Day Three
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 stress enough how incredible this team of doctors and nurses are here at Children's Hospital. They explain everything in detail before doing it and make sure you understand every possible circumstance. The nursing staff clearly loves their jobs and have been wonderful to Ruby and me. Even nurses on the floor that are not Ruby's love to socialize with her. And they are very good at handing the tissue box to over-emotional mothers!
Rounds this morning went as expected. She continues to puzzle the doctors. The results of the X-rays and ultrasound from yesterday show her bones to be weak (probably due to malnutrition). That can improve with proper nutrition. She lost a little bit of weight again but maybe because she hasn't eaten anything since dinner last night.
I went into the recovery room to be with her when she woke up so I held her and I waited....and waited....and waited and she would not wake up. She was out for over 3 hours after the procedure. The anesthesiologist came in twice to try to arouse her and she could not. I suggested they call lab down to get their share of blood for the day and they did. That did wake her up somewhat but she would still not open her eyes.
We came back to her room and they continued to monitor her closely because her heart rate dropped repeatedly. Blood sugars were tested and they were fine. I think she was completely exhausted and did not want to wake up and get poked again. They had to put in 2 IV's as the one in her hand did not work very well so they put a second one in her foot. They have been using the one in the foot but then she cannot walk on it so the nurse tried the hand one and it worked! They are running fluids continuously and if it works through the night they will remove the foot IV so she can walk.
The eye specialist dilated her eyes and did her exam. She presents with non-specific mutated pigment. Whatever that means but they were looking for clues into a type of genetic disorder. I think the results they are getting are not adding up to any specific disorder. I will be curious to hear the MRI results in the am.
Ruby had more special visitors today. Cousin's Melissa and McKenna. Ruby was very tired still but when she heard McKenna's sweet voice, she perked up and sat on the floor and watched Mckenna play. She did try to play a little but all her extremities are hooked up to something and it must have been too much work to figure out how to use it. They brought Ruby sweet gifts but her favorite was a super soft stuffed dog. Ruby loved it- especially when the nurse came in again.
She also had a visit from her daddy and big sister Elliana. She was unable to give any smiles today but was cuddly. She does not like her IV's or pulse ox but when distracted by food she forgets about them.
She ate quite a bit when she woke up over the course of 3 hours but then threw up so we think she overloaded on the food!
As I reflect on our day a funny story comes to mind (and there are not too many of those!) The nurse that cared for her for her MRI had on a Children's Hospital t-shirt and on the back was printed:
"A person's a person no matter how small" by Dr. Seuss. I read that and started crying. The nurse turned around and asked if I was OK and I just told her I loved her shirt. HAHAHA. She probably thinks I need a psych consult!!
I'm going to crawl into bed now and snuggle with my little Roo and all her tubes and hope I don't get tangled!! Good night!
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 stress enough how incredible this team of doctors and nurses are here at Children's Hospital. They explain everything in detail before doing it and make sure you understand every possible circumstance. The nursing staff clearly loves their jobs and have been wonderful to Ruby and me. Even nurses on the floor that are not Ruby's love to socialize with her. And they are very good at handing the tissue box to over-emotional mothers!
Rounds this morning went as expected. She continues to puzzle the doctors. The results of the X-rays and ultrasound from yesterday show her bones to be weak (probably due to malnutrition). That can improve with proper nutrition. She lost a little bit of weight again but maybe because she hasn't eaten anything since dinner last night.
I went into the recovery room to be with her when she woke up so I held her and I waited....and waited....and waited and she would not wake up. She was out for over 3 hours after the procedure. The anesthesiologist came in twice to try to arouse her and she could not. I suggested they call lab down to get their share of blood for the day and they did. That did wake her up somewhat but she would still not open her eyes.
We came back to her room and they continued to monitor her closely because her heart rate dropped repeatedly. Blood sugars were tested and they were fine. I think she was completely exhausted and did not want to wake up and get poked again. They had to put in 2 IV's as the one in her hand did not work very well so they put a second one in her foot. They have been using the one in the foot but then she cannot walk on it so the nurse tried the hand one and it worked! They are running fluids continuously and if it works through the night they will remove the foot IV so she can walk.
The eye specialist dilated her eyes and did her exam. She presents with non-specific mutated pigment. Whatever that means but they were looking for clues into a type of genetic disorder. I think the results they are getting are not adding up to any specific disorder. I will be curious to hear the MRI results in the am.
Ruby had more special visitors today. Cousin's Melissa and McKenna. Ruby was very tired still but when she heard McKenna's sweet voice, she perked up and sat on the floor and watched Mckenna play. She did try to play a little but all her extremities are hooked up to something and it must have been too much work to figure out how to use it. They brought Ruby sweet gifts but her favorite was a super soft stuffed dog. Ruby loved it- especially when the nurse came in again.
She also had a visit from her daddy and big sister Elliana. She was unable to give any smiles today but was cuddly. She does not like her IV's or pulse ox but when distracted by food she forgets about them.
She ate quite a bit when she woke up over the course of 3 hours but then threw up so we think she overloaded on the food!
As I reflect on our day a funny story comes to mind (and there are not too many of those!) The nurse that cared for her for her MRI had on a Children's Hospital t-shirt and on the back was printed:
"A person's a person no matter how small" by Dr. Seuss. I read that and started crying. The nurse turned around and asked if I was OK and I just told her I loved her shirt. HAHAHA. She probably thinks I need a psych consult!!
I'm going to crawl into bed now and snuggle with my little Roo and all her tubes and hope I don't get tangled!! Good night!
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