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Well, today we had our first official in-home physical therapy session. Kyle was such a trooper, he held on as long as he could. However after he decided he had enough – he sure let us all know.

Physical therapy will continue twice per week for the next two months… So, Kyle will get lots of playtime with the fun rolly balls and sound and light toys that they bring along.

Here is a picture of Kyle practicing some of the “tummy time” exercises.

And one more,

I should also note, in his initial evaluation his cognitive skills were at or above his corrected age… We’re just practicing upper body “Strength Training”. (IE. Push-ups)

The first week was pretty hectic, and I certainly had a hefty bought with depression. After 6.5 months of living in one room, sharing a kitchen with hundreds of different families over the months, loosing a son – and going through all the NICU life… Well, it all hit me at once. I found myself crying in the middle of the night while watching Kyle sleep… Crying while I washed the 60 some syringes and bottles required every day to feed and medicate him… I found that after 7 long months, my milk supply was finally coming to an end. Then to top it off, Kyle got sick.

Yes, home one week and he had his first cold! His oxygen went up to 1.5 litres, but things got better within another week – for all of us. Finally, we got into a routine, finally the constant crying and feeling of complete failure left me… I still cry now and then, but hey – who wouldn’t after all we’ve been through.

As my routine settled in, we started venturing beyond the home, while we still could (before the sick season starts). Besides our weekly doctor appointments, I try to make a “Girl Trip” once per week… I’ll meet a friend for lunch, do a little shopping – just getting out of the house. Of course the little man is in tow, but he loves it… He looks all over the place, until he quietly falls asleep. He’s such a good baby

Oh, and speaking of good baby… WOW, the doctors weren’t kidding when they said the babies grow much better at home! When he left the hospital, Kyle weighed 9lb 2oz. Just one month later… He’s weighing in at a whopping 12lb 15oz! That’s just incredible.

However, they did have to reduce his calories a couple of times. He was on a 30 calorie breastmilk+neosure+corn oil blend. Then we dropped to 27 calorie bm+neosure. Now, he’s on 24 calorie breastmilk + neosure powder. In a few weeks, I will run out of my frozen breastmilk – so we’ll go to straight formula after that. We’ll see if it still needs to be concentrated at that time.

Well, it was moving day… Karl and I were walking on air. Our little boy was being transferred to a level II NICU, to prepare for our transition home in a couple weeks. We knew Kyle would be coming home on an NG tube and oxygen, but we didn’t care… Our little boy would be home.

Or would he be coming home soon? When he arrived at the new hospital, he was clearly in distress. His oxygen requirement had skyrocketed to 80%… In the coming days it became evident that the Neonatal staff was completely incompetent. Not only did I question how they ever got their Level II status, the nursing staff didn’t even respond to his alarms. At one point, he was on 100% oxygen and satting 70%… I had to literally yell at the nurse to call the dr and respiratory – this was after her not responding to my numerous pleas and begging.

Needless to say, we contacted Loyola University, and had him whisked out of there first thing Monday morning.

Arriving there was a little frightening – we knew he would have the best care here, but we weren’t prepared for “Community living”… Or the BORG SHIP, as I liked to call it.

Up until then, we had been in pods with no more than 6-8 babies when the pod was full.

It wasn’t long until the Loyola Staff jumped on things. In some cases, they over did it – but in all, we were pleased. Kyle ended up back on the vent the day after his arrival. They felt that his heart condition was Cor Pulmonale, based on a preliminary diagnosis by the technician. With that diagnosis, they couldn’t wait for the Cardiologists report – so he was intubated. In the first week it helped, but then things started to worsen, and when they discovered that it was Mild Pulmonary Hypertension (right-sided), and not Cor Pumonale – it was too late… And Kyle wasn’t self-weening as they thought he would.

He spent another 5 weeks on the vent before, in a last ditch effort prior to putting a trach in, they extubated him… To everyone’s amazement, he did better off the vent then on. His CO2 levels fell from the 80-90’s to 50-60’s. In addition, his oxygen requirement dramatically improved over the next few week… He was now ready to come home!

As expected, he was coming home on oxygen and an NG tube… But again, we were just thrilled to be coming home. July 8, 2004 – after 192 days, we were going home!

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.