The "Five O's" Grows!

Ruby lost 5 ounces again but they still let us go; not that I was going to stay anyways, but it's nice to not have to leave against medical advice. I was very grateful that my mom came down to keep us company as the discharge takes forever! She helped feed and play with Ruby so I could pack up last minute items and get discharge information. I was also grateful for her help while I stopped at the pharmacy and with loading up all our stuff. I sent a lot home with Steve last night but somehow there still was a lot! Ruby waved at the nurses as we were leaving and waved at everyone in the skywalk as we left. It was pretty funny. We could read her mind, "I'm outta here!!!" We are finally home and it feels sooooooooo good!! Ruby was very excited to have room to run and play! She did lots of exploring inside and out. And smiled more than I have ever seen. Our game plan for Ruby is to love her, feed her and watch her grow. We will have to continue to giv...

Today was another good day. Ruby's job was to eat, drink and grow! She did just that and the scale worked in our favor today and she was a whopping 11 pounds 6 ounces. Yeah Ruby!!! We spent the day playing and for those that have met Ruby, she plays hard and probably burned off all the calories she ate! We had another wonderful visit from friends Carrie and Megan, Papa and Nana Olson and Steve. She wasn't as fun for Papa, Nana and Daddy's visit because she was tired. In rounds today, they said she could go home tomorrow if she continues to gain weight and drink. I told them she will and we WILL go home tomorrow. All the testing is done and we can work on growing at home. She will need to go home with the NG tube and I'm fine with that. Her goal is to drink 14 ounces of liquids/day and if she doesn't make it, I will need to supplement through the tube. Not too concerned about it. They are setting up home health to check on her and to have some...

Wow! One week in a hospital and counting.....counting down the days!! Ruby has spent more time in a hospital than all 5 of us combined! When she was 10 months old she was in the hospital for 31 days all alone. That thought makes me sad. A lot of the things I know she has been through in her short 23 months of life can make someone sad, however it is all those things that have made our little Roo the beautiful, amazing, sweet, girl that she is. She is confident, funny, happy, content, curious, fascinated, busy, fast, strong and full of joy. She continues to amaze me everyday as I fall more and more in love. Today was a great day! It started off bright and early with lab draws. That was it for the yucky stuff! She got a bath finally now that the IV is out. We had a visit from the physical therapist and occupational therapist. Those visits are fun because they just play with her (so she thinks). They gave me some good suggestions for exercises but do recommend outpatient PT and OT...

Oh sweet little Ruby. Another tough day. It started with being NPO (nothing to eat or drink) since midnight again. They put an NG tube (feeding tube in through the nose) in for her to be able to do the  upper GI test because she has not been drinking and they need her to drink for the test. Well, she was so hungry by 11am that she drank for the radiologist and he didn't use the tube at all! After the GI test we had enough time to get a little lunch in before heading to audiology. I think her hearing is fine but it is part of the genetic workup. She did not want to play with the audiologists today so we had to schedule an appointment as an outpatient. Ruby and I had another special visitor today. My friend Megan Ramspott came and brought me dinner and dessert!! Yum!! Ruby was very playful with her since she didn't have any needles or a stethoscope! The GI doctors came in to tell me that Ruby does not have anything structurally wrong with her esophagus, stomach an...

Today was another great day! Ruby and I were blessed to have several visitors so the day went nice and quick. First grandma and grandpa Flynn came again. When Ruby saw them at the door she stood up and shook with excitement! Then Steve and Elliana, Aunt Becky, friends Jen and Emily Nowak and my co-worker/friend Jess. They are all so sweet and shower Ruby with gifts and me with chocolate!! She caught up on her sleep too and took two naps-one with her older sister, Elliana. Rounds were similar to yesterday except for me politely suggesting a full GI workup. I really would like to get to the bottom of these episodes and why she is not gaining weight. They informed me that she will need to stay in the hospital until she starts gaining weight. She is currently 11 pounds (with the wrist splint on). That is the same weight as yesterday. They capped the IV late morning and want to see if she can keep the weight on without help from the fluids. A capped IV=happy girl and mom...

Ruby had a much better day today. She had labs drawn this am but that was it!! Rounds did not give me any more information. Apparently not much is done around the hospital on the weekends unless it's an emergency. I didn't mind the break and I'm certain Ruby didn't either. She had special visitors again. Grandma and Grandpa Flynn came and gave Ruby her first sucker. (That is my dad's goal with all the kids). She loved it! She had sticky grape sucker saliva all over her face and body, even in her eye! She did not mind though. Grandpa put Ruby to sleep and rocked her for over an hour (very tough job for a grandpa to nap with his grand baby.) She ate lunch and threw up two times again. It's not much but enough for me to remind the doctors the main reason we are here is to figure out her GI issues. It seems they are so fascinated by her size and what she can do that the focus has been on genetic testing and not GI. After lunch she had more special ...

Ruby slept great last night. She sleeps on the pull out bed with me because the crib is where they do the lab work and she is no way going to rest there. Several times throughout the night I could feel her reach for me without a peep just to make sure I'm still there, and then her tiny body would relax again. She woke up with smiles on her face and played a little in bed with me. As soon as she turned around and saw the rest of the room and where she was she grabbed on tight and just laid on me. No more smiles after that. I had to keep her very busy to distract her from wanting to eat as she cannot eat before her testing today. Luckily for us they came to get her early to do the MRI and echo (heart test) so we didn't have to wait until 11 without food. We went to imaging and they were concerned because her blood pressure was high and her blood sugars were low. They put an IV in and ended up giving her sugar to bring her levels up before they sedated her. I cannot st...