Wednesday, February 22, 2012

Olivia is a perfectly healthy, and developmentally sound 4 month old

Since we are hanging around up here in Philly, Dr. Natarajan (our cardiologist) thought it would be a good idea for Olivia to participate in CHOP's Neuro Cardiac Care Program. Our appointment was this past Monday at 8:30am and we finally got out at 2:30pm! Six long hours after we got started I was so happy and relieved about Olivia's progress neurologically. I don't know if we have mentioned this on the blog yet, but Olivia was a part of a controversial brain MRI research study with her first surgery. Melanie and I wanted to sign up for all the research studies, but I was confused on Melanie's thoughts on the MRI study and I signed Olivia up for it. We had a few arguments about it, a few apologies pointed in Melanie's direction. It turned out some of Olivia's MRI showed a rarely seen damaged area on her brain. At the posterior of her corpus collusum (back of her head) is a part of the brain called the splenium. The splenium is a major pathway for communication between the right and left brain. While Melanie was ahead of me in realizing that we did not want to know this, I finally agreed with her ... I did not want to know this either. I just wanted my perfect cute little baby girl, not this worry about what the future would hold. Every baby does not take part in the MRI research studies which means no one knows how common this type of brain damage is. They have no idea what the future holds for Olivia's particular damage, it is just a picture of a white semi circle taking up about .5% (pretty tiny) of the MRI picture. During rounds with her first surgery this was always mentioned, as though it could be a cause for some of her problems, or unforseen problems. Which is exactly what Melanie didn't want... I am sorry still. Before Olivia got the stent placed in her Sanno shunt for her second hospitalization, they thought her brain might not be regulating her sats properly and that was the reason for low sats. Thankfully we have had 4 months of brain damaged Olivia and the doctors told me Monday what I already knew: someone should tell Olivia she has a little bit of brain damage. We have yet to see any seizures, or anything weird and out of the ordinary. All I have seen is a baby genius, holding her bottle occasionally, baby giggles aimed at me, crazy super head strength and abs of steel from trying to sit up in her car seat. Big blue eyes that follow my every move, hands that spend half the day in her mouth, half the day grabbing toys in front of her, hands that love to reach out and pull my hair. The natural female desire to see everything that is going on around her, and don't even think about holding her where she can't see all the action (her favorite spot is being held one handed like a sack of potatoes looking out at the world). We also have long conversations where we cover a lot of vowels and several goos, with lots of high pitched squeals. Just a regular old 4 month cutie pie! Back to the appointment We were set to see 5 doctors, $125 in co-pays. First up was the neur-cardio program coordinator and a cardiologist. They said her scar looked beautiful and could tell we were doing good scar massaging. Everything sounded great and she looked good barring anything the echo would reveal. Second was a speech therapist. Olivia cooed and gooed and passed all the speech tests for her age. She also listened to Olivia drink a bottle and though that she was a champ at eating. A lot of heart babies can't coordinate breathing and sucking. Next up was Dr. Licht, the neurologist and researcher on the MRI study (a great guy). Her muscle tone is equal on the right and left side of her body. Everything seems to be progressing well in his opinion. Olivia was pretty tired at this point, but after a short 10 minute nap she was showing her tricks to Dr. Licht too. Lots of following objects with her eyes and head, up, down, left, and right. Then came the physical therapist and occupational therapist. It was like a fast paced tag team wrestling match as they both vied for Olivia's attention with their various toys and things they both wanted to test. Olivia was kicking butt and taking names even though she was still pretty tired. It also helped that they had fun looking toys. It turns out Olivia is doing some things a 5 month old would do, and is appropriate on several other things for a 4 month old. The biggest problem is ...... tummy time. She failed tummy time testing. The reason is because we don't do any tummy time with her. Last but not least the cardiologist came back in from looking at the echo. She told us that Olivia's pulmonary artery was very small. She was concerned but not too concerned. Her reasoning was that a Sanno shunt is usually used for small arteries which in turn means everything with Sanno shunt babies is usually smaller. I will basically just continue monitoring her pulse ox and make sure it doesn't go below 71%. 20 minutes after that we got a few pieces of paper that summarized everything and all the findings and by 2:45pm we were on the road home. Phew! A lot of worry was wiped from the slate on Monday. It is tough but very worth it. Being the primary caregiver of your baby strips a man of his proud manliness, so much so that I want to end this blog post on an emotional note. The thing that drives this emotionally stressed out man to the very brink of tears of joy is Olivia's smile. Olivia gives me the biggest smiles. Every smile has purpose and is usually directed at me when we are playing and talking. It is the most amazing smile, that melts away all my fears, concerns, worry, stress, doubt. It is Olivia's way of telling me she loves me everyday, and when Melanie gets here Friday she's going to give her mommy all those loving smiles as well. After 3 long weeks I can't wait to see Melanie get some Olivia smiles. Someday when I get back to New Orleans i'll be given back my man card, but in a little while when Olivia wakes up I can't wait to see that beautiful smile that says "good morning dad!"

1 comment:

  1. I like to read your blog and updates about Olivia. My nephew was also born with HLHS. He got his first surgery and was doing well but started having issues with his O2 levels.No one in our family had ever heard of it. Unfortunatly he got his wings at 6 weeks old. It has been a very hard thing for our whole family but most of all his parents. I pray everyday for Olivia and hope that she gets every chance my nephew didn't.

    I decided to comment on this post because my son was born at 30 weeks. He weighed 2.5lbs and stayed in the NICU for 57 days. We had plenty setbacks but made it through. He was diagnosed with Periventricular leukomalacia (PVL), which is not anything I wanted to hear. We were told he would probably have problems walking, talking, hearing, seeing and all kinds of upsetting things that as new parents, we did not want to hear. However, a children's neurologist at Oshners gave us some hope. He said that sometimes a child's brain compensates for what damage they may have. Luckily, my son will be two next month, and he walks, talks, plays, sings and is a healthy little boy. He is a little behind meeting his milestones, but is meeting them.

    Miracles happen everyday, I have seen them with my own eyes.

    Keep the updates coming, Olivia gives me hope for babies born with HLHS.


Olivia loves to hear her mommy/daddy read your comments!