If only kisses could heal

I'm sitting here, staring at my keyboard, with so many thoughts going through my head about this past week-it seems almost impossible to put it all into words. Right now I'm feeling guilty. Guilty because I'm sitting at home while Brody is in the NICU waiting to be transported down the hall for a renal scan. I should be there with him. But I'm not. I convinced myself to stay home because there's nothing I could do there but sit in the waiting room all day long. But I still can't help the tears of guilt from streaming down my face.

Last Monday I felt defeated since Brody had to be reintubated.  That was followed by a very scary and frustrating Tuesday.  When I arrived in the NICU the nurse was still waiting on the tubing to come in so they could start the dialysis. Three hours after Brody was to begin his PD treatment, and after a lot of frustration trying to find another solution to get the PD started without the correct tubing, it finally arrived. Brody must have been irritated with the situation as well...even though he was still receiving heavy doses of pain and sedation meds he was fighting the ventilator pretty good. This was so very difficult to watch as all I wanted to do was scoop him up and try to comfort him. It's hard being denied that natural maternal instinct. Everything I want to do I can't. I just have to sit back and watch the nurses do their job.  Brody now very much resembles the preemie that he is (yet he's still one of the "bigger babies" in the NICU). I didn't realize how swollen he was this same time a week ago. To me he looked like a plump newborn. What I thought was fat was every bit fluid. He is so tiny and skinny now that he's had so much fluid taken off with the dialysis. Here are two pictures of his feet to compare and show just how much fluid he was retaining.

3-24-12

4-2-12

Friday was another difficult day. When the nurses tell you he's been very upset and they have to keep pumping him full of meds to sedate him, it's pretty heart wrenching. Adam and I got to the hospital late that evening and again I was unable to comfort my baby. I think back to the days when Ryder was a newborn and he'd be screaming his little head off. I'd pick him up and rock him. Pace the room with him in my arms, crying with him and begging him to tell me what was wrong. I'd pass him to Adam and he'd swing him in his car seat. I'd burp him or try to feed him. Change his diaper and laugh as he always seemed to pee right when I took his diaper off. Then smile and caress his face once he finally stopped crying, feeling a sense of accomplishment knowing I really can do this whole mommy thing. ..It's such a different experience now. I see my baby cry, although I cannot hear him, and the most I can do is offer my finger for him to squeeze.

3-28-12

Just as I was struggling to leave Brody once again and after Adam and I prayed over him for the billionth time, I checked my phone and saw that I had a message on Facebook. It was from a sweet friend who offered some much needed words of encouragement. I told her and I will tell you the same...It never ceases to amaze me, somehow I always get a hug (whether real, or through writing) right when I need it. God must know when I need a friend to remind me that He is present and listening to our prayers. I left the hospital that night with a little more peace in my heart than when I arrived.

Brody was three weeks old this past Sunday. And what a great Sunday it was. We started the day out at Church for the Palm Sunday service...Ryder got to walk down the isle waving a palm branch and my heart swelled with pride. Church was followed by a delicious lunch at the park and an Easter egg hunt which Ryder LOVED. He even got to sit with a real bunny. How I wish I could have taken pictures of both my boys that day. The weather was perfect. And I can only imagine how handsome Brody will look with the sun shining down on his face!!  ...When Adam and I got to the hospital Brody was awake and alert...I think he was waiting for us! We still can't quite determine what color his eyes are, although I know they'll probably change. I think they're blue. Adam sees hazel in them.  Either way, they are gorgeous and I love when he has his eyes open and looks around, blinking hard and slow, his right eye slightly bigger than his left. It's so much easier to stand at his bedside and just stare at him when he looks comfy and content. Much easier on my heart. I kissed his head a million times (as I do every day) and told him how proud I am of him. He's so strong and so tough. And he amazes me everyday.

4-1-12

Yesterday I got to hang out with Brody for a couple hours before they started dialysis. He still looked comfortable and even slept through two heal pricks. His blood gases were good and Dr. Kapasi ordered the respiratory therapist to not go up on the ventilator anymore unless there's a real emergency. He said that Brody is handling the decreased settings very well and he thinks, even though his numbers aren't perfect, that he could be taken off the ventilator soon. In his words, "If we try to achieve perfect numbers, he will never come off the vent".  Dr. Kapasi is only hesitant to extubate him because with dialysis his breathing could become compromised and he wouldn't want to intubate him a third time. They started dialysis around noon and for some reason, Brody held on to a lot of fluid. When we called later that evening, his night nurse Heather (we really like her and thankfully she has taken Brody on as her primary patient) said she could already tell he was getting puffy again. I'm really hoping the doctors figure out exactly what's going on in his tiny little body today during the renal scan. Adam and I will head up there after dinner tonight and I am anxiously awaiting a call from the doctor to explain the test results to me.

I love his little elf ear! :)

Until then, here are just some facts from the past week:


Tuesday (3/27):
-Weight: 2.67kg (5.88 lbs)
-Low Calcium. Added to IV
-Weaned ventilator
-16 passes of PD
-O2 got down to 36. Gave him Ativan to calm him down and bumped up O2
-Dialy-Nate tubing 3 hours late.
-Started feeds at 2ml/hr

Wednesday (3/28):
-Weight deferred
-Weaned ventilator and O2
-12 passes of PD
-Feeds increased to 4ml/hr
-Lots of tremors. Could be side effect of sedation meds or imbalanced electrolytes
-Lungs sound much clearer.

Thursday (3/29):
-Weight is 5.57 lbs
-12 passes of PD
-Decreased Vent and O2 some more.
-Feeds increased to 6ml/hr
-PD solution was changed back to 2.5 (to not draw out so much fluid)
-Nephrostomy site leaking a lot
-Sore on bottom
-According to Dr. Kapasi, he has some degree of hypoplasia. I refuse to believe this.

Friday (3/30):
-Weight is 5.5 lbs
-12 passes of PD
-Still weaning vent and O2
-Fentanyl decrease by 1/2 plus boluses when needed.
-Ativan every 4 hours
-Feeds increased to 8ml/hr

Saturday (3/31):
-Weight down to 5.46 lbs
-Feeds increase to 9ml/hr
-12 passes of PD
-Chest xray looked good
-Vent pressures down some more
- Off Fentanyl and now on scheduled Morphine and Ativan

Sunday (4/1):
-Weight back up to 5.5 lbs
-12 passes of PD
-Feeds up to 10ml/hr
-Best blood gas he's had yet

Monday (4/2):
-Weight is 2.58kg (5.68 lbs)
-12 passes of PD (retained a lot of fluid)
-Potassium low (added to IV)
-Feeds increased to 11ml/hr and will increase by 1ml every 12 hrs until he reaches 16ml/hr.
-IV in arm removed
-Received high dose of iron to bump up red blood cells (along with EPO shots)
-Taken off Ancef and will now receive oral antibiotics
-Still receiving scheduled Ativan but Morphine is now on a as-needed basis
-Chest xray showed hazy right lung (he has to lay on right side during dialysis)
-Hyperal being changed to clear fluids.
-Remain on Lipids for calories.