000-06:00

The big project for this week was turning the spare bedroom (previously used for storage) into an art room -- a place for both me and Ashlyn to work on our artistic endeavors. Ashlyn was very excited about this, and loves her new space to create. This has resulted in lots of artwork, including some to go with her stories on her blog. It is really nice to have all of the art supplies in one place, nicely organized for easy use.

First Snow

2010-11-16T19:01:00.000-06:00

Ashlyn was very excited about the first snowfall of the season. She enjoyed building a snowman (OK, so technically, I think it is a snowwoman) at Grandma and Grandpa's house. She also thought it was great to splash through the sloppy puddles (I have no idea where she might have inherited that trait). Even though I can't say that I'm particularly excited about the fact that winter seems to be here for real, it is a lot of fun to see her excitement about the snow.

Ashlyn's Visit

2010-11-09T22:39:00.000-06:00

Today I took Ashlyn down to the hospital to visit some of our friends. This was the first time she had been there since Lynnea died (I have been back a few times now). I wasn't sure how she would react, but she said she wanted to go, so I figured it was about time to let her visit. She was super excited to be there seeing all of the things that were so familiar to her, and getting to visit with some of the doctors and nurses that she had gotten to know during Lynnea's life. She was a little bit disappointed that we didn't stop to play in the hospital playroom, and she didn't get to see Dr. St. Louis because he was in the OR, but she managed to handle these things well (she did get to see most of the people on her list that she had hoped to see). Overall, I think that it was good for her to have the opportunity to go back and spend a little bit of time there because there were a lot of things that she really liked about the hospital when Lynnea was there, and she spent so much time there that it feels strange to her now to not go there all the time.

Re-Birth

2010-11-07T20:57:00.000-06:00

"For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be." Psalm 139:13-16

One week ago we celebrated what would have been Lynnea's second birthday. Today is Lynnea's baptismal birthday. Even though her baptism, like all baptisms, was a joyous moment, it is a difficult day for me to think about. She was baptized in the ER while fighting for her life. Those moments are not happy memories, and I try not to dwell on them, but I think that it is worth remembering once in a while. She was baptized in Princeton while we waited for the neonatal team from the NICU at the U of M to come up to transport her. We arrived at the U in the middle of the night; they ran tests all night, and finally, around 6am a cardiologist came to talk to us about Lynnea's echocardiogram. I remember the cardiologist drawing a picture and describing what a normal heart looks like, and then drawing a picture of Lynnea's heart. She described all of the things that were wrong with Lynnea's cardiac anatomy -- the list seemed to go on forever, and by the time she was finished, I wondered if there was anything left that was "right" about Lynnea's heart. I also remember looking at that list, and looking at the drawings, and I couldn't help but marvel at God's amazing handiwork. I was impressed that Lynnea was alive at all, and amazed at the way that her little body had managed to compensate for an entire week even though it appeared that there was more wrong with her heart than right. God's design was perfect in the beginning, and even this completely flawed version of anatomy was capable of so much, I couldn't help but be in awe. When God created Lynnea, He knew all of the intricacies of her entire anatomy, and He knew exactly how many days she would live here on this earth, and what each of those days would entail. He had a plan from her, and that night in the ER when we had her baptized, we placed her in the palm of His hand, and we trusted that whatever He had planned for her, it was for the best. Today in church, we celebrated All Saint's Day (even though, technically, All Saint's Day was last Monday), recognizing all of the faithful believers that God had called home to heaven. Lynnea is one of those believers. Knowing this allows us to grieve her passing with hope -- the hope that we will one day see her again in heaven. Through her baptism, the faith that was necessary for her to get to spend eternity in heaven was placed in her. So, even though most of my memories from that night are some of the most unpleasant memories that I have, it is worth remembering and celebrating that moment when Lynnea Hope was baptized.

Stories by Ashlyn

2010-11-03T19:59:00.001-05:00

Ashlyn is constantly telling me little stories, and she is also very interested in the things that I do on the computer like blogging and Facebook, so I decided to let her have her own blog. We started it a week ago. She typically posts at least one story each day (usually more than one because once she starts telling stories, she doesn't want to stop), and sometimes she includes artwork with her stories. Today I also put a video of her telling one of her stories on it. I type the stories for her, but she gets to type the titles (I tell her what letters to type, and she types them, though she is getting pretty good at figuring out what letters she will probably need to use in most of the words). You can visit Ashlyn's blog at www.storiesbyashlyn.blogspot.com. There is also a link to her blog on the side under the heading My Blog List. Enjoy!

Happy Birthday Lynnea!

2010-10-31T12:14:00.000-05:00

The focus of birthdays is usually on the aging process -- becoming another year older. For young children, the idea of being a whole year older is exciting, while for adults, it is often seen as a reminder that they are one year closer to the end of their lives. But really, the focus shouldn't be on aging; instead, the celebration should center on the birth -- after all, that's what is being commemorated -- the fact that a person entered the world, changing it somehow, sometimes in a big way, sometimes in small ways, but altering things nonetheless in that moment when they arrived, and in every moment afterward.

Two years ago today, I gave birth to a 7lbs. 10oz. baby girl named Lynnea Hope. In that moment, she changed my world, and Corey's world, and her big sister Ashlyn's world forever. Suddenly we were no longer a family of three, but a family of four. Ashlyn became a sister. In some ways, it may have seemed like a small thing to everyone outside of that hospital room, or outside of our immediate circle of friends and family, but it wasn't small at all. We welcomed Lynnea Hope into our arms, and into our lives, having no idea at all the kinds of changes she would bring, or the number of lives that she would affect.

The two years since that moment when I held Lynnea in my arms for the first time have been nothing like what I had expected them to be. Most of all, I never expected to get to say hello to her for the first time so early in the morning, only to have to say goodbye to her on an afternoon 20 short months later. I feel like I was just beginning to get to know her. But, I loved all 612 days that I was able to spend with her, and during that time, she taught me (and many other people) a multitude of valuable things, including the significance of birthdays.

So, today we celebrate the appearance of Lynnea Hope in our arms, in our hearts, in our lives. I wish that she were here to celebrate with us, but, somehow, I'm sure that no Elmo-themed birthday party that I possibly could have planned for her would even come close to comparing to the celebration that she is experiencing in heaven right now. So, we will enjoy the cupcakes that Ashlyn helped me bake (with sprinkles, of course), and remember what an amazing little person entered the world at 4:07am on Friday, October 31, 2008.

Here is some video footage from Lynnea's one and only birthday party.

Reformation Party

2010-10-29T20:57:00.000-05:00

This evening, Ashlyn went to the Reformation Party at church. It was a costume party, and she dressed up as a Hershey's Kiss. She enjoyed the games and getting to spend time with all of the other kids that were there.

Kitchen Helper

2010-10-26T22:52:00.000-05:00

Ashlyn has been a helper in the kitchen lately. She has been determined to make herself lunch whenever I will let her. She makes peanut butter and honey sandwiches. She also enjoys helping me make cookies and muffins.

Ashlyn's Lynnea Book

2010-10-22T21:04:00.001-05:00

Ashlyn's Family

Lynnea's Wagon Ride

Lynnea in the White Crib

This week Ashlyn worked on adding some pictures to her Lynnea Book. First she drew a picture of her "whole family, before Lynnea died." This is what she told me to write about the picture: "This is a picture of my whole family. Daddy is very tall. He loves me. Baby Naya liked me, and she was very short. Ashlyn is big; she would play with Naya and help take care of her. Mommy is bigger than me. She likes to do art."

Next she drew a picture of Lynnea going for a wagon ride at the hospital. This is what she said about her picture: "This is Lynnea going for a wagon ride at the hospital. She has a smile on her face because she was happy -- she liked riding in the wagon. She is laying on her pink blankie in the wagon to make her comfortable. She has a feeding tube in her tummy because that is how she would eat."

The third picture she drew was of Lynnea at home. This is what she said about it: "This is Lynnea at home in her white crib. She has two pillows -- one under her head, and one under her feet because she was silly and liked to put her feet on a pillow. Bear-Bear is in bed with her because that's what she liked to sleep with. She has a feeding tube, but that's all -- this was a day when she didn't need any oxygen or the oximeter."

Missing Lynnea

2010-10-19T22:43:00.000-05:00

Ashlyn has mentioned several times over the past few days that she misses Lynnea a lot. Sometimes she mentions it directly, and sometimes it comes up during her play with her toys. Today at nap time, she told me that Bunny was sad. So, I asked her why Bunny was sad, and she told me that Bunny missed seeing Lynnea all the time and playing with her. She doesn't cry about it, she just randomly mentions that she is sad and misses Lynnea. We look at pictures of Lynnea, and watch some of the videos we have of her, and this seems to help some. We also draw pictures and talk about things that we used to like to do with Lynnea.

Again with the Dip-Dip

2010-10-15T22:37:00.000-05:00

I guess Ashlyn still hasn't outgrown her love of dipping things at meal times. She no longer specifically asks for "Dip-Dip," but it there is anything dippable, she dunks it into whatever is available. The recent favorites include: peanut butter and jelly sandwich dipped in blueberry yogurt, chicken nuggets dunked in strawberry yogurt (yes, I know, if I don't want her to dunk stuff in it, maybe I should quit serving yogurt for lunch), fishsticks in applesauce, and carrots in ketchup.

Shafer Corn Maze

2010-10-12T22:10:00.000-05:00

On Saturday, Ashlyn and I went to the Shafer Corn Maze with my brother, Chad, my brother-in-law, Jarimia, and my neice, Lexi. Lexi acted as our navigator through the maze, while Ashlyn insisted on also carrying a map which she spent a lot of time staring at intently. The girls also enjoyed feeding the goats, and working their way through the tangled web.

Quiet Goodbyes

2010-10-08T21:30:00.000-05:00

In the midst of my newsfeed on Facebook today, among all of the status updates from all of my friends, there was the announcement that Amayah had passed away. Before and after it in the feed were comments about the nice weather, and what people were planning on making for dinner, etc. Life continued on while life stopped for one little girl. But, that's how it always is, isn't it? Life continues, even in the absence of one, while friends and loved ones say their quiet goodbyes.

Amayah was another heart baby, and her family faced choices similar to the ones we did with Lynnea about when and how things would end. Please keep her family in your prayers. Also keep another one of our heart friends in your prayers as well -- baby Aidden had his Glenn surgery more than a week ago, and there have been some unexpected complications.

Three Months

2010-10-05T22:47:00.000-05:00

Three months have gone by now since we lost Lynnea, and even though there have been some very good days since then, I'd be lying if I tried to say that there aren't still plenty of moments when the unexpected reminders hit me out of nowhere, and I miss her like crazy. I should be busy planning what would have been her second birthday party, but instead I am trying to force myself to finish putting her clothes away in boxes. But, moving on is necessary, even though it is hard sometimes.

Leaves on the Trampoline

2010-10-03T17:54:00.000-05:00

Today Ashlyn had a lot of fun playing on the trampoline at Grandma and Grandpa's house. The trampoline was covered with leaves, so, rather than sweeping the leaves off from the trampoline, Ashlyn thought it would be a good idea to sweep the leaves into a pile and jump into them. She worked very hard making herself a pile, and then enjoyed jumping into it.

Playing Football

2010-09-28T21:08:00.000-05:00

We took advantage of the nice weather today and played outside for awhile. Corey worked on teaching Ashlyn how to throw a football. She throws it with both hands, and still seems to think that it is better to kick it than to throw it. Catching it will take some work. We also had a bonfire and roasted hotdogs for supper.

HopeKids Fun

2010-09-24T22:00:00.000-05:00

This week we went to two HopeKids events. On Tuesday, Corey and I went to see a pre-screening of the new movie Legend of the Guardians. It was a pretty good movie, and it was good to have a night out together. Date nights are a rare thing, so this was fun. On Thursday, I went with Ashlyn, my parents, and my brother Tim to see the play Charlotte's Web at Stages Theatre. This was also fun, though I wasn't sure it would go well because, prior to going, we had let Ashlyn watch the film version and she became very upset when Charlotte died at the end, and she wasn't sure that she really wanted to go see the play. She did fine though -- she was very happy to see that the person playing the role of Charlotte did not actually die at the end of the play, and this made it all OK for her.

Recent Artwork

2010-09-21T13:49:00.000-05:00

Ashlyn paints with medicine dropper

Ashlyn paints with toothette

We've been doing lots of art again because it's one of Ashlyn's favorite things to do. I've taken some of the leftover medical supplies that we have around and have been finding ways for Ashlyn to use them for her art projects. A few days ago I used some of the Hydra-Aid (the beverage thickener that we used to thicken water for Lynnea so that she could handle swallowing it) that we have left to thicken some water with food coloring in it. This made an interesting kind of paint. Ashlyn thought it was fun to use medicine droppers and some of the oral syringes that we have left to squirt the paint on to her paper. She also enjoyed using the toothettes (pink minty sponges that Lynnea liked to use to drink her thickened water) to paint with. Along with painting, she has also been coloring with markers, crayons, and chalk pastels.

Visiting the U

2010-09-17T21:05:00.000-05:00

On Tuesday, Corey and I went down to the U of M to visit for the first time since Lynnea passed away. It was strange to be there without her, and it was a little hard initially going up to the 5th floor, but it wasn't as bad as I had feared it might be. We were there to visit another baby with the same heart defect that Lynnea had that we had met in the hospital last February. He had been scheduled to have his Glenn surgery on Monday, but that ended up being postponed. It was good to see that family again, and we had a nice visit with them. It was also good to see some of our PICU Family -- the doctors and nurses that we had come to know so well while we were there. I'm glad that we decided to go. Ashlyn was disappointed that we didn't bring her along, but we figured that we should go without her this first time back. We promised her that we would go again another time and bring her with us.

Family Time

2010-09-12T20:45:00.000-05:00

This week Corey took a couple of days off from work (he had vacation time he had to use up) so that we could spend some time together as a family and to celebrate my birthday. On Wednesday we took Ashlyn to play at a park near our house; it was one she had never been to, so this was very exciting for her. On Thursday, Ashlyn helped Daddy bake birthday cupcakes for me. They did an excellent job. On Saturday, we went to the Science Museum. Ashlyn thought the dinosaurs were very cool. We had fun spending time together as a family.

Two Months

2010-09-05T21:43:00.000-05:00

Two months ago, I held Lynnea in my arms for the very last time, rocking her as she took her final breaths. On July 5th, I said my final good-bye, but really, in a lot of ways, I had already lost her on June 17th when she went into cardiac arrest. That night, while I stood in the doorway of her hospital room watching the doctors doing chest compressions on my baby, desperately working to bring her back to life, I prayed, as I had so many times in Lynnea's lifetime, for a miracle. The miracle I was hoping for was a miracle of healing, of restoration, of more time with my baby. . .just a little more time. But, also as always, even though it was hard to do, I ended my prayer with "not my will, but Thy will be done." I was not given the miracle of complete healing that I had been hoping for, but I was given a little more time; there were no more smiles, or giggles, or demands for water on a pink minty sponge, but there was time for a few more goodnight kisses, a few more nibbles at her baby-back ribs, and time for more prayers. Lots of people prayed: family, friends, friends of friends, complete strangers. . . they all prayed, and continued to pray. A friend of mine called me after we had gotten the very discouraging news about the MRI results that showed that Lynnea had suffered extensive brain damage; she had been praying for Lynnea and our family, and she wanted to know what she should pray for specifically, rather than the more general prayer of strength and comfort that she had been praying. I told her to pray for clarity -- I was tired of all of the gray areas, I wanted to know how to proceed in a way that was best for Lynnea; I wanted to be able to clearly see what was best for Lynnea without having my judgment clouded by my own selfish desires for her. I wanted healing. I wanted Lynnea to live. I wanted as much time as I could possibly have with her. I wanted all of these things for me so badly that it was difficult to know if I was really still doing what was best for her. So, my friend prayed that my family and I would have clarity in the decisions that we were being forced to make. And that clarity came. It became clear how much Lynnea was suffering, and how much better off she would be snuggling in the arms of Jesus experiencing all of the glories of heaven, and it became clear how selfish it was to keep her here in a world where all she could know was suffering. It might be easy to ask why the prayer for clarity was answered while the prayer for a miracle was not. But, along with clarity about how to proceed with Lynnea, there also came clarity about the miracle I had asked for; the night that Lynnea coded, I prayed for a miracle -- not my will, but His will -- and indeed a miracle did take place. During those last weeks in the hospital, I was shown that there were far more people praying for Lynnea, being impacted by her and her struggles, than I could even imagine. There was strength given through those prayers, strength for me and my family to make the impossible choices that we were faced with, strength to say our goodbyes to sweet little Lynnea with confidence, and strength to go on in spite of the pain that comes from the empty hole that is left in our lives without her here. Thank you to everyone who prayed for Lynnea throughout her life, and who keep praying for us now that she is gone.

Minnesota State Fair

2010-09-01T21:35:00.000-05:00

Daddy and Ashlyn have fun on the farm.

Farmer Ashlyn drives her tractor.

Ashlyn tries deep fried alligator.

Ashlyn and Daddy on the giant slide.

Today we went to the state fair. We had a fun day as a family, and Ashlyn had a great time. She loved going down the giant slide with Daddy (she's a bit of an adrenaline junkie). She also enjoyed the Little Farm Hands -- she was a hard-working farmer, and she thoroughly enjoyed the apple that she was able to buy at the market with her day's earnings. In addition to the apple, she also ate a variety of other foods today: a chocolate malt, cheese curds, chocolate chip cookies, frozen grapes, and a pronto pup (all of which she shared with Mom and Dad, except for the pronto pup, which she quickly devoured all on her own). She wasn't overly excited about trying deep fried alligator; she told me that "alligators aren't food." But, in the end, she managed to taste a bite of it, but didn't want a second bite. We decided to sit down at the Leinie Lodge just to rest, and Ashlyn was very excited that a band was playing music (The Haygoods) so she insisted on getting out of her stroller so that she could dance to the music. She is quite the dancer, and seemed to completely enjoy her first concert experience. Overall, it was a very good day.

Ashlyn Hula Hoops

2010-08-27T19:38:00.000-05:00

This week Ashlyn has desperately been trying to hula hoop. She's not coordinated enough to do this successfully, but that doesn't stop her from trying repeatedly. I admire her persistence. She holds up the hula hoop, flings it around, and then tries to wiggle her hips to keep it up, though it always quickly falls back to the ground. Eventually, she gets tired of this and instead leaves the hula hoop on the ground, stands in the middle of it, and spins herself around.

Busy Girl

2010-08-20T23:06:00.001-05:00

Ashlyn has had a busy week of playing at home. She has done multiple surgeries on various dolls and stuffed animals. She has pretended to go camping in her tent. And, she has painted several watercolor pictures.

Firefighter Ashlyn

2010-08-13T19:32:00.000-05:00

Ashlyn dressed up in a random assortment of her dress-up clothes today and announced that she was a firefighter. I thought her choice of firefighter attire was, ummm, very interesting.

An Ashlyn Moment

2010-08-10T21:30:00.000-05:00

Things have been relatively uneventful in our household over the past few days. On Saturday, I took Ashlyn to a friend's birthday party, which she enjoyed. Other than that, we've continued to work on getting her bedroom settled and Lynnea's old room turned into a toyroom, but it's been a slow process. Eventually it will get done.

Earlier today, Ashlyn was playing downstairs in the playroom, and she came up to me and handed me a toy plastic tomato. I pretended to eat it. She said to me, "No Mommy! That's not for eating, it's fake." I replied, "OK, then what am I supposed to do with it?" Ashlyn explained, "It goes in my toy kitchen. You're supposed to put it away." Gee, I'm so glad that Ashlyn thinks I'm supposed to clean up her toys for her.

One Month

2010-08-05T21:38:00.000-05:00

Lynnea has been gone for one month. And I still miss her.

ColorWonder Paint

2010-08-02T21:04:00.000-05:00

Ashlyn Paints

Ashlyn's Painting

Today for art, (no, we haven't been "doing art" everyday lately, mostly because I've been slacking...) Ashlyn painted a very large picture using her ColorWonder Paints. She had fun with this, and worked very hard at covering the entire sheet of paper. Every time that I thought she was almost done, she would look at the paper and say, "OK, Mommy, I think I'm done...no, wait, I think I still see a spot that needs more paint." And then she would continue painting for several more minutes.

Moving Baby Stuff Out

2010-07-30T20:23:00.000-05:00

Today we took down both cribs and put them in the garage. Ashlyn has been sleeping in the "big bed" (my old twin-sized daybed) in the downstairs bedroom, so to make more room in her bedroom, we decided to take her crib (which had been converted to a toddler bed a while ago) out to the garage along with Lynnea's. Since Ashlyn has claimed the downstairs bedroom as her own (she moved down there during our last stay at home with Lynnea because she didn't like listening to Lynnea's monitors go off all night, and she didn't like the nurses coming in and out of the room all night), we've decided to turn the upstairs bedroom into a "toy room" for the time being. We took out Lynnea's crib, and the bassinet (that had been holding many, many stuffed animals) to make room for some extra toys that we had been storing in the living room. We also took the baby play mat and the pink bouncy chair out to the garage. It was hard to take the baby stuff out, but I'm sure it will be nice to have a play area upstairs for Ashlyn when we are done with all of the rearranging.

Interesting Feeding Method

2010-07-28T21:32:00.000-05:00

When we got rid of Lynnea's medical supplies, I kept a few things, like the backpack for her feeding pump (we donated the feeding pump itself because I couldn't think of a use for it, but the little backpack was pretty cute, and we had two of them, so I kept one), and a few of the unused feeding bags. Well, Ashlyn discovered that I had kept these things, and she asked me if she could have one of the feeding bags and the backpack to use with her dolls (she's also confiscated some other things for in her doctor's kit). I decided that it was fine for her to play with this, so I gave her the items she had requested. I watched her pretend to fill the bag, and then pretend to prime it. She took a bowl out of the cupboard and put it in the little backpack, pretending that this was the feeding pump. Then, she went to feed her baby, only to discover that it didn't have a G-tube. She thought for a moment about how she should proceed, then decided that it would work to put the end of the tube in the baby's mouth instead. I questioned her about this, asking, "Ashlyn, wouldn't it work better to just feed the baby with a bottle, since it doesn't have a G-tube?" She replied, "Nope. I don't want to feed her with a bottle. This is easier."

Doctor Ashlyn

2010-07-26T20:46:00.000-05:00

Today I went shopping with Ashlyn, and on our way home, Ashlyn became very upset because she missed Lynnea, and then she was afraid that "everyone in her family would die, and she would be all alone, and would miss everybody very much." We talked about these things, and eventually she calmed down, but this is probably the biggest meltdown I've seen from her yet over Lynnea's death.

After we got home, she decided to play "doctor" (this is incredibly common for her -- playing "doctor" has been one of her favorite things to do over the past two years). This time, I was the patient (sometimes I get to be the nurse, but not today), and there was "something wrong with my heart" so, I needed heart surgery. Initially, she thought that I should be awake for the surgery, but after much arguing, I convinced her that I wanted to be asleep if she was going to do heart surgery on me. Then, after surgery, she was going to "put some dressing on me." This made sense -- she had heard us talk about Lynnea having a "dressing" on after her surgeries. Well, I asked her what kind of dressing it was, and she replied, "Ranch. It's ranch dressing." I couldn't help but laugh really hard at this. She was very serious about it, and had no idea why I was laughing. I was laughing too hard to try to explain to her that there is a difference between salad dressing and wound dressings...perhaps someday I will get around to pointing this out to her, but for today, I thought it was OK to just let her think that ranch dressing is an appropriate thing to put on someone after surgery.

Getting Wet

2010-07-25T23:02:00.000-05:00

Ashlyn and the boys before launching their water rocket.

Tim builds himself a barricade during the water fight.

Ashlyn looks for someone to squirt.

Watch out, her aim is better than you might think!

Time to reload.

Apparently, it's more fun if you get in the bucket of water while you reload.

Ashlyn had fun playing in the water today. First, she "helped" her uncles and cousin launch a seven-foot water rocket, then she enjoyed joining them in a water fight. She used her cuteness to her advantage -- she would go and ask them if she could "please have a turn with the water squirter" only to then turn around and squirt them with it when they gave it to her. She also loved throwing water balloons at everyone.

Moving Forward

2010-07-23T21:18:00.000-05:00

Over the past few days, we've been working on moving forward. Some of the things have been harder than I would have expected -- getting rid of Lynnea's old medications, sending medical supplies back to where they came from (there are a few things left, but it should all be gone soon), and rearranging our living room after taking Lynnea's medical stuff out. I know that these things needed to be done, and there is a certain amount of relief that comes from having accomplished them. Ashlyn continues to do pretty well, and is enjoying her time at home with Mommy.

Just the Three of Us...Again

2010-07-20T22:36:00.001-05:00

I started this blog just a couple of weeks before Lynnea was born, and the first posting was about how I couldn't imagine what it would be like to go from being a family of three to a family of four. After spending 20 months as a family of four (and loving it), we are all forced to once again live life as a family of three. As I was reading that original blog post today I was reminded that we were happy as a threesome before, so I'm sure it must be possible to be happy as a family of three once again. We all miss Lynnea very much -- Ashlyn randomly tells me at least a couple of times each day that she "misses Naya," I can't ignore her lonely blue toddler rocking chair now occupied by two of her pink Bear-Bears, and I can't bring myself to remove all of her medications from the refrigerator -- but life has to go on, even in the absence of one. This afternoon Ashlyn enjoyed helping with her daily task of watering the tree that we planted in memory of Lynnea, and then she had fun helping Daddy wash his car. At dinner, I couldn't help but laugh at Ashlyn's continued creativity at mealtime -- we had hotdogs and mac-and-cheese; when I offered Ashlyn bread to go with her hotdog (we were out of hotdog buns) she asked for peanut butter on it, and then she proceeded to use it has a hotdog bun. After a couple of bites, she decided that it wasn't a great combination and took the hotdog out of the bread, but continued to eat the entire peanut butter covered hotdog anyway.

Remembering Lynnea

2010-07-16T22:16:00.000-05:00

This week has been spent remembering sweet little Lynnea. I had prepared a PowerPoint slide show for the funeral that I had hoped to post on here, but due to some technical difficulties, for now I am just posting a collection of some of my favorite video clips of Lynnea while she was at home with us. The videos make me smile and laugh as I remember how special each moment was with Lynnea. Even before she was born, I knew that God had a plan for her life that went far beyond anything that I could imagine, and I found myself trusting in that reassurance time and time again. And now, even though it hurts a lot to be here without her, I am amazed at how many people and how many lives she touched in such a short time.

Lynnea's Funeral

2010-07-12T21:38:00.003-05:00

Thank you to everyone who was able to attend Lynnea's funeral and celebrate Lynnea's life with us; we appreciated being able to share this occasion with so many of our friends and family. Even though it has been very difficult to say goodbye to our sweet little Lynnea, there is an immense comfort in knowing that all of her "owies" are "all done" and that we will see her again someday in heaven. Many people have asked how Ashlyn is handling all of this, and overall, she is doing quite well with everything so far. She has lots of questions (my favorite one from today came after bringing the casket out to the hearse and putting it inside -- she asked, "Hey, why are they putting Lynnea in the trunk of that car?!") that we answer for her as simply and as honestly as we can, and I'm sure the questions will continue for a long time as she tries to cope with and make sense out of losing her baby sister.

I know that this blog has been primarily about Lynnea and her struggles, but I started it before we knew about any of Lynnea's health problems, and my intention was for it to be a "mommy blog" about the events in our lives as a family. I intend to continue it because, even though our family now has a giant Lynnea sized hole in it, we are still a family, and we will go on as such, so I will continue to chronicle our lives to share with all of you the same way that I have for the past 20 months.

Services for Lynnea

2010-07-06T22:41:00.003-05:00

Services for Lynnea:

Visitation:
Sunday, July 11, 2010
4-7pm
Dare's Funeral Home
805 Main Street
Elk River, MN 55330

Funeral:
Monday, July 12, 2010
11am
Trinity Lutheran Church
3812 229th Ave. NW
St. Francis, MN 55070
(Viewing one hour before service.)

Please join us as we celebrate Lynnea's life!

Lynnea Hope Callison

2010-07-05T19:42:00.001-05:00

Lynnea passed away this afternoon at 5:15pm.

More Discussions

2010-07-05T07:30:00.002-05:00

Lynnea's blood pressure continue to drop, and at this time we are not doing anything to actively prevent that. She has been comfortable and peaceful, which is exactly what we hope for right now. Corey and I had a long discussion with one of the cardiologists last night about the possibility of letting them do an autopsy after she dies to get a better look at her heart and lungs to see if there is anything they can learn from her that might help them treat other children with her condition in the future. We also talked about meeting with the people from Life Source to see if Lynnea would be able to donate any organs (we are guessing she probably won't be able to donate much, but we were interested in knowing if there's anything that she could). These things would both be ways for her to help others even after she is gone.

Unstable

2010-07-03T20:09:00.002-05:00

Lynnea was not as stable today as she has been over the past few days. She appears to be in the end stages of heart failure. The doctors and nurses continue working to make her as comfortable as possible.

Quiet Day

2010-07-02T20:07:00.002-05:00

Lynnea had a pretty quiet day. All of her pain and sedation medications were increased to help keep her comfortable (she's still a huge fan of Ativan). I began putting together a PowerPoint presentation with photos and videos of her; this was both fun and hard at the same time. The videos made me laugh, while some of the photos made me cry.

Mementos

2010-07-01T20:20:00.002-05:00

Today we had molds made of Lynnea's hands and feet to make plaster keepsakes for us. Lynnea tolerated this process pretty well. We did one of just her hand and her foot, one with her holding onto one of my fingers and one of Corey's fingers, and one of her holding Ashlyn's hand. Ashlyn enjoyed this process, and was very excited to get to help the Child Family Life specialist mix up the plaster and pour it into the molds. It was good for Ashlyn to get to have such an active role in making this memento. Ashlyn also started making a memory journal of her favorite memories with Lynnea. Both of these activities were perfect for her and her love of "doing art."

Corey and I have decided that we will take Lynnea off from the ventilator on Monday afternoon, and just let things go from there. Any family or friends that would like to come to say their goodbyes to Lynnea are welcome to do so between now and then.

Difficult Discussions

2010-06-30T20:14:00.002-05:00

Today was filled with difficult discussions. Corey and I met with some of Lynnea's doctors to discuss what we would like to do from here. Lynnea clearly showed everyone last night that she cannot handle the work of breathing on her own, and the primary reason for this still seems to be cardiac. There is nothing that can be done to fix her cardiac problems, so there is no way to make it so that she will be able to handle the work of breathing on her own. The decisions that now need to be made are 1. if we are going to take her off the ventilator again or not, and 2. if we do decide to take her off, when the best time to do that would be. Though no final decisions have been made, we will most likely elect to take her off the ventilator sometime in the relatively near future, after any family and friends that want have the chance to say goodbye to her.

I also had a conversation with Ashlyn tonight about the fact that it is probably almost time for Lynnea to go to heaven to live with Jesus. This was a very difficult discussion to have, but I felt that it was necessary to prepare her for this rather than not giving her any warning (she had already been asking questions about it, so it was an appropriate time to have this talk).

Back on the Ventilator

2010-06-30T08:06:00.002-05:00

Around midnight last night it became clear that Lynnea could not handle the work of breathing on her own any longer, so we elected to reintubate her. She is relatively stable on the ventilator, but it is difficult to determine exactly where we should go from here because there are not any good options. Last night her respiratory failure appeared to be caused by several factors -- she was having a difficult time clearing her secretions, which is probably a neurological problem that may or may not get better with time, but there also seemed to be a cardiac issue as well, which will not get better with time, along with all of Lynnea's other pre-existing respiratory issues.

Still Off the Ventilator

2010-06-29T20:52:00.002-05:00

Overnight last night, and throughout the day today, Lynnea has continued to really struggle to breathe on her own, but since she is still managing to keep her SATs up, and her labs aren't getting much worse, we've decided to continue to wait it out for now. It is difficult because it is still so unclear whether her breathing is going to get any better or not. We did a lot of snuggling in the rocking chair today, which was nice for both of us. Corey was here and also got a little bit of snuggle time in with Lynnea.

Extubation

2010-06-28T19:23:00.002-05:00

Lynnea was taken off the ventilator this afternoon around 3:30. She was put on high flow oxygen support at 8 liters of flow, 100% oxygen (which is something rare for her -- typically we don't like her on more than 60%), which is a lot of extra support. The first two hours were pretty rough, but the doctors and I agreed that it would be best to wait it out as long as we possibly can to give her the chance to clearly show us whether or not she can handle the work of breathing on her own. Now, she is still working really, really hard to breathe, but her SATs have stayed up, and her blood gasses haven't looked terrible, and we've managed to wean the oxygen down to 60%. It is still a bit too soon to tell if she's going to make it through the night without needing to be reintubated, but I'm hopeful that she might do it. Today she also spiked a fever, and her white count is up again, so they started her back on her antibiotics (blood and urine samples were sent, but they decided to start the antibiotics without waiting for the culture results because those can take several days). This evening I was able to hold her in the rocking chair for a couple of hours, which I think she liked -- she seemed to be a little less fussy when I was holding her, and when she would cry, it was a little bit easier to get her calmed down again.

There was a party in the family lounge this evening that Ashlyn enjoyed. She made an awesome visor (to go along with her awesome hat and awesome t-shirt that she has made at other hospital parties), and she enjoyed a root-beer float.

A Plan

2010-06-27T21:22:00.002-05:00

We chose not to try to take Lynnea off from the ventilator today. There was no real reason from a medical standpoint that we couldn't attempt it today, it was simply more about timing. I had a discussion with one of the doctors this morning about how we would like to proceed from here, and I pointed out that it would be great if we could wait to extubate until tomorrow for Corey's sake. He has Tuesdays and Wednesdays off from work, so if we tried tomorrow afternoon, he could be around for the next couple of days to see how things go without having to sit at work, potentially waiting for a call saying that she isn't doing well. So, barring anything unexpected with Lynnea between now and tomorrow afternoon, we will attempt to take her off then.

The doctor also asked me about Lynnea's code status, and I told him that Corey and I had made the decision that, if she goes into cardiac arrest again, it would be best for Lynnea to just let her go. So, if she codes again, they will not resuscitate her. We know how much she has suffered already in her short lifetime, and if her heart stops again, it would only bring her more pain and suffering to try to bring her back.

Waiting

2010-06-26T20:01:00.002-05:00

This morning in rounds, we talked about extubating Lynnea today. Then we discussed the fact that it she might not be tolerating her feeds (she was only on 9mL/hr) so it was decided that it would be a good idea to turn off her feeds for 24 hours to see if that made things any better. Since extubating her would add another variable to the equation, we decided to wait to extubate her. At this point another day one way or the other probably doesn't make much difference. She seemed to have a more difficult day today than the past few days -- less movement, lots of crying for no apparent reason, difficult to calm her, etc.

Waiting to Extubate

2010-06-25T19:31:00.002-05:00

The plan was to attempt to extubate Lynnea today, but this morning she had a few episodes where she dropped her SATs pretty low and had a difficult time recovering, so it was decided that we should wait at least one more day before trying to take her off from the ventilator. Other than dropping her SATs, Lynnea had a fairly uneventful day. She has not shown anymore improvement in her neurological status -- she doesn't seem to have many purposeful movements, she doesn't appear to really see anything when her eyes are open, and she doesn't show any sort of clear recognition of me or anyone else. The doctors do not hold out much hope at all of her recovering from this at this point, considering how long it has been since her cardiac arrest, she should have shown more improvement than this by now.

EEG Results

2010-06-24T20:11:00.002-05:00

Today Lynnea had an EEG to determine if she is having any seizure activity. She's not. But, the EEG also confirmed what the MRI showed: there is not a whole lot of normal brain function going on.

Tomorrow the plan is to attempt to extubate her to see how she does without the support of the ventilator.

Minor Changes

2010-06-23T21:22:00.002-05:00

Today Lynnea's ventilator settings were weaned down even further; technically, her current settings are considered settings that are appropriate for an extubation attempt, but there is no big rush to extubate her. At this point they haven't begun doing any pressure support trials with her, so they most likely won't actually attempt to extubate at least until tomorrow afternoon sometime. There are several reasons not to rush to extubate her, one important thing being that they are giving Corey and me some time to discuss how we would like to handle things if extubation doesn't go well -- do we want them to reintubate, or would we rather make a conscious decision at this point to just let her go -- and the truth is that for us at this point, it is a little too soon to make that kind of decision.

One of the things that makes a decision like that extra challenging is the fact that no one can give us any real indication of how much of a recovery Lynnea will make from a neurological standpoint, or even if she will recover at all; there is no way for anyone to know whether or not we will ever truly be able to get "our Lynnea" back, and there is no way to know at this point if fighting to keep her alive no matter what is simply prolonging her suffering, or if there is a chance that we would be able to have more meaningful time with her. These are things that simply cannot be predicted.

There were not any huge changes in Lynnea's condition today, but I certainly noticed some small ones (exactly what they mean for her long-term outcomes are impossible to tell). She moved more today than she did yesterday. Today I definitely saw her move all four of her limbs several times, and not only was the number of times she moved more than yesterday, but the amount that she moved each limb was more than yesterday. It was still not clear if these were purposeful movements, or if they were still primarily reflexive, but she moved. She had her eyes open today and yesterday. Yesterday she clearly did not "look" at anyone, or anything -- she just stared ahead and her eyes didn't move -- she didn't track objects, and she didn't move towards the sound of a voice. Today her eyes moved more, and this evening I got the feeling that perhaps she was trying to move them towards the sound of voices, though it was not clear enough to know for certain. She still seems to have a lot of pain in her left leg which has a blood clot, and it is very sore from the several attempts that it took to put in an IO while she was coding. It is still very sore today, though she didn't cry every single time it was touched today.

We all appreciate all of the prayers during this time. The doctors do not hold out a lot of hope for her to recover her neurological function, but there is still a small chance that she could recover some of it, and for God, this is not something beyond his ability -- nothing is. For now, there is no talk of evaluating her for a heart transplant because, in her current condition she is not eligible for transplant. If her neurological function improves, it might be possible to consider her for transplant. From a cardiac standpoint, she does not have a lot of time left with her current heart -- no one can say for sure how long, but most likely only weeks, possibly a few months. The decisions that Corey and I are being asked to make about how we would like to proceed from here are very difficult ones. Please continue to pray for healing for Lynnea, but also wisdom, strength, and comfort for us as we face these decisions head on.

MRI Results

2010-06-22T20:33:00.002-05:00

This morning I talked to the neurologist about Lynnea's MRI results. The MRI showed that there was brain damage, and that it is global -- both sides of her brain were damaged. He said that it is impossible to really predict exactly how much she can recover from this, but he explained that the parts that were damaged effect her motor control, so she will most likely have difficulty moving her limbs, and there could be some loss of cognitive abilities as well, especially language. He pointed out that, since she was already a bit developmentally delayed coming into this cardiac arrest event, this will definitely set her even further behind, assuming that she is able to recover much at all. He also said that the part of her brain that controls her ability to breathe on her own was not effected, so there is no reason, from a neurological standpoint at least, that she would not come off the ventilator at some point (obviously her respiratory issues might make it challenging, but that's a separate issue).

As far as a treatment plan for today goes, today they were able to start weaning her ventilator settings so that eventually they can try to extubate her (there's no huge rush for this, so they are not being overly aggressive with the wean), and they started her on a new med, Neurontin. Overall, she had a stable day. Her kidneys and liver have recovered nicely from the cardiac arrest and they both seem to be working fine now.

Obviously, the MRI results were very discouraging, and not at all the news that we wanted to hear. For now, we will keep praying that she recovers as much of her neurological function as she can.

Not Much Change

2010-06-21T22:50:00.003-05:00

Lynnea had an MRI this afternoon, but we have not heard any results from that yet. She spent most of the day off from Vec. She managed to keep her SATs up even when she was over-breathing the ventilator, which is good, but she also did not move very much, or show any signs of really waking up, or anything else that would have been encouraging. She was stable all day, and managed to come off from her Epi drip completely. They are keeping her on Milrinone for now. Hopefully we will know more tomorrow.