January 18, 2012

Tuesday night Blair and I received a phone call from our nurse telling us they had removed Harli from the conventional ventilator and put her on the vapotherm machine, and she was handling it very well.  When I got off the phone Blair and I were completely confused because all the conversations we had during the day with our doctor he said they weren't going to make the change until Harli forced them, and they would go with the CPAP machine not the vapotherm machine.  With all that being said we are very glad that Harli has made another step in her recovery, but also know Harli has a long road ahead of her.  When we walked in the room our nurse came up to Blair and I and explained how Harli had a great night, but she had a couple of episodes.  (The episodes I am talking about is Harli is only 27 weeks old and until a preemie reaches 35 weeks of age their brain is not developed enough where it tells her body to breathe, with that being said from time to time when Harli falls asleep you have to reach in and move Harli's foot to wake her up so she starts breathing again.  The first few episodes aren't bad but the more times this happens throughout the day the more stress and worry comes over Blair and I.)

When the doctors and nurse practitioners made their round this morning they were talking about the progress Harli has made in the past few days, starting with the whole in her intestine, being put on the jet ventilator and back off the ventilators all in a weeks time.  The doctor and nurse practitioners were very pleased to hear Harli had two bowel movements yesterday, and discussed the steps they would take in checking to see if the hole was still in her intestine.  They said that on Friday morning they would give her the dye and follow it through her system until Saturday morning, taking x-rays the whole time to see if the dye stays where its suppose to or if it ends up in her stomach.  Blair and I did over hear tonight though that whoever is suppose to do the dye on Friday had called and was concerned that it was still to quick to do this procedure so I am sure we will find out more in the morning when the doctor and nurse practitioner's make their rounds.

Blair was able to kangaroo again today with a session lasting a total of two hours.  The nurse was a little worried that the kangaroo session might be cut short because every time Harli is placed on her stomach she falls into a deep sleep and has to be waken up and they obviously want to keep those episodes to a minimum.  Harli did wonderful while on Blair's chest and her vital signs remained strong and perfect throughout the whole session which was another uplifting moment for Blair and I.  Today Harli did have another bowel movement and was still active throughout the day, but not as active as yesterday.  Now that Harli is having to breathe on her own and can not rely on the ventilator it takes a little more strength to breathe so it leaves less strength to get out of her bed.

Blair and I decided to call it an early night because a couple that we have gotten to know in our module informed us that at 10:00 a.m. their son is going to have surgery which will take a couple of hours.  During the time of the surgery our module will be closed so Blair and I are hoping to have an early morning to spend time with Harli before we are asked to leave.  I ask that you pray for the little boy who is having surgery in the morning, we are not clear on the exact procedure but we know this baby is on an EKMO machine.  If anyone is not familiar with this machine it removes the blood from the body runs it through a machine and then puts the blood back in the body.  The couple reinsured us this surgery is something they have known about and it will hopefully get their little boy off the EKMO machine.  We ask that everyone lifts this little boy and his family up in their prayers that the surgeons have success so this little boy can start healing and growing.

Now for the part that most of you have been waiting for the pictures!

Blair holding Harli for the first time on the vapotherm machine.

Our girl all relaxed and sleeping, you get to see more of her face with out the ventilator tube and all the tape.

Every week the parents get to pick out a book for their child so this is the book which we chose for Harli's first.

This is an older picture but I thought I would post it since some have not seen it.  If you look on Harli's arm it she is wearing my wedding ring.