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I never once thought Kyle’s weight GAIN would be a problem, but it is now…

As I mentioned the other day, he weighed 9lb 2oz when he came home. Today Kyle weighed in at a whopping 13lb 5oz!!! HOLY COW!

His waist has grown 3cm over last week (of course he had just eaten), but his length is not keeping up with the pace.

A couple of weeks ago, Kyle caught a cold and his oxygen requirement shot up. The doctor ordered a small burst of predinosalone (steroids) for 5 days straight (usually he is takes it every other day). Ever since then he’s been retaining extra fluid and packing it on… Which of course will only make it more difficult for him to breath.

So, we have now increased our Lasix to M-W-F vs. M-Th only. In addition, we’re going from .5ml to .7ml. We are also increasing his Aldactazide (another diuretic), which he takes twice daily… Now that is set at 1ml vs. .8ml.

One more note, some of that gain is normal gain, and he’s been acting like he’s starving – so we’re going from 105cc to 115 (almost 4oz) 7x/day.

Here are his total stats from his weekly home nurse visit:
Weight: 6.34kilo/13lb 5oz
Length: 53cm (55cm at the doctors office on Friday)
Head Circ: 38.5cm
BELLY: 44cm

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!