More news from the homefront

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

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.

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…

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

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

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.