The first four and a half months went better than expected. It was hard, there were struggles – and we were still 3 hours from home… Now taking up residence at the local Ronald McDonald House. Karl was able to work out and arrangement to work from Springfield most of the time – so it was nice not having him leave me.
In the early days of Kyle’s life, we were still dealing with the loss of Konner. The funeral home was horrible, and charged us for a service that is free ($500). Not to mention that they kept calling me in the hospital before Kyle was even born to make arrangements!
Kyle seemed to be doing much better than anyone expected. He didn’t end up with staph infection, as they thought he would. But they were treating him just in case. Initially, his vent settings were fairly low in terms of oxygen requirements (28%), and room is is 21% – so that’s pretty good.
In addition to the antibiotics, he was given surfactant to help with his lungs, and put under the billi lights to help with Jaundice. In addition, his little legs were horribly bruised from being pinned after his water had ruptured – the billi lights helped to clear that up.
It’s the antibiotics that changed everything in his little life… On day 7, he preforated his bowel. At first they thought he had Necrotizing Enterocolitis (NEC), however they quickly found that this was not the case. In a rare event, it turns out that they grew yeast out of Kyle’s abdomen… Essentially, he got a yeast infection from the antibiotics – which caused the preforation. A small drain was inserted partially into his abdomen to drain waste to a bag. During this time, his stomach appeared quite purple/green looking (See picture), and was swollen. They also inserted an Oral Gastric (OG) Tube into his stomach to draw out excess air that might further compomise his bowels.
Kyle healed quickly, but the preforation created a blockage in the bowel… This would keep him from eating and on IV nutrition for the next two months while we struggled to get him to 1 Kilo – the magic number. Who ever thought that getting to 2lb 3oz would be so difficult!
After 4 weeks on the vent, it was evident that Kyle was not going to self-ween. His oxygen requirements were shooting up, and nothing was working. So, time to bring in the big guns… Steroids. These miricle drugs have their own set of evils… Kyle was placed on a 3 week round of Decadron. After 7 short days, he was extubated and put on CPAP- however, he did develop a stomach bleed which was treated with Mylanta.
Kyle was 7 weeks old the first time I got to hold him. I can’t tell you what that meant to me. And for Kyle, he finally began to gain some serious weight.
Kyle didn’t end up needing surgery for his preforation. The blockage miraculously cleared up the night before his lower GI, four days before his scheduled surgery. I never thought I’d be so proud of a poopy diaper!
We didn’t make it out surgery free however. Kyle first had surgery for Retinopathy of Prematurity (ROP). This went very well, and he was extubated the following morning. Four days later he had surgery for right-sided hernia repair. Although the procedure went very well, Kyle did not come off the vent right away. After a few days, they extubated, but the following day he was put back on for 5 more days, before coming. This was very hard on us – but the underlying issues would later unfold. This was too much too soon for his little body.
After a couple of weeks, things seemed to be going okay – with exception of a noticable increase in his oxygen requirement (now up to 50%). However, he was tolerating his feedings, taking a bottle – although he wasn’t strong enough to finish it… But everything looked good. A heart ultrasound did show a little enlargement and increased pressure on the right side, but we were advised to dismiss it.
So, with things going so well, the Neonatologist and NPP suggested we transfer Kyle closer to home, to prepare for our big day. At this point, Kyle was 20 weeks old, or 4 weeks corrected age. All of the family came in for their final goodbyes, and we managed to capture a great picture with my Mom and Grandmother.