November 22 - December 3, 2015

I am WAY overdue to getting a blog post up for all of you! It has been a busy couple of weeks!

Anna remained intubated and sedated until surgery on Tuesday, November 24. It was scheduled to be anytime after 3 pm, and after waiting and waiting - we finally headed down around 8pm. It took another hour for all the OR staff to be ready and she was wheeled into the OR around 9pm. At around 10pm the general surgeon came and said the g-tube placement had gone well and ENT was starting the bronch scope and tracheostomy. The ENT doctor came out at about 11pm to say he was finished. During the scope he found that she had posterior tracheal-malatia. This means that the back of her trachea bulges into her airway and cuts it off. This diagnosis may get better as she grows (and her airway grows), but we don't know for sure and we don't know how long it may take.

With the tracheostomy put in, we now need to get trained on how to take care of her with it. This involves a number of weeks of classes and then also practicing the skills on Anna. It typically ends up being about 2 months from the time the trach goes in to going home, so it is quite a long process!

Anna was very sedated (even paralyzed for one night), to keep her from moving as keeping the trach in for at the least the first 48 hours is very important! The tracheostomy is quite a painful procedure to heal from, so her sedation/pain meds were quite high for a few days. She was bloated going into surgery and she only became more bloated after surgery! She was holding onto an extra 600+ gram of fluids! Our poor puffy baby!

We found that Anna needed more oxygen than we thought and was desating fairly often. They were a bit concerned about her heart, so they performed an echo. From that, we found out that Anna had pulmonary hypertenion and that her PDA was larger than before and shunting a fair amount of blood through it. We are REALLY REALLY hoping that as the fluid comes off and the stress of the surgery fades away, so does her pulmonary hypertension, which in turn allows her PDA to close more. If not, she may need medication to reduce her pulmonary hypertension and possible surgery to close her PDA :(

On Saturday night we moved into our own private, bright, sunny, quiet room! Can you tell we are enjoying it! :)

Anna was awake on Tuesday morning when I came in. It was so nice to see her awake and alert again! Unfortunately she was also running a fever, had a high heart rate and also was having some more desating episodes. They put this all together and figured she had caught another bug, so antibiotics were started again (her CRP level confirmed this on Wednesday). Even though she had caught a bug, I would never have thought it! She was so alert, content and awake ALL day (and also stayed awake ALL night). 

She continued the awake pattern pretty much ALL day Wednesday. Her temperature and heart rate were both down to normal again, and she seemed totally back to herself. We enjoyed our FIRST snuggle in TWO WEEKS! (I think her mom needed it more than her, but we both enjoyed it :) Anna finally crashed that night and slept 9 hours straight!

We are very much enjoying that our girl is back to herself! On Thursday, she has officially lost all of her water weight and is back down to around 3000 grams. We had another snuggle and I was also able to give her a bath! I have been trained on how to do feeds and care for her g-tube. I am thankful that training for that has been easy and doesn't involve much, since the trach will require much more training!

She is still requiring ventilation help, but they are very slowly working on weaning her off. They want to do another ECHO next week to check on her PDA and pulmonary hypertension. Please pray that the pressures have reduced and her PDA is not shunting as much! Pray that she continues to heal and we are able to get her off all of the pain meds! Since she has been on it for over 2 weeks and it is a narcotic - the weaning process is slow (to prevent withdrawal symptoms).

In the midst of all this busy-ness with Anna - we of course have done some adventures with our other 2 munchkins! One of those adventures was our first big snow fall up here in Fergus (which has thankfully all melted again!)

Teach me your way, O Lord, that I may walk in your truth; unite my heart to fear your name. I give thanks to you, O Lord my God, with my whole heart, and I will glorify your name forever.

Psalm 86: 11-12