Makenna Claire is 7 months old!
One exciting thing about this month has been watching Makenna try solid food for the first time. We have been giving her a new type of food every four to five days because she is prone to reactions. In general we believe that food before one is just for fun, so we are more focused on the experience of eating, than the actual act of ingesting the food. Until one she will continue to get all of her nutrients from milk, but we want her to be exposed to as many healthy foods as possible early on. With most foods (as appropriate), I let her explore the food in its original form; however, she isn't ready for full baby-led weaning because she still can't sit up. It is fun watching her see, feel, smell, and taste all of the new foods, flavors, and textures. She usually loves getting hands-on and isn't afraid of getting a little messy! Since she doesn't eat too much during her exploration time, after she has played with the actual food, I give it to her in a purée form from a spoon as well. This month she has tried sweet potato, peas, avocados, green beans, carrots, bananas, and peaches. She absolutely loves everything except green beans and bananas (we'll keep trying), and unfortunately she has developed rashes from sweet potato (her favorite) and avocado (hopefully she will grow out of that allergy quickly!).
This month flu and RSV seasons are (more or less) wrapping up and her immune system is a little stronger, so she has been getting to go out a little bit more. We are still being extra cautious though by only going out during "down times" and making sure trips are kept short. I also usually put her in a front carrier so that other people won't be as tempted to touch her. It has been fun experiencing (kind of) "normal" life with a baby and she loves socializing and seeing the sights! As of now she has been to Publix, Wal-mart, Lowes, Outback, Applebees, Chuys Mexican, and the park!
This month she also got to visit her great grandparents for a couple of days, interact with a special friend from the NICU (who was also on ECMO), and participate in the CDH awareness walk at Shands with several other CDH families we have come to know and love over the last few months! After so much time avoiding people, it is fun to see my little social butterfly smiling and enjoying the company of others. She (fortunately and unfortunately) draws a crowd wherever she goes. People can't help but notice her enthusiastic open-mouth smiles and her ability to say "hi" so young. Everyone who meets her says she is the most social baby they've ever met.
Medical update: Makenna's MRI at the hospital showed enlarge ventricles so we have been monitoring her for hydrocephalus. Since coming home her head circumference kept creeping up percentile ranks each week. When she got to the 75th percentile we decided to contact Dr. Kays. They weren't too concerned, but wanted us to meet with the neurosurgeons at Shands to be sure. By the time we got to her appointment a month later, her head was in the 95th percentile. I suspected they would say she did have hydrocephalus; however, the difference between the 50th and 95th percentile is only 1.5 centimeters so it doesn't take much to go up in ranks! Much to my surprise, at the appointment they felt she just had a big "CDH head" (apparently most CDH babies have big heads!), but they decided to go ahead and do another MRI to be sure. As I suspected the MRI showed an area of concern. They discovered that she has a cyst in her brain, about the size of a ping pong ball, that is obstructing her ventricles and causing a build up of fluid, aka hydrocephalus. I never would have guessed she had a cyst, but I am thankful that I followed my intuition and contacted them when I did. In two weeks we are going to go back to Gainesville for a surgery called "endoscopic third ventriculostomy." They will go into her brain and poke holes on the cyst. This will allow it to drain and hopefully help the fluid to being flowing without needing a shunt. We will continue to monitor her head circumference over the next 6 weeks. If it continues to go up, she will need to go back to Shands for another surgery to implant a shunt. I really hope and pray that the third ventriculostomy works and no shunt is needed. As scary as brain surgery is, after 6 months of obsessively measuring her head, I am glad to finally have clarity as to what is wrong and be able to start working towards making her better!
Physically this month has been similar to last month. She continues to despise tummy time and still hasn't learned to roll over or sit up yet (due to delays from being so immobile in the NICU, as well as from the hydrocephalus). Despite the challenges she looks wonderful when she is on her tummy though. She is able to hold up her head and support herself with her elbows. She has also started being willing to play on her side more and will roll to her side to play with toys, so that is a great start. Makenna can sit well with very little support and will even play in the seated position, but her physical therapist believes all the extra fluid in her head is making it difficult for her to sit on her own. We are hopeful that after her surgery this month she will be able to finally begin siting and rolling soon. You can tell she wants to move and gets frustrated when she physically can't get places on her own.
Even with the not so fun aspects of this month, we are enjoying life with our wonderful little girl. She is so funny, smart, and amazing that it is impossible to look at her and not smile. She has a way of lighting up the room and putting things into perspective. I look at her and all our day to day worries and stresses seem so insignificant. She has been through more than most adults will in a lifetime and yet she is still happy. She is so inspirational and so many people have and will continue to learn a lot from her. I admit, sometimes I catch myself thinking "Why us?" Or "It's not fair!" But then I look at her and I am reminded that if we didn't have these struggles, we wouldn't have the Makenna we know and love. Just one of her amazing smiles makes it all totally worth it...and we get hundreds of smiles a day. 
Height: 26 inches
Weight: 15lbs 2oz Eyes: Still grey, sometimes they look brown and sometimes green.
Hair: Dark brown and getting longer. We have been having fun with pigtails and ponytails this month!
Clothes: Some 3-6 month clothes fit, but she is wearing mostly 6-9 month clothes due to length.
Diapers: Size 3 honest company diapers and one-size cloth
Food: She is still a huge fan of nursing, but her favorite solid foods are sweet potato and pears.
Sleep: Still waking up 5-8 times a night.
Favorites: Makenna really loves her bunny lovey, her activity jumper, napping in our bed, and taggies.
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| Every time Auntie visits, Makenna gets a big bow and a tutu! |
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