Each day is a blur, so when people ask me “How are the boys today?” I am never quite sure how to respond. I could give the long version – the version where I include their O2 rates, pressure level changes on the oscillator, change in antibiotics, feed mls, number of “spells” they have had in the last 12 hours, CO2 levels in their blood compared to the last blood gas they had three hours before, saturation levels… or I could just tell you that “they are okay”. I know that my long version, while to me seems easy to understand and not really alarming, is a lot to handle for people who don’t sit in the NICU everyday for five hours. But I feel like just saying “they’re okay” minimizes the hours I spend talking to nurses, doctors as well as the fighting the boys are doing just to get to where they are. I don’t mean to sound ungrateful for the question – I like that people ask how they are doing. I just wish I had an answer that would give a clear idea about how they are doing, without making it sound like a day at the park or a house of horrors. It is a fine faint line! So prepare yourself, today I am giving the long version. So for some, you may read the paragraphs below and think “poor boys/Camps…” but remember, we have been doing this for over a month, and we are neither freaked out nor overwhelmed by what for us is the daily report on the boys.
Carter
Carter has had a hard road in the respiratory department. Last Wednesday at one point they thought both of his lungs collapsed, and they couldn’t get his saturation levels (amount of O2 in his blood, which should be between 88 – 95%) above 70. A team of doctors, nurses, respiratory therapists and Tim and I stood around him as he “desatted” (dropped his saturation levels) over and over again into the 50s. They turned up his percentage of O2 to 100% (we breathe room air at 21%), increased his pressure (the pressure amount inflating his lungs by machine) and still he continued to desat. I spoke up and asked if they checked the placement of his tube, because I know that he moves a lot and the tube moves with him. Sure enough, the tube had slipped and needed adjusting. (You know you have been around medical things too much when you can help diagnose the problem) After awhile Carter stabilized again but not before the drs. thought up many different reasons for his multiple spells. In the end, it was yeast growing in his trachea…yes, a yeast infection of sorts. Gross, I know. Since then Carter has improved.
- He is tolerating 20ccs of food every three hours (although sometimes he pushes 10ccs or so back up in his tube.)
- He weighed 1190 kgs yesterday. (About 2lbs 10 ozs.) but weighed 1270 (2 lbs. 13 oz) two days ago – he lost some weight fighting his oscillator, but I am sure it will come back soon!
- He is at 35% O2 last time I talked with a nurse. This is amazing considering last week he was always between 60 – 70%! On Thursday he even made it down to 28% and was in less O2 than his brother – this never happens!
- They removed his PICC line (like an IV that goes far into his body and can last for a long time) which was clotted and now was two IVs (these will need to be changed often).
- He was weaned off of the fentynol (an addictive sedation drug) yesterday and is now on methadone to help with the withdrawal from the fentynol. This will take about a month but will go home no longer addicted to drugs 🙂 In the meantime, if he needs sedation he will be given morphine.
- We were told this week that it is very likely that he will go home on oxygen and monitors, given that he has chronic lung disease. But this is pretty common and still a long way off for him.
- He was given two rounds of steroids to help his lungs before they found out about the infection and so had to stop them.
- He was given a clean “giraffe” bed and trach tube to get rid of any germs hanging around.
- His blood gasses are getting better. Instead of 56% CO2 output he is at 48%. (the lower the better)
- Yesterday he had “the best lung xray” his doctor had ever seen for him!
- So…he’s okay!
Griffin
Griffin was off of the ventilator for about a week. It was amazing! I saw his face, touched him, held him (above his bed) and was only days away from really holding him while I sat in a rocking chair. But then he started having Brady spells (bradycardia is when his heartrate drops really low and he often needs stimulation and on rare occasion bagging to get him breathing again). At the same time as Carter was desatting Griffin was having Bradys that dropped his heart into the high 40s – low 60s. Over and over again his heart would drop then come up. It was terrifying to watch his nurse tap his bottom, lift him up, adjust his O2 levels and wait for his heart rate to go back up. Like Carter, the doctors came up with many reasons as to why this could be happening. In the end, Griffin tested positive for an infection in his blood. So he is on a couple of antibiotics and his spells have subsided. But not before he was intubated (put on a ventilator), gagged out the tube and extubated (taken off the ventilator by taking out the tube) himself, and then re-intubated 10 hours later. Since then though, Griffin too has improved!
- He is still on a vent but only at 25% oxygen with a low pressure.
- He was taken off three of his antibiotics and put on two different ones that would provide better coverage.
- He had a lumbar puncture (like a spinal tap) to make sure that his repeat infections were not meningitis (we should get results in a few days).
- He is eating 2ccs each hour and only giving back some aspirates (things in his feeding tube) but they are not green – just undigested.
- He has had a couple more blood transfusions to replace all the blood they have taken out of him to make sure that his medication levels are correct.
- His blood gasses look great so they will be doing them less frequently.
- He weighs 1170 kgs (about 2 lbs 9 oz).
- He was moved to an isolette instead of “giraffe” bed since they wanted him in a clean bed and he is stable enough to be taken out of his bed to be weighed!
- While he still isn’t regular, his belly xrays look good and don’t show any intestinal issues.
- His lung xrays look better and show less fluid – so the antibiotics are working pnuemonia -like symptoms!
- So…he’s okay!
Most importantly, both boys had their repeat head ultrasounds which were clear! At one month neither boy has a brain bleed. From what we are told, this is amazing in babies that were born at 25 weeks. One nurse said that she is shocked that they are clear of bleeds – and at this point they are basically out of the woods of getting one! A bleed could have been devastating – even if their lungs and nutrition was perfect, without the brain it wouldn’t have mattered. We feel so blessed that they both have “good heads” as their doctors say!
I hope the last 1,000 words haven’t left you depressed. I know it is a lot to take in – but for us, this is what we get each time we call or visit the boys. While there are set backs to report at times we see progress everyday in their growing bodies and expressive faces. The NICU staff has become like a second family to us, the routine of the security desk, waiting for the elevator, hand washing, bells and alarms, feeds, xrays and ultrasounds is now our normal day – and not one that seems sad, difficult or troubling to us. Of course, there are days which cause our blood pressure to rise (like last Wednesday) but overall there is more joy than sorrow when we look at our tiny little fighters lying in their beds. We feel blessed that God has given us the tools and ability to deal with each daily report with confidence and understanding. And especially blessed to have Griffin and Carter in our lives (even in they don’t live in our house…yet!).
Dancing in the Rain 