Chapter 3: Week Three

Sunday  3/18/12

Sunday began as a day of dread.  After sobbing through various parts of the night, all I could think of was how much distress Isaac had been in, how helpless we both felt, and wondering how he would fare through another day before his test on Monday.  For the first time, I felt scared to visit him, knowing I would crumble if his discomfort was still as intense as it had been, but we knew we had to see him and provide whatever support we could, if only to stand by his side to let him know we were there.

Upon our arrival to visit him in the NICU, his nurse informed us that the doctor on call decided to request the ECG stat, rather than wait until the following day as originally planned, due to his condition throughout the night.  A nurse practitioner was called in to talk to us about the results and confirmed that he does indeed have a rather large PDA (see Saturday's entry for an explanation), and they had already started him on medication to close the gap.  Since food is contraindicated with the treatment, he was taken off of his feeds and would be given strictly IV fluids for the next two days until the three rounds of medication were complete.  The first dose had already been given, and his signs of distress had already decreased.  Some of the fluid had drained from his lungs, his stats were a little more stable, and he was finally sleeping comfortably without needing sedation.

We knew this didn't mean we were out of the woods, but we were relieved to have 1.) a diagnosis and 2.) a treatment plan for it.  We celebrated his two week birthday with lighter hearts, seeing his feisty side back and hoping for some good reports again over the next couple days.

Happy Two Weeks!

Monday

Today was the day of waiting.  Isaac completed his three rounds of medication and seemed to be faring better, but until another ECG could be performed on Tuesday to determine whether or not the treatment had worked, we would be left waiting, hoping, praying, and pacing.  He was a bit cranky during our evening visit, but nowhere near the level of the previous weekend, so we remained hopeful that the treatment was working.  During the evening, the doctor listened to his heart and didn't detect a murmur, so an extra (fourth) dose of the medication was not determined to be necessary.  If the ECG Tuesday shows otherwise, another full three rounds will be given, but due to the improvement of Isaac's condition right now, he's clear to rest and wait until morning.  Now we just have to wait on the sidelines and cheer for our feisty boy's heart to behave, seal the gap, and get back to business.


Tuesday

Today was our first sit down meeting with Isaac's medical staff.  This included his neonatologist, primary day nurse, social worker, respiratory specialist, and the chaplain.  The doctor went over Isaac's treatment plan from birth to the present, covering obstacles along the way, alterations to his treatment, and expectations for the days to come.  At present, his heart treatment worked and the PDA has closed.  She informed us that this is a temporary fix and it could reopen at any time, but they will monitor it closely and care for it as needed.

He also has been diagnosed with bronchopulmonary dysplasia (http://kidshealth.org/parent/medical/lungs/bpd.html) from being on the oscillator/ventillator, so his chances of requiring oxygen when he is released to go home are high, but hopefully the damage in his lungs will heal itself as he grows.  It's just another part of the waiting game right now.  In the meantime, they resumed his feeds, and are hoping to start weaning him off of his IV fluids as his milk intake increases.  She reminded us that we're still early in the NICU roller coaster ride, and to expect a  mix of good and bad days ahead, but to take it all one day at a time.

Following the meeting were a few more "firsts."

Grammy had her first contact.

Mommy changed her first diaper.

We were told that by next week, if he's continuing on track, Daddy and I can both hold him doing Kangaroo Care!  (http://www.med.umich.edu/nicu/pdf/C.3KangarooCare.pdf)  And for the first time in days, Mommy slept through the night.

Wednesday

A day summed up in pictures:

Sleeping

 Lounging

If a picture says a thousand words, this video says so much more:

Thursday                             

--not a great day
--high levels of carbon dioxide                                    
--100% oxygen required all day                                                                     
--restless baby                              
--unable to get comfortable              
--swinging down in the 50's on O2 absorption 
--pre-steroid treatment                 
--feedings up to 5 ml

vs.

Friday 

--a great day

--his lowest CO2 levels yet

--O2 levels varying from 80-100%
--restful, sleeping baby
--lounging and comfy
--swinging 80's-100% on O2 absorption
--on steroid treatment
--feedings up to 11 ml

All in all, Thursday wasn't the best day ever, but Fridy was amazing.  We're hoping his Friday pattern continues through the weekend and beyond.  It was so good to see him sleeping soundly for a change.  If his feeds are still increasing and he's continuing to sleep as well as he has been, hopefully that means his body is growing, strengthening, and his lungs will start developing.  Go, Isaac, go!


Saturday

 Saturday was mostly a repeat of Friday, so we were thrilled to have two good days in a row.  Isaac had his lowest CO2 level yet, down in the 30s, which was amazing.  We had a nice evening visit, chatting with his nurse and enjoying time with our son.

(I think Aaron has photos on his phone; pictures of cuteness coming soon.)