Let me just say, I love that the neurosurgeon had a dinosaur bow tie.
But I digress. An update for the day. Its really pretty simple. They were very impressed with our dressing change technique and the doctors noticed something we didn’t. Slowly, skin is beginning to grow over the opening. So by leaving things just the way they are he predicts that in anywhere from six to twelve months the tissue will cover with skin, reducing the risk of infection. In the meantime he still has a risk for infection, though the doctor suggested that this risk was not as high as initially predicted because we are doing such a good job of keeping Gids infection free.
Surgery is an option too. Because the tissue on the outside of the head is probably non functioning they would remove the tissue and find a way to cover the opening. He suggested several different ways they might do this and to get connected to the neuro facial plastic surgeon to discuss the options for that procedure. There are risks associated with removing the mass including the possibility that it could impair brain functioning and the risk of infection and anesthesia that is inherent in any surgical procedure. The neurosurgeon thinks that the procedure will likely be brain neutral, meaning it won’t change any functioning in the brain, but pointed out that we can’t really know the impact on the brain until its done. At the same time, young brains are really elastic and over time may compensate for the loss.
A review of the MRI continues to show significant delays in brain development, which is consistent with his progress. However, the MRI does show brain development. It is still an underdeveloped brain, but less underdeveloped that it was last time we looked at it.
So our next step is to meet with the plastic surgeon and go from there. I am very much torn. I sounds like keeping things the status quo is really the safest option, though we will have to spend more time in prayer about this and evaluating the risks and benefits, its likely the route we will take. I really want to do the surgery for all the wrong reasons. Because I want him to look normal, to be able to ride in a car seat or swing in a swing with out craning his neck, to not have that dressing all the time, to not have to always sleep on his stomach or have stinky head. But at this point those are not the most compelling reasons to put in though a very intensive surgical process.
We have not entirely ruled out the surgery, we may discover more compelling reasons to do the surgery as we gathering more information. That being said, we will keep you updated as we learn more.
Thursday, February 24, 2011
Monday, February 21, 2011
You are the God who performs miracles; you display your power among the peoples.
so, its my birthday. 31 today. that's not even old, but i have a funny relationship with birthdays. I am always a little bit sad and even more so reflective on my birthday. Today has been filled with blessings as many friends have wished my happy birthday and made me feel super loved. my son's sweet little gift, to take a nap long enough for me to post i will pay for later (like 2 AM later) is being enjoyed right now.
though I will confess i had my moments today when i was tempted to walk the path of feeling sorry for myself, i am grateful for my friends and the gentle reminders from God, what his words were to me the last time i had a pity party. I can share that now because Gideon is peacefully sleeping and not DEMANDING his mamma time.
When i found myself feeling that way a few weeks ago I felt both comforted and challenged by God. He challenged me saying
"[I] perform wonders that cannot be fathomed, miracles that cannot be counted." Job 5:9
He asked me, "did you forget who I AM? I made the mountains and i can move them. I give the blind sight, I make the lame to walk. I rose from the dead and I can still heal your son." in other words. This isn't over yet. God is big enough to heal my son. He is big enough to heal how much I hurt.
He gently rebukes me saying from Isaiah 45
Does the clay say to the potter,
‘What are you making?’
Does your work say,
‘The potter has no hands’?
He reminds me that He is in control. That he has this all worked out. That he has chosen me, David and Gideon for a work that will glorify Him if we let him work instead of focusing on what we wish we had or what should have been.
And he comforts me from Matthew 5:4
"Blessed are those who mourn, for they will be comforted." He reminds me that it is OK to grieve. In my life right now I face some very real losses. Though I believe that tomorrow we could wake up to a Gideon with everything right where it is supposed to be, a world with no more bandage changes and infection control, right now I have a son who is pervasively delayed. Who cannot make eye contact with me and does not hold his head up. It is OK to be sad for those lost things and His desire is to comfort me.
Psalm 77:14
You are the God who performs miracles; you display your power among the peoples.
Saturday, February 5, 2011
tomorrow is a new day...at least that's what they say
I had a snow day on Wednesday. I was really nice to spend the day relaxing, well mostly relaxing i had to do some work from home. It was supposedly the blizzard of the year. Meh...this Michigander is unimpressed.
Having the day off made me realize how nice it would be to be a stay at home mom. I am seethingly jealous of those of you who get to do it. It might happen for me someday but for now, i work and i pray.
my mom came down this past week and was huge help. It was good to spend the time with her and nice to have someone help out around the house. Having her here meant that there were lots of little things, like cooking, i didn't have to worry about for the week. we are working on getting the G-man to eat more solids and cereal with fruit or veggies is thus far a pretty big hit.
today however has been completely unproductive. amazing how a good dose of jealousy and self pity can really destroy what could have otherwise been a nice afternoon.
someone who i love very much is pregnant. I won't tell you who, don't ask, she can tell you when she wants to. who is not the point. the point is, when i should have been happy for her i was angry and sorry for myself. I really don't like being around pregnant people, and in all fairness its not their fault i feel that way. i thought it would get easier with time. its not. add to that it is getting harder and harder to be around people with little ones Gideon’s age.
I love you all, don’t get me wrong. I am excited for you as i see your ultrasound pictures up on face book and your super cute little ones who are now smiling, giggling, laughing, crawling, making eye contact with you...but the more i watch his cohorts grow, the more i am confronted by how different my life is. And I am even more tempted to feel sorry for myself. To lock myself in and not expend the energy it takes to be excited for other people. Great these days is the temptation to just shut down and wallow in self pity.
I should be grateful to have him for this long, to have so many people in my life who live him and love me. I should be thankful that I am able to have a son at all. But today instead of being grateful for my loved one I cried for half an hour, feeling sorry for myself.
I am just so tired or hurting, of being broken. Tired of every time I am starting to feel “normal” finding that piece of my broken life like that piece of glass the broom missed on the kitchen floor-jabbed into your foot.
I should put on my big girl pants and get over myself. I should be thankful for the gifts I have been given and be happy for the people in my life who are expecting great things.
I’ll blog about that tomorrow when I get there….
Having the day off made me realize how nice it would be to be a stay at home mom. I am seethingly jealous of those of you who get to do it. It might happen for me someday but for now, i work and i pray.
my mom came down this past week and was huge help. It was good to spend the time with her and nice to have someone help out around the house. Having her here meant that there were lots of little things, like cooking, i didn't have to worry about for the week. we are working on getting the G-man to eat more solids and cereal with fruit or veggies is thus far a pretty big hit.
today however has been completely unproductive. amazing how a good dose of jealousy and self pity can really destroy what could have otherwise been a nice afternoon.
someone who i love very much is pregnant. I won't tell you who, don't ask, she can tell you when she wants to. who is not the point. the point is, when i should have been happy for her i was angry and sorry for myself. I really don't like being around pregnant people, and in all fairness its not their fault i feel that way. i thought it would get easier with time. its not. add to that it is getting harder and harder to be around people with little ones Gideon’s age.
I love you all, don’t get me wrong. I am excited for you as i see your ultrasound pictures up on face book and your super cute little ones who are now smiling, giggling, laughing, crawling, making eye contact with you...but the more i watch his cohorts grow, the more i am confronted by how different my life is. And I am even more tempted to feel sorry for myself. To lock myself in and not expend the energy it takes to be excited for other people. Great these days is the temptation to just shut down and wallow in self pity.
I should be grateful to have him for this long, to have so many people in my life who live him and love me. I should be thankful that I am able to have a son at all. But today instead of being grateful for my loved one I cried for half an hour, feeling sorry for myself.
I am just so tired or hurting, of being broken. Tired of every time I am starting to feel “normal” finding that piece of my broken life like that piece of glass the broom missed on the kitchen floor-jabbed into your foot.
I should put on my big girl pants and get over myself. I should be thankful for the gifts I have been given and be happy for the people in my life who are expecting great things.
I’ll blog about that tomorrow when I get there….
Tuesday, February 1, 2011
update 2.1.11
Its been a busy few months with Doctor appointments and changes for Gids. We have begun to see a pediatric specialist at the hospital where he was born. She specializes in babies with special or critical medical needs. We saw her in November and again in December. We also saw a neurologist a few weeks ago after having an EEG. In addition Gideon had an MRI last week that will hopefully get us connected to the neurosurgeon to evaluate if surgical interventions would be appropriate for Gideon.
The EEG showed no seizure activity but slowed waves. The neurologist suggested that we keep him on the antiseizure medication because of the risk of seizures associated with his brain malformations. He offered to be available for consultation but did not see a need to be directly involved with Gideon at this point as the seizures seem to be managed well. He noted that as long as he is seizure free we can continue to mange the medication by weight and not take blood levels.
Gideon continues to struggle to gain weight. He has not gained weight since August. He is healthy and still in a healthy weight percentile but we are getting concerns. He WILL NOT take a bottle. He will only nurse. this presents a huge challenge because I work full time!
About two weeks ago we put the feeding tube (NG tube) back in out of desperation. It worked well for about a week until he began to vomit blood. we took him immediately to the doctor who explained this was a result of the feeding tube.
I only had to see him vomit blood once to take the tube out. I am all calm now but don't think I wasn't moments away from seriously needing a xanex last week!
He is on reflux medication which seems to also be helping him sleep and will prevent a rehash of the puking nightmare if we have to put the tube back in. My mom came down last week (a HUGE blessing) and has gotten him eating a good amount of rice cereal, fruit and veggies mixed with breast milk and some of my amazing friends have been donating breast milk.
oh yeah and we discovered that I am one of those rare lucky women with too much of an enzyme called lipase. what that means is that when drank fresh my milk is fine, but left to sit, even stored by guidelines, develops a metallic sour taste. the only way to prevent this is to scald the milk immediately after it is pumped which is hard to do when I pump at work.
it has been hard not to get discouraged for sure. sometimes it seems like if its not one thing its another!
On top of all that, my insurance has decided that we don’t need hospice anymore. This decision is based on the fact that Gideon is not “declining”. What that means is that we have to figure out how and where we can get our supplies for his dressing change.
Everyday a new chance to walk in trust I suppose.
That is it for updates for now, I am going to work on setting aside time every Friday for a quick note. Thanks for your patience!
The EEG showed no seizure activity but slowed waves. The neurologist suggested that we keep him on the antiseizure medication because of the risk of seizures associated with his brain malformations. He offered to be available for consultation but did not see a need to be directly involved with Gideon at this point as the seizures seem to be managed well. He noted that as long as he is seizure free we can continue to mange the medication by weight and not take blood levels.
Gideon continues to struggle to gain weight. He has not gained weight since August. He is healthy and still in a healthy weight percentile but we are getting concerns. He WILL NOT take a bottle. He will only nurse. this presents a huge challenge because I work full time!
About two weeks ago we put the feeding tube (NG tube) back in out of desperation. It worked well for about a week until he began to vomit blood. we took him immediately to the doctor who explained this was a result of the feeding tube.
I only had to see him vomit blood once to take the tube out. I am all calm now but don't think I wasn't moments away from seriously needing a xanex last week!
He is on reflux medication which seems to also be helping him sleep and will prevent a rehash of the puking nightmare if we have to put the tube back in. My mom came down last week (a HUGE blessing) and has gotten him eating a good amount of rice cereal, fruit and veggies mixed with breast milk and some of my amazing friends have been donating breast milk.
oh yeah and we discovered that I am one of those rare lucky women with too much of an enzyme called lipase. what that means is that when drank fresh my milk is fine, but left to sit, even stored by guidelines, develops a metallic sour taste. the only way to prevent this is to scald the milk immediately after it is pumped which is hard to do when I pump at work.
it has been hard not to get discouraged for sure. sometimes it seems like if its not one thing its another!
On top of all that, my insurance has decided that we don’t need hospice anymore. This decision is based on the fact that Gideon is not “declining”. What that means is that we have to figure out how and where we can get our supplies for his dressing change.
Everyday a new chance to walk in trust I suppose.
That is it for updates for now, I am going to work on setting aside time every Friday for a quick note. Thanks for your patience!
reflections on January 7th.
Yesterday was the anniversary of the day my life got turned upside down. Turned upside down, thrown up against away and put through the spin cycle just for good measure. Yesterday as the anniversary of the day we went for our level two ultrasound to determine what was causing our baby's head to measure so small.
I've been keenly aware the past couple of weeks that yesterday was coming. I watched pensively as the days were i could say "last year we were normal, last year everything was OK. Last year at this time we were so excited..." slipped away.
In my life there is a very distinct before and after. Before January 7, 2010 and after January 7, 2010.
I would often catch myself saying, "remember last year this time. we were so excited. so full of hopes and dreams..."
what a difference a year can make. You might say 2010 was not our year. But then again, maybe it was.
These past few weeks i have been drawn to Psalm 84:10
"Better is one day in your courts than a thousand elsewhere; I would rather be a doorkeeper in the house of my God than dwell in the tents of the wicked." I don't think its inaccurate to paraphrase that verse by saying, "i would rather be the guy who answers the door in Gods house than to be high on the hog living in the mansions of the wicked"
2010 was by far the hardest year of my life. I have never cried more, hurt more or grieved more in any other year of my life. But it was also a year that I was drawn more near to the heart of my savior that i have ever been. That Psalm is constantly reminding me that no matter how much this hurt, how much i just want to make it go awayy sometimes. I am being made more like my Savior and that is worth something...
I've been keenly aware the past couple of weeks that yesterday was coming. I watched pensively as the days were i could say "last year we were normal, last year everything was OK. Last year at this time we were so excited..." slipped away.
In my life there is a very distinct before and after. Before January 7, 2010 and after January 7, 2010.
I would often catch myself saying, "remember last year this time. we were so excited. so full of hopes and dreams..."
what a difference a year can make. You might say 2010 was not our year. But then again, maybe it was.
These past few weeks i have been drawn to Psalm 84:10
"Better is one day in your courts than a thousand elsewhere; I would rather be a doorkeeper in the house of my God than dwell in the tents of the wicked." I don't think its inaccurate to paraphrase that verse by saying, "i would rather be the guy who answers the door in Gods house than to be high on the hog living in the mansions of the wicked"
2010 was by far the hardest year of my life. I have never cried more, hurt more or grieved more in any other year of my life. But it was also a year that I was drawn more near to the heart of my savior that i have ever been. That Psalm is constantly reminding me that no matter how much this hurt, how much i just want to make it go awayy sometimes. I am being made more like my Savior and that is worth something...
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