Saturday, October 31, 2009

Happy Halloween!!!

Again it is a good day for Emma. She is down to 2mcg on the Dopamine- the blood pressure medication. She is still tolerating her feedings well still. Her weight today is 1lb 10oz but Dr Ortiz says alot of it is water weight and so he is going to give her a diuretic to help pee some of it off. He says maybe tomorrow we can clamp off one of the chest tubes and see how she would do- if she does well they will remove it!!!! She had another head ultrasound and we are still negative for any bleeding!!! Otherwise still hanging out, still sedated. Her first Halloween pictures!!! Sorry- no costumes are small enough for her:)

Friday, October 30, 2009

Hooray for Good Days!!!

Sorry to have missed yesterday. I had good intentions to do this daily but it has proven to be hard to do. Emma had another good day yesterday. Still tweaking the ventilator. Otherwise a good day. Today however has been even better!!! They decreased the humidity in the incubator to 75%- down from 90%. They stopped the bilirubin light- this means her liver is kicking in well. They have increased her feedings to 4cc every 3 hours and she is doing excellent with it!!! She had a poop today!!! Yea poop!!! Her chest x rays have been looking great, no more collapsed lung!!! I was able to lube her up in her lotion today and changed her diaper! But the best part of the day... she is beginning to open her eyes. Beautiful big brown eyes, only about half way so far but hopefully in the next few days they will be fully opened! She weighs 1lb 9 oz today!!! GO EMMA GO!!! THANK YOU JESUS FOR THE GOOD DAYS!!!!

Wednesday, October 28, 2009

Just Chillin'

Today has been a decent day for Emma. There has been lots of "tweaking" of the breathing machine to try to find the best settings for her little lungs. The issue is that she is not blowing off her co2 and in order to do that they have to increase the pressures of the machine. When you increase the pressures, you increase the risk of collapsing her weak left lung. So we are walking a tight line here of what is best for her. They started her on steroids this evening to try to help with the lung function and we have had good success. She is still sedated with pain meds and a sedative as needed to keep her calm , resting and recuperating. She has been tolerating her feedings well (yea!) and a repeat head ultrasound this am still shows no bleeding in her brain (double yea!!). I also got to change her diaper last night for the first time!!!! So exciting!

Tuesday, October 27, 2009

Another day, another chest tube!!

SO this am I received a call from Emmas doc that the new chest tube in place was just not doing enough to keep her left lung inflated. They had to now place a larger, second chest tube to basically help the first one. All of this is not her fault! Her lungs are immature yes but all of this damage was done on Saturday with her surgery and now we are trying to correct mans mishaps!!! We are stilll in the rest a few days mode and so still sedated and on minimal stimulation- only touched if absolutely neccessary. I woke up this am with a song stuck in my head and the chorus goes like this:
the voice of truth, tells me a different story
the voice of truth says do not be afraid
the voice of truth says "this is for MY glory"
I WILL CHOOSE to listen AND believe- the voice of truth!!
So this is just to get us up to date on the last 5 days of Emma's life. Born on October 22, 2009 she was immediately intubated and assisted with her breathing. Lungs are way too immature to do that for her yet!!! They warned us of the "honeymoon" phase were all looks wonderful for the first 24-48 hours but I didn't really listen. Her first day of life- Friday, was good. With the breathing tube still in place but basically on room air, no bleeding issues, no heart murmurs heard.
Day 2- Again things were going well for her. They had tried in the early morning to see how she would tolerate a CPAP trial on the vent- a very positive sign. But she never fully recovered from this. They seemed to be chasing her oxygen all day. An echo cardiogram showed a PDA- very common for kiddos Emma's size and age. As long as it wasn't causing any breathing problems we were good. I was discharged from the hospital that evening. She received her first blood transfusion because they draw so much for lab work every few hours.
As I pulled into the driveway of my house, I received a call that Emma's PDA was severe and causing problems for her breathing, she would need surgery to repair it... if I could please come back to sign consent forms . In a fog, Rob and I headed to the hospital I had just left 30 minutes ago. Paperwork signed, CVOR team at the bedside with the surgeon, anesthesiologist, techs and nurses Emma had a PDA ligation done. We were told it was a success... "great" results. The follow up CXR showed the clip was in good place but her entire left lung had collapsed. Apparently they had caused some lung tissue trauma upon moving her lung out of the way to get to her heart. Basically her lung was now leaking air into her pleural space in her ribcage area. She needed a chest tube in order to re-inflate her lung and relieve the building pressure. This was done emergent at the bedside. Once done, she seemed to be doing better. Oxygen was better and able to be weaned down slowly... it was all better.
Day 3- In the am of day 3 I received a phone call from one of Emma's docs that they had to place her on a different ventilator. The standard one was too harsh for her injured lung and so they placed her on a specialized machine. It basically "pants" for her 600 times a minute. So no deep breaths but a ton of little panting breaths, similar to how a dog pants when they are trying to cool off. This is to decrease any additional damage and let that left lung rest and recover. They had to start her on dopamine to keep her blood pressure up- but only because they were giving her versed and fentanyl to keep her sedated. It was hard for Rob and I because a rest day really means a no progress day and we had gotten used to hearing positive reports every time... not just "oh she's the same". But no news is good news!!!
Day 4- In the AM she looked good. Received a call in the evening that her chest tube had apparently clogged up and was no longer working, causing the pressure to again collapse her left lung. They placed a second chest tube and then removed the first one. Another rough night and now back to square one for the rest and relaxation mode we have been in.
And so that's up to date to today, which will be a separate post!!! Please to all who may read this or may stumble upon our little story, PLEASE continue to pray for our little baby girl!!! She has such a long road ahead of her, so many obstacles to overcome and we are only just beginning...