Getting Answers

  This picture that the nurse sent us on Tuesday cracks me up! It looks like Emma is just whistling the day away while she waits to find out all of the Michigan details. ~ La dee da. That's how I've felt the past few days, but with checking my phone every few minutes to make sure I didn't miss a call.

   Yesterday we found out that Emma has officially been accepted to Michigan for her surgery. Yippee!! It's really happening!! They also said they would create a stint to hold her trachea open as well as for the bronchi. Today the social worker called me and said that my insurance company confirmed that they will cover the medical flight and hospital stay while in Michigan! She is also getting things arranged for where we will stay while we are up there. The reason we didn’t leave today is because their PICU (Emma will get upgraded to the pediatric suite, with the big kids) is full right now, so we’re praying for another baby to have a speedy recovery, so Emma can have that baby’s spot in Michigan. We aren’t sure if they will call us tomorrow and Emma and I will fly out on Sunday, (Michael has to fly separately) or if it will be more scheduled and we’ll leave in a few weeks? Either way they told us to be ready to leave with short notice and that we should plan to be there for about 8 weeks. I’m already packed! We’re definitely praying to go as soon as possible because Emma is still passing out every day. On Wednesday she passed out twice while I was there and three times that night. 

   When I was there in the afternoon, she passed out after half waking up from a nap and realizing she was lying in a dirty diaper. I changed her diaper, but five minutes later she had gas which caused her to cry a lot and pass out again. A nurse came in (the regular nurse was on break) and began giving Emma a lot of manual breaths with the ventilator which is the best for her, knowing not to disconnect her trach from the ventilator to “bag her” which is like CPR through the trach. The nurse called for more help and told someone to get Gary. “He always knows what to do with her vent settings.” It’s true and because of that, he is making sure he is on the flight with us to Michigan. Gary turns up her oxygen by ten percent (I already did it that time before the nurse came in) and her Tidal Volume by five percent and then eventually (after 10 to 30 long seconds) she starts making noise, turning pink again, and slowly opens her eyes. Her hands reach out in front of her and if I’m there I put my finger in her hand. She grasps it tight, and I like her knowing that I’m there even if I can’t do anything else to help her. But sometimes just being there for someone is the thing they need the most, right?

   We used to sit her up and gently rub her chest over her heart during the breath-holding spells since her heart rate drops low (around 50?) and we thought that would help, but one day at the end of September the doctor told us they had done another X-ray and saw that she had fractures on six of her ribs! They were unsure of the cause of it. They thought she had brittle bone disease, so they tested her for that, but luckily it came back negative. They added extra iron and magnesium into her formula to help the ribs heal on their own. I sometimes forget about that issue, but was reminded of it again on Wednesday when Gary was talking to another respiratory therapist who works in pediatrics. “A lot of the normal things that work on kids her age, don’t work on her. She is very particular. She can’t be bagged because every time her ventilator is disconnected, her lungs collapse. And you can’t give her chest compressions because the first time you push down, you’ll crack every rib in her body.” I heard Gary say that if someone doesn’t handle things correctly according to all of Emma’s necessary rules, she could get BPD (bronchopulmonary dysplasia), which is a form of chronic lung disease that affects newborns and infants. It results from damage to the lungs caused by mechanical ventilation and long-term use of oxygen. The nurse says right now Emma does not have that, but when we get back from Michigan, she will have to get weaned off of her medicines, mainly Adavan. 

   Emma has been doing well with keeping her legs down/straight for the past couple of months, with the help of physical therapy (when she will tolerate it), but when she’s extra tired or wants them up, this is how they look: You can see how her knees bend up or backwards depending on the angle you’re looking at. She was breech for at least half of the pregnancy, so I think her legs got formed that way from being in the upwards position for four months, but maybe it has something to do with whatever genetic syndrome she has too? We’re not sure. According to Google it’s called Congenital Genu Recurvatum which translates as "backward-bending knee". Here is a comparison of when she was a few days old to a few days ago (almost 6 months old). So they definitely look better since then. Originally a few days after she was born they told us that her hips were dislocated, but an X-ray the following day showed they were not, so that’s a plus! 

This is a safe (and comfortable) position for her because of the trach.

   There sure is a lot for us to keep praying about! But I make sure to throw in a handful of thank you prayers too, because our daughter could easily be in Heaven right now. I am very happy that she is not. I am happy that we get to hold her and kiss her and that she is so comfy in our arms most of the time that she falls back asleep. I’m glad that she has not really been puffy this week (just her eyelids) and that she has been sleeping so well, with a great resting heart rate of 134 and 20 breaths per minute. The two weeks before that while she was puffy, she would keep her eyes closed, but we could tell she wasn’t really sleeping. She was unsettled with a heart rate around 180 and 40-50 breaths per minute. She would get sweaty and cry unless someone held her pacifier in. Now since she sleeps so well during the day, the nurses at night send us updates around 3am and she’s usually awake. Party time!! She is being weighed three times per week right now and her weight on Tuesday was 9 pounds, 1 ounce.