Kaleb Prinz: June 2012

Wow! Time sure flies when you're finally home! The last time I posted, Kaleb was a very sick baby. The pain team finally met with us, and for 2 days, we really thought we had the answer. He was on a pretty amazing medicine regimen: Tylenol, Ibuprofen, Lortab, Morphine, Atavan, and a couple of others I can't even remember now. Our wonderful nurse at the time, Liz, wrote all his meds on the marker board, and I really wish I had taken a picture of it. He was on at least 1 med per hour, and some hours several. But the important thing is he finally stopped screaming.
It's an amazing thing when your child is in as much pain as Kaleb was that weekend. Time seems to stop and all you want is to figure out what's wrong and make it better...whatever it takes. Unfortunately, his belly continued to grow, and his breathing was becoming quite labored. When we found blood in his diaper, they sent us back to the ICU. That was a first, and it was pretty scary. When our fabulous nurse Marianne came in with the Charge Nurse and the Resident in charge for the night, we knew it was bad. We've never packed so quickly or looked so forward to getting Kaleb to the ICU to figure out what was wrong with him.
When we got downstairs, things moved really quickly. Dr. Clay, Casey, Scarlett, and so many others were drawing labs, hooking Kaleb to the monitors, asking/answering questions, and reassuring us as soon as they could that Kaleb was going to be okay. What had taken days to communicate while we were upstairs, was understood and acted upon within hours in the ICU. The scariest possibilities were eliminated fairly quickly, but it was a long night. The next morning, everybody's favorite Cardiologist(okay ours!) Dr. Nugent, was on in the ICU and that was the turning point for Kaleb. The first thing he did was remove all the pain meds. Somehow, he could tell by the way Kaleb was breathing that he was over-saturated. He adjusted Kaleb's oxygen, and the combination was exactly what he needed. Kaleb started improving immediately, and within 2 days, they were moving us back upstairs. For the record, Dr. Nugent is AWESOME!!
When we got back upstairs, Dr. Mahoney was on service and we love her. She has helped us with so much, and this time was no different. At this point, the only things we needed to have under control were Kaleb's belly and his feedings. As a result of all of the narcotics, his precious belly was so bloated, his innie was a very strange outie. It took time, but Dr. Mahoney and her team turned him around, and we began increasing his feedings. For the first time since he was born, the Drs let us give him straight breast milk! Of course, this meant giving him a lot more milk to make up for the calories missing from the fortification. This presented a unique problem for us, or rather for me. I've been pumping 5 times a day, taking as many herbs/meds as possible, drinking like a camel, sleeping all the time(ha! ha! ha!)...you name a tip/trick to produce milk and I've probably tried it! My max production is 25 ounces a day, though, and I was panicked it wouldn't be enough. I was sure gonna keep giving it my best though!
The best news about taking him off the fortifier(aka formula) was that he stopped spitting up! Before the surgery he was spitting up 10+ times, so we were really worried about how we'd adjust to life without all the spit-up---KIDDING! It was awesome! Kaleb was able to sleep in a BED for the first time, and he started learning how to roll since he finally had the opportunity to be flat. We were having so much fun with all of the new things we could do with him and how great he was feeling, and we were still in the hospital.
When his feedings were under control, we started weaning him from the oxygen flow. He had been on room air for quite some time, which is 21% oxygen, but he really needed the flow to help keep his lungs open. To achieve this, he had really big(for his little nostrils) nasal cannula pushing 4 liters of flow per minute. It sounded a bit like an airplane ready for take-off, so you can just imagine what it must have felt like. It took some time, but he did really well with the wean. Dr. Mahoney sent me home TWICE this time, and I have to admit it was really good for me. She was right about getting a better night's sleep outside the hospital-just don't tell her I said it! Kaleb was really close to being able to go home and it was Mother's Day weekend. I was just so happy he was doing well, and when we woke up Sunday morning, it felt every bit as special as if we were at home. As we were waking up, Karl asked me if I wanted to know what my present was...a confusing question since he could obviously just hand it to me. ;) I cautiously said yes, and he told me that we were going home that day!!! What an amazing gift, and a surprise at that. Way to go Kaleb, daddy, and Drs and nurses! The second part of my gift was an amazing finger/toe painting created by my fabulously talented son and loving husband. It's an amazing collection of colorful smears by his precious hands, and hundreds of tiny toe prints...priceless to be sure. And the best part? Our fabulous nurse, Sarah, videotaped the creation of my gift, and I love every second of it! Oh boy, for Father's Day I'm gonna have to bring my A game. ;)
Well, that was a little more than 3 weeks ago, and we're loving being at home. There's so much to tell about what we've been doing since we got home, but that will have to wait for my next entry. Kaleb is taking a nap, and mommy needs to pump and consider a shower. Enjoy the pictures below!
One day, one hour, one minute at a time,
Jenifer