Quite a while ago Jolene had a checkup with her neurosurgeon where we were informed she had "Metopic Craniosynostosis", I haven't really gotten around to posting about it at all on Facebook or my blog. However, when I started this blog I really wanted to be a beacon of hope and camaraderie for other moms going through hardships with their babies, so I really think it's important for me to share this with all of you. When we first heard the doctor mumble something about her having craniosynostosis, he was casually examining her forehead. I was in shock that he would just let something like that slip out as nonchalant as if he were remarking on the color of her eyes. Our doctor has always tried to keep us calm when explaining Jolene's conditions to us, so I guess that was his intention. I tried to understand whether this was something like people having webbed toes and being double jointed, or something more serious like her Hydrocephalus. He explained to us that her prognosis was good due to the fact that we chose to have the ETV instead of the shunt done to correct her Hydrocephalus. He said that out of all the places she could have developed Craniosynostosis the front of her skull, "Metopic", is the best place, and also the only place you can have the synostosis and surgery can still be considered optional. He did let us know the risks of surgery vs. the risks of not having surgery. Together, my husband, the neurosurgeon, and I all decided at this point we would view the surgery as purely cosmetic. She does have some bulging in her forehead and a ridge has developed, but for the most part, no one even knows she's different than any other baby. There is chance it could worsen and she would most likely require surgery to correct it, but at this point it is a very risky surgery to consider for the off chance her condition will worsen. The surgery would mean a week of recovery in the PICU, a blood transfusion, and all the risk factors that come with neurosurgery, like blindness, brain damage, and death. We have been closely monitoring her condition and really feel like God is watching over her and wants us to have a peace about not choosing surgery. So here we are with a beautiful 11 month old Hydro Baby and Cranio Kid, and we couldn't be more joyous, proud, and at peace with how healthy and happy she is!
Jolene just turned 6 months old Wednesday! We gave her organic sweet potatoes to celebrate and she devoured them! I can't believe how big she's grown! She can sit up on her own now, chew on baby food and crackers, and she's been trying to army crawl around the apartment! She's been hitting all her goals with her ECI therapist. I'm so happy she's been developing and growing so well!
Jolene turned four months old January 5, 2014. Michael and I can not believe how fast that happened! All my new moms out there #amiright? She learns something new everyday, it seems, and is so talkative! Here are the facts.
Measurements: Jolene had a 4 month old checkup 1/21/14. She weighed 15 lbs. and 10 oz., putting her in the 75th percentile. She measured 25.5 in. placing her in the 90-95th percentile. Her head circumference is 45 cm., which is of course large (197th percentile), but her pediatrician and I agree she'll be growing in to it! She is wearing some 3-6 month, but that size fits tight on her. She mostly wears 6-9 month clothes and some 9 month. The 9 month clothes fit nicely but I'm trying to get some miles on the 6-9 month clothes before she outgrows them too! She is finishing up her size 2 diapers, but they barely fit her tummy and chubby little thighs, we've got some size 3 coming in the mail from Amazon. I would like to move her to cloth, at least part-time while she's home with me, but the man of the house is squeamish and doesn't like the idea of putting diapers back on her once she's soiled them, no matter how clean they are. Maybe we'll give it a go for baby no. 2? Oh yeah, there will be plenty more baby Harville's running around this home one day. She's been drinking 5 oz. every 3 - 3 1/2 hours while I'm at work; sometimes when I pump more she'll get a little extra. We've also got the go ahead on introducing sips of water. Nothing over 4 oz. per day, so we're just doing about half an ounce or an ounce in a sippy cup just to get her used to the taste and the feel of a sippy cup. She hates it though; she'll sip it and look at you with this betrayed face, like, "WHY oh WHY?" She definitely loves the feel of holding her sippy cup. She'll grab her cup and sprinkle water all over her chin and chew on the spout like it's a teether (babies can turn anything into a teether). Things to Remember and Milestones: Jolene is rolling around constantly, she loves to play in her blankets and wrap her self up like a mummy. She plays with anything you give her and marks everything with slobber. She is teething but hasn't cut any teeth yet. Her hair is so long! She is standing well when you hold her hands. She keeps trying to get mobile and gets really frustrated when she can't simply propel herself across the room with her toes. She seems to love meeting new people. She attempts to talk in this sweet soft voice in the morning; she'll open and close her mouth a bunch and make no noise, and then just start making these soft sounds like shes using her "inside voice". Usually when she gets bored with this method of communication she turns into daddy's little alarm clock and starts making this pterodactyl grunting noise and smiles; you can hear it all throughout the house. She loves crinkle toys and will stay entertained with one, if you let her, for a while. She has a new one my sister gave her that has rubbery parts to chew on and she loves it. She started 'swatting' at things and people. She loves kisses, as always, and will usually smile when you give them to her. She is also really giggly in the mornings. She loves cuddling on her daddy, and thinks he is hilarious. She started splashing around during bath time, and playing with her foam toys. Lately she's been getting so mad right before I come home from work, and then getting really excited to see me when I walk through the door; it melts my heart like butter. She's been sleeping for longer stretches at night, and it kind of makes me sad to see her needing me less. For example, I played with her for about an hour before laying her down, and she slept until around 1 or 2. We bought a Moby wrap and she seems to like it, but it's a little tricky when I'm running errands. She usually falls asleep in it, and I kind of have to hold her head up if I'm using the classic hold. She's been so congested lately and hates the aspirator, but what baby doesn't? Her skin has been getting dry, so we've been using some baby lotion from "episencial" that works amazing. It literally makes her skin feel like its coated in marshmallows, and it smells softly of sweet cherries. We started baby massage, and she seems to like it. She gets antsy when we flip her over in the middle of the massage, and she thinks I'm trying to play with her when I massage her hands and arms. She's becoming more and more enamored with dangly things, and usually has some of mommy's hair strands nicely wrapped around her sticky little fingers. She loves her cousin Noah and she gives him slobbery kisses on his cheeks and forehead. Hey everyone, sorry this post took so long! I wrote this a month ago, but have been waiting to post it. So, here it is, a little late. Soon I'll be posting a four month old recap, so make sure to read and catch up! So even though Jolene passed her 3 month old birthday, December 5th, I've decided I want to create a blog post every month detailing her growth changes and milestones. So we're starting off at 3 months.
Measurements: At three months old Jolene weighs 13.75 lbs and measures 24.5 inches. Her head circumference is 45 cm and she is wearing some 0-3 clothes, but mostly 3-6 months old clothes. She is in size 2 diapers. She's starting to out grow her newborn booties. She drinks every 3 hours about 4 - 4 1/2 ounces. Things to Remember and Milestones: She has been cooing a lot lately and really likes making this gorilla like sound "Oooo, oooh, ooo". She also makes "Nuhhhh" when she is angry. Every now and then I swear I've heard her say "Hi, muhmah, mah, dada", whether or not they were on purpose is another story. She started grabbing and playing with her toys this month. She also has been responding to voices much more. When I call home on my pumping breaks she quiets her crying if she is fussing, and will listen and try and talk back to me. Michael also says she smiles a bunch when she hears my voice. She just found her feet and really likes when you help her put them up to her mouth. She will smile really big and giggle. She laughs at her toy mirror that lights up and makes sounds. She likes this plush bear our friend Jason bought her, she smiles and giggles when you make it kiss her face. She also really likes this lamb teether my dad gave her on thanksgiving, she giggles or smiles when you make it squeek and she loves chewing on its ears and tail. She has this precious pink paper doll patterned blanket she uses everywhere she goes. She currently has three loveys, one bear, one lamb, and one 'mommy' lovey they give you in the NICU to give the baby your scent. She loves cuddling with her loveys, and she likes putting their ears in her mouth. She started bringing both her hands up to her face and its really adorable. It looks like she's praying, especially since she likes to fall asleep in this position. She really enjoys petting me while I nurse her. She also loves pulling on my hair and daddy's beard. She has been grabbing onto anything that she can fit in her little fists. Her little feet tend to get sweaty, and I don't know why, but I find it adorable. She drools, A LOT. She likes sticking her booty in the air and she loves to kick people. I think she has little dimples in her cheeks but it's hard to tell if this is just an effect from her little cheeks being so fat. Her therapist wants her to work on reaching for toys, making sounds like letters, saying momma and dadda, and holding her head strait. She lifts it up but tends to pull too far back. She started hating when you put her down to change her diaper, she is fine when she's in your arms but the moment you put her down she literally screams now. Her favorite part of bath-time is getting the warm water ran over her body and hair. She loves her cousin Noah. She is learning how to put her pacifier in her mouth and take it out, as well as hold her bottle. Jolene had her neurosurgeon checkup appointment last Thursday. It went well, thank goodness! I still get so nervous every doctor's visit; I'm always worried they're going to tell me bad news. So, Michael and I woke up at the crack of dawn to get ready, because her first appointment was for a head ultrasound at 8:40 am. We rushed out the door only to sit in traffic for hours. We finally reach our destination only to discover our GPS had navigated us to the Northeast Cooks Childrens Hospital. We were already running late and we rerouted to our correct destination. We showed up about 30 minutes past our appointment time.
Jolene was due September 3rd, 2013. I was induced two days later at 6:00 am. My water was broken around 8:00 am, and about an hour later things had progressed very quickly. Then, all of a sudden, her vitals began to drop. It took switching between various multiple positions to finally get them back up. I was given oxygen and the doctor explained to me that she would be preforming an emergency c-section.
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