Thursday, May 28, 2009

Expectations

I have always had high expectations for myself. The goal was always perfection. I played sports and I always wanted to be the best. Although my grades in school weren’t spectacular, they were what I considered my best effort. I got a sales position after college and I pushed myself to be the best locally in that position. I became an Assistant Store Manager and I put that career before everything in my life. So when I became pregnant and sick, my body forced me to put me first.

My expectations changed. I expected that my life would never be the same but I never realized how much it would change. For people on the outside looking in, my life probably doesn’t look that different except now I have a child. For me, I feel like a totally different person. The way that I got through my daughter being in the NICU for 93 days was thinking that each day, we would be a day closer to being home and that meant we could close the book on her being sick and she would be considered “normal”. I remember when we met with the doctors at the pre-discharge meeting being advised of things that we might want to do that would be treating Gillian different than the “normal” new born going home. For example, they asked us about pets, carpet & fireplaces because of allergies, they asked about who was going to watch Gillian while we were at work because of how fast an entire daycare can become ill and her immune system would be weaker & of course the shots to ward off RSV but then they told us to treat her “normal” otherwise. I was na├»ve then and really believed that I would walk out of the hospital and everything we went through would be behind us and we would be “normal”.

It’s been 3 years and I still don’t feel “normal”. There is not a day that goes by that I don’t think about Gillian’s prematurity. From when I get her dressed and see her spine because she is so tiny (although she eats so much in a day, I’m not sure where it goes) to every time I think something is not going right I debate about calling her doctor or one of the therapists to see if it is “normal”. There is an actual ringtone on a cell phone that when I hear it reminds me of an alarm when she was in the NICU and I actually picture the 1st time I met Gillian with all the wires and tubes. When will the day come when I don’t worry about how prematurity will affect her life and just assume it is “normal”? I know a parent worries about their children but is this worrying that I’m doing “normal”? Should I give up on hoping for the day when I don’t have anxiety from worrying? My expectations were much different than what is happening.

Thursday, May 21, 2009

Pooh Bear


Craig and I moved into our home in August after a month of bugging him for a puppy, I finally convinced him to go to the Humane Society to look for a puppy. We got there and looked at the puppies and looked at the dogs but there was this one puppy/dog that kept yapping at us and was spinning around trying to get our attention. We knew then that she was to be ours. When we looked at her we assumed she was half grow at 3 months old and 18 pounds….we were wrong. She is now 80 pounds almost 6 years old. She is an amazing dog…truly. I have a great story about how we bonded.

Of course I have always loved Pooh but for the 1st three years she was more like Craig’s dog. There was an obvious preference on her part. When I became pregnant and was stuck at home on bed rest, Pooh and I spent a lot of time together. She would bug me to go out and I would let her out constantly. But I noticed as I got sicker, she asked to go out less. I also noticed that she stuck to me more, laid on the floor next to the couch or slept on the floor next to my bed. Always close by and always keeping an eye on me. I was very concerned about how Pooh was going to react to the baby…Pooh had always been the baby and she got so much attention. I mean anyone that comes to our house was obviously there to see her. I remember when I was admitted to the hospital I was so worried because Craig was downstate and who would take care of Pooh. We set up a rotation and our friends and family all took turns going by the house and letting her out and spending time with her. I remember the first time I walked into the house after my c-section thinking that Pooh would be so excited to see me that she would immediately jump on me. She didn’t jump…she sniffed me and again didn’t leave my side. It truly amazed me how she became my best friend when I needed her, it completely changed our relationship. I spoke to the NICU nurses while Gillian was in the hospital to see what I could do to make the transition easy for Pooh and Gillian. They had suggest bringing all Gillian’s blankets and clothes home regularly to be washed and let Pooh sniff them before I wash them so she would pick up Gillian’s scent. That worked…the day Gillian came home Pooh could have cared less, she was more excited about the visitors that came with her. Through the years both children have had their moments of annoyance with the other but both seem to know their roles and do care about each other…like normal siblings.

I’m sharing this story because it is a fond memory of mine and poor Pooh has had some very bad luck lately. She broke her toe right before Easter and was limping around. We took her to the vet and they put her in what they consider a splint and I consider a cast. It looked like she broke a leg not a toe. So for the last 5 ½ weeks we have been taking care of Pooh and her cast, making sure she doesn’t lick it and bagging it when she goes outside. I thought we had been doing well and was hoping in the next week that the splint would be coming off and more bad luck. I noticed that her cast smelled so I called the vet and got Pooh down there. They needed to keep her overnight because a larger fellow would be in in the morning for when the splint came off so they could do an x-ray. Today the splint came off and she has tons of sores from the cast…not good. She is on all sorts of medicine and is in tremendous pain. I feel awful for her. She couldn’t tell us she was in pain for who knows how long. And the toe is still broken so now we have to heal the sores so they can figure out what else can be done for her toe. So tonight I have spent the evening with Pooh, giving her a rub down, trying to make her take her medicine and trying to make her feel better. I hate when my children are sick….

Wednesday, May 20, 2009

Moments

So my week has not flown by fast enough. I’m only half way to a 3 day weekend that I’m looking so forward to enjoying. We are going to my parents for dinner Saturday and we are meeting Craig’s family at the beach on Sunday for lunch. It should be a fun weekend. Then we have Monday to recuperate. The weather hasn’t been too bad. Monday & Tuesday evening we spent outside playing which of course Gillian was so happy about. I’m okay with the outdoors as long as there aren’t any bugs. Gillian does not care if there are bugs or not. As long as it isn’t raining she wants to be out there. Not sure where she gets that from.

Today I was so proud of Gillian. After work I had to bring Pooh (our dog) to the vet because her cast that she has had for 5 ½ weeks is starting to smell funky. So my Mom picked Gillian up from daycare so I didn’t have to juggle a 3 year old and an 80 lb dog at the vets….I know that would have been a challenge. The vet needs to keep Pooh overnight so they can do x-rays and figure out if she needs a new splint. So I headed over to my parents to pick up Gillian. When I got there everyone was in good spirits, Gillian was wearing her big girl underwear and no accidents at that point. We played bouncy ball for around an hour then needed to head home to bed. While we were saying our good –byes to my parents, Gillian was talking to her Grammie and said, “Thank you Grammie for dinner.” I could not have been prouder. She wasn’t asked or encouraged. I was thrilled. On the way home I explained where Pooh was so she wasn’t surprised when we walked into the house. Gillian got upset at first but I reassured her that Pooh is fine, that the doctor just needs to help fix her leg. She seems very satisfied with that answer. We got home, brushed her teeth, picked out an outfit for tomorrow and I lay down with Gillian. It is a “bad habit” that we formed at a young age. I get up ½ hour after lay with her. I don’t regret the habit, I know she will grow up and eventually she won’t want to spend this time with me but I will continue to do it until she forces me out. It is our time to talk about our days and what we liked and about whatever is on her little mind. Oh, and one last thing….no accidents tonight:)

Saturday, May 16, 2009

Children


I can’t believe my daughter is 3 years old already. Where did the time go? I spent time this weekend putting pictures in albums which made me look back at all the older pictures. I didn’t keep a written journal of the last 3 years but I definitely have pictures documenting it all. I love taking pictures. Gillian had a full photo album before she even left the NICU. I know she will be our only child so I like to make sure I have pictures from everything. The holidays, with family and just day to day activities so that when she gets older she can relive her life through what we saw.

I was very stressed about having a child. I had no idea if I was up for it. I had never heard anything fabulous about it nor had I heard anything too awful. I never thought I would have enough money to support a child and I didn’t ever think I would be able to go to work because I didn’t think I would ever be able to trust anyone to take care of my child. I have learned so much from Gillian. Right from the start she has taught me so much. Her NICU stay alone taught me sheer determination. In the past 3 years she has had obstacles and she has over come them without thinking twice. She had to be seen by a physical therapist because she wasn’t moving around. A very nice man came to our house for 11 months and worked with her and she was rolling, crawling and walking before we knew it. The same month she was discharged from PT, speech therapy started. A nice woman came to our house and at first Gillian was very frustrated with her…actually they were frustrated with each other. Normally the therapist breaks the child and gets them to follow the correct path. Unfortunately Gillian almost broke the therapist. I can say Gillian had a lot going on when speech therapy started. Gillian had just started daycare and Craig’s schedule had changed drastically so she had 3 major life changes going on at once. Her speech came along and by her 2nd birthday she was coming out with short sentences. The speech therapist was very surprised at how fast she went from not talking at all to talking up a storm. She obviously had a lot to say. About 7 months after speech therapy had started, PT started again because Gillian was very unstable on her feet. Running into stuff and falling constantly was part of her everyday life. By Christmas 2008, Gillian was discharged from everything. Gillian has been seen by so many doctors in the past 3 years and surprisingly she lets them do what they need to do without much hesitation. This past March she went for a follow up with the heart specialist and the dr was blown away by Gillian. She said it is rare for a 26 weeker to have the results Gillian has had. In 3 years this little child has taught me more than I probably learned my entire life. She has been determined from the start and if she sets her mind to something she does it. All my doubts were gone the moment I saw Gillian. Everything I thought about having a child was incorrect; I now believe it is the most wonderful experience. I don’t know what I would do with out my Gillian…

Tuesday, May 12, 2009

The hospital stay...


Gillian was in the hospital for 93 days. I was not able to meet her other than our brief seeing each other at delivery until she was 2 ½ days old. I was so sick and unstable that I wasn’t allowed out of bed. I waited as patiently as possible. And I handled myself quite well until the NICU let Craig hold Gillian and I couldn’t go watch, that was meltdown #1 of many. I was allowed to be upset in the NICU until I was discharged from the hospital then Craig told me Gillian needed our strength and that I couldn’t be upset when I was at her bedside. I had an hour drive to and from the hospital so I would either be upset the whole way there or the whole way home. It would depend on how Gillian’s day was going whether I needed to be upset at all. Gillian was intubated for her first 33 days of life. While she was in the hospital she was treated for so much that I’m not sure what everything is anymore but the list I was given when she was discharged was: extremely low birth weight (a given in my opinion), chronic lung disease, respitory distress syndrome, possible sepsis, R/O NEC, metabolic alkalosis, apnea of prematurity, gastro esophageal reflux, ventricular septal defect, hypotension, anemia, IVH grade 1, at risk of retinopathy of prematurity, MRSA colonization, and metabolic acidosis. Gillian also received 7 blood transfusions while in the hospital. We had our good days and not good days. I always called ahead so when I walked in the NICU nothing would come out of nowhere at me…not a fan of medical surprises unless they are good ones. We followed the nurse’s advice about pretty much everything because it was our hope to make it out of the NICU as smoothly as possible. Rule #1 - only parents were allowed to hold her because the more people Gillian was exposed to the more that could infect her. We were offered to move her spot in the NICU when a window spot opened up but we figured the spot she was in, she was doing well why tempt luck. Looking back it is funny how superstitious we had become but anything we thought would help the situation we were willing to try. The very depressing part of being a long term in the NICU is watching people that come in after you leave before you…at first I didn’t notice and then I noticed but thought one day that will be us and by the end it would just irritate me. Not that I want to see a child or their parents suffer but I definitely felt by day 75 that I wanted my daughter home with me. I regret that I didn't wait for Craig to come home to help bring Gillian home. June 24, 2006 the doctor came in and examined Gillian and she looked at me and asked me if I wanted to take Gillian home the next day. Craig was downstate for work and he wouldn’t be home until Monday. I told the doctor that we were ready. Craig was unable to be there for our walk out of the NICU. I was so scared if she stayed in the hospital until Monday that something would happen and they wouldn’t let me take her home. I brought my Mom and Craig’s Mom with me to pick Gillian up on June 25th, it took 3 hours for them to get all the paperwork and show me how everything worked so she could leave the hospital. I cried so much during those 3 hours…everyone was crying, other parents, nurses, both Moms; it was a long time coming to get our girl home:)

Monday, May 11, 2009

How it started....


My pregnancy was far from normal. I found out I was pregnant on October 21, 2005 and I was taken out of work on November 10th for pregnancy induced hypertension. My doctor put me on blood pressure medicine and told me to relax. I’m not sure how a type A personality with a surprise pregnancy relaxes but I know I wasn’t good at it. After the holidays I literally had nothing to do and my husband was gone Monday through Friday for work. Going from a fast pace environment to lying on a couch all day is definitely a shock. I found out I was expecting a girl on January 31, 2006 and my husband was unable to be at the ultrasound. So I made a 2 and a half hour trip to surprise him and tell him a princess was on her way. We thought we had all the time in the world; I was only half way through my pregnancy. March 11th I went to the hospital because my blood pressure on my home machine was running 160/110 so the doctor just wanted me to go in just in case. They did tests, everything came back fine and they made me an appointment first thing Monday morning. On Monday they started more tests and protein showed up in my urine and the preeclampsia started. I was admitted into the hospital from the doctor’s office. I spent 1 night in the local hospital before they sent me to Burlington, VT which is about an hour from my home. I spent 2 nights in Burlington and they thought I could make it another month so they released with me with an appointment with my doctor the following Monday. The following Monday the tests that they did and the ones that had been done the previous Friday all came back that the preeclampsia was getting worse and fast. I was admitted again on the 20th but this time I was sent straight to Burlington. Tuesday night the doctors didn’t think that I would make it through the night so I had to meet with a doctor so they could give me all the percentages of everything going okay and everything going wrong. I told my husband that we needed to come up with a name and that he needed to keep his figures crossed that we made it through the night. We did make it through the night and by morning; Craig had come up with the name Gillian. I was able to get both steroid shots because the doctors knew I wouldn’t make it much longer. The night of the 23rd I knew I was struggling. I was having a hard time moving around and I had to ask for medicine because I had such a terrible headache. I promised Gillian if she made it through the night that her Dad would be there and we would make sure she was taken care of. First thing the next morning, my doctor came in and told me to get whoever needed to be there to Burlington because we would be parents that day. I got a hold of my husband, parents, siblings and friends to let them know what was happening. Gillian Jane was delivered at 2:35pm via emergency c-section. She came out screaming which we had been told her lungs would not be strong enough. Craig and I took this to be the greatest sign of hope! If she can cry, she can do anything. She has since proven to us and the rest of the world that this is so true!