Every couple of days I check my friend's blogs. I enjoy keeping up with their family outings, milestones and absolute craziness (Taylor, thank you for keeping me laughing, your kids are a freaking riot!) So I figure while I am satisfying my voyeuristic side by peering into snippets other people's lives I should allow people into our life as well.
New Year, New House:
2008 started off pretty hectic, but fun. We closed on a house while we were in Arizona spending Christmas with my family (it was an out-of-state closing, we did not buy a house in AZ) upon returning to Houston our contractor started work on the house (nothing as awesome as creating a master suite, gutting the kitchen or building an enclosing laundry room between the house and garage - all dreams for the future) we had to remove a god-awful balcony on the back of the house, tear down, then replace the sheet rock on a wall in the breakfast area damaged by the awful balcony, remove SEVERAL layers of horrible wall paper (3 layers each in the master and baby's rooms) and hundreds of other projects like paint, carpet, etc. We moved in on January 29th and started settling in.
First Annual Egg Hunt:
In March we had an awesome Easter party with a ton of our friends. The kids had a great time and we loved inviting everyone to our home. After several years of apartment-dwelling, it was so nice to have a place large enough to entertain nearly 40 people! We couldn't believe how much fun the party was and hope to have an even bigger showing next year! Paul and I are already starting to plan next year's Easter festivities so mark your calendars for April 4, 2009 :o)
Going for a walk while the Easter Bunny does his hiding
Let the hunt begin!
Then Came Julsie:
On April 21st our Sweet Julia Mae was born. As many of you know, our little angel was diagnosed with
Trisomy 18 when she was 3 days old. For more information on
Trisomy 18 you can visit
http://www.trisomy18.org/. Julia was a fighter and after 21 days in the
NICU, we were able to bring our baby girl home. We roomed-in at the hospital on mother's day and spent the night at the hospital under the watchful eye of our
NICU nurses to make sure we knew how to properly care for
Julsie. We were so nervous to bring Julia home wondering if we'd be able to properly care for her, but just like the doctors and nurses told us, life with Julia quickly became "our normal." Despite the feeding tube and oxygen, she was like any other baby. She slept a lot and loved to be cuddled and held. She ate every four hours, which consisted of feeding her though the feeding tube in her nose. It took about 30 minutes to feed, not including time to prepare and warm her milk (about half and half breast milk and formula), filling the bag, priming the tube and setting the machine. Julia LOVED getting drips of milk in her mouth while she got her feeds. She was so cute the way she would suck and slurp and enjoy each drip for all it was worth. Sometimes she would be content sucking on the back of her hand. She never really took the pacifier, and we decided not to try to transition to the bottle since the tube feeds prevented her from aspirating and unlike bottle feeding, she never spit up or had much gas.
Once Julia came home, we both became stronger and quickly set about creating a routine that pretty much went off like clock-work. At night, Paul tried to go to bed as soon as Molly was tucked in, then I would stay up with Julia and give her the midnight feeding, then Paul would cover the 1am till 5am shift, then I was back on deck. I think like most families with a newborn, sleep deprivation was the hardest on us. Paul and I both cried a lot while Julia was in the hospital, but once she came home, it felt more normal and was easy to almost forget her diagnosis. We just assumed we'd have six months or a year with Julia. Molly was an AMAZING big sister and showed Julia lots of love and attention. The day we brought Julia home we told Molly that her baby sister was sick and that we were going to give her lots of love and snugs and take really good care of her. About a week after Julia had been home, Paul and I agreed it was time to tell Molly the truth about Julia since she kept saying things like "when my sister grows up" or "when she turns one year old." At first Molly was a little sad and she got teary-eyed, but then she said "My sister is going to be an Angel one day" and that was that. She was matter of fact about everything and would often tell people that her sister wasn't going to turn one and would be an angel in heaven with God and Jesus one day. She would always kiss Julia - I mean, Princess Leia (if you don't know already, Molly is a huge Star Wars fan, seriously, HUGE fan. I'll go into the background of that obsession on another post, but just for the record, Paul is not a Star Wars guy, and I have never seen any of the movies). Molly insisted that her sister's name was Princess Leia and would correct anyone who called her Julia.
While she was with us, Julia was the center of our family. We loved her more than we ever thought possible and Molly adapted so well to having another little girl become the center of our world. She loved helping us take care of Julia, especially priming the tube, that was her job!
Julia was such a happy little baby and so healthy considering... Our nurses pediatricians all commented that she was doing so well! She was growing and gaining weight and we increased her feeds nearly every week!! She started at 5 ccs a feeding her first few times, and got up to 115! She also was born 4lbs, 12oz and grew to 7lbs 14oz. Everyone was amazed at her progress. I took her off of oxygen on June 12th and she never had a problem without it! We were so excited to be able to carry her around the house since she was no longer tethered to her oxygen tank. I even got her to smile on June 22nd by tickling her belly. Molly was standing next to me and we both got so excited to see Princess Leia smile and nearly giggle!! It was awesome!!!
Julia taught us so much and brought countless blessings into our lives. She strengthened our family, deepened our faith, got us more involved in our church, brought us closer to our friends and family and taught us about real love. We met several earth-angels: our NICU doctors and nurses, especially, Mynon, and our amazing hospice nurses and volunteers. We also had a few private nurses that we didn't get to spend as much time with, but they were all so wonderful to us and sweet Julia. There is no way we could have made it without them, and I know I am going to be leaning on some of them in years to come. We also experienced the most amazing love and kindness from our friends and neighbors. Danielle arranged a food delivery that lasted for nearly 6 weeks! We were blessed with home made dinners every other day from the day we got home from the hospital. Especially while Julia was in the hospital these meals kept us going and reminded us to eat and feed Molly while making the 45 minute drives to and from the hospital, sometimes 2-3 times a day. We also became incredibly close with our amazing neighbor, Robin, who would come and sit with Julia at night when Paul had to work late so that I could do Molly's normal bath and bedtime routine while she rocked and loved on Julia. Robin joked that she was just paying it forward since she knows that one day she and Rick will be old and will need our help getting around! Heck, we might just move them into our house and take care of them full time after all they've done for us! Then of course there are the people who helped so much with Molly. She went to school pretty far from the house and two moms from Molly's class would drive her all the way home each day and Danielle took her in the mornings. It was amazing. After Molly started going to the same summer camp as Davis and Caden, Hannah and Danielle took turns each week shuttling Molly between the house and church. Lindsay came over every Thursday and sat with Julia while I got to take a glorious 2 hour nap. And oh my gosh, Paul's mom... wow, she came in every weekend that she could and took what we called the "Iron Man" shift. She took Julia all night and Paul and I would just get up to set her feeds then go back to sleep. That was the only time each of us got more than four hours of sleep and slept in the same bed. Paul's dad took Molly for 2-3 days every week or so, which made things so much easier for us. I know Molly also loved being the center of attention with him. She got to have pool parties with her cousins and neighborhood kids and drive the golf cart. Our wonderful hospice volunteer, Ms. Molly, came Tuesday mornings and usually that was when Molly and I would spend an hour or two in the pool together. When Ms. Molly went to Virginia to be with her daughter while her granddaughter was born, Ms. Jan came in as her "substitute" but it soon became obvious that she was the newest member of our family. Melodie was our weekend volunteer and not only was she great with Julia, Molly just loved her to pieces. I started thinking I should just let Melodie play with Molly and entertain her while I watched Julia! I am telling you, there is just no way Paul and I could have done it all on our own and we are so very thankful to everyone who gave us their time, love, support and prayers.
We were blessed to have several celebrations with Julia... on May 21st we celebrated her one month birthday with a "pink" party. Molly really loved it and had a blast decorating and throwing her sister's parties. On June 7
th we had Julia baptised at the house. Mike Fry, the associate pastor from Grace, came to the house to perform the ceremony. Pam
Smedly took pictures and about 25 people came to celebrate Julia's baptism. It was wonderful. On June 21st we celebrated Julia's two month birthday with a Pooh-two party. Molly had fun finding every single Pooh item in the house to decorate for the party. It was so much fun to celebrate with both of our girls.
On Wednesday July 9th Julia just wasn't feeling well. We weren't able to sooth her and she wasn't sleeping as peacefully. We called hospice to come check on her and Kristie suggested that we check into the hospice in-patient house so that she could be monitored by their doctors and nurses. We really just thought she had a bug and would be back to herself in no time. We settled into the house around 5pm and after an hour or so Julia settled down and took a really good, peaceful nap. Paul and I managed to eat dinner, and then Julia woke up in a great mood. I got to take some really great pictures of her. She was so happy and content, and I even got her to smile by tickling her belly. We tried to convince Julia's doctor that we should just go ahead and spend the night at home. She talked us into spending the night and we are so thankful that we did. About 9pm that night Julia started taking a turn. She was fussy and progressed to full blown crying. She just couldn't get comfortable and would sleep for a few minutes, then wake up crying horribly while flailing around. About midnight we asked the nurses outside our room to watch her for a while so we could rest for a bit. I woke up at 2:30 and went to get her. She was sleeping peacefully on the nurse's shoulder, but they told me she wasn't doing very well. She had about 75ccs of milk come back out of her feeding tube from her midnight feeding and that was the first time she ever had a problem keeping her feeds down. They also said that it was the first time she calmed down in the two and a half hours that they watched her for me. We gave her another dose of morphine (we had given her several doses of morphine over the course of the night to keep her comfortable) and I took her back into our room. Paul and I got into the tiny twin bed with Julia snuggled up between us, wrapped in her favorite blanket. She had several apnea episodes where she would stop breathing, then start again, and all the while she would be so fussy and uncomfortable. I so wish there was some way we could have comforted her. It was absolute misery to watch her writhe around in pain. Poor little angel. Around 5:28am she took her last breath and her heart stopped beating a few minutes later. We are so glad that she went to heaven while lovingly snuggled between Paul and me, both of us holding her. We could not haven been more intertwined. Paul and I held and loved on her for a few more hours. It was so hard to finally let her go. Our time with her passed all too quickly and now it almost seems like it was a dream. My memories of her are already starting to get a little fuzzy and there are so many things I hope to never forget. The way she smelled, the feeling of resting my cheek on the top of her fuzzy little head, the way she sounded and looked so happy while enjoying her dips of milk, watching her stare up at Paul while he held her, watching Molly kiss her and call her Princess Leia, the way I felt when she smiled and kissing my favorite spot on the back of her neck.
We had her funeral on July 12th and a great memorial service on August 2nd. All of Paul's family came in for the memorial and several of my cousins came in from Seattle, Utah and Arizona. Paul's brother Steve and my friend Katie both came in from California. My best friend from high school, Star, made the most amazing video slide show of Julia's pictures, which I hope to get uploaded to youtube. When that happens, I will post the link.
Today she has been gone for one whole month. I just can't believe it. We miss her so much that it hurts. I had 3 cousins who came for a week each, so I have been able to stay distracted and very busy. This is the first week that I won't have anyone to keep me occupied while Paul is at work and Molly is at school. Luckily Paul is in full Halloween-mode and is starting to find all kinds of fun little projects for me. Jeez, I can't believe it's really Halloween season already, at least we will be insanely distracted for the next three months.
JULIA'S LEGACY PAGE:http://www.trisomy18.org/site/TR/Events/redesign?px=1139221&pg=fund&fr_id=1070
Well, so much for a quick little update as my first post. Check back when you can, you all know I am slightly picture-obsessed, so I am sure there will be new things to see from time to time. (Oh and Taylor and Kendra, feel free to set your inner journalists loose on my spelling and gramatical errors!)
Nothing like sweat pouring down your face as your toes get frost-bitten! 
Lindsay came every Thursday and watched Julia while I took a wonderful nap. Lindsay gave up her days off to be with sweet Julia and I was so grateful to be able to sleep knowing someone so loving was holding my baby girl.
