I don't know where to start. The last few days have been full of tears, worries and heartache for our sweet little Callum.
About 2 hours after birth, Callum started showing some signs of respiratory distress and our nurse brought him to their little special care nursery to be assessed. Of course, the nerves set in. I started to second guess myself about how early he really was (thankfully we know now that this isn't the case). As the evening went on, he became sicker and sicker. His respiratory rates were 80-140 breaths per minute (normal is like 40-60!), his oxygen saturations were becoming lower and lower, his need for supplemental oxygen kept growing and growing and he started vomiting up gobs and gobs of amniotic fluid - a sure sign his extremely rapid delivery had a negative effect on his respiratory status.
From about 7pm on, I never left his side. Every time I would start to feel comfortable leaving him to grab some sleep, he started to decline. I stayed with him, held his hand, rubbed his head and let him know I was there for him. He loves to suck, so he stayed calm sucking on my finger. As much as it hurt to not be able to hold my sick little baby boy, at least I was able to help care for him and keep his agitation to a minimum.
Come around 530am (Saturday morning), the nurses had to call in the pediatrician because his status was just declining rapidly. Once the pediatrician came in the decision was made to transfer Callum to Maine Medical Center where they have a great NICU. They were able to transfer my OB care there as well. After staying strong all night (and no sleep), I cried. This wasn't the way it was supposed to be.
Once we got to Maine Medical Center, the NICU team assessed Callum. Since his oxygen requirements were becoming higher and higher, they placed him on CPAP and monitored him closely. They did all sorts of tests on him and the original plan was to let him rest since he was agitated and worked hard on breathing all night long. They did a chest xray which showed a possible 'pneumonia' (not the type you see in adults but fluid or substance in lungs - in our case amniotic fluid). When he got here, he was on 100% oxygen (not good), so they attempted weaning the oxygen to get him down to 50% but he just could not tolerate it at all. After a few hours of trying to stabilize Callum, the NICU doc started talking about intubating him. He showed us his chest XRAYs which were full of white haze, and not black (or air). Before we knew it, Callum was intubated (it took two attempts as Callum had to be difficult and fight the breathing tube), had an umbilical line, was on blood pressure support and was not doing well.
Kevin and I couldn't stop crying yesterday. All I could think of is what did I do to my beautiful baby boy. I couldn't look at my non-pregnant belly, only to think that he should still be inside of me. Protected. Protected by me. I wanted to hold him. Nurse him. Protect him. Hear his piercing newborn cry. Keep me up at night. aAnd all I could do was watch everyone work hard on our sweetheart. We would talk to the doctor and he would say 'this could happen, but I doubt it' - and then...it would happen. Finally by dinnertime, Callum was somewhat stable on a ventilator. It was so difficult to see our little boy on a ventilator. Since they try not to use a lot of sedation here, poor little Callum was so agitated. You could see him trying to cry around the ventilator - every time I looked at him, I cried. It was so sad.
PPHN (persistent pulmonary hypertension of the newborn) - most likely caused by his insanely rapid birth and aspiration of amniotic fluid and the lungs inability to function properly because of this. Something else to add to our list of complications with Callum, it was never ending and heart-wrenching. The NICU doctor assured me and Kevin that this has nothing to do with his gestational age (36w4d) and that Pulmonary Hypertension is a "big baby disease" - full term babies get this, not preterm infants. Knowing this could happen at 38w or 40w or 41w made me feel a little better. Soon after our discussion, the alarms started going off, his oxygen saturations were dropping. And dropping. The nurses and respiratory therapists were in his room trying to suction and stabilize him. They had to increase his oxygen levels to 100% support. It was touch and go for a while, we watched in shock as our sweet baby boy was slipping...
I heard talk about using an oscillating ventilator and nitric oxide, and before we knew it, all sorts of people and equipment were in our room. Callum was placed on the oscillator (which sounds like a car motor as it puts frequent bursts of oxygen into his lungs) with nitric oxide and within minutes his oxygen saturations were improving. I also spoke with the doctor about using more sedation with Callum as he just seemed increasingly agitated and trying to breath over the ventilator. Thankfully, we were both on the same page with this and he started Callum on some morphine and versed. A resting, peaceful Callum was what I wanted to see - not an agitated one (even though I like to see a fiesty little one). Once he was stabilized (1030pm) Kevin and I headed upstairs to sleep. I had been up for 42 hours straight. No joke. The nurse promised to call us if anything changed.
We were so exhausted. My eyes were swollen almost shut from crying. Kevin crawled into bed with me to just be together and before we knew it, it was 4am. You know you are exhausted when sleeping in a hospital bed together is comfortable and you don't wake up. I also realized it was 4am and we had received no call from the NICU. It was good news. Kevin called down to see how Callum was doing and we were told he had been doing well and stable. Just what we needed to hear so we could get some more sleep.
Around 8am (Today, Sunday) we headed back down to the NICU praying for a better day. A stable day. Even a boring day. When we walked into Callums room the nurse had a smile on her face. She said he's been doing well, tolerating the weaning of his oxygen settings (down to 80% from 100%) and acting much quieter - not so irritable. He looked better, too. He looked more relaxed.
As of right now, 530pm on Sunday, he has had a good, boring day. He has tolerated oxygen weaning down to 75% (they've had to stop here, but hoping to get him below 50% by tonight), his blood pressure has begun to increase, which means his pulmonary hypertension is being very well controlled or improving, so they've been able to decrease some of the medication used to increase his blood pressure (dopamine for you medical people). He is a little jaundice today, but that is to be expected because he is not eating, his face is severely bruised from having such a rapid descent at delivery (looks like a mac truck drove over the right side of his face), and he isn't pooping very much (from not eating). He has tolerated position changes, which is something he didn't handle well yesterday at all. I've been able to use the colostrum I pump and swab it into his mouth - the feeling of his little tongue tickling my finger as he tastes what I have for him puts a smile on my face...though only making me want to pick him up and nurse him. My parents and my brother and sister in law have been able to see him today as well.
I only pray that Callum continues to have "boring" days where we hear they are changing things for the BETTER...and we are making progress, even if it is small baby steps, it is progress. While Callum is still a very, very sick little boy, we are left with just a little bit of hope that he is a fighter and will be able to come home as soon as he can.
I will continue to use this blog to update everyone on Callum, so please, check back often. We cannot express how much we appreciate everyones offer of support, help and prayers.