"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
Saturday, December 29, 2012
Friday, December 7, 2012
|Ready for takeoff!|
|When in Philly, get a cheesesteak....|
|Playing with Daddy:)|
|I tried to convince her that it was really "vacation". We went to the pool:)|
|CHOP has hospital gowns in her color!|
Sunday, December 2, 2012
Tuesday, November 20, 2012
Pure, sweet joy, right??
Wednesday, October 24, 2012
Sunday, October 7, 2012
Monday, September 17, 2012
Friday, August 31, 2012
Saturday, August 4, 2012
48 hours later, Meghan's cultures are still negative (thank you God!). Our surgeon called us today and after we talked for awhile, we decided that the plan for now is to turn her shunt back down again on Monday, and see if that resolves her behavior issues, and hopefully the swelling around the shunt. If not, we may end up back in surgery to replace the valve with a different kind that might help seal off the hole in her skull a little better. At this point, we aren't sure why this keeps happening, and it may have something to do with the fact that apart from her hydrocephalus, it appears that we may be dealing with another type of brain malformation as well, causing the pressures to be different than they would be with straightforward hydrocephalus.
I can honestly say the only thing holding me together right now is my family, my dear friends, and a lot of prayer. Even our doctor said we need to take things one day at a time. There is a significant amount of uncertainty that builds when for many babies, this is a "once and done" procedure- at least for a while- and we just want to get to a place where she feels good enough to start making some serious developmental strides! Since the surgery, she has learned to grab her toes- despite the fact that she cannot roll over, or even hold her head up on her own yet. We know this little girl is fighting through this, and we want so badly for her to continue to progress to whatever her capabilities will be. The back and forth can be a little discouraging at times.
Joe and I were talking on the way to the hospital the other day, speculating how different our lives would be if Meghan were like typical babies. We both agreed that while we wish every child could be born healthy, we feel our lives are different, but indeed so much better because of Meghan. She adds a certain weight to life. The kind that puts sorrows and hardships into perspective, gives us a great compassion for children (and their parents) with special needs, and makes us appreciate every day in a way we otherwise would not. It also means that when we feel joy, we feel it times a thousand- so much so that as they say, you are able to dance in the rain. We have hope because we serve an awesome God. So despite the uncertainty, we wait, and put our hope in the one who is writing her story, and ours.
|Working on my reach...|
|This is what pitiful looks like.|
Sunday, July 22, 2012
|I know this was on the last post, but she looks so stunning in blue polyester I couldn't resist...|
Smiling before the MRI...
|Smiling while waiting for a bed...|
|Smiling after surgery...|
|Smiling the day after surgery....|
|Smiling this morning. Pure joy:)|
Friday, July 20, 2012
Yesterday was a very, very hard day on both of us. She had to endure at least 9 needlesticks, 2 IV's, not being fed before her MRI, and general anesthesia. She did well, and came out of it without any problems. We found out just some preliminary information from the MRI- she has something called a Chiari Malformation, and a fatty filum that looks like a tethered cord. Both may require further surgery. She also said that her brain doesn't look like purely hydrocephalic either. There may be an underlying issue in how it is forming. We don't have any more information yet as she was still waiting for the official reading.
We were supposed to be first in the OR today, but there was an emergency so we are waiting for her new 12:00 OR time. I will try and update as soon as she is done and we know she is well.
Thank you everyone for praying for us. This means more to us than words can express.
Wednesday, July 18, 2012
|My sweet girls!|
|Why we were worried...|
|Being a major trooper for her ultrasound, and this was AFTER they did her brain!|
Saturday, July 14, 2012
|Working my core! And my neck! And totally rocking my hairdo!|
|I can DO it!|
|This is what 3 appointments in one day looks like...|
|And this, is pure JOY.|
Thursday, June 21, 2012
We've also been back and forth to the neurosurgeon since our last post. After we turned the shunt down again (increased the amount of fluid coming out), Meghan's eyes got much better- she was able to look around after just 24 hours. However her fontanelles, head circumference, and sutures didn't change. She had a really fussy week last week, and that coupled with the other things that didn't change with the faster setting we were a little concerned. Last Thursday I took her back to the hospital to have her looked at again. This happened to be the first trip to main campus with just Meghan and I. Usually I have had company. When you travel an hour both ways, and have to navigate the city that is the main campus of Cleveland Clinic with an infant in tow, it's nice to have an extra set of hands! At the appointment, our neurosurgeon thought that perhaps her brain had begun to fill in around the catheter and that where the tip was surrounded by fluid before, it may have become partially blocked by brain tissue causing an intermittent occlusion of the catheter, and may be an explanation for Meghan's symptoms. This would mean surgery to re-position the catheter. So she sent us down to pediatric radiology for a brain Ultrasound. At this point, I'm terrified, but I have no choice other than to hold it together and be Meghan's mom. We were directed to wait in the long hallway of a basement that houses the radiology department, with some chairs that serve as the "waiting area". Meghan was starting to get fussy, so I swaddled her up and started our "walk" (if your a parent, you know what I'm talking about!) The apprehension began to set in, and I started to feel very alone in that space. I made a quick phone call to Joe, and started praying for my little girl. There was an older woman waiting at the other end of the hall, and before I knew it, this perfect stranger had her arms around me and was hugging me asking what my baby's name was, and could she pray for her. I was so very grateful for her comfort! Seconds later she was called back for her test, and I waited our turn while Meghan snoozed. The Ultrasound went well, only a little protesting, and we went back up to see the surgeon.
Dr. R came out, and said her Ultrasound looked great. The pressures in her head were normal, her brain is beginning to fill in, and her corpus callosum (the part of the brain that connects the left and right hemispheres) which was significantly compressed at birth is no longer "smushed". My jaw was nearly on the floor. Not only did we not have to go for surgery, we got amazing news about her brain to boot! It was kind of a hallelujah moment!
As I was driving home I had a while to reflect on what had just happened. Since I was by myself with the baby, I had no choice than to lean on the Lord for strength when faced with fear. Some people might call that sweet woman's presence a coincidence, but I choose to believe otherwise. I felt that in that moment, it was the very present love of Jesus that was shown in exactly what I needed- a hug, and a prayer. I learned that I may have to be stronger than I want to be at times, but that I don't have to rely on my own strength. He is always there.
"And do not forget kindness to strangers, for by this, some who, while they were unaware, were worthy to receive Angels" Hebrews 13:2
|So very grateful for these moments...|
|New this week: SHE LAUGHS!!!|
|Kinesiotape in Action...and for those of you that don't know what a shunt looks like, here it is. There is also a stunning hairdo in this picture...|
Wednesday, May 30, 2012
Friday, May 18, 2012
Saturday, May 5, 2012
I'm pretty excited to share these pictures! To have the opportunity to have them done, and for Meghan to be healthy enough to participate is a gift beyond words right now. A dear friend and photographer came to the NICU to take some pictures of Meghan when she was a couple days old, but with everything going on, we never got to have a newborn family session. SO, at 7 weeks old, Meghan made her official debut in some family photos with everyone in them:) A big thank you to Rachel Marie Photography for her talent, and the very sweet way she was able to capture our family, Meghan, and the essence of my Addie (who barely held still long enough for a picture!). She had some really fun outfits and props! Head on over to her blog to see more, and to see some of the amazing work she does: www.rachelmariephotography.com/blog
Miss M. has been doing great! We're rolling with Physical Therapy now, and starting Occupational Therapy and Speech therapy this week. The therapist we are working with is wonderful, and as it turns out she is the one that saw Meghan in the NICU, and works closely with her neurologist. She gave us some great exercises to do with her, and in just a couple weeks we can see her improving! We're able to get her neck to relax past her midline, and where are arms have been held close to her body, I can now raise up her arm on the right, and the left with only a little complaining:) Her 2 month pediatrician follow up went well, and she's up to 9lbs, 6oz. 20th percentile....she's a little peanut!
This week....drumroll.....NO DOCTORS APPOINTMENTS! Woo hoo! Just therapy:) Next week we go back to the neurosurgeon, and if all is well we may not have any appointments for a couple weeks. Thank you everyone for praying for her, and please continue to pray that everyone stays healthy and Meghan keeps progressing well with no shunt complications!
Thursday, April 26, 2012
Any mother rejoices over her child's first smiles. It's the stuff that makes all the first sleepless nights so worth it as you see the little person you have been caring for communicate their happiness. Having this child has taught me not to take a smile for granted. In the moments when she smiles, absolutely nothing else matters. This week, we are celebrating smiles!! Happy 8 weeks old today Meghan:)