Hello,

After much thought and consideration, I have decided to create a new, more secure web journal for Ruby. I feel that this site has gotten much too public. Anyone can surf in and read about Ruby - and the site is even found in search engines! At first that didn't bother me. I wanted to share Ruby's story with random people who might have a child with one of Ruby's health conditions. I truly love sharing Ruby's daily life with all of my friends and family. But, I think it's time to become more private for our safety. This site has been such a blessing in so many ways. It is a permanent reminder of the people who have been there for us through our journey. It is a legacy of how far Ruby has come and has been a wonderful way to communicate with friends and family. I feel that moving to a new site is the only way that I can continue doing this.

I will be sending out an email with the new web site address and password to those of you who I know check the web site frequently. If you would like access and you don't get the email from me, please let me know.

Thank you so much for all of your love and support in our journey.
Angie and Ruby

Hi! I'm sorry it has been so long since I have posted an update. We had a great weekend. Ruby's aunt Jess came to visit from Florida on Saturday! It was the first time we met her, though we have been emailing for many months. We spent a couple of hours at the Mall of America and Jess got to hold Ruby a lot, which is why she visited, of course! To sum it up, it was just wonderful. Jess is a doll and I'm so glad she is in our lives. I posted some really cute videos that Jess took this weekend. You will have to turn your head to the left to watch one of the videos, but it's worth it because Ruby is so darn cute.

Ruby is doing fantastic. Thank goodness, she has been well for almost 3 weeks now! Her grandma misses her horribly - she hasn't seen Ruby for 2 weeks. I think that is the longest she has ever gone without seeing her for Ruby's entire life!

We saw Ruby's gastroenterologist (tummy doctor) on Friday. He is also quite enthused by her weight-gain and her recent desire to eat more. She weighed 12 lbs at the appointment. He took her off one of her reflux medications, Reglan, which is wonderful. He wants to see her back in 2 months and will hopefully take her off Prevacid at that point. I think reflux is in our history now. Tonight Ruby took 5 ounces from me, which is just fantastic! Just a month ago, she was topping out at 2.5-3 ounces max! So, this is all great. We are working on solids, but it's just not going that well. I really do believe that Ruby is steering the course and she will tell me when she's ready to go full-force on solids. I know it's quite crazy that an almost 1-yr old isn't on solids yet, but Ruby is not the typical child, is she?!

That is really all that I have to update for now. This week is rather uneventful - no occupational therapy and no doctor's appointments. I can't say that I'm disappointed, though. I'll write more soon!

Hello! We have had a great couple of days. I just love having Wednesdays off from work. It really makes the work week so much easier - I'm away from Ruby for two days and we get to spend one together and then we spend two days away and two together on the weekend! It's perfect. Today her occupational therapist came and brought lots of cool toys. She brought a bucket of blocks and plastic balls and rings. Ruby actually reached into the bucket and grabbed a ring and a block! It was pretty neat. She left the bucket here so Ruby can play with the toys all the time. Tonight I spread all the blocks, balls and rings on her high chair tray as well as some different tupperware containers and Ruby had a blast putting the blocks in the containers and dumping them out and throwing things on the floor. I had lots of fun putting the tupperware containers on top of her head! It's just amazing to me what a big girl she is getting to be! Today Ruby also went in to the doctor's office to get her synagis shot and she was such a big girl. She only cried for 2 seconds and the nurse handed her back to me and she giggled! The nurses got a kick out of that!

That's about all that I have to report for now. Oh, and for those of you who have been curious about a birthday party for Ruby, I am planning one. I'm just having a really hard time deciding whether to have it at my parents house in Albert Lea or up here at our new place. I'm just not sure I could fit as many people comfortably here as I could at my parents' house. If anyone has any thoughts or ideas on this, please email me! Have a great week!

It's really hard to believe, but it has been almost a year since I started the Caring Bridge website about Ruby. My first entry was on October 10 and I was 28 weeks pregnant and very, very scared that she wouldn't make it to delivery. I am so glad that memory is written down because it makes me that much more grateful for what I have. This time of year is bringing back so many memories for me. These sunny fall days remind me of days at the doctor with bad news surrounding me and fear in my heart. I can't help but relive some of those memories and feelings leading up to her birth day. It's amazing how the weather can facilitate those emotions.

Today I bundled Ruby up in a hat, winter coat (12 month size and it's just a little too big!!) and shoes and we went for a walk. It was pretty cold, but she sat like a little angel in her stroller. I turned around early because I was worried that she was too cold. The wind was kind of brisk! We have a beautiful lake near our house and I wanted to catch a glimpse of it before the snow falls!

Ruby has been eating like a little piggy for the last couple of days! She has by far surpassed her record in bottles today. Earlier this afternoon I gave her a 4 oz bottle and she was still hungry, so I gave her 2 oz more and she ended up barfing all over herself. I don't think her tummy is quite big enough to handle 6 oz at once. She usually only takes 2-3 oz at a time, so she must be growing like a little weed! She has also been sleeping through the night consistently for the last week (knock on wood) so she should be more hungry during the day. Last night I fell asleep at 9:30 (I am SO lame) and I rolled over at 7:11 am and just about shot out of bed, thinking she had died in her sleep or something. Nope, thank God, she was just laying in bed playing with her feet! I like this new schedule a LOT! So good things are happening over here lately.

We are so very, very blessed in every way. Each day that Ruby and I have together is truly a miracle. Keeping this website has blessed us in so many ways, too. It's amazing to me how many people check the site daily to get a Ruby update. I really can't explain how absolutely touching it is that so many people (some of whom haven't even met her) want to know what is going on in my little pumpkin's life. There really are no words to express my deep gratitude for the prayers and kind words. Thank you for following our journey now for nearly a year!

Love,
Angie and Ruby

Ruby seems to be pretty much back to her happy smily self again. Today I didn't need to suction her nose at all! It's a miracle! I can now stop being meany mommy. She has been babbling her new words like crazy lately and it's the cutest thing I've ever heard in my life. She has the sweetest voice - it's like a little angel talking! We had a lot of fun hanging out today on my day off. Her occupational therapist came over and Ruby showed her how wiggly she could be! She also showed her that she would absolutely not be doing ANY tummy time today! Every time she tried to put Ruby on her tummy she rolled right back over or screamed if we held her there.  Tonight Ruby got a bath and I taught her the sounds that all of the animals make. She thought it was pretty funny, especially when the cat meowed and the snake hissed!

I got good news earlier this week that Ruby was approved by my insurance company to receive the RSV synagis shots again this year. RSV is a common illness like a cold that affects every child, but can be particularly devastating to children who were born prematurely and also because Ruby is still so small for her age. This common infection can travel into the lower respiratory system and wreak major havoc. She will get one shot per month starting in in a couple of weeks until spring. It's not going to be fun, but it's worth it because last year her pediatrician told me some horror stories of kids in the ICU with deadly RSV infections. It is especially critical because she is in daycare this year and is obviously soaking up those germs like a little sponge!

I guess a couple of people are  interested in knowing what Ruby's favorite song is! Sorry I didnt' say it before! The song is by a band you've probably never heard of called, Keane and it's called "Everybody's changing". It's just really gentle song and the singer has a great voice but it's really not "baby music"! We also listen to a great CD in the car with lullabyes in different languages and of course, Raffi and Auntie Mandy has made her some great baby CDs and Ruby loves those songs too, but she's never reacted to another song in the same was as she does to that one. Guess it just shows that kids can have sophisticated taste at a young age! That's my girl!

Hello! Wanted to post and let you know that Ruby seems to be feeling a lot better. She no longer has diarrhea (thank God!), her fever is gone and there isn't as much gunk coming out of her nose as there was earlier this week. She smiled and laughed for the first time in about 4 days on Friday. That was a relief! She just wasn't happy and I don't blame her. I'm so glad that it didn't get worse. Poor baby!

Ruby started saying "ba ba ba ba" and "ma ma ma ma" on Saturday! My parents and sister came up to stay at my new place and my mom was saying "ma ma" to her and she repeated it back! Ever since then, she has been babbling like crazy. She has said a few things in the past, but not this much! I'm so excited! She is also learning to clap like a big girl! I have posted a new video of her clapping - it's so cute. Click here to see it.

Ruby also seems to have a favorite song! I have a CD with a bunch of different artists on it and I have been playing it on the way to work in the morning. One morning when one of the songs came on, she got really excited and squealed and started clapping her hands! I played the song again the next day and she did the same thing! She doesn't get excited like that for every song, so apparently she has a favorite song! She's so funny.

Hope everyone had a nice weekend!

Ruby has had two more rough days. On Wednesday, her fever continued and she also started to get a really runny nose. Her fever was gone this morning, so I figured she would be okay to go to daycare, but I got a call at work at 10:30 that she had already pooped 3 times and they wanted her to go home for fear that she is contagious. Apparently another little girl at daycare went home on Wed. with diarrhea too, so something must be going around right now. I got her in to see a pediatrician this afternoon and he ran blood tests, which showed that she is actively fighting a virus. He feels that the diarrhea and runny nose/fever are different illnesses and doesn't think that she has rotavirus. He felt that she was plenty hydrated. I brought in stool samples this morning but they take about 3 days to test, so we won't know if there's something else going on until then. For now, all I can do is treat her fever and keep her hydrated. I feel SO bad for her. I can just tell she is miserable. Tonight she got sick to her stomach and threw up all over me - she hasn't done that in SO long. Poor baby! She's been crying so much, which is so unlike her, so I know she is just not feeling well. If she still has a fever on Saturday, I am supposed to take her in again. Let's pray that it goes away tomorrow along with this diarrhea!

Thanks for everyone who keeps checking in and saying some prayers! It means so much to us! Ruby is one loved little girl. We are very blessed to have you all in our lives.

Hi there. Well Ruby has had a bit of a tough week. She has had loose stools/diarrhea for about 10 days now - the first 4 days I wasn't too worried, thinking that it would clear up on its own. Then on Saturday she started getting a terrible diaper rash. Her little bum was so red, I cried for her when I changed her diaper and so did she, poor thing. I tried using every diaper cream in my arsenal - desitin, balmex, some leftover nystatin, I bought some lotrimin for yeast, I soaked her in dreft and baking soda. Nothing helped. On Monday her loose stools continued, which fueled her diaper rash even more and I ended up calling her ped's office to see what I should do and when I should be worried about the pooping. The nurse told me that since her skin was on the verge of breaking open, we should definitely come in. We saw a different pediatrician, (I guess dr. Morkeberg is on vacation) and he figured that she just had a virus and prescribed some "Poop Goop" ointment for her butt. That is literally what he wrote on the prescription slip - Poop Goop! And he sent me home with some culture dishes to collect stool in for testing if it doesn't get better in 3 days.

Today she blew out 2 outfits and she threw up at daycare. I got her home and we were playing on the floor and she seemed pretty happy, but I brought her face up to mine for a kiss and she was on fire. Poor little thing had a fever of 102.3. I got pretty freaked out and called the clinic right away. I don't usually feel panicky over stuff like this, but it seemed like her fever came out of no where. The nurse said that she suspected that Ruby has rotovirus, which is apparently pretty common in babies and causes diarrhea. So no emergency visits tonight unless her fever hits 105 (scary!). Her fever has gone down slightly and we have switched over to pedialyte instead of formula. I have tomorrow off, so we will lay low and hopefully this bug will pass and her diaper rash will be ancient history. The poop goop is really working on her rash, but it's still looking pretty painful. Anyways, to make a long story short, Ruby hasn't had the greatest week ever and I feel terrible for her. I'm not used to her being sick so often, but I know it's just a part of being a baby.

Sorry that I have gotten pretty bad at updating the website. I have noticed that I am on a pattern right now of updating on Tuesday and Friday. I really can't find the time to update more than that right now and quite frankly, our lives are just not eventful enough to create fodder for journal entries. I mean, I just wrote 2 paragraphs about poop! How interesting is that?! I can assure you that once November rolls around, we will have plenty of doctors appointments to update you on because our month is booked solid with 1-year check-ups.

By the way - the picture posted on here is of my friends Brooke and Allison, and of course, Ruby and me. Allison is one of my great college friends - she lives in Chicago and was in Minnesota visiting this weekend and Brooke, another wonderful high school and college friend, picked her and her boyfriend, Chris, up from the airport and they stopped by our place on Friday to visit. We had a lot of fun!

Gotta get to bed now. I'll try to update again soon!

Hello! We had a great appointment at the NICU follow-up clinic today! The neonatologist plotted Ruby's growth on a chart and interestingly, her growth curve is the same as a "typical" child her age. She is below where she is supposed to be in overall weight and height on the chart, but the curve is exactly where it's supposed to be. They didn't expect her to follow the curve at all. Her neonatologist even said that she is exhibiting some catch-up growth! He expects her to be in the 3rd percentile soon! How amazing is that - going from being WAY off the charts, to slowly creeping on to them?! I am ecstatic! They were all SO amazed at how great she is doing! Her neonatogist asked me what I was feeding her! It just cracks me up!

He was also extremely impressed with her gross motor skills. Ruby was laying on the table and grabbed the stethescope with both hands and put it in her mouth and he just couldn't believe she is the same baby that weighed 3 lbs at birth. I was, of course, a beaming, proud mother! We discussed all of her systems and eyes and her neonatolgist pointed out that there are premie babies born that have much worse brain damage than Ruby and are completely blind too because of their prematurity- just proves that nothing in life is guaranteed. I feel very fortunate for this wonderful news and for Ruby's health! It's a miracle.

We also had a great visit at the NICU on Wednesday with Ruby's primary nurse, Bev. It was so strange to walk into the NICU again. It brought back a flood of memories and feelings for me. Seeing Bev brough back a lot of emotions too - she was the cornerstone of Ruby's care and was so diligent in making sure that I was informed and that Ruby was always top of mind for everyone. Bev is the reason that Ruby got out of the hospital so quickly and I will always hold a special place in my heart for her. We wanted to see Ruby's other primary nurse, Caroline, who is also wonderful, but she wasn't there. Ruby threw a little bit of a fit and we only stayed for 20 minutes or so. She was thinking - I remember this place, get me OUT OF HERE! It was so wonderful to walk out of there with Ruby in my arms and know that our lives are so much different since the last time we left there together. It's really quite amazing how much things have changed. Just this time last year, I had just recieved the devastating news that Ruby might have trisomy 18, that she might die, and here we are living our lives somewhat normally! WOW! Sorry for the rant, I just have to reflect sometimes on how amazing our lives have been and how far we have come.

Thanks for checking in! I'll write again soon. Love to you all and have a wonderful weekend!

Hello! We are officially moved in and I have internet at home again. The move went so smoothly, thanks to SO many people - my parents, my uncle Pat and aunt Mary Jo, my cousin Kevin, my friends Joni, John and Brooke. I seriously don't know what I would have done without their help. The move out of my apartment took a little less than 2 hours and the move into the townhome took less than 30 minutes! It was so slick! We aren't fully settled in yet. There are still plenty of boxes to unpack! It just feels so good to be in a bigger place! It is very weird sleeping in a different room than Ruby. I haven't slept 100% the past couple of nights because I worry that I might not hear her cry (even though I do) and it is also very weird not to hear her breathe or move, so I have gotten up a few times in the middle of the night very disoriented wondering where she is and if she's okay. Her door is only a few feet from mine, but it's going to take some getting used to. She seems to be sleeping a little longer and has only been crying once around 3 or so, falling back to sleep and then getting up at 5 to eat some breakfast!

Today Ruby had an appointment with her cornea specialist. He has been seeing her since she was in the NICU and has been evaluating her to see if she's a candidate for a cornea transplant. In the past he hasn't felt that it would be a worthwhile procedure and the bad things far outweigh any good that could come of it. At this point, he doesn't feel that doing  a corneal transplant would help her to see better. Her right eye (which was supposedly her better eye) has started to turn in, almost like she's going cross-eyed in that eye. That means that it is getting limited visual stimulation and could be getting worse. Her left eye is better than the right, but still not very good. He can tell that she can see light in both eyes, but he just can't say how much. I am quite sure that Ruby can see more than we think and we really won't know until she can tell us!

Ruby was, as always, the hit of the waiting room at the doctor this morning. That girl attracts so many admirers! People just come up and talk to me like we are long-lost friends. I was talking to a woman in the waiting room today whose son was born with Cerebral palsy and is in a wheelchair. We were talking about how people ask the oddest (and sometimes very rude) questions about our children with special needs. Her son is now 16, so she's had many years of experience with this. She said that when he was a baby, it was really hard and the rude and probing questions and comments hurt her. I completely relate to that. I think it takes a long time to build up a tough skin and to not be affected by the questions people ask about your beloved and beautiful child.

Tomorrow Ruby has a meeting to check on the progress of OT, PT, and vision therapy. All of her therapists are coming over in the morning to chat and discuss Ruby's strenghts and weaknesses. It should be interesting. Then, we are heading up to the NICU to visit Ruby's good old friends there, namely her primary nurse who took care of her much of the time she was in the hospital. I'm really excited to see some of those friendly faces again who were so wonderful to Ruby while she was living there! On Friday, Ruby has a NICU follow-up appointment. She will be seen by the neonatologist who has been monitoring her progress since she was discharged. Those appointments are really fun too, because her doctors at Fairview were amazing and they always provide me with great insight and encouragement. They really enjoy seeing Ruby, too. I'll let you know how it goes and what I find out!

Hope everyone is doing well and thanks for checking up on miss Ruby!