More Firsts: THE HAIRCUT

It’s been obvious for some time that little Kyle, is not so little anymore. He’s growing into a little Toddler, my little boy (cry). After our most recent Well Baby visit, Kyle is now 29.5 inches long and just over 21lbs. In addition, he’s learning to move all over. Still just rolling, but with a little assistance, he’ll sustain his weight on his hands and knees for a brief moment… It’s a start.

We’ve been attending Gymboree class for the past month, and he loves it. The kids, the activities – it’s all so exciting for him. We’re in the 6-12mo Gymcrawler play group. Even though Kyle isn’t crawling, standing or walking at this time – he’s a champion sitter, and doesn’t mind having mom tote him around to the slide and various obsticles courses set up for the day.

Grandma & Papa Knoernschild were in town the past couple of days, and they had the pleasure of attending Kyle’s Gymbo class this week. They got to watch him kneeling on the foam steps, sitting on the parachute while we spun it around, popping bubbles, and clapping his hands every time the instructor broke into song. Grandma even helped catch Kyle as he was lauched several times down the slide with a big grin on his face.

Daddy met us after Gymboree Class for Lunch at one of our favorite Lunch Eateries, the Corner Bakery. It was getting gloomy outside, and our plans of an afternoon at the Morton Arboretum were still up in the air. As we were walking out of the cafe, trying to decide what to do – I spotted a Kid Snips Hair Salon next door. I had been complaining about Kyle’s hair for the past couple of weeks – and even broke out daddy’s hair gel to keep it in place. So, in we went…

KidSnips is an excellent place to take your child, they have chairs that look like jeeps, cars & trucks – offer music or video’s for entertainment, and the workers are extremely gentle with the children. Kyle enjoyed watching Baby Dolittle for his first cut. Moving only when the stylist got in the way of the TV.

Here are some pictures taken during this big first:
Going for a ride in the Big Red Jeep

The first snip…

Close-up starting the sides…

Almost done…

The final shot will be loaded later – daddy forgot to take it with our camera, and I’ve yet to scan the copy the Salon gave us… And yes, not only did they give us an evelope with hair, they gave us a digital printout, and a nice certificate for his First Haricut (cry, cry, cry).

After we finished, the weather had cleared just enough to go for a drive and short stroll around the arboretum. Since the sun had peeked out – it was time to pull out the shades!

A moment without the cannula: The Weaning Process

The one question we’re asked more than anything is, “When will Kyle be off the oxygen?”. Our response, we just don’t know… The process of weaning from oxygen is more complicated that one might imagine. I’ll try to explain…

When Kyle was born, he was placed on a ventilator for an extended period of time due to Respiratory Distress Syndrome. The Ventilator destroys the fragile lung tissue of the infant over time, causing Chronic Lung Disease/(Bronchopulmonary Dysplasia). From this link, you can see the early developing stages of CLD/BPD in a neonate born at 25 weeks. The “haze” is the developing disease. As the tissue is destroyed, pockets and cysts form in the lungs. In it’s most severe form, the lungs appear much like severe pneumonia (completely white), with cysts still partially visible. As the new tissue develops, cysting may still be present, but the new tissue will build around it – allowing for greater lung capacity. Children that suffer from moderate BPD will typically overcome their breathing challenges by the age of 2-3. Children with advanced/severe BPD may never fully recover, or have a prolonged recovery time. This however, does not mean that the child can’t heal faster – it just means that it’s a longer “unknown” process.

Kyle’s official diagnosis at discharge from the first NICU was Severe BPD/Chronic Lung Disease. In earlier x-rays Kyle’s lungs, in their most severe state, appeared equal to that of an elderly man diagnosed with severe Emphysema. In this illustration, you can see how the damaged tissue forms the cysts. Fortunately, neonates and young infants are constantly developing – it’s this Development Stage that is so vital. They have the ability to overcome more than an adult in degenerative state.

Upon discharge from Loyola, Kyle’s official diagnosis was moderate BPD/Chronic Lung Disease. Initially, we had hoped that he would be off the oxygen by the holiday season. However, with every illness, it was yet another set back. How these illnesses affect each child can vary – but one thing is consistent with Chronic Lung patients… It’s swift and damaging. When we were discharged, Kyle was on 1/2 litre of oxygen – within two weeks, he caught his first “Real World Cold”… We sat a 2 litres of oxygen for two months after that. Then slowly, things started changing for us. By Christmas, we were back to “baseline” (1/2 litre).

As we quickly approach Kyle’s 1 yr Due Date anniversary, we will once again watch another hopeful milestone pass… We had held within our hearts a glimmer of hope that by his 1 year corrected age date – he would indeed be fully off oxygen. With only 10 days to go, it’s become evident that we will not make that goal. However, it will not pass us without progress.

In the past week, as he’s been recovering from Pneumonia, Kyle has had a little bit of light shine down on him… His oxygen levels are maintaining between 1/8-1/32 litre of oxygen. During naptime and for a couple hours here and there, we’ve even managed to be oxygen free. It was during one of those special moments that we were able to capture this picture.

I don’t think I can even begin to form the words that will express how very special this moment was, and what it truly means to us. We know that we haven’t reached the end of this road quite yet – but I’m starting to see the signs for the turn coming ahead… When we get there, it will take us to a much better place than we’ve been in for the past 16 months. But regardless, the place we are in now – isn’t so bad… Because we have our beautiful son here with us.

March of Dimes WalkAmerica

Well… Now is the time! We are going to be participating in this year’s March Of Dimes WalkAmerica on April 24th. We will be walking as a family in memory of Konner, and in celebration of Kyle.

If you are interested in donating, please click on the link below – every dollar counts, not just toward our goal – but toward the finding a cure for prematurity!

Now for an update on Kyle…
Here is a picture from Easter:

And here’s the latest on his health & development
It’s been a rough week! Saturday late night Kyle began having trouble breathing. He went to bed on 1/2 litre of oxygen (not entirely uncommon), but by 5AM, he was at 1 litre, and 2 litres by 6:30. I grabbed the stethoscope, and there it was – that dreaded raspy sound I was always told to listen for – my heart sank as we quickly gathered him and his equipment to rush to the ER. We arrived around 7AM, and wasting no time, he was taken back, and an x-ray was ordered. It was indeed one of my nightmares, he was diagnosed with Pneumonia (VERY moderate +). His upper right lung was completely white. There was some hazing on the left side as well – with no clear definition of the heart (meaning that it was moving into the other lung).

We were promptly admitted, and IV antibiotics were started. Since he didn’t have a temperature, we knew that we caught it early enough. And since he had just been to the Dr last Tuesday – we had a window of time that this could have occurred. We were told that it was either Viral or due to aspiration. If it was Viral, his temperature would certainly spike within the day/next day.

Since he’s been teething (3 teeth now), he started to get what our Pediatrician refers to a “teething cold”. It consists of a lot of upper nasal congestion and secretions – but no chest congestion (just something we watch and are mindful of). He never ran a fever, but was having a hard time with his reflux due to the excess snot, etc building up and causing him to cough/gag. We estimate that if he aspirated, it had to be around Friday or Saturday morning. He was on 1/8 litre of oxygen on Thursday & Friday, and back to his baseline of 1/4 on Saturday during the day/early evening. We had no indication that there was a problem until early Sunday morning… It was just that quick!!!

So, as I’m leading you along this path, I’ll let you know – he did in fact aspirate (inhaled fluid during a reflux or spit-up moment). Not that you would EVER want your child to go through this – but if they were to get pneumonia from it… This is certainly better than the Viral version, which would have had a major impact on Kyle.

Well, back to the hospital… By noon, Kyle was up to 3litres of oxygen, and by the end of the night 3.5litres. Karl and I were very worried, but Kyle was still very playful, and his usual happy self (which I found odd for a “sick” baby). The nursing staff ordered up the vapotherm (canulized cpap) in the even that we needed it – but fortunately, we didn’t! By Monday night, we were back to 2 litres, and Tuesday morning 1 litre… By noon we were at 1/4 litre (his baseline). It appears that the medicine was doing the trick. We were released from the hospital at 9PM last night (Tuesday) – which is record breaking time for a child with Chronic Lung Disease/BPD.

I should add that in addition to the antibiotic, he was given steroids (prednisolone) and Albuterol Nebs. He will remain on those to finish the course: 10 day course for the Antibiotics, 5 day course for the steroids, and 7 day weaned course for the albuterol.

Well, in all – we can’t be thankful enough to the wonderful medical staff that cared for him, and was so quick to respond!!! If you live in the Naperville, IL area, I strongly recommend that you take advantage of Edwards Hospital and their Pediatric ER. The team is top notch, and they waste no time at all calling in the right support.

On an upnote…
Kyle is rolling over now like a champ! I can’t tell you what a major milestone this is for us. He’s been sitting for months, but even in that he’s getting stronger… But the rolling – well, I’m just so proud of him that it’s too hard to describe! In the past two months he has made major developmental improvements – and he’s so determined!!! Tonight I went to put him on his belly, and he even pulled his knees underneath in the crawling position. And for a moment, he put his weight on his hands (he hates doing that).

One day at a time – one milestone at a time… I’m just so proud of my little guy!

And here’s one more picture of him. This time reading his book from Mamaw & Papa K…