Sunday, 30 October 2011

Addison's First Year!!!!

Addison's First year!

Well I guess when I decided to write a blog I should have thought about all of the background information I would have to put together so that everyone could have a clear picture of the life of our princess from day one. Well her is my best attempt in as few words as possible to fill you in on the first year of 
Addison Marie.

Birthday- October 1st 2010.
I was induced the night before at 7 pm and went into labor within minutes by 10:00pm I was in great pain and by 2:00 I was getting ready to go downstairs to the birth unit. When I got there they did an epidural which might I add took 10 tries...and I mean 10, I had the poke marks and a nice bruise to prove it. 
Throughout the labor Addison's heart rate was dropping but they weren't concerned and kept fixing the monitors they had put on her head to monitor it. I only had to push for 1 hour and 45 minutes before our beautiful baby girl of 7 pounds and 7 ounces was born at 10:04 am! Well as dandy as that all sounds it didn't 
quite have the fairy tale ending we had all hoped for... we just have made our own fairy tale which is just as special! Addison was born not breathing and was given chest compression's and oxygen and immediately sent to the NICU. So in a flash we went from the best moment of our life to a parents worst nightmare full 
of un-answered questions and uncertainites. 

Week 1-Throughout the first week we had many ups and downs, I could sit here and give all the details but it isn't something I feel like bringing back right now, maybe a post in the future will cover life in the NICU. Summed up she was devastating, couldnt keep her temperature up, and having seizures so they kept her from coming 
up stairs. They drugger her up with seizure meds and she was basically asleep until October 5th when she started opening her eyes. On October 6th she started eating through a NG tube and we got to hold our little angel and have our first family photo taken! We got her diagnosis this week of HIE Sarnat 2 we really 
had no idea what this was or what our future would hold.

Week 2- This week we spent working on increasing the amount of formula she took through the ng tube while also continuing breast feeding and pumping as we hoped so badly that one day she would be able to. This week was also the first time we left her in the NICU it was Thanksgiving and we went to Tyler's parents for dinner. We were only gone a couple hours but it sure did seem like forever. 

Week 3-This week had a lot of bitter sweet moments. They did the second MRI and gave us Addison's final diagnosis and what they thought her life would be like. This was very hard to hear and accept as parents. 
We spent this week getting her ready to come home. We learned how to insert the NG tube along with all the steps that come along with working with a feeding tube. On October 18th we could not have been happier and we brought our little angel home!

Week 4- This week was our first week at home as a family. It was spent adjusting to having a baby at home and working on getting her to take the bottle. By the 24th of October she was fully bottle fed! 

Week 5- Addison was more awake and alert this week. She began waking us when she was hungry although I was pretty obsessive about making sure she had the right amount of milk each day. We had family pictures taken this week! Addison had her first Halloween and went trick or treating even all the way to Debert to see Nanny and Poppy Mills and Milford to see her first friend Liam!

Week 6-Already this week Addison began to outgrow some newborn clothes. She began vomiting a lot and we took her to emergency because it was projectile. After lots of tests she was just fine and weighed in at 7 pounds 8 Oz. This is the week she started taking Zantac for reflux

Week 7- Addison was drinking 120mls from a bottle 6 to 7 times a day. We put a wedge in her crib to help with her reflux. She Was really in love with her soother by this point. This was the week when colic became very clear. She was fussy every evening and was only soothed by running water or bouncing on an exercise ball. 

Week 8- This week was very special because Addison's first cousin Jared was born. Addison also was putting herself to sleep after nighttime feedings. She had two nights this week where she only woke once. Feeding times were harder and she cried through most of them. 

Week 9- This week she started prevacid for her reflux and feedings did get easier. She didnt eat much all weekend. Addison rolled from her stomach to her side. She stayed with her Nanny and Poppy Halloran while we went to visit Jodi and Travis.

Week 10- This was a rough week. We had two visits to emergency and one night we had to sleep over because she had the croup and the other was because you had bile in your vomit. Our basement was finsihed this week!!!! 

Week 11- Another very special week because Addison's best friend Ava was born and Addison started to smile!!The first smile was at the hospital when we were visiting Ava and she smiled at Ian. We started doing physio on Addison everyday.

Week 12- The colic started being every second night instead of every night. We started working on exercies for midline. Her head circumference was noted that it wasn't growing very fast. Weighed 10 pounds, 8 ounces

Week 13- Addisons First Christmas! No more colic and it felt like we had a new baby! She started sleeping through the night.

Week 14- Addison's First New Years! Addison had her first sleepover and it was at the Nutby Cottage for New Years Eve! Car rides were not fun at this point but if we put static on the radio it would make her calm down some of the time. Addison started wearing 3 to 6 month clothes.

Week 15- Another special friend was born this week! Joesph was born and we went to visit him with Ava!
Addison rolled from Belly to back. Weighed 11 pounds, 6 oz. We started noticing more and more how stiff her arms were. She still was sleeping through the night with the odd time waking up once. 

Week 16- Addison had 3 or 4 half hour naps a day by this point. She started using her legs to stand up. She could hold her head high when put on her belly. The tracking of objects with her eyes seemed to disappear. She liked to be held out on your arm(colic hold) when upset. 

Week 17-Smiling more on command this week. Tracking the red and black book. Loved her green turtle. It was beginning to be very noticeable how spoiled she was. This week she started waking for a feeding at night we believed it was because she didn't take enough during the day.

Week 18- Slept in her own crib!!! Started iron supplements and adding powered formula to her breast milk. She was having 5 bottles a day. This week was not so good. Eating was becoming more of a challenge and she didn't gain enough weight. 

Week 19- Emergency visit because not eating the same day as appointments and a snow storm so we ended up having to stay at a hotel in Halifax because it was a blizzard outside! We have been turning the running water on in order to get her to drink her bottle. Prev-acid dose was increased. Had an EEG no seizures! Dr. Gordon told us at this point he didn't think she would be doing so well.

Week 20- 4 month needles! Addison and Jared's Baptism. First time swimming! We began trying everything to get her to drink from a bottle at this point, at times we were feeding her while in the bathtub because she was happy in there. Car rides were still horrible at this point. 

Week 21- Emergency Visit, Valentines Day Party at our house, Playdate with Ann, Zoe and Sophie and NG tube re-inserted. First time ever driving to the IWK and she didn't cry when awake.  Weight- 12 pounds, 2 oz. Feeding was becoming near impossible at this point. It ended with an NG tube and then she vomited all the time and we got to the point we had to feed her every 30 minutes a small amount.

Week 22- HOspitalized because of vomiting and then found out she had high blood pressure. We were admitted and she was put on a feeding pump which is continuous feeds all day because she couldn't handle the large volumes. Once we got all trained and ready to go home with that we found out she had high blood pressure. Then we had to have many tests done and medication started before we could go home. When we left the hospital we didn't have to use the pump because she was tolerating her 5 oz bolus feeds.

Week 23- First sleepover with Mom and Dad at Nanny and Poppy Hallorans. First time in big bath tub. We had to start using the pump on continuous feeds.

Week 24- Still on continuous feeds and 4 30 minute naps a day. Had two car rides this week with no crying. 
Started playing with flashlight and shiny paper. Apsea came to the house and left special toys. We had a chimney fire in the house thankfully we didn't leave before it started. Weighed 12pounds 10 oz.

Week 25- Auntie Jenn, Brooke and Logan visited. We had a meeting with the surgeon about getting a G tube in her belly. We went to the mall and her NG tube got pulled out which was hectic. 

Week 26- Started cereal, taking 28 oz per day on the pump. Started sitting up with someone behind her. Loves her IPAD. Got a bath ring for around her neck in the bath tub and she loves it
She was eating a teaspoon of cereal at a time. Went to Debert for a visit and didn't cry!

Week 27- Sitting up for longer periods. Having cereal twice a day. Waking up again at night for an hour. Got a belly spin mat for tummy time and enjoyed it!  Addison had a cold this week.

Week 28- 6 month needles, lots of smiles and loved her Mr. Sun toy! 

Week 29- Addison had chicken for the first time. Started playing with tin foil and a flash light which she seems to react to. 

Week 30- Beans, Carrots and Peas. Did very well with all of them. Apsea brought a little house for her to play in to help with vision. First Easter! We went to Nanny and Poppy Mill's for the night! 

Week 31-Bananas, Pears, Sweet Potato and Formula instead of breast milk! Tyler built her a corner chair and she enjoyed sitting in it. Was eating 2 tsp of cereal with a cube of fruit in it. Wearing all 6 to 12 month clothes and sleeping all night. 

Week 32- Surgery for G tube. Had apples for the first time. Looking towards more noises. First Mother's Day! Got into her big car seat. Surgery went well we were home on the third day. 

Week 33-Nanny and Poppy Mill's got married! Two half hour naps a day. Started watching a wee see video on the IPAD and loved it! Not sleeping through the night again. Got the pump back up to 60 mls and hour for the first time since the surgery. 

Week 34- Green beans, prunes, apricots! Went to Guysborough for the first time to the Trailer. Only ate when in a good mood. Hair started to show signs of being curly. 

Week 35- Squash and Mango. Started doing 2 oz bolus feeds during the day every 2 hours so we have less time on the pump. Life is much easier not having to drag the pump everywhere we go!

Week 36-5:30am new wake up time! First time in awhile that was happy on belly. Put black boards behind toys so she can focus better. Had an EEG and was diagnosed with Myoclonic Jerks which is a type of seizure but doesn't need medication for it because they don't do any harm.  Dr Gordon officially diagnosed her with a form of Mixed Cerebral Palsy. We expected this for some time. At the end of this week we started noticing some different movements she was making that looked like a different form of a seizure. 

Week 37-Speech Therapy begins. Diagnosed with Partial complex seizures and started a new medication called clobazam. The seizures looked like she was holding her breath and her lips often turned blue and her face red. They lasted about 2 minutes and we saw up to 11 a day.  

Week 38-First trip to the Lake Charlotte Cottage! Started spending 20 minutes at a time on her belly and stopped napping which was a side effect of her seizure med.

Week 39- Started making more noises. Got a new book for children with Cerebral Palsy and began new daily stretches. Teething started. 

Week 40-Got her first tooth!!!!!!Making a new noise which sounds like a cats purr. Loved being outside. We were continuing to increase the seizure medication because she was still having them. Then we were at the IWK for appointments and she had 9 seizures in 2 hours so we went to see Dr.Gordon she had adivan to help stop them that day and started a new medication called Keepra. We went to Cape Breton for Jimmy and Sheryl's Wedding.

Week 41-Bean bag chair to help with arching and surgery number one to get the button. Addison went in for surgery to get the button and long story short they put it in the wrong place and they had to do a second surgery to give her a G tube again and wait another 3 months for it to heal so we could try again:( That didn't make for very happy parents. She loves to sit outside in screen tent!

Week 42- Went on a 4 day vacation to the Lake Charlotte Cottage with Auntie Debbie, Uncle Nathan, Jared, Buddy, Holly and Brianna and Auntie Jillian came up one day!  It was a blast!!  Second Tooth!!! Getting 26 oz per day which went down because she was getting sick overnight. Sleeping 10 to 11 hours a night(with the odd party becoming more frequent) with 2 30 minute naps per day. Likes her red checkers on her light box. 

Week 43- Car rides started getting better. Likes physio exercise ball. Curls getting thicker. Has 7 2 oz feedings a day and 12 oz overnight with the pump.

Week 44- Met all the Chisholm family at the reunion in Cape Breton! Down to one 30 minute nap a day and not sleeping all night. 

Week 45- Arms seemed less stiff then before. Cranky week. Spent three days at the Sea Rover Pool! Started waking up at least once per night for one or two hours at a time. Lucky to get a 30 minute nap.  Sleepover at Nanny and Poppy Mills for the night! Started reducing clobazam to see if it helps with sleep!

Week 46- Started Pediasure! Got 24 oz per day. Tolerated her stretches and physio really well at this point. 
Started closing mouth when you try to give her a soother. Loved getting her head rubbed. Was only getting 9 hours of sleep in 24 hours. 

Week 47- Making different noises. Teething with red cheeks and lots of drool! No naps during the day, a nap at 7 pm and back up after 30 minutes until 9 pm. She was growing so fast with new formula we cut her back some.

Week 48-Another new noise. Tummy time looking in the mirror. Expereicned withdraw from the clobazam so it was a rough week. Went to the eye doctor and they confirmed Cortical Visual Impairment. Sleeping 10 hours in 24 hours.

Week 49-Cerebral Palsy Clinic, Auntie Whitney babysat you for the first time!!!
Started having 70 ml bolus 5 times a day with the rest overnight.  The planning for the auction began to raise money for a trip to Ontario for Medek Therapy!

Week 50- Lots of new noises and a laugh!!!!! Started Wee Bears! We went to a GI doctor this week who started her on a new med for reflux which didn't agree with her and she screamed for a whole day without stopping so we didn't continue that med. 

Week 51 and 52- Started melatonin to help with sleep! Head is getting stronger. Birthday Girl!!!!!!!!!!!

1 comment:

  1. Hi Ashley - Great idea to start a blog about your lives with Addison and parenting journey together. Sounds like a first year packed with some very special milestones and not lots of sleep! I bet her first laugh was music to your ears - a baby's laugh is the very best noise.
    Really enjoyed your writing! XO Natasha