Micro Preemie Steps

Fun Photos

2007-07-22T12:07:00.000-05:00

I've decided that I just can't talk too much about Kyle's chest issue because it's entirely too depressing for me. To make it short, it's inoperable and we have to wait and see how it progresses until he turns 7. We are going to have a CT Scan done at the request of his Dr with Children's Hospital.

So, let's see some photos of how far Kyle has come.... First up, WALKING!!! It's been two months since he took his first step without the walker. It's still slow going, but he can usually take around 6-10steps now without having to "touchdown", and start again. He's also walking sideways and learning to maneuver uneven surfaces.

And here's a couple more just having fun being the big brother. I should note, he's GREAT with Ian and loves him very much.

Chest Wall Reconstruction for Pectus Carinatum

2007-05-28T23:21:00.000-05:00

About 1.5 years ago, as a result of ricketts (brittle bone disease), Kyle was diagnosed with Pectus Carinatum (pigeon breast). Although the surface appearance is more mild, the ribs are sinking far in to his lung cavity. The risk, depending on the severity (to be determined), is great since it inhibits lung capacity. Kyle still has BPD (chronic lung disease), a condition resulting from prematurity and using high pressure vents on immature lung tissue. Because of this, his lungs are still under-developed for his age. In time they will heal, but not for a few more years at least. The added condition can inhibit this process.

As time has gone on, the chest wall malformation seems to be worsening (not self-correcting). Last week Kyle was referred to the Chief Surgeon with Children's Hospital in Chicago, who also specializes in Cardiothoracic Surgery and Chest Wall reconstruction. Our appointment is toward the end of June. If you know of anyone that has been through this, please let us know . We'd like to know what questions to ask, and what to expect should surgery be required anytime in the near future.

Thank you,
katra

First Steps

2007-05-16T21:15:00.000-05:00

That's right... Kyle took his first steps today towards walking independently. He's been cruising for 1.5 years now, and using his walker consistently for 6mo. For the past 5-6 months or so, he's been practicing standing, and is still a little shaky - but standing. I guess he decided that he was ready to start trying to walk on his own, too. Fortunately for us, Karl was right here when it happened, so we both got to see it. Of course we cried, and cheered and gave him big kisses and high fives - I mean how could we not? It's one of the biggest accomplishments of his life. About an hour later, he worked up the courage to take another step. So we'll just start building on that, one step at a time.

This picture below taken a couple weeks ago. He's clapping because he's so proud of himself :) On the picture book below, you'll see a boy standing in the upper left corner. We've found a great collection of picture books with kids doing all sorts of activities, and his desire to imitate them, has helped us better teach Kyle how to do certain things. They also help in communicating, a trick we learned from his preschool. Where he can't say the word, he'll point to the object or picture to allow that to speak for him. However, his speech has come a long way. He knows and identifies his entire alphabet, counts to 20, counts down from 10, identifies multiple animals - the list goes on. School has made a major impact on his education. Being around other children his age, in a learning environment, is helping Kyle overcome so many obstacles. Did I mention that he even finger paints now? He was so threatened by anything that had an odor or made him think of food. Now he plays with real food, uses spoons to take food off of my plate and pretend eat or feed us directly. It's just incredible how well he's doing.

In other news... Kyle had his tonsils and adenoids removed, as well as having his 3rd set of ear tubes placed - YESTERDAY. We had to stay in the hospital last night for observation, but were released and home before noon. Yesterday was pretty rough, and he was on oxygen for about 12 hours. After that, the pain meds seemed to be working better. This morning he woke up at 5am, all smiles. The tonsils were causing an obstruction, and creating difficulty in swallowing and breathing. Because of the inability to swallow, he had turned in to a water faucet with all the drool. There's already been a big change in that area, with minimal drool today.

We're also fearing an upcoming drs appointment with Kyle. Over the years, due to nutrition shortfalls early on, Kyle has developed Pigeon Breast (pectus carinatum). With clothes on, it's not so obvious, but with his shirt off, you can see that his chest plate protrudes more outward, and unlike most PC cases, Kyle's ribs push deep in to his lung cavity - almost caving under. It's that particular problem that's creating a serious issue in Kyle's health as he grows. The problem has already been growing, but during his last growth spurt, Kyle's ribs did not extend downward like they should. Instead, they curled up further in to his lungs. As time continues on, this begins seriously limiting his lung capacity and growth. Since he already has BPD, he's at greater risk. His future will likely include a minimum of one major surgery, with additional surgeries not being ruled out. We meet with the Cardio Thoracic dr in June, and the Orthopedic surgeon next month.

Update on Ian...
The baby hasn't been doing so good. Serious tummy troubles - and I feel like I'm to blame. I had a botched root canal last friday (being finished this coming friday), and had to go on two meds that are not compatible with breastfeeding. I only had a few days of milk in the freezer, so I had to give him formula. We noticed a big change right away. Projectile to general spit up, extreme fussiness, decrease in bowel movements, and a rock hard tummy. Signs we're all too familiar with from what we went through with Kyle. I had to call the dr to see if I could discontinue the medicine. Since it was in my system for 48 hours, I could - but then I had to still wait 24 hours to breastfeed again. So this afternoon was the first time Ian has breastfed in nearly a week. He was so happy - but he's still having a hard time. Today, he's only had one nap, and just laid down for bed. I'm really hoping that the breastmilk will get his bowels moving again, and release some of the pressure and discomfort. Formula truly is horrible stuff.

On the upside... Ian has been playing under his playmat like a little pro. He whacks everything, grabs toys, and has begun bringing them to his mouth. It's so cute. He puts his little hand in the air, steadies it, then goes crazy smashing things as quickly as he can. He also loves talking to you - agoo, ahh, and then little laughs and smiles. He's also figured out how to click his tongue and has begun blowing bubbles. Ian also stares and smiles at Kyle, and of course Kyle just LOVES him! Here's a picture taken a week ago:

3 Years Ago Today

2006-12-30T11:36:00.000-06:00

At 6:23PM, I delivered Kyle via emergency c-section, after days of struggling to keep him in. I don't remember his birth (I was put to sleep), my recovery was a complete nightmare, and he spent 6.5 months in the NICU before ever coming home. But I'd do it all over again, just to see his smiling face every morning. I'm so thankful to have him, and despite how difficult this week is for us every year - I know that I always have something special to celebrate at the end of it. And that's that he survived all the odds, most likely with the strength of his little angel, Konner, that watches over him, and he's still with us today.

Please light a candle today to remember Konner, and say a prayer thanking God giving us Kyle, as well as this blessing still growing inside of me.

Christmas is Coming!

2006-11-25T21:46:00.000-06:00

Karl and Kyle set up the Christmas Tree today. Karl actually put it on our bedroom so that I could enjoy it with them. Kyle got to hang several little ornaments along the bottom. All the while saying, Wow, Oooh, Yeah, and so on. This is the first year that he's really taken an interest in Christmas or even the tree. So I'm thinking this is going to be a great year for him. He's already got a jump start by learning Jingle Bells, so sweet.

Kyle also got to tour his new school this past week. Karl met with the Director and District Nurse. Everything went great, and Kyle played like a big boy during the meeting. They go back for evaluations with the PT, OT & ST groups on December 6th. It seems so real, my little boy is going to start school!

As a little school gift, mommy has ordered him a very special something, to be given on his birthday. Using most of it will be limited to play indoors until the spring comes, but I know it will be special none the less. We bought him the complete Kidorable Frog Collection. Boots, Hat, Umbrella, Raincoat, Backpack & t-shirt. He watches this little show called Jack's Big Music Show on Noggin, it's all about music and learning. Anyway, his favorite singer, Laurie Berkner, does a song called Boots. During the song, they feature Frog Rain Boots. Kyle LOVES it. He yells, Hop, Hop, and will being hoping or dancing around. He also stomps and acts like he's splashing. It's just too cute for words. Well, I know he wants boots - so I was thrilled to find the exact ones for him.

To discuss his health for a moment. It seems he has picked up a stomach virus somehow. Karl had to take him to the Pedi on Wednesday, and if things haven't cleared up by Monday, we'll have to schedule him in again. However, he does seem to be doing better than the other day. He's stopped throwing up, but we're still working through the loose stool issues - or should I say poor daddy is. :( I have to be a little careful around him, to avoid getting sick myself.

This picture is a little older, but it's from the first snow.

And one more, just because.
Pregnancy News...
Well, you're going to have to get this info on another site. I wanted to keep this blog dedicated to Kyle. So, we've set up a blog for baby. You can access it at the following link:

http://knoernschild.aboutmybaby.com/

We've loaded in some pictures, and added another update there. We have many more pictures to scan, convert and upload, but I can only ask so much of Karl at a time. He is truly the best man in the world. I don't know how he's managed to do as much as he has thus far, but I can't thank him enough for caring for both Kyle and I.

More news from the homefront

2006-11-14T20:16:00.000-06:00

Next week is Kyle's big week. He gets to meet with the Early Intervention School Director and get to tour his new classroom. Karl will be meeting the director and nurse to go over Kyle's general history, basic needs, etc. There's another meeting scheduled in early December for evaluation and placement purposes.

Kyle seems to be quickly getting around his limitations. The other night, he managed to pull out several dresser drawers, positioning them like stairs, and begin scaling them. Karl pulled him away before he got up to the second set, LOL. He's also on a talking streak lately. Learning several new words and sound combinations every day. Books still seem to be among his favorite toys, particularly his Big Baby Book.

Today he did the CUTEST thing. I was laying in bed watching the end of Bringing Home Baby, and the mom and dad were giving their baby a kiss. Kyle was next to me, and crawled over and gave me a great big kiss - I just wanted to cry, it was so sweet :)

One of the moms from my Mothers & More group dropped off dinner tonight, and has offered to pick Kyle up on occassion for playgroup in the neighborhood. In addition, one of my neighbors has also offered to pick him up from time to time, to come down and play at their house. I was so thankful for their offers. I know Kyle will really enjoy getting out to play with other kids. I feel horrible that he isn't able to do much, in the way of out of home activities or getting to see other kids. Fortunately, Karl is working from home full-time now, and his mom has come up a couple times - spending several days to help out. At least I know Kyle is getting enough quality playtime and attention here in the home.

Pregnancy News
Last Friday, due to an overwhelming number of contractions, the Peri put me on Indomathicin to help break through the contractions and give me a little relief. They also ordered up contraction monitoring. I did have some relief through the weekend, but the contractions started up strong again yesterday. Today I had 9 contractions in 2 hours, then I've had about 3/hour since. Fortunately my cervix is holding strong, but it's enough to cause concern. At today's appointment, the Peri decided to put me on a terbutaline pump. My home nurse comes tomorrow to give me my 17P shot, and I think she'll have the pump with her. If not, that will be set up on Thursday. I'll continue with the 17P shots until I reach 36 weeks, regardless of the use of terbutaline.

We opted for the terbutaline pump this time, because the pills proved to be inconsistent, as they are only as effective as your system processes it. In my case, they were wearing off before it was time for the next pill. In addition, I had alot of chest pain from the spikes as a new dose was delivered every 4 hours. With the Pump, I'll instead have a low, continuous stream of medicine pumped in via needle, under the surface of the skin. The continuous flow minimizes some of the risk/side effects often felt in using the pills. It's also a consistent dose, but if I do have breakthrough contractions, I'll be able to press a button so that a bolus dose is delivered immediately. Pump doses can also be monitored and adjusted easily vs. pill form that's dependent on the pre-manufactured dose. Procardia was another option, but since I've been on bedrest, my blood pressure has been pretty low (90s & low 100s over high 60s/low 70s). The doctor expressed a concern about having a negative response/increased risk, since the drug is intended for treating hypertension (high blood pressure).

In general pregnancy/OB related news... I've lost a couple more pounds this month. So I'm back to being 10lbs under my prepregnancy weight (I had gained back 2.5 of that in the month prior, now negated from the loss). It doesn't really seem to matter what I do, I can't gain anything substantial. Fortunately, it doesn't seem to be affecting the baby at all. They're doing regular growth scans to ensure that baby progresses as they wish. Right now he's measuring nearly a week ahead, so that's reassuring. However, I'm measuring 32-33 weeks at only 23 weeks along. That's a little frightening. Still no explanation for the abnormal growth, they've just chalked it up to an anomaly. I go for my Gestational Diabetes test in two weeks. The dr doesn't see any reason why I won't pass. Which is reassuring, because I don't need any more bad news.

In conclusion, I will continue to see my OB every two weeks, and my Peri twice/week. Hopefully the Peri will change to one time per week soon, because admittedly, all these appointments take alot out of me. But I know it won't change until they're comfortable knowing that I'm not at risk for cervical change, and not until my contractions are under control.

Halloween, Progress & Pregnancy Woes

2006-11-07T09:03:00.000-06:00

Kyle was so interested in Halloween this year. As every treater came to the door, he had to check them out with a big grin on his face. He was even trying to reopen the door after they left (scary, since he can unlock the door too now). Most of the night, he sat perched near the front door, staring out the sidelights, or in the front dining room, looking out the window. He just had to be part of the action. He also got to go down part of the block to hand out cards and stickers to his little friends. Here he is in a little overall outfit I made for him, in "Ugly Doll" fashion.

Progress
Kyle is making some great strides in development again this week. He's been trying to let go of things and stand on his own, but still gets a little scared. Well last night, he kept going from sitting to almost standing upright, over and over again. He was so proud of himself, as were we. It was hard to get pictures of him doing that on the camera, so I don't have any to share :(

He's also continuing to work on sounds and words. The latest addition is Box, quite a complex word for him, but he really loves "K"-like sounds, and X is a good substitute for K. And of course hearing him sing Old MacDonald is just the cutest thing ever. E, I, E, I, O - Duck, Quack Quack. He's just so cute!!!

Kyle is getting better at following commands, particularly cleaning up, and bringing items to mommy. He used to pick his toys up constantly, but got out of the habit, so it's nice to see that returning. He also helped daddy put all of his clean clothes in the basket. In addition, he's getting more coordinated in helping to put his clothes on and take them off. He can't put his socks on, but he will set them on his feet. And he loves doing the velcro on his shoes. His other big responsibility is helping with his medicine. He's such a big boy now that when we hook up the syringe to his feeding tube, he insists on pushing it down, LOL. He also knows how his tubing connects to his feeding pump, but he isn't strong/coordinated enough to open the feeding cap, and insert the tube properly, so we still help. I'm so proud of him!

Pregnancy Woes
Well, at my Perinatologist appointment on Friday, we found out that my cervix had shrunk from 5cm to 3.7cm in 3 weeks. 3.7 is still within the range of normal, but the drastic change was a bit of a concern. In addition, I've been averaging around 20 contractions per day, plus general BH irritation contractions. Activity picked up on Saturday night, despite being on modified bedrest. The baby dropped low and was kicking my cervix, causing more contractions than normal. They were timing around 15min apart, so we called L&D and off we went. Once there, they manually checked my cervix, which hadn't noticeably changed (thank goodness). So they put me on fluids and gave me an ambien to help me rest. The contractions at first were sporadic but close, some 5min apart, some 15, some a little more. But given that it was more than just irritation (Braxton Hicks) contractions, my OB kept me overnight for observation. They released me the Sunday morning on complete bed rest for the duration of the pregnancy, or until they decide otherwise.

So, I'm 22 weeks, and on complete bed rest - which isn't easy to accept having a toddler, but we'll do what we must. My Mother in law has offered to come up and stay with us for a little bit, and should be arriving today. After she's gone, we're going to work with friends/neighbors to come in on Tuesdays & Thursdays to help out. Karl works from home the other days, so it's not going to be as terrible as it could be. In addition, the wonderful moms from my Mothers & More group have offered to bring in dinner one night a week. The support is just overwhelming, and I'm so thankful to have friends to help, since I don't have family in the immediate area.

My only major concern, is that Kyle starts EI Preschool in January (4, 1/2 days/week) I just want to make sure he's getting the care/attention he needs in that area. And unless we can get the school director and nurse to visit us here, Karl will have to do all of those planning meetings, plus the evaluations with the therapists without me. I'm confident that he can, it's just that this has been my hands on area, so I'm nervous.

When Life Gets Ahead of You...

2006-10-24T11:17:00.000-05:00

When life gets ahead of you, you just don't take the time to post updates. I've received more emails than I can count over the past few months, asking for updates. I've responded to most by email, but I must apologize for the lapse in updating.

Things have been going very well here with Kyle. He's grown so much, currently around 34lbs, and somewhere in the 37-38" range (it's been a while since we've checked height). When I look back at his weight this time last year, Kyle's gained more than 10lbs. He's now filling out the length in 3T clothing, but his waist needs adjusted (I'm so glad they sell pants that you can adjust). I really can't get over the growth. This time last year, I bought his first size 18-24mo outfit, and it was baggy on him. By spring we were just needing 2Ts, and I thought for certain, given that I had to cuff them twice, that we would be in them through this winter. No such luck, so Mommy has been on a shopping spree getting his cold weather wardrobe in order. And cold it is!

Speaking of Mommy, it seems that Kyle is going to be a big brother, but I'll post more on that below.

Catching up is the Game of the Day
Because Kyle missed his big developmental milestones at age 2, we seem to be well behind the development curve. However, each day we're adding more repitition to learned words, and he can now phonetically pronounce more than half of the alphabet. This is a huge accomplishment, given that Kyle never developed the proper oral muscles that normally develop with eating. Eating is still at a stand still, nothing by mouth - but he will mimic eating sounds and expressions, play with some foods, and pretend feed his little people and stuffed animals.

Kyle is still not walking or standing independently, but we're so close. On the standing front, we've managed to get him to stand solo, without him knowing it on several occasions. But as soon as he realizes what is going on, he sits down. We know he has the ability, particularly because he's been going into a controlled sit from standing without holding on to anything for some time. For walking, we can now walk (sloppily) while holding one hand, and better with two hands. Kyle can also scale the stairs upward, then down by holding the ballisters.

Everything just takes so much time, but I know he won't go off to kindergarten crawling - so I try not to get too emotional about it. It's just hard sometimes when he's frustrated and can't communicate, or wants to do something that he's physically unable to do.

School Already?!?!
In January, Kyle will be starting EI Preschool. Attending every day of the week, except Wednesday, from 8:30-11AM. The school is very close, and I've heard nothing but wonderful things about it. We meet with the director next month, then again in December before he starts. Kyle will go through the routine testing as well, to ensure proper placement. Class schedule is a bit more than I expected, but I'm sure he'll have a blast - he loves being around kids. We'll continue with his regular therapy schedule on Wednesday's in home.

In other family news... I'm 20 weeks pregnant today!
That's right, we're excepting a new baby in March (due date 3/13). We found out at 18 weeks that it's going to be another boy - his name withheld, because life needs a few surprises ;). He's healthy, active, and already measuring a week ahead.

Certainly with another pregnancy, comes many - MANY concerns. Early in the pregnancy, I was having blood pressure problems, undoubtedly stress induced. Fortunately, my levels are better now than they have been since I was pregnant last. I've been experiencing more braxton hicks contractions as the pregnancy progresses. With a few days consisting of 15-20 episodes, which can be frightening as I remember how things progressed before. However, the past week has been better.

Preventing, predicting, and managing pre-term labor has been the subject of most all of my OB & Perinatologist visits (I see them every couple weeks). To help I've spent the entire pregnancy on restricted activities (not quite modified bedrest). In addition, I began taking 17P Progesterone Shots to help in preventing PTL from occurring. It's proven to be 42% effective in delaying PTL up to 32weeks, and 30% effective for the duration of pregnancy. Those that do deliver early, on average show higher birth weights, and better lung development. Which is very promising, given my history. The drs said without it, I have a 75% chance of going into pre-term labor. I have a home nurse that also comes in weekly to deliver the shots, and see how I'm doing. Should anything change, I'll be put on contraction monitoring and issued a terbutaline pump (vs pills last time). But so far, despite increasing BHX, I'm doing worlds better over my last pregnancy.

I do have one very big oddity the drs are watching closely. Like last time, I'm measuring way ahead of where I should be. At my 15 week appointment I was measuring around 22+ weeks. By 16 weeks I was 24 weeks ahead, and at my last drs appointment (19weeks), I was measuring around 26 weeks. My uterus is a good 3 inches+ above my belly button, and I look every bit of it, as I start to really fill out my maternity clothes. I can't remember the last time I saw my feet while standing.

As far as pregnancy weight gain is concerned, mine is almost non-existent. I lost 10lbs early on, because I was so sick. So far I've only gained back 2.5lbs (still down 7.5 lbs). I was overweight to begin with, so the drs aren't concerned at this point. Saying that I might only get back to my pre-pregnancy weight by the time delivery comes. Which will be via c-section, due to having a vertical c-section with Kyle.

Whirlwind & CPR

2006-06-18T11:21:00.000-05:00

The past couple of months have been crazy, to say the least. Kyle and I finally got better, and we (Karl, Kyle and I) managed to get in a vacation to see some family, and attend a wedding. When we returned, Kyle was his normal self, a slight runny nose, but since he's teething, we just kept an eye on it (remaining clear and minimal).

A week later, on 6/9, Kyle spiked a high fever out of no where. In a matter of minutes, he went from smiling to completely lifeless and blue in Karl's arms. I had gone upstairs to grab a thermometer just before this happened. I was drawing up a dose of Tylonal, when Karl said he stopped breathing and was turning blue. It was just that quick - from he's a little warm to completely out.

Karl quickly began CPR, as I dialed 911. There was no response from Kyle, as I rushed upstairs to try and find an oxygen tank. I had already submitted all the tanks back to the oxygen company - so I had thought. I was digging frantically through the closet, when Karl said he was breathing again, but real shallow. Behind a bunch of boxes - in the back of Kyle's closet, I caught the glimpse of a canula. I tugged on it, with resistence - an oxygen tank! I grabbed the small tank, with regulator still attached and rushed downstairs.

I was still on the phone with the 911 operator, she said the paramedics where on their way. It seemed like forever until they arrived. Kyle was no longer blue, rather ashy and stark looking. When he was coming to, his eyes began fluttering. We don't know for certain, because he didn't go into full convulsions - but it was likely that he had a febrile seizure as a result of the temperature spike. When the ambulance arrived, they took Kyle inside of it, and wouldn't let us near him until he was stabilized for transport. I was so horrified, they were taking so long. Finally they swung open the door and told me to hop in the front - we were off to the hospital.

Once at the hospital, Kyle was doing much better, and was pink again. His temp came back at 104.5. They gave him a tylonal suppository. His blood tests came back normal (initially), with exception of his liver enzymes being a little high, and his white blood count was extremely high, 22.5. They did a spinal tap to rule out menengittis, and fortunately that came back fine. Then a loading dose of antibiotics was started just in case. We were given the option of coming home, or being transferred to another hospital. 9 hours had lapsed, and the baby hadn't eaten - he was doing great (laughing playing, no fever) - so we opted to go home, and follow with the dr in the morning.

We saw the dr on Saturday, and all was well. Then Monday the hospital called with Kyle's blood results. He had StepPneumoccocal growing in his blood. None of us, drs included had any idea where or how he contracted it, but the only viable explanation was possibley his g-tube site - or a cold gone really bad (we doubt the later). Fortunately Kyle had already had the spinal tap, and loading dose of anti-biotics. We quickly went into the Drs office again, and he checked him over once more before giving us a script for Omnicef.

It's been one week since we started the antibiotics. Tomorrow afternoon I take Kyle back to the dr for more bloodwork. They won't be looking at his white count, unless it's way off - because the antibiotics will most likely throw the results anyway. However, we are going to be looking at his liver enzymes again, and hoping that they're fine.

A friend told me about a little girl that was recently hospitalized for the same thing that Kyle has. Only her issue didn't escalate to the level of testing Kyle received, and her blood poisoning caused kidney failure, in addition to other things. I hope she's okay, but at the same point - as frightening as this all wass, I'm thankful that what happened did, so that Kyle would the treatment he needed. We had no other warning signs to make us think there was any problem.

The dr said that what occured was not a result of his prematurity, rather it was his body just shutting itself down from the sudden spike in fever. If there is one thing that the readers take from this is to Please, Please, PLEASE take infant AND child CPR courses. There are some variances that you need to be aware of as your child ages. Do not push it off, do not think it couldn't happen to you. This is the second time we've had to use CPR on Kyle - the first due to his prematurity - the second, due to a fluke. I don't even want to think about what would have happened if we didn't know CPR. It saves lives!

Catching the Curve

2006-04-30T09:59:00.000-05:00

It seems that my posts get further and further apart. Since our move, and the launch of TeeniBanini, life has been a bit crazy.

Kyle is becoming the typical toddler, and enjoying the "Terrible Twos" a little more than we would have hoped, LOL. Overall, he's still the best little boy in the world - but the little fake whining fits, and mommy getting her hair pulled in anger is just par for the course.

So what's new??? I think the biggest news is that we are completely free from Oxygen. We actually haven't used it at all since Early October. We kept the oxygen tanks through RSV season, and just got the all clear to return them to Apria Healthcare (our oxygen provider). I can't tell you how emotional this is for us. Even though he's been without it, this is the official cutting of the cord, so to speak. Kyle's lungs are clear, he's breathing well, and screaming almost to the level of a term child. This is just HUGE for us. We are also done with RSV Shots, with the last shot given the last week of March. With exception of his annual flu shot, we are done with shots until he enters Kindergarten.

More big news... I'm sure you remember my obsessive posting about his growth, and being behind the curve. Well, I'm happy to report that Kyle has gone through a tremendous growth spurt through the winter. They are now measuring him on the normal Term Growth Chart by actual age, not corrected age.

Here are the stats from his two-year well baby in January:
36 inches - 75-80% in height
27 lbs - 30% in weight.

Kyle isn't walking independently yet, but he's so close! He has been cruising for months, even before Christmas. And now he's taken to monkey walking - with his legs and arms extended. He can also climb up and down the stairs with ease, and climb up into low chairs and such. He's also been working on his escape plan from the SuperYard and Crib. Kyle piles all of his toys, or pillow and blankets into the corners, then stands on them - trying to hoist himself over the side. This is one time that I'm thankful that he doesn't have the upper body strength yet. I don't think we're ready for a toddler bed yet.

Talking... We are entering a new frontier in the world of little humans, talking. Kyle is getting great at process words, Up and Down, In and Out, Open and Close, On, ball, bath. He also says the first syllable sounds for many words, such as: petting, play, boat, etc. Then there are words that he says a few times, and never repeats, LOL. And then the questions he asks, What is dat?, How Come?, I duh know, and Uh-Oh - LOL.

Singing... Singing is the order of the day. Since he was just a little baby, Kyle has babbled songs, eventually doing babble in the tune of specific songs. Now the songs are developing words, Row Row Row Boat (Row your boat), puhpuh buh Up ee Down (people on the bus go Up and Down), Pied Up Pied Down (Itsy Spider), and he does a little sign language and babbling for Two Little monkeys Jumping on the Bed. And let's not forget the motions for Itsy Spider, Patty Cake, Lil Teapot, and a few more.
I'm amazed at all the wonderful new things he is doing. For a child that was given so little hope for any quality of life, even if he managed to survive - he has truly proven them all wrong.

certainly Kyle is still behind, but mostly limited by physical/motor delays that will continue to be overcome in time. As any parent, I worry for his future - but as each day passes, the worries about his disabilities become less of a concern - because as each day passes, he overcomes one more thing that we never thought possible.

Well, enough babble... Here are some pictures for the past week. First, our big trip into the City to see Daddy at work. This is Trumps new building in the background. I thought Kyle might like to see this when he gets older. Daddy's office is located just across the street, so he gets to see it being constructed.

Always take time to smell the roses, err... Tulips.

Sleeping in the big boy bed.

And a close up of the big boy.

TeeniBanini: A new era in life

2006-01-15T23:23:00.000-06:00

Time has come for me to announce a major change in our life. I'm finally fulfilling a dream, inspired by my little one. I've opened a custom and ready-to-wear boutique clothing store. Right now we're operating off of the web, and hope to move our lines into boutique stores throughout the Chicago Area.

With Kyle as my inspiration, I've developed several different lines and styles of Girl's Clothing, Boy's Clothing, and Accessories; Infant through Child sizes (mommy & me coming in Spring/Summer 06). I should be adding more inventory and photos throughout the coming weeks, as we continue to establish our lines, and forward new designs to models for more marketable photos.

Our company is called: TeeniBanini. Please take a moment to visit our site at: http://www.teenibanini.com
While there, be sure to register for our newsletter. We will be holding a drawing at the end of each month and offering discount codes, exclusively to our member list.

Here's a sneak peak of some of the pieces we have to offer:

From our TechnoTot Line, the Lounge Set. Logo T is customizable with your child's name.

Also from the TechnoTot Line: Coordinating Jeans that feature a matching D-ring belt.

And of course we can't leave out the girls, From our Silver Spoon Collection:
Retro Chic Patchwork Twirl Set

Here's a peek at our Something Sweet Line:

And of course we offer so much more, from brocade and satin blankets to bibs and burps cloths. Please stop by.

But before I leave, here's a picture of Kyle on his new Kettler Trike. I call this one, "Safety First"

HAPPY BIRTHDAY!!!

2006-01-05T21:40:00.000-06:00

Kyle turned 2 on the 30th. What a major milestone! He's so very in to elmo these days. So of course, Elmo was the theme of the party. And he just couldn't take his eyes off of the mylar of Elmo's Head, LOL. It was a great party. My Mother & Father in law both came in, as well as several of our friends and close neighbors. Well, anyway. here are a couple pictures.

Remembering Konner

2005-12-27T14:31:00.000-06:00

Yesterday marked the 2nd year since the loss of our Angel, Konner. I'd like to take a moment to thank him for touching our lives even though he was only with me/us for such a short time.

I'll never forget the dream I had before he was ever conceived. I knew I would have a son, and I knew his name would be Konner William. I'll never forget the day we found out we were pregnant, or the first time I saw that little bean on the U/S screen. I'll never forget the first time I felt him flutter, or the first time he gave me a swift kick. And I'll never forget the day we found out the sexes - I told the dr before he even checked, that there was at least one boy in there - and his name was Konner.

I'll never forget that christmas morning when we rushed to the hospital. And I'll never forget the dr telling us they wouldn't be able to hold back labor very long. I had several ultrasounds over the next 18 hours, so I had many chances to see my boys. I was able to bring in my family, so that they could also see them before it was too late. So that they could see them alive, and playing inside me where they were supposed to be safe.

And I remember seeing you flip and change positions with Kyle on the ultrasound screen. All the drs were confused, but inside I knew what was happening. And then you got stuck, you couldn't break free - and I remember every last kick, every one. And as the final hours came, I made the drs promise me that they wouldn't give me any medicine to dull my senses, or risk losing you or your brother. Although deep down I knew these were my last moments with you.

I remember the very second you were born, and the silence in the room. I hated the silence, I wanted to hear you, hold you, and love you. And as the minutes passed, I finally knew that you were gone. Your daddy returned to my side and kissed me on the head, and I knew. You had given your life, to save your brothers. What greater sacrifice could be given in the world. You were not supposed to flip, you were not supposed to be born that soon, and you were not supposed to die. But my little angel that I later held in my arms was gone.

I love you more than I can even describe, and I thank you for watching over Kyle. I believe deep inside that you were there with him those early days and weeks when it was so unlikely that he would live. And I believe you are there with him know, encouraging him to overcome his challenges. You are part of him, and he is part of you. You are both loved, and part of us.

I will never forget you, my beautiful angel.

Love Mommy.

Not. Enough. Time.

2005-12-23T12:51:00.000-06:00

I apologize for my growing delays in updates. Things have been so crazy since the move. Yes, we did sell our house, and we moved into our new home - which is beautiful. Kyle has made a wonderful transition into the new house, and is developing beyond our wildest expectations.

At last blog, we discuss how he was starting to move around, and could stand for a few seconds unassisted. Well, I'm happy to report that Kyle is a full blown crawler. He can even climb the entire staircase by himself - he can even move the obsticles and gates that block him from climbing the staircase by himself (:twitch).

In addition, Kyle is cruising. Slowly, but steadily. He loves standing, and will stand at his Leap Frog Learning table for a solid hour if he's so inclined. But the very best news of all - well, I'll let the pictures speak for themselves.

He still prefers crawling, because he can get from here to there faster. However, he knows what a big boy he is using the walker.

As we prepare for Christmas, our excitement grows more each day. Kyle is continually showing more interest in Mr. Christmas Tree, and daddy is quickly learning that we shouldn't place the special glass ornaments anywhere near the bottom, LOL.

In other news, Kyle is growing closer to his 2nd birthday. Preperations are underway, so look for pictures after the holidays. Furthermore, we are happy to report that he has been oxygen free since his last illness in August. And, he is finally gaining weight again. Last check was yesterday (RSV Shot day), he weighed in at a whopping 25lbs 4oz. Two whole pounds more than the prior month. More proof that he is doing better, and this transition was truely positive for us all.

Here are some pics over the past couple of months, since you've missed so much.

Tackling the stairs with Daddy, in search of the ever elusive Ms. Savannah

Thanksgiving

Halloween

And just a day at the park with Mommy & Daddy

Tah-Dah!!! Look at what I can do!

2005-09-26T16:19:00.000-05:00

That's right, Kyle has been practicing standing. We have shoe sole inserts that help, but he's finally showing an intrest. He's even pulling himself up to his knees to play with his Leap Frog Activity Table. In addition, he's starting to crawl. No more than 2 steps forward, but he crawls backward and swirls to the sides very well.

More to come...

Surgery Avoided (for now) - and We're Home!

2005-08-25T19:36:00.000-05:00

Kyle is home, playing - and doing great. Some of the tests revealed that he is not aspirating, rather his stomach is very slow to empty - and causing him to more or less explode. The typical medicinal route is Reglan or erythromycin. Reglan is NOT the couse we intend on following, due to serious, irreversible side-effects in long term use studies (neurological damage). In addition, it's not been tested or recommended for use on children - or for long-term use for that matter! Ugh, don't get me started on reglan, it makes me sick to think of what doctors will knowingly prescribe to children without fully disclosing the risks.

So, needless to say, we'll be going with erythromycin. Kyle's scheduled to meet with his GI dr next week, but should have the script tomorrow. His GI doctor is not affiliated with Loyola, and we wanted to remain under his care for the remaining GI issues that Kyle has.

Should the medicine not work, we will be again facing surgery.

Also important to note - Kyle is back to his baseline of oxygen (1/8 litre at night, nothing during the day), and otherwise back to his happy - overly talkative self :)

Thank you for your thoughts and prayers during this time.

Update from Loyola

2005-08-20T12:07:00.000-05:00

We're at Loyola now. There were several problems with the transfer, but to cut out all the garbage that happened, here's a quick update.

Kyle is doing MUCH better now :) Oxygen is down to 1/2 litre. His chest x-ray from this morning no longer shows the pneumonia, just a little infiltrate of hazing. The drs have discontinued the Vancomyacin, and he's only on Clindomycin (sp?) now. They're starting IV nutrition, vs just fluid through the veins, today. And Monday we begin a series of tests to ensure that the Fundo is the right procedure, and that there are no other issues making the situation worse.

We'll be here for at least another week :( But I'm set up at the Ronald McDonald house, so I can take breaks and rotate with Karl.

Thank you all for your thoughts and prayers. And to the ladies at WebMD, Twinshock & HCTS that follow us - Tell everyone that Kyle sends big kisses :)

Kyle's in the Hospital AGAIN...

2005-08-18T23:03:00.000-05:00

Hi all, just a quick update and request that you keep little Kyle in your thoughts and prayers this coming week.

Yesterday, Kyle started getting congested, and it appeared that a teething cold was coming. As simple as this could be, it always spells concern for us. For the past 1.5 months+ Kyle has been pretty much off oxygen during the days (only using it for naps & sleep). He was satting fine throughout the day, but his reflux got considerably worse. Which can be hard to determine from a child that usually vomits 5+ times/day. In this case, he was emptying out every feeding we put in - and if forced us to put him on electrolytes to help ensure some hydration.

He spent most of the night coughing, spitting up and crying. But in the morning (9:30am), he was still satting fairly well (1/8 litre). I went ahead and kept him on the oxygen, monitoring him periodically. After his nap, I did another spot check, and he was desatting - and started crying (which usually makes sats drop futher). Within 3.5 hours he went from 1/8 litre requirement to 2 full litres. That's are notice, per the drs... When he hits 2 litres, go to the ER - so off we went.

He peeked at 3.5 litres by 5PM. Chest xrays revealed what I feared, that at some point this morning, he aspirated. We caught it very early - within maybe 10 hours of it occuring, and it didn't seem too bad. Official diagnosis was Pneumonia due to Aspiration. With no fever and minimal impact, the treatment wouldn't even call for antibiotics - but with Kyle, things are always more difficult than that.

This is the second time in the past 7 months that he's aspirated. We caught the first instance pretty quick as well - desaturation and monitoring is always a giveaway when a problem occurs. We were informed that if it ever happened again, one of two things would happen - both requiring surgery. The first was changing his g-tube to a gj-tube. The difference is that the gj would filter directly into the small intestine, instead of going into the stomach. Kyle currently is not an "ideal candidate" for that procedure because he forceably gags and vomits at the smell of food and other things that effect his aversions (site of a spoon or toothbrush, even a bottle).

The next option would be a fundolication. In this instance the surgeon would create a fold in the stomach, essentially pinching off the area going back up to the esophagus. This is not reversible, and does offer some risks. They can however make the fold not as tight, allowing more flexibility - and prevent stomach atriphe (sp?). We'll go over that final option in the morning with the dr. With this procedure, Kyle will not be able to throw up again - the issues of reflux will most likely be gone. In addition, he will be able to eat when we overcome his aversions. But it comes with a 10-15% certainty of some alternate issue arising (either during/shortly after the surgery itself to the stomach not functioning ever again).

It appears that we won't be able to get the procedure until Monday or Tuesday (unless some miricle occurs). In the meantime Kyle cannot eat for risk of aspiration and future complications. It's very difficult watching your child go through this, and maybe I don't focus on the bad days and hardtimes enough.

I always try to remain openminded, and informed when it comes to Kyle's care. I don't like to worry or stress out too much before a procedure - because it's out of my control. My only sanity is kept in believing that what's about to happen is the best thing for him. What I focus on is his recovery. Making sure I know all the potential risks and warning signs, lobbying the hospital staff to ensure that he is taken care of properly and made as comfortable as possible. Helping to reduce risks associated from intubation (our biggest fear is long term intubation and/or trach). And remaining in good spirits when we're with him. It's so very important that I'm able to comfort him, and not breakdown. He knows when I'm upset - and it does affect him. All I can do is try to make him feel better - because what we are about to face is probably our second greatest fear (next to a trach) when it comes to critical procedures.

The decision however is not ours - we know that something had to be done, and it's our resposibility to do what's best for him. Giving your child over to the drs as many times as we have - putting faith in complete strangers to do the right thing. Knowing that your child will with all certainty face great pain and discomfort. Well, it's truly the hardest challenge as a parent. You want to protect them from all of this, but in doing so - you're only causing them more harm. People that have never faced these decisions in life will never truly understand, or appreciate what we've been tasked with as parents of this little miricle. Certainly there is simpathy and remorse - but for us, it's like asking you to choose which bit of torture your child can afford to live with.

I'll try to update more in the coming days. Please keep Kyle in your thoughts and prayers.

Selling This Old House, Travels & the Loss of a Loved One

2005-08-11T12:46:00.000-05:00

Well, it seems that all things come to an end - and for us, it's this old house.

This was the first place that Karl and I knew as a married couple. Purchased two months before our wedding, it was truly our dream home. We opted to finish up our restoration projects, and sell the house for a variety of reasons - one being Kyle.

With our upcoming move to a neighboring town, we'll also be shifting counties. In doing so, we'll have access to EI/therapy programs not currently available to us, due to overcrowding and financial constraints in our current district. In addition, as Kyle gets older, we'll have the peace of mind - knowing that a newly built school is only 2 blocks away, within the neighborhood and far from busy streets. He'll also have access to play areas, near the community center - and a more traditional neighborhood setting.

We'll certainly miss the charm of our old house, an 1897 Victorian, listed on the National Historic Register as a top contributor to our neighborhood (maintaining it's style/original design over the many years). The house offers 5 bedrooms, 1 full and 2 half baths, a new kitchen featuring granite counter tops, and an enclosed yard with detached 1.5 car garage. As a unique feature to this area, our home has a full depth basement complete with laundry room and work shop area (Karl's hangout). If you're interested in this Old House, please email me for details and access to the Realtor's site.

Here's are some recent pictures of Kyle playing in his nursery (ignore the teething spit please, still working on molars). I love how the daily light filters through the windows. He's getting more playful everyday! He loves studying his toys, every little detail and working part.

I have no doubt that he'll be an engineer like his daddy - and the many other Knoernschild's that fall in line around him. I want to take a moment and talk about this, as many things in life occur and affect us. Karl's uncle, Gene, recently passed away. He was a great inspiration to so many - and most certainly to Karl. He was an Electrical Engineer by trade and Pilot by hobby. The year before he passed away he rode across Iowa, participating in the RAGBRAI. Gene was overcome by a rare form of cancer, and while waiting to see if his bone marrow transplant would take, his body became overcome by infection.

Gene gave Karl his first computer - an IBM XT back when he was in High School, and encouraged Karl to finish up his flight training as an adult. He had a role in inspiring Karl to be the man he is today. In our recent visit to Seattle, Earlene passed on Gene's flight bag and gear to Karl - and I know that touched him, as well as myself. Visiting brought our own recent loss to the forefront for me - and made me that much more thankful for Kyle and the family that cares so much about us.

Kyle already has his first computer keyboard - and as you can see in the pictures above, his "big boy" room is already sporting a couple vintage model planes. We will be happy with any path that Kyle chooses in life, but helping him explore life without limits will be one of our primary goals as his parents. Although raised on a farm, education was a key factor in Karl's house. Both of his parents are well educated (Master's degrees), and his father traveled through Vietnam during the war helping to educate people on farming techniques. Life is a journey with many paths - no matter what path is chosen, it's important to never limit your learning and exploration. There's too much out there that is just waiting for you. On the last day of my life, I hope to be able to look back and say that I did I all that I could to help Kyle learn to achieve anything he wants in life - whether that be in career, hobby or happiness.

Now just a few candids... Did I mention Kyle is rolling? Okay - he's rolling and scooting. In no time flat, he can be half way across the
room, under a chair or getting into a shelf (as he did today) LOL.

Here are a couple pics from our travels to and from Seattle. The first two are pics of Kyle on the plane. Let me see, Let me See, Let me SEEEEE!!!

So Sleepy - YAWN! We caught a 6AM flight, btw - what were we thinking?
On the return from Deception Pass, he decides to show off his advanced Raspberry Blowing skills.

And now pics of my little cowboy :)

1 Year Ago & Surgery Today

2005-07-08T20:07:00.000-05:00

It was one year ago today that my darling Kyle arrived home - finally free from the NICU. All the emotions that day were so overwhelming, and they still are now, as I think back over how much we had to overcome to get to that point, and how far we've traveled since that day.

We had initially hoped to celebrate today in typically Knoernschild style... Going to a special place to eat, after shopping for a small gift for the "Kman" (as he's referred to by many of our friends). However life had a different set of plans for today.

After being so let down by delays in appointments with our Loyola doctors, I finally decided to make some changes in Kyle's medical team. The transition will mean that some of his doctors will not be "networked" as before - but we are as close to that as possible (most reside within the same medical complex at least). Current changes consist of the following:

1. New Speech Therapy Team - focusing on Verbal communication as well as eating disorders (still on the Easter Seals wait list for intense feeding therapy). After our first speech evaluation, I took the opportunity to walk the halls of the Medical Center, stopping in and getting business cards and references for new doctors (all with pediatric/neonate specialties).

2. New Pediatrician - Kyle's existing pedi is relocating, we still hadn't been "officially" assigned to her partner, so this was an good time to start "shopping peds". I found one within the same medical complex of several of Kyle's new drs - including his speech group. Our first "Mom's meeting" is next week. This is an opportunity for me to meet with the doctor before we officially transfer records - to help ensure that she is capable of handing the coordination of his vast medical needs.

3. New ophthalmologist - after having our appointment cancelled, and rescheduled for November with the Loyola Dr, we found ourselves in a bit of a mess. Kyle's glasses no longer fit him, and he's past due for a check up. I found a Peds ophthalmologist in the same building as those above. First appointment, exam and re-order for glasses is next week.

4. New ENT - We were certainly at a crucial point with this, after it had been determined that Kyle was officially tongue-tied - and that it was interfering with development (speech & eating). The dr had an almost immediate opening, so we took it. Last Wednesday was our first appointment. He is a wonderful, comforting, and caring doctor. He was calm and patient with Kyle, and he seemed to like that :) At the appointment the doctor informed us of three things: 1) Kyle's tubes will most likely fall out within the next three months (not surprising, they may need replaced down the road - wait and see), 2) Kyle's tonsils are very large - if he was over the age of 3, he would operate - Kyle is too young, so it's a wait and see; 3) Kyle is severely tongue-tied (he showed me the extent of it during the exam). So - Kyle was scheduled for surgery - due to a first opportunity appointment at our preferred hospital, Karl and I decided that this Friday it would be. More on that below.

5. Nephrologist & Neurologist - Still on the hunt. There are two peds specialists in the same building that carry this specialty. Their offices are closed this week, due to holiday travel - so I will follow-up on Monday... Fingers Crossed.

Now on to the surgery... As mentioned, this was not something we were looking forward to doing, for a multitude of reasons - the least being that it was a reason for celebration on this particular day. However, what we want is quite irrelevant... Because the fact remains, we want a child that is happy - and by all intensive purposes, as developmentally able as possible. As difficult as it can be dealing with the stress and "what-if's" - the final question remains, 'Will this benefit Kyle in the long run, and do the benefits outweigh the risks?' The answer to both of these has always been a resounding YES!

No one wants to see their child suffer, or experience post-op recovery woes - but these are often par for the course when dealing with an extremely premature child. We have been given a gift with Kyle, and it's our role as his parent to protect him, certainly - but also to ensure that we remove as many roadblocks in helping him reach his maximum potential along the way. I digress on this topic a bit, because it's been mentioned in the past by very un-educated/ignorant people that I am too "cavalier" with Kyle's care - such as, what's one more tube - or by not having a near breakdown before every procedure he must go through. The reason why, because if I'm not strong for him - if I'm an emotional wreck - then who will care for him when the procedure is over??? I mean, for example - when your child cannot and will not eat orally - you really don't have a choice, as a parent you must do what is right. When the doctor says g-tube... You stop fighting your fears, and you do what is necessary.

Today did come with great risk, for a very simple procedure. The risk was not in the Frenectomy itself, it was in the fact that Kyle would undergo General Anesthesia. The last time he was put under (without intubation), he stopped breathing twice - and this procedure was a mere 20 minutes. I had great anxiety in the thought of something happening again. This time, the procedure would not last more than one minute - and he would be under for 5 minutes... But with Kyle - the risk is still there. He stops breathing, and the bag comes out - followed by being intubated. It's hard to think about - but re-intubation is my worst nightmare for him. It was so traumatic when he was re-intubated in the NICU, and facing a trach near the end was the hardest thing I ever faced... We avoided that, but it's truly the one thing that I could not mentally get past - it was the one thing I felt I wouldn't be able to handle in his care. Since then, he's had to be intubated for all procedures - except the one mentioned above, which did result in intubation during the procedure, along with a 3 day hospital stay.

I'm digressing again... To the surgery. Kyle left the room at 7:15am, and was back by 7:25 (still sleeping), the procedure went well - no problems. After holding my breath for nearly ten minutes - I let out the biggest sigh of relief ever! After about 20 minutes, the nurse woke him - and to our surprise, he smiled and started to patty-cake. We had been warned that he would be grumpy and probably cry - not a single tear or fuss. He has been playful, a little tired, but otherwise happy and babbling all day.

Prior to the procedure we were told he would most likely remain at the hospital over night on respiratory observation. After ward, the drs felt that he did so well, that we would be able to remain on day observation, and go home in about 4-5 hours. Well, 2.5 hours later, and we were being discharged. Kyle had dropped to his normal oxygen levels (which is currently at 1/8 litre to nothing) and was very active. They were quite impressed - and so were we.

I can't thank Dr. Kalenic (ENT) & Dr. Tax (Aneshtiologist) enough for the wonderful job they did today.

A Picture Is Worth A Thousand Emotions

2005-06-17T09:27:00.000-05:00

Look at that beautiful smile. It's been so long since I've updated, and so much is going on - that it's hard to find the time. But let's start out with the biggest news of all....

Tomorrow (Saturday) will mark 1 week since Kyle gave up oxygen during the day. He only uses it now to sleep, and minimally at that. I know this may only be temporary, but it's a huge step in the right direction. I get teary-eyed just looking at him. He's so happy now!!! We went to gymboree last Tuesday, for the first time the kids didn't have to "be careful". He was just another baby (cry).

I can't tell you what it feels like to pick up my child, free of the wires and tubes and all the things that restrict our movement. I remember hearing Karl upstairs with him last Sunday, we were getting ready to leave - and he was running through the rooms and halls with him. It's so hard to explain these things to people that may never truly understand the emotions... But I must imagine that it's like seeing your child take his first step. This is the third biggest day of our life with him. First being the day he was born, the day we first held him (7wks old), and now this!!!

As for his development, otherwise... Things we moving forward, until his Physical Therapist cancelled all of his sessions for the next 8 weeks. To say that I have been disappointed in the lack of proper therapeutic attention that he receives is quite the understatement!!! So, I'm on the hunt for more therapists again, and keep coming up short. We do have a new speech therapist evaluation next Wednesday, so I'm VERY excited about that. Kyle's last therapist dropped him when he went in for his g-tube, and couldn't get him back on the schedule after that - everyone since has been booked as well - very frustrating when you have a child that is orally averse.

Gymboree is the only "therapy" he is getting, and that really only counts as developmental therapy - but it's better than nothing. I'm hoping some spots open up after the holiday.

------
BTW - we're building a new house... If you know someone in the market for a gorgeous, 1897 restored Victorian, 5br, 1.5 ba up/1ba in basement, full depth basement, and a brand new custom kitchen w/granite, etc... Let me know. Our new home will be done in Oct, current home goes on the market after the 4th holiday. Hint, Hint - LOL. More to come on this in the future.

Life is like a Roller Coaster

2005-05-12T21:51:00.000-05:00

Well, just to keep this short and sweet - we're sick again (which means this post will be long). Kyle & Mommy this time. It seems that he's contracted Bronchitis and a stomach infection. Last week, Kyle was not himself, after returning from a trip to visit Grandma & Papa Ayappa. Although the trip was pleasant, when we arrived home, his oxygen requirements started to spike from 1/16litre or less to 3/4litre - eventually reaching 1.5 litres.

First stop was a trip to the GI doctor on Wednesday. His formula was changed from nutramigen to Pediasure and his prevacid dose was doubled. We're happy for the cost savings (1/2 the cost of nutramigen when you factor cost/calorie), and when Kyle does reflux, he doesn't seem to mind it as much - probably because of all of the sugar in it - grrrrrr!!! BTW - we found out here that he weighed 22lbs & was just shy of 30 inches. We're all pleased with his growth.

Next stop was to see the Pediatrician on Thursday. His suggestion, resume the atrovent nebulizer treatments and start Robitussin Cough & Cold. The x-ray from this visit did reveal that the small air sacs in his lungs were collapsing (not the full lung, just small pockets). However, we did find that the pneumonia from last month is completely gone - YAY!!!

And if the cold and cough wasn't enough, Sunday (mother's day), I go to get him ready for bed and notice a little stain on his onsie in the g-tube area that wasn't there earlier. I get a better look, moving the g-tube around - and I see it, redness, clear puss & pink blood... PANIC, no, be calm... in 10 minutes we were packed and on the road for the ER, expecting to be kept overnight at minimum.

Now at the ER, the Dr examines him - his stomach is tender, and a little fluid is present, along with a knot that wasn't as obvious at home - whatever it is - it's moving fast!!! A little something about Kyle's health, when anything happens with him - it's quick - and I mean QUICK. His oxygen levels can spike from normal to well over a litre within one hour - a rash can spread in minutes. And it takes weeks for a simple scratch to go away. He's hypersensitive to anything and everything it seems.

Well, a culture was taken, and we were sent home with yet another prescription, this one for Augmentum. I'm glad to report that by the next morning, we were already seeing positive results, and it continues to get better as each day passes.

On Tuesday however, I woke up with a severe sore throat, by that evening I started coughing pink blood - from what I thought was irritation. By Wednesday morning, I could barely speak and was in horrible pain. I had already started taking Robitussin Cough & Cold the day before with no relief. I call my drs office - CLOSED, so off to the ER I go. Being an adult, I'm able to detail my symptoms a little better than an infant. After a few tests, an x-ray to rule out pneumonia the doctor returns with my diagnosis. Acute Bronchitis with Asthmatic symptoms (bronchospasms). I'm sent home with Prednisone & Albuterol for the next week.

I hadn't even been discharged, and was on the phone with Karl to get in touch with Kyle's drs. By the time I arrived home, the drs had lined up a treatment path for Kyle - since it was now obvious that Kyle and were sharing the same cold. Kyle was prescribed a 4 day burst of Orapred (steroids), and a 2 week run of Xopenex (albuterol neb alternative). He's already responding well to the Steroid treatment, as his oxygen is currently standing just under 1/2 litre after only 24 hours.

In my discussion with Kyle's pulmonologist, she disclosed that the infection was more than likely due to the Bronchitis. With a child such as Kyle, they expend so much energy and strength to breath, especially when they are ill, that other things can slow - such as digestion. With this bacteria growth can occur. If the system is busy fighting a virus in a vital support system (breathing ranks above digestion in hierarchy) - other areas do not get the protection they need. Therefore, the abscessed area in the stomach due to bacteria growth/infection. It amazes me how the body works - all the things we've learned during this time... It's just incredible!

Well, to end on a good note - I am happy to report that as of last Friday, Kyle did indeed cut 4 new teeth - his entire top row. This brings the toofer count to 7!!! Below are some pictures of our trip down to Grandma's:

Kyle with his Aunt Shelly

Kyle with his Great Grandma Saroja

Kyle just hanging out in his exersaucer

More Firsts: THE HAIRCUT

2005-04-27T09:49:00.000-05:00

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

2005-04-10T11:57:00.000-05:00

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

2005-04-06T22:27:00.000-05:00

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!

www.walkamerica.org/micropreemiesteps

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...

growing, Growing, GROWING!!!

2005-02-13T22:42:00.000-06:00

Well, we had our 1 year well baby check up the other day, and to our pleasure - we are happy to report that Kyle has finally hit the "average" mark on the growth charts!!!

Here are his stats:
Weight: 20.06lbs (75%)
Height: 28 inches (55%)
Head: 44cm (50%)

I thought I would take a moment to include a few of my favorite pictures of him as well - since it's been a while:

February
Playing on the Computer with Daddy

January
Sleepytime Baby

Homemade Texture/About Me Book
from Grandma Knoernschild

Practicing Weening from Oxygen

December
My big boy cake

Happy First Birthday!!! (I'm a little tired, because I didn't get a nap)

Merry Christmas w/Mommy & Daddy

It's been a while!

2005-01-24T11:42:00.000-06:00

Hi all, so sorry that I haven't posted in a while. We've just been so busy!!! Here's a quick update:

At the end of October, they stopped the steroids. We have dropped from 1.5-2litres in oxygen to 1/8-1/4... That's right - we're WEENING!!!

In November, Kyle got tubes in his ears - doing great! Hear's wonderfully :D Thank you Dr. Hotaling!

In December, Kyle got a g-tube put in :( poor baby. He just refuses to eat, so this is really helping with his refulx. I don't regret the decision, but I do want him to eat some day - it's hard facing this as a parent, but Kyle is a trooper!

We have also hit a MASSIVE growth spurt!!! Here are the stats:
Height: 27inches - 50%, yep that's right WE'RE NORMAL!!!
Weight: 19lb 11oz - 80%, starting to level out finally
Head: 43cm (not alot of growth here, but that's okay) - 40%

It's been a little crazy lately!

2005-01-23T14:52:00.000-06:00

Hi all, so sorry that I haven't posted in a while. We've just been so busy!!! Here's a quick update:

At the end of October, they stopped the steroids. We have dropped from 1.5-2litres in oxygen to 1/8-1/4... That's right - we're WEENING!!!

In November, Kyle got tubes in his ears - doing great! Hear's wonderfully :D Thank you Dr. Hotaling!

In December, Kyle got a g-tube put in :( poor baby. He just refuses to eat, so this is really helping with his refulx. I don't regret the decision, but I do want him to eat some day - it's hard facing this as a parent, but Kyle is a trooper!

We have also hit a MASSIVE growth spurt!!! Here are the stats:
Height: 28inches - 60%, yep that's right WE'RE NORMAL!!!
Weight: 19lb 11oz - 90%, starting to level out finally
Head: 43cm (not alot of growth here, but that's okay) - 30%

Hitting the Curve at Record Pace!

2004-09-30T01:09:00.000-05:00

It seems my little guy is not so little any more! He just keeps amazing us at his record growth. Typically babies follow a growth curve, but Kyle seems to be shooting straight up, instead of following the line. We are being tracked on a VLBW (very low birth weight/ less than 1200 grams at birth) Boys chart, based on his corrected age. The Doctor joked that we may need to move him to the LBW chart next month, if he continues at this pace. Keep in mind, that when Kyle came home - he wasn't even close to ranking in the 3% tile category. As a matter of fact, he was so low on the length chart - that he was overlapping the weight graph just below it.

Here are his stats:

Weight: 16lb 9oz (85%)
Height: 23.5 inches (30%)
Head Circ: 41cm (35%)
Feeding: 4 2/3oz 6x/day

We also pulled him off of all his nebs and puffers 2.5 weeks ago (which upset the pulmonologist), within 2 days his oxygen requirement dropped from 2 1/4 litres to .75-1 litre, and he began taking his bottle. She said he sounds clear and looks good, so I guess all wasn't as bad as she made it out to be.

I had been researching his meds and found that the Flovent causes a sore throat and eating averssion (more pain in swollowing), and that the nebs - being stimulants, can also have adverse reactions if you are allergic to them. We already no Kyle is allergic to caffiene, a stimulant, and some of my relatives are allergic to albuterol - more specifically when used regularly. So, I keep the puffer on me for emergency sake (but haven't had to use it yet).

NEWSFLASH: We're Eating Solids... AND - Taking the bottle!!!

2004-09-14T21:18:00.000-05:00

That's right folks, you heard it hear first... Here's the detail:

Last Tuesday, during NICU Follow-up Clinic, we were told that we could begin feeding Kyle rice cereal - which he ate, but didn't care for after a couple of days. So, we decided to add sweet potatoes to it (with pediatric approval, of course). And that did it! Ever since we started the sweet potatoes, Kyle has been sticking his tongue out "tasting" everything that he can get near his mouth.

However, due a little (or big) gas problem from the rice cereal - we needed an emergency dose of Prunes. Yes, those icky things people have to eat, when they can't you know what... Honestly though, the baby food version isn't that bad. Anyway, I decided to give him a bottle of Prune/Apple juice today at the pediatricians, because he was starving - and I didn't want to poor his milk down the tube before he got his shots (poor baby). So, I stuck a nipple on the juice jar, and stuck it in his mouth to see if it would quiet him... And boy did it ever! He went CRAZY, and cried everytime I took it away.

So, when we got home today from our appointments and errands, I sat down to do his feeding with a juice bottle & milk bottle. I started with the Juice bottle, and I got the same lip smacking result. Then I put the milk bottle in after a minute or so... Kyle got a concerned look on his face, but he didn't start choking - so I kept it in, and he kept sucking. Every now and then, I would alternate back to juice and the back to the milk - only to keep his interest in sucking & swallowing. He took 1.5 ounces in all, which is nearly 3x's what he's ever consumed in a single feeding since birth. We only stopped because he feel asleep in my arms :)

Fast forward to the 7PM feeding... And again, 1.5 oz. This time we stopped because something came gurgling back up, and he seriously started choking/coughing. Not wanting to overwork him, and out of fear of aspiration - I stopped. Of course, he wouldn't hear of it - and screamed until I could find the pacifier and stuff it in - LOL.

I figure that he needs to build a tolerance to this, he hasn't consumed more than 15cc's since the end of June - so I don't want to damage a good thing, Know what I mean?

Thanks to everyone that is constantly keeping us in their thoughts :)

A, B, C's

2004-09-05T10:13:00.000-05:00

Well, our little guy has taken on the ennormous task of talking... He has managed to master the following letters:
a, b, e, g, h, i, k, l, n, o, r, u, & w

Quite the vocabulary for a baby that is only 4.5 months corrected, I must proudly say! In addition to this wonderful exploration of sounds, he has discovered that he can join the letters together to form the word of his favorite toy - Buh-All, BALL!

Well, I could go on - but it's just more bragging - LOL!

The Big Weigh-In & Med Line-Up

2004-09-01T17:51:00.000-05:00

Kyle had his weekly visit from our wonderful home nurse, Nancy. Here are the medicine & feeding changes:

NO MORE Ferrous Sulfate/Iron (Hurray)
Prevacid is now 2x's day (instead of 1x)
Albuterol & Atrovent Neb's only 2x/day instead of 3x/day
Feedings are now at 4oz/120cc's 7 times/day

Now, on to bigger & better news... It appears that Kyle's weight gain has finally stabilized. After 5 weeks of dramatic increases, we maintained a relative weight, topping off around 14lbs. It seems that the changes in his calories/oz and increase in diuretics, have helped. However, if he doesn't have a gain next week, we'll have to re-evaluate the situation.

Weights & Measures
Weight: 14lb 1oz (6.39kilo)
Height: 22 Inches (56cm)
Head Circ: 40 cm

Thank Goodness for Infant CPR Training!

2004-08-30T20:21:00.000-05:00

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!

2004-08-28T23:15:00.000-05:00

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...

2004-08-27T18:40:00.000-05:00

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!

2004-08-17T14:25:00.000-05:00

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!

2004-08-17T13:27:00.000-05:00

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

2004-08-16T22:15:00.000-05:00

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!

2004-08-16T22:02:00.000-05:00

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

2004-08-16T21:36:00.000-05:00

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

2004-08-16T00:53:00.000-05:00

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

2004-08-15T22:21:00.000-05:00

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

2004-08-15T20:36:00.000-05:00

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

2004-08-15T12:53:00.000-05:00

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