Thank Goodness for Infant CPR Training!

Well, Kyle decided to celebrate his eight month birthday by giving us the scare of our life!

Today, about an hour after he was done with his feeding, Kyle coughed and spit up. It came bubbling out of his nose. I quickly grabbed him, and Karl grabbed the electronic suction machine - we cleared his nose and throat – and I removed his NG tube, but he still couldn't breath and he was turning blue. So, I flipped him upside down (tummy-side down) and did 3 rounds of 5 thrusts on his back, clearing his mouth and nose with the suction machine each time... And finally he took a breath! It seemed like forever!!!

Karl had called 911 right at the beginning of me doing the thrusts, and within a couple minutes of me finishing – five paramedics where standing in my front room. Kyle was still in distress however, and 2 litres of oxygen wasn't enough (the most we could do here). He was only satting 72% at that point - so they quickly set him up on a higher flow, blow-by mask. And we headed out the door to the Pediatric ER at Edwards Hospital in Naperville. By the time we got settled in the ambulance Kyle was back to normal. He had a great ride; laughing, smiling and talking to the paramedic the entire trip (he was proudly practicing his new "ELL" sound – sticking his tongue out as to give instructions to the paramedic who was mocking him).

We were in and out of the ER in 1.5 hours, but on the way home, they called us back to do a blood culture (per our Pediatrician), just in case. During our initial visit a chest x-ray was done, and they did find a little area in his upper left lung that was cloudier than a month ago when we where there. Most likely, one of the bugs he had in the NICU (found during a trach aspirate) finally decided to infiltrate. It's obviously slow moving, so a simple round of Amoxicillin was prescribed to treat it. They also said that his O2 should go back to normal after that (it's been a little high for the past month).

What a day!!!

Movin' on Up!

Well, it's almost time to say goodbye to our infant car seat. Turns out that our little guy is getting a little too "wide" for it. Sure, he has plenty of room to go in the length, but he's so crammed in - it makes me uncomfortable to look at him.

So, today we purchased the new Evenflo Triumph DLX. It's an upgraded version of their Triumph 5 model, which came with excellent reviews. Plus, it's not too big, such as the Britax models. The Triumph came with extra pads for comfort support and to help craddle Kyle in a bit better. He's still a little guy, so we wanted to be careful about that (safty you know).

Anyway, I think I'll keep both car seats in the car for a while. Just in case I go to the grocery store, until my Bjorn is returned.... Oh, and there's yet another story...

We no sooner got our Baby Bjorn Active carrier, and it was recalled due to a latch problem on the back harness. The parts are on order from Sweden, but until they arrive, and my carrier is shipped back - I'm out of luck. I'm so upset too, because I only got to use it three times, and I LOVED IT. Finally, I was able to move around freely with Kyle and his oxygen...

Oh well, it's always something isn't it.

Big, Bigger, BIGGEST...

It's been a while since I updated the blogger - but this is a one woman job, and the woman has had her hands full. LOL.

Kyle's home nurse came to visit on Tuesday, he weighed in at a Whopping 14lbs!!!! I can't believe it, my guy is actually in the 75% for weight!

As for the rest. His head circ was 39cm, or 5%, and length was 55cm (still just shy of 5%). We are still struggling with the length, but he's getting there. Having BPD, we find that little things such as hand size, foot size and length are all proving to be challenges to overcome. The drs say in time, that this will correct itself - so we try not to focus on that.

Big news on the developmental front. In addition to his ever increasing vocabulary (current favorite phrase: gunka-bunka-boo), Kyle is holding his head upright and controlling turn quite well. He's not nearly as coordinated during tummy time, but he tries... We're just happy that he likes tummy time :)

Also, Physical Therapy has been coming to the house 2x week. And with there training, Kyle can now almost completely roll over without assistance. In our last session, she raised his leg, just slightly crossing the other (without bringing the hip off of the ground), and Kyle flung himself over 3x's!!! I was so proud of him. He's also learning to bring toys to his mouth and overcome his left-sided delays (he favors everything to the right). He's now reaching for toys on his left, and turning his head more to the left... Which is a wonderful, since we found out that he has torticollis and the muscles in that side of his neck are quite stiff.

Well, that's the short and skinny. As I can, I will update more. Picture will follow soon, I'm sure. Karl needs to develop some film - or get batteries for the digital - SOON! :)

Ahhhh - Sweet Paci!

Oh, yes... This is the discussion of the PACIFIER... The sweetest gift ever given to a preemie!

As for Kyle, if you even attempt to take his pacifier from him during feeding or nap time, you're likely lose a hand!

Just to give a brief history of Kyle's intense love with the pacifiers, let's take a picture stroll through time.

Here I am with my first pacifier by Wee Thumbie.


See how big I've grown... Now I get to use the Preemie Wee- Soothie. I'm already planning my escape!


GIVE ME MY PACI, NOW!!!!!!


Hey, are you sure about this... It looks a little big.


Okay, whatever you say... Here I am with my Big Boy, Soothie Paci - it smells like vanilla!


Here I am with my Secret Agent Paci - 007 Eat your heart out!


And here I am sound asleep with my Paci Roll :)

Life is always good with my paci by my side!

Gaining Too Much Weight!

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

It's PLAYTIME!!!! Physical Therapy

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)

Home At Last!

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.

The BIG move - and 2 more months in the NICU

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!

Kyle, the first 4.5 months

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.

The Birth Story

Picking up where I left off... I had just discovered that I was dilated 1-2cm and fully effaced. There was no chance of truly stopping these babies from coming.

Today was Christmas - but it wouldn't be the happy day that we planned. I was immediately put on a Magnesium Sulfate to help control the contractions and pending labor. I like to refer to that medicine as water from the River Hell, delivered in a drip bag by the Devil himself. It was just awful, and it wasn't helping at all. So, they added Indomethacin. In time, this would be the drug that helped to slow the contractions. In addition to the Mag and Indocin, I was given my first round of steroids to help boost the boys lungs.

By 6:00PM Christmas evening, the contractions had slowed enough that I was finally able to drift off to sleep. At 10PM, I woke again in horrible pain. The nurse called for the doctor, who quickly checked me... I was now dilated 3-4 cm, and they called for another U/S.

During that ultrasound, I remember the drs arguing over which baby was A and which was B. Apparently, they were flipping places - which was odd because Konner always stayed on top, Kyle on the bottom. When the gave me the weights, I confirmed that Konner was now on the bottom. I was in shock, but what happened next, sealed his fate... Konner fell single footling breech. His foot was now in the birth canal, but his membranes were still intact.

I was immediately rushed to the operating room - the time was midnight - December 26th. I remember thinking for a brief moment how glad I was that my sons wouldn't die on Christmas... How selfish of me.

They kept me in a trendelenburg swing while in the OR, hoping to delay their arrival, and buy some time for better staff to arrive. By 3AM I had dialated to 7cm. Everyone kept telling me to take the pain medicine, so that I wouldn't hurt anymore... But I knew the truth, had I have taken it, and pushed the boys out - there was no chance for their survival... As it was, a vaginal delivery would very likely be their end.

The plan was made on a prayer... When I had to push, I would deliver Konner, who by this time had fallen double footling breech and was kicking a nerve in the birth canal - frantically, trying to free himself. After Konner I was to stop pushing, they would see if I could stop contracting, and try to keep Kyle in. If he cooperated, he would have a chance at life.

I felt the uncontrollable urge to push, and was in horrid pain. At 3:46Am Konner William Knoernschild was born. He was 12 inches long, and weighed 1lb 5oz. He survived 13 minutes. As I lay there praying to God, I realized no one was talking - I started begging for someone to tell me what was going on. My husband, who had left to stand by the Neonatologist and see the baby, returned to my side - tears in his eyes. It was at that moment that I realized that Konner was gone...

It was also the moment I realized Kyle was still inside of me, and I wasn't contracting. I quickly asked the Doctor what was going on - he told me that I was closing up... but there was a problem. The problem was something that had never been noticed on the many U/S along the way... The problem was that the placentas had fused. I managed to close down to 3cm. We knew that this would give Kyle a very limited time to develop, to have a chance at survival.

It was about this time that I asked for Konner. I remember someone telling me that I shouldn't - but I wanted to hold my son. He was so beautiful, and so perfect. I wept holding his tiny body in my arms... I would later get to hold him again in our hospital room.

I had a hard time after Konner's birth. I ended up needing a transfusion due to all of the blood loss. And two days later, Kyle's membranes ruptured. Fortunately, we had the second shot by this time... But he still wasn't ready to come. On the 4th day after Konner's birth, we met again with the Perinatologist. She told us that if he was born today, he had a 5-20% chance of survival (after his birth the adjusted that to a less than 5% chance).

That evening, Kyle started to show signs of distress - and I started contracting again. I was rushed into the operating room, and against the recommendation of several doctors - I had a c-section (vertical).

Kyle was born that evening at 6:23PM, it was December 30th. He weighed 1lb 1oz, and measured 11.5 inches. To everyone's surprise, his apgars were 4, 7, & 8. It was obvious to us that the boys were fraternal. Konner looked more like Daddy, Kyle was all nearly all Mommy.




As soon as Kyle was born, they ran a culture on me - when it was discovered that I had staph infection, they only gave Kyle 3 days to live. He proved them wrong.

Sure he had his problems, but he survived... And loves every minute of living!

Conception & Pregnancy

It was the perfect fairy tale... Boy meets girl, boy marries girl, girl gets pregnant. We found out in August that I was 4 weeks pregnant, how thrilled we were. Our perfect life was continuing it's perfect path.



A week and a half later, I started spotting - in a panic, my husband and I rushed to the Emergency room. After 6 hours of miscellaneous tests and waiting - the dr finally ordered an ultrasound. It was 1:00 AM when we first saw that flash of light - or lights I should say across the screen. It was twins! We were informed that everything looked good, and I should go home, rest and follow up with my OB in the morning. There was no shock or disbelief that some parents experience... To us, it was just another way of showing how perfect our life was to us. Not one, but two.

We found out the following day that I was suffering from a Subchorionic Hemorrhage. I was ordered to two weeks of full bedrest, and pelvic rest until week 13. Eventually the spotting stopped, and in follow up ultrasounds, we found that the hemorrhage had disapated.

(10w 5d)

I noticed that I my stomach was growing quite large very early in the pregnancy... This was a good thing, right? With no previous pregnancy to compare this to, I had no idea the danger that was looming. By eating healthy, and following a proper diet for twins - my growing waistline, in addition to their early and increased activity was leading to a dangerous combination for my body... It led to Pre-term labor, as defined by an Irritable Uterus.

(Konner) (Kyle)

At 17.7 weeks, my braxton hicks led me to the emergency room - contracting 3-5 minutes apart. I was immediatly given a shot of Terbutaline to help control my contractions, which it did. I was sent home on full bedrest with a prescription of "terb" 2.5mg every 4-6 hours. I was also put on home uterine monitoring. This was just following Thanksgiving, 2003.

With Terbutaline in tow, my contractions minimized to 0-3 during sessions. I always found that a little extra water would bring them back into control. Full bedrest was eventually lifted to modified bedrest. I was so glad to have a couple hours of movement time! You joints get so stiff just laying all of the time. I was allowed to take short trips to the store with my husband, if the store had "Granny Carts" for me to ride in :)

We found out the first week of December that we were having boys... I can't tell you how excited we were! My mother threw a nice baby shower for me in Springfield, about 3 hours from were we lived. I had the okay to take the short drive - I was 20 weeks at the time, and did just great. I rested the entire trip in a reclined position. It was just so wonderful to get to see my family again. I was so tired after the shower, but I was doing just fine. During both monitor sessions, I only had 1 contraction - right in line with my normal pattern.

At our 22 week ultrasound - one week before Christmas, the perinatologist said that everything looked great and released care back to my OB. The boys were at or above the growth curve, and I was doing much better by then - with no increase in contractions. I was just getting big - REALLY big! I measured 36cm upright, and 39cm laying down at just 22 weeks!!! It was too tiring for me to climb the stairs anymore, so Karl was setting up the bedroom with a minifridge, microwave and TV just before christmas.

(22w 6d)

At 23 weeks I went in for my weekly OB visit, it was December 23rd. I had my complete exam, still everything looked great - I was closed and my cervix measured 4.5cm, and my uterus measured 39cm upright. Although I was having more braxton hicks, my contractions had stayed to a minimum. The OB gave me the okay to make a return trip to Springfield the following day.

The morning of our trip (December 24th), I was in the nursery where I had my monitor equipment set up. Preparing for a monitoring session, I started feeling faint and dizzy. I called for my husband as I laid on the floor. I assumed since I hadn't eaten yet that I was just having a problem with my blood sugar. And sure enough, he got me a huge glass of water and some crackers, and I was fine in about 20 minutes. I took it easy for the rest of the day, and we didn't leave for my parents until 3PM.

After arriving at our destination, I quickly set up for my monitoring session. I was a little uncomfortable during the drive, but I assumed it was because of being cramped - well, I marked 4 contractions that hour. I quickly drank a large glass of water and laid down until dinner. I went to bed shortly after I ate.

At 3:00 AM I woke up in horrible pain, and quickly put on my monitor. I phoned the nurse as soon as I was done, and was told that I had 6 contractions - only it felt like more to me. She suggested that I monitor again and have some water. 20 minutes into the next session, I had 4 very hard contractions... I quickly took the belt off, woke my husband, and we headed to the hospital, 15 minutes away.

When I arrived, it was too late to stop anything... I was dialated 1-2cm and fully effaced. I was only 23 weeks and 2 days pregnant, and terrified! I was going to have these babies well before they were due.

Welcome to Micro-Preemie Steps

I decided to start this blogger to highlight the life of my son, Kyle, and provide resources and support to parents of micro-preemies.

A photographic history of Kyle can be found at: www.knoernschild.org/kyle