She also is continuing to have the cutest outfits (IMO).
Sunday, February 23, 2014
I'm so CUTE!
Nic is enjoying her Pack and Play more and more each day. She is developing a large following of stuffed toys!
Saturday, February 22, 2014
PT baby Steps
At three months, and more apparent at 4 months, I began to notice the developmental differences between Nic and other 3-4 month old kids. Nic cannot left up her head at all. How could I expect her to with a head larger than mine? Nic was not laughing responsively like some babies were, etc. I downloaded multiple developmental checklists like this one,
http://www.cdc.gov/ncbddd/actearly/pdf/checklists/checklists_4mo.pdf
and told myself to wait. I checkoff and date the items as she meets them.
I told myself not to get wrapped up in the details, but rather, I needed to focus on the progress. AND Nic was making HUGE progress. Then, as if the universe could feel the pain in my heart, hear the silent worry, it responded. At 4 months, Nic turned into the incredible HULK.
On February 10, 2014 while holding up or supporting her trunk, Nicolette held up her head for 5 seconds. This friday (2/21/14), Nicolette made strides in tracking colored objects, head turning (without her helmet, engaging her core muscles with head support, and holding her head in an upright position for 5-7 seconds. My heart melted when Nic repeatedly held her head up with mild complaint for 3-5 seconds, approximately 5-7 times before telling us she was wiped out. She is even tolerating baring weight on her feet!
As many of you now, the doctors at Children's Mercy really beat Nic's vision impairment into my head. Nics optic nerve and occipital lobe were very underdeveloped as the inter cranial pressure was so great when it was time for them to form. We were told she would be blind. In the NICU, we could tell she reacted to light. At 3 months, she began to stare at ceiling fans and started to track black and white toys. Now she is tracking colored items!!! There are many indicators that her vision is indeed impaired (e.i., needing to hold B/W objects very close to allow her to focus; Nic would stare at something, look away and then refocus again much like I see with children that have CVI; failure to return facial expressions). However, yesterday Nic begin to responsively return smiles. My heart melted. I know Nic will accomplish her milestones at her pace on her own time. I see her kicking, twisting, and crying at animal sounds that scare her (e.g., the lion on egg babies). Everyday, I am filled with amazement at how far Nic is from the "unresponsive child" I was to bare. I feel so bless to know such a strong person. I'd like to think she got some of that from me :)
Sunday, February 16, 2014
Valentine's DAY!
Nicolette celebrated her first Valentine's Day! She even activated her core muscles during PT (with head support)! We couldn't believe it; she just sat right up! After PT, we spent the day making the best presents (see photo below). Dad got the best print. It took three people to paint her footprints, one to paint, one to press her foot and one to clean! We then celebrated her 4 month birthday the following day! What a weekend
Friday, February 7, 2014
Hydro Families and Austin
I'm back logging posts for a little while so I can get caught up. I will try to reorder them once I finish so at least they can be read in chronological order. In the meantime I also have to post some more current happenings.
Two weekends ago, Nic and I went down to Austin to meet many of the families that helped me through pregnancy. This meet up was important because while no two hydro kiddos are the same, these children were similar to Nicolette in one way or another. A little boy there and Nic shared close to the same head circumference (56cm I believe and Nic's at north was 58cm). A little girl there also has a cyst like Nicolette although the placement is different (posterior as opposed to right smack in the middle). Another child there had hydro to the same severity as Nic though she was birthed much sooner than Nic was (32 weeks as opposed to 37). There was also another little girl that was as sweet as could be. Nic and her share hydro and both have shunts. :)
Friday, I drove to OKC to meet my hydro mom lunch buddy. She travels to Wichita frequently, so it was nice to actually she her home and meet her precious five year old that I had hear and read so much about. Saturday, we drive to Texas (6 hours). Nic did really well and traveled in her car bed. Saturday night was a meet and greet pizza night. It was nice to actually talk to members of this group in person. It was nice to have people hold Nic while I pumped, to eat dinner without worrying about Nic screaming and it getting cold. Sunday was the best pancake breakfast I have ever had, a long talk with one of my favorite hydro mom, a trip to an inclusion, multi sensory playground (you can see in the picture below, Nic is not a huge fan of the great outdoors), and a dinner at a nice steakhouse. Monday, we drove back to OKC, and by Tuesday, Nic and I were home... with a cold that she is still fighting!
While the events in Austin were laid back, the impact was profound. As a parent, I cannot explain the overwhelming feeling of amazement and reassurance. Each parent became my own hero in one way or another. Each child was amazing and a miracle in his or her own way. A nonverbal child signing concern when Nic was crying. A child with a brain so abnormal, neurologist stop and stare for a large part of every appointment drinking everyone's chocolate milk because hey, they are HER cups. When I first met the little boy, he smiled and said, "What's your name?" I told him Nicole. "It's so lovely to meet you Nicole! Can you help me find my chocolate milk?" OR when we were on our way to the restaurant Nic was super hungry. I was pumping in the back when one child asked me what was wrong with the baby. When I said she was hungry, the child looked at me straight in the face and said, "Well, you know what to do!" Yes, yes Parker. I do.
I guess what I'm getting at is through pregnancy I had so much fear. I think anytime a healthcare provider tells you your child will never function like a typical child, you die a little inside. OK, you die a LOT inside. Parenting is met with total fear of the unknown; parenting a child with special needs is met with crippling fear. How will the world except your child if they have a different world of their own? It is terrifying. If you're like me, you research everything. You make the best decisions you can medically and emotionally. You make a schedule and cross every PT's T and dot every medical release form's I. You may even let your marriage fall by the wayside in looks to improving your child's future. You prepare for the worst and hold desperately onto any kind of hope for the future. You move day by day by day, and occasionally, you drive a 3 month old 9 hours to a different state to just sit by people who KNOW what you're going through, people who have been on the same road for much, much longer than you. You look around and see that they are happy, they still have hope. Then slowly, you wake up and realized that you have refilled your hope bucket, and that's enough to carry on, maybe even carry on with a smile.... Here's to you Nic. Here's to you telling people it's so lovely to meet them or to you pulling off the baby's helmet because you what to see it up close, to you drinking everyone's chocolate milk while walking after having 11 brain bleeds, to you sitting in the car and deliver the justice of the must profound logical response. Yes, the future does have light; I can see it as we walk through the tunnel.
Two weekends ago, Nic and I went down to Austin to meet many of the families that helped me through pregnancy. This meet up was important because while no two hydro kiddos are the same, these children were similar to Nicolette in one way or another. A little boy there and Nic shared close to the same head circumference (56cm I believe and Nic's at north was 58cm). A little girl there also has a cyst like Nicolette although the placement is different (posterior as opposed to right smack in the middle). Another child there had hydro to the same severity as Nic though she was birthed much sooner than Nic was (32 weeks as opposed to 37). There was also another little girl that was as sweet as could be. Nic and her share hydro and both have shunts. :)
Friday, I drove to OKC to meet my hydro mom lunch buddy. She travels to Wichita frequently, so it was nice to actually she her home and meet her precious five year old that I had hear and read so much about. Saturday, we drive to Texas (6 hours). Nic did really well and traveled in her car bed. Saturday night was a meet and greet pizza night. It was nice to actually talk to members of this group in person. It was nice to have people hold Nic while I pumped, to eat dinner without worrying about Nic screaming and it getting cold. Sunday was the best pancake breakfast I have ever had, a long talk with one of my favorite hydro mom, a trip to an inclusion, multi sensory playground (you can see in the picture below, Nic is not a huge fan of the great outdoors), and a dinner at a nice steakhouse. Monday, we drove back to OKC, and by Tuesday, Nic and I were home... with a cold that she is still fighting!
While the events in Austin were laid back, the impact was profound. As a parent, I cannot explain the overwhelming feeling of amazement and reassurance. Each parent became my own hero in one way or another. Each child was amazing and a miracle in his or her own way. A nonverbal child signing concern when Nic was crying. A child with a brain so abnormal, neurologist stop and stare for a large part of every appointment drinking everyone's chocolate milk because hey, they are HER cups. When I first met the little boy, he smiled and said, "What's your name?" I told him Nicole. "It's so lovely to meet you Nicole! Can you help me find my chocolate milk?" OR when we were on our way to the restaurant Nic was super hungry. I was pumping in the back when one child asked me what was wrong with the baby. When I said she was hungry, the child looked at me straight in the face and said, "Well, you know what to do!" Yes, yes Parker. I do.
I guess what I'm getting at is through pregnancy I had so much fear. I think anytime a healthcare provider tells you your child will never function like a typical child, you die a little inside. OK, you die a LOT inside. Parenting is met with total fear of the unknown; parenting a child with special needs is met with crippling fear. How will the world except your child if they have a different world of their own? It is terrifying. If you're like me, you research everything. You make the best decisions you can medically and emotionally. You make a schedule and cross every PT's T and dot every medical release form's I. You may even let your marriage fall by the wayside in looks to improving your child's future. You prepare for the worst and hold desperately onto any kind of hope for the future. You move day by day by day, and occasionally, you drive a 3 month old 9 hours to a different state to just sit by people who KNOW what you're going through, people who have been on the same road for much, much longer than you. You look around and see that they are happy, they still have hope. Then slowly, you wake up and realized that you have refilled your hope bucket, and that's enough to carry on, maybe even carry on with a smile.... Here's to you Nic. Here's to you telling people it's so lovely to meet them or to you pulling off the baby's helmet because you what to see it up close, to you drinking everyone's chocolate milk while walking after having 11 brain bleeds, to you sitting in the car and deliver the justice of the must profound logical response. Yes, the future does have light; I can see it as we walk through the tunnel.
Thursday, February 6, 2014
Nic's 4th Surgery, A New NSG and a Fancy Helmet
As many of you know, we got to Duke and back. Nic is doing great. Unfortunately, we did need to have an additional shunt revision. This surgery turned out to be a blessing as it led us to Nic's new neurosurgeon. It was through this surgeon that we finally got Nic a protective/head shaping helmet. The best part about the helmet is that is gives her more protection, and thus, more people can hold her! We celebrate every step that gets us closer, and closer to being a "normal" baby. Nic is rocking at PT. She is meeting every milestone with the exception of motor skills involving head control. This leads us to the next part of her journey, the question is whether or not to get CVR for Nic. CVR is a Cranial Vault Reduction surgery that would decrease Nic's head size (remember it's bigger than her mom's head right now) and allow her to gain head control faster. Remember with head control comes rolling over, sitting up, standing and walking, skills Nic is not supposed to gain until she is 3-5 if ever. Dad and I are buried in research. Until the next update, enjoy these sweet pics!
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