Emotions on High

I've been debating on whether I would do some "real time" blogging vs. giving you all the story in increments. I think I've decided to bounce back and forth, mostly for my own sake. There are still so many things going on with Baby P, that blogging in real time might be worthwhile. So for those that don't know our whole story, bear with me, we'll get back to that. Baby P, being born at 25 weeks, ended up with one set of extra large bilateral inguinal hernias. From what I understand, this is pretty common in micropreemies because the muscle wall is so weak, the intestines just slip right thru and hernias develop. But in our case, this kid's hernias were HUGE. Now, throughout our 178 day NICU stay, it was always a fear that one day, the hernias would not be "reducable" and we'd have to have surgery to repair them way before we felt ready. The other good thing was that, despite the size of those bad boys, Baby P seemed very unaffected by them. Each day the neonatologist would come by, reduce his hernias, and Baby P wouldn't even bat an eye. I feel certain it hurt them more than it hurt him....but anyway, as we neared the end of our NICU stay it was decided that my husband would learn to reduce them (they taught me, too, but I hated doing it so I deferred it to the man that actually has a scrotum), and if they became hardened, if they became discolored, or if Baby P suddenly seemed uncomfortable, we were to have him checked out immediately. The other thing we were told to watch for was constipation. With a huge amount of intestines in his scrotum, a big poop ball could really be a game changer! In March of this year we saw a pediatric surgeon with 27 years of experience, all of it at Riley Children's Hospital. Upon examining Baby P's hernias he told us "these might be the biggest hernia's I've ever seen in my career." This was the 3rd time we had been told this, but despite their size, Baby P could have cared less about them. After a lengthy discussion with the surgeon (who looked much like Santa), we decided we'd see our pulmonary specialist and come up with a plan for Baby P's lung status and then determine a surgery date. We decided end of summer would probably work best so that: 1. Baby P could keep growing. 2. His lungs could keep growing. 3. We could possibly wean his oxygen needs down during that time. 4. I would have some FMLA time again (let's be real, 18 weeks off work depletes a girl's time). and 5. We would be out of viral season, putting him at less risk. Because here's the risk: Baby P suffers from BPD, which is a chronic lung disease of a premature infant. Thankfully, most babies outgrow BPD over time (growth and nutrition are what's most important for these babies), but in our case, he was slow to wean off NIPPV/CPAP while in the NICU and then required 1/4 a liter of oxygen at home upon discharge. With his BPD, placing him under general anesthesia and on a ventilator posed a significant risk of him not being able to extubate from the ventilator post operative. With us already having lost his brother, we were not willing to risk a surgery without significant planning in order to allow him the best possibility of coming off the vent post op. In May we saw our pediatric pulmonologist who gave us the go ahead for surgery. Even with her blessing, the thought of putting our beautiful baby boy under anesthesia was nauseating. Not to mention, a return trip to Riley was causing me significant anxiety, with all the memories of his brother and his NICU stay. Despite our fears, we settled on a August surgery date, knowing Baby P was doing a rockstar job of weaning off his oxygen during the day. During our visit with the pulmonologist, it was also decided we'd undergo an overnight sleep study to liberate him from oxygen at night. My husband and I decided we'd like to do the overnight sleep study first, see how Baby P was doing with his oxygen status, and then go ahead with surgery. But this week, Baby P and his hernia's had a different idea. In true Baby P fashion, he decided on his own terms it was time for surgery, whether we were ready or not! On Monday, his hernia's got hard and couldn't be reduced, but Baby P wasn't in pain and he was still eating, playing and smiling, so we decided to try and get him to poop, and watch him closely. On Tuesday, there was no change, and no poop. After calling the surgeon at Riley, we decided to take him to our local ER and have him checked out. A KUB and ultrasound showed nothing significant and after a discussion with the surgeon by the ED doc, it was decided to try some poop medicine and update the surgeon in the morning if things hadn't changed. We headed home, and Baby P took a good nap. When he woke up, his scrotum was nearly twice the size it had been before nap, he was crying uncontrollably, and he screamed when we touched him. I can't begin to tell you the fear this struck in me. Here we are, 3 hours from a peds surgeon, from a peds anesthesiologist, from a peds hospital, and our baby boy is in trouble (or at least in my eyes). I called the on call surgeon at Riley and told her what was going on. She determined that we needed to head directly to the Riley ER, plan on staying and if the hernia's could not be reduced by her, he would go to surgery that night. I was trying not to panic, but I wasn't prepared emotionally for returning to Riley just yet. I wasn't prepared to put baby boy under general anesthesia without an overnight sleep study. I just wasn't prepared, and I was freaking out. We packed our bags, loaded up the car, and headed North. I'm so grateful it was night time because Baby P fell right asleep in the car, hardly even noticing he couldn't eat. Once we got into the ER, the surgeon on call came to see us and with years and years of experience, she could not reduce his hernias....so to surgery Baby P would go. To add to our anxiety, a "critical kid" was ahead of us in the OR, so we had to wait several hours before going to surgery. At about 0400, little guy went to surgery. I wanted to vomit. Cry. Pace. All I could think about was "what if he can't come off the vent? What if we have to stay here longer than a day? What if he has a set back?" After 2.5 hours in surgery, Dr. B. updated us. All was well....Baby P was already extubated in the OR suite, he did great during surgery, and his surgery was "technically quite difficult" because of the size of his hernias. She had to rebuild his muscle walls due to the weakness of them and just how long they had been that size. He will probably need a second hernia repair somewhere in life, but we can handle that as it comes. About 20 mins later we were called to the recovery room, where our sweet fighter was crying, but I swear, I saw such relief on his face that mom and dad were there. Within 20 mins of hitting the RR, he took some pedialyte, then some sugar water, and after transferring to a room, he ate a bottle. When I saw him in recovery, my emotions took over. The relief I felt, seeing him breathing, crying, warm and pink...it was just too much. I kept from being a blubbering mess, but I had to reign in the tears. The emotions I felt, the fear I felt, it is indescribable. But the sweet relief of having it all over, seeing his sweet face, and knowing we've overcome yet another obstacle, was amazing. Within 2 hours of surgery, our sweet boy was back to not needing any oxygen, and eating. On Thursday we were released home, with no restrictions. While we always thought Baby P wasn't affected by his hernia's, I do think he seems much more comfortable! On Friday, as if surgery itself wasn't enough, we also had our overnight sleep study. Bear in mind, we did everything in reverse order, but we got it done as well. We still don't have results, but we think it went well. We are looking forward to having our oxygen needs behind us, allowing us some freedom and movement without the worry of a pulse ox and oxygen tank. Losing a twin is a balancing act. Just when you think you've got a handle on things, the scale tips in another direction and emotions run on high. This week was exhausting. But I think I handled it rather well (as did my husband). Despite some great care at Riley, I wouldn't be disappointed if I never stepped foot in that place again. It's not the direction I want to tip my emotional scale, especially as Baby P continues to rise from the ashes of his prematurity.