Thursday, June 30, 2011

Conversations Then and Now

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.

Friday, June 24, 2011

Vacation Bible School

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.

Wednesday, June 15, 2011

A Sneak Peek

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. 

Sunday, June 5, 2011

Eleven Months

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."