Medical Mystery

Is what I have been called..... Since my last post lots of things have been happening. My face started to go paralyzed again for the 5th time now... So I was put back on high doses of prednisone 60mgs/day (high is usually 40mg/ day) I feel good while on prednisone BUT have some pretty bad side effects... THEN once that round ended my face swelled to about 3 times its norm... SO low and behold BACK on 60mgs pred for 10 days, then 40 mgs for 10 days then 20mgs for 10 days... so I will be on steroids for about another 3 weeks! Side effects include "steroid face" My face has doubled in size so I am skinny still but have a very large face, its very ugly and embarrassing but I feel good so I can't complain too much, I also sweat like a pig which is gross I have to take many showers in a day to say the least... and lots of other side effects that are just too many to mention, I feel for our kids now that live on steroids due to their prematurity, I know now how they must feel when it happens to them!

Anyway so I still am 100% deaf in my right ear and as of last Friday I was told by ENT there is pretty much no hope of it coming back and due to how much damage I suffered from this there is no hearing aid to assist me at all. SO I am legally deaf! Which depending on the day I am OK with because really what can I do about it, but it is something that is so frustrating at times especially in the car.... I can't hear anyone that is in my passenger seat! It sucks.. So for anyone who talks to me if I don't respond I am not being rude I just can't hear you.... I am constantly having to explain this to people which also gets frustrating...

Went to Rheumatologist yesterday, they now are thinking that it is an Autoimmune condition doing this to me, but they just don;t know which one.... They mentioned yesterday and disease called Cogan's Syndrome which i don't really fit but its all they can think of at this point.... I am being referred to a team in Boston for further testing/diagnosis. That ought to be fun in all my spare time! The doctor thinks its well worth the aggravation though because he says there is something wrong and we need to figure it out! I can't live on steroid forever! I also had an MRI of brain and inner ear yesterday so we will see what that shows.... It might actually show a brain! Imagine! :) Although I am being checked and worked up and all that I am getting very discouraged with this whole thing.. I just want an answer.... What 29 year old wakes up deaf??? (besides me)

Anyway Kids are good, Bryce is up to 4 hours/day no O2 and handling it well so far. Synagis starts next month (we got approved thank god!) Faythe and Nicole are doing good in school and are taking dance so we are staying busy! Nicole takes 9 classes a week and Faythe takes 1. They are loving it!I will post some pics later we have some from the Applefest from last week at Wachusette Mnt. that are really cute.

Changes

This illness (whatever it is) has turned me into someone I don't know anymore.... I am having an extremely hard time dealing with the hearing loss and trying to adjust to life with only 1 functioning ear. Not because I can't hear out of one side but also that my left ear is working so hard to make up for the loss in the right that I can't really go too many places or be where its noisey for too long because it over stimulates my brain or ear or whatever and it makes me crazy. I am going stir crazy because I am still on 60mg of steroids/ day and all kinds of other meds for this thing, plus now I am afraid to go anywhere because of the noise levels, and even being home is hard when the kids get hyper or noisey it REALLY stresses me out. SO in trying to remain positive and not go TOO CRAZY I have taken up baking and I thought I'd share some pictures of my "attempt" at making a Boston Cream Cake. It tastes good, BUT .... Wait 'til you see it! :)
Looks good huh????????? The whole stupid thing collapsed....... Oh well still tasted good!

Finished product, I tried to cover the collapse with sprinkles... Didn't work. Still fun though!

And here are some pics of Bryce taking a tubbie! He just so darn cute!

Will it ever STOP???!!!!

So of course I have been feeling awful all weekend, pretty much in bed crying.... I feel awful because i can't even bear having my kids in the same house with me right now because of the noise and stuff, real nice mother I am, so basically gave them away for the weekend...

Don't you know..., Saturday Bryce seemed to be having trouble breathing (GREAT!) so I turned his O2 up put him to bed, by 10 pm he was up to 1 liter of O! We haven't been that high in I don;t know how long so of cause I'm sick and now he's sick! I gave him a neb... didn't help, called pulmonary they told me to start Orapred and check in in the morning. By morning he was still not better, coughing, wheezing real bad starting a temp. Well THANK GOD his pedi is open on the weekends so my mom helped me get him there since I can't drive , we brought him in, he has a bulging ear drum from an ear infection (eventhough he has tubes) I had NO IDEA he had and ear infection and he also has lots of wheezing. Plan is this: Orpred x5 days, Amoxicillin x10 days, nebs every 4 hours x4 days, and motrin! On top of the 15 pills a day I am taking right now, the incapacitating hearing loss and dizziness! and OF COURSE ITS MONDAY and everyone is at work so I am ALONE! H E L P!!!!!!!!!!!!!!!!

On the bright side here are a few pics:

See he still sleeps with a bubba too and I feel like if he is happy so am I!

saw the camera and follwed to show of his cuteness with out his cannula!!!

Getting into trouble!

In desperate need of Prayers because I think its my only hope!

Hi I know this blog is supposed to be about Bryce, but today I am asking that an and everyone pray for me....

Aside from just finding out I have an ulcer, yesterday morning around 3am I was woken from a sound sleep to the room spinning, and my ear ringing SO LOUD it was unbearable. With in 5 minutes of being awake I was so dizzy I couldn't walk and I went 100% deaf in my right ear. I tried to ignore it and started off to work. I got in the shower got the kiddos ready, dropped them off to the babysitters and started my drive to work, (which I should not have been doing being dizzy). While driving on the highway my symptoms worsened significantly.... I realized that although I thought I was driving in a straight line, I was actually in a totally different lane than I thought. It was at that point I decided it was time to not drive anymore so that I didn't kill or injure someone or myself. I of course started panicking because I was so dizzy and couldn't hear anything. I had my papa take me to the ER. All kinds of tests were performed and they diagnosed me with Meniere's Syndrome, they sort of controlled the dizziness temporarily and discharged me. They told me to go see and ENT, so I called DR Sillmans office (crying of course) and they got me in right away. I went straight in for a hearing test, they did with electricity instead of sound. I of course heard NOTHING.... The audiologist came in and said "It's not good". I then went in to see the doctor and he told me there was absolutely NO electro response in my ear what so ever. He also said "this is not good" He then proceeded to tell me that I may never hear again and the dizziness may never go away. He started me on mega meds and said "I'll cross my fingers, that's all I can do"........
Now I know things could always be worse, I could be deaf in both ears or have some life threatening disease or whatever, BUT this is one of the MOST devastating things to happen to m, I could hear and function on Thursday, on Friday GONE! I don't know how I am going to learn to deal with this..... (Just talking about it is making me cry) how am I going to care for my kids if I can't even walk? Or hear? Or turn my head? Or any of the things I have taken for granted..... ITS NOT FAIR! why is this happening to me? What did I do so wrong to deserve this????? ??? SOME ONE PLEASE TELL ME!!!!!!!!!!!!!!!!!!!!! I don't steal, I don't drink, I don't do drugs, I take care of my kids , I work I do all the things I"m supposed to do... WHY ME! Why not the person who abuses their kids or steals or does drugs? Why me??????????????????????????????????????? WHY ME?

Long overdue!

So not too much to report..... Thats why I haven't been updating lately. Nicole and Faythe are in school. Faythe has done great with her first real school year with the exceptions of a few bus mishaps... and she loves it so far! Dance starts this week. 9 classes for Nicole and Faythe is going to give it a shot again.. We'll see how it goes!

Bryce is now 21 lbs. I forgot his length but he is in the less than 5th percentile for his weight, 30 percentile for his height and 50th for his head! HOLY COW! Big head means big brains! He is doing well we are now giving him 1 hour/day off of his oxygen. But now that he has felt freedom he DOES NOT want it on at all! I can't wait until its gone for good! We went to have his eyes checked today, he is beginning to have a lazy eye and still has astigmatism so we go back in a month to possibly fit for glasses.. How cute!! He is still COMPLETELY refusing to walk. His ankles turn in and he "W" sits WAY too MUCH! So we are keeping a very close eye on all of this he will probably end up with AFO's at some point but we are going to wait a bit until we figure out why he won't walk. Another issue he has is a texture aversion on his feet so that is causing problems with walking as well, he doesn't like his feet on the ground at all anywhere so PT recommends we keep shoes on him as often as possible, so I am doing my best with that too, but he hates shoes......

I have been pretty sick lately which is another reason I haven't been updating,... I just had a few biopsies done on my stomach and am waiting for the results.... I have lost 10 lbs in 5 weeks with out trying.... and feel really crappy some days. Hopefully its nothing. They did however find a "pretty Good" ulcer while doing the endoscopy so I am sure that isn't helping the way I feel if not causing it so we;ll see.

Unfortunately no pics, I have been REALLY bad with that lately.....

Lyme Disease

Well yesterday was an interesting day, Bryce still has his respiratory infection requiring nebs and Orapred.... But Hopefully getting better. THEN Faythe gets up in the morning and I notice what looks to me like the "typical" bullseye rash on her arm and back, I knew right away what it was. I of course call the doctor and we go in. I was right its Lyme Disease. I checked her up and down and could not find the tick but we do remember about 2 weeks ago she had a bite on her arm that we thought was just a bug bite, at that time no bullseye, just a bite. Low and behold 2 weeks later she got the rash. It seems like it may be in stage 2, due to the fact that she has more than one bullseye on her body. She is now on Amoxicillin 3x a day for 3 weeks and then we will go from there....

Beach PIcs!

Happy First (adjusted) Birthday !!!!!!

Well today is Bryce's original due date. He is officially considered a 1 year old!!! We just got back from a sick appt, he has a really bad cough, but its basically just a cold.... They gave him steroids for his lungs. He finally hit the 20 lb mark! We went away this past weekend to the Cape. Nenen and BS took the kids for us. They also went to the Cape but we stayed in different hotels. The weather was perfect. Thanks again Nenen! Will post some pics later.

We've been Sack- ied

Coxsackied that is...... Yup its true, Bryce woke up Saturday morning with a 104 temp, brought him to the doctors couldn't find what was wrong sent us home.

Saturday night never slept even 5 minutes and just cried all night long. Sunday, feeling yucky only slept about a half hour, temp still spiking. About 1 am after 4 straight hours of crying, I called docs, said go to ER. Got to ER was there until 5 am, they did every test the could came up with nothing.

Monday, since Bryce still never slept Sunday night I called the doc again went in and finally blisters had developed in his throat, (not that I wanted that but I needed to know what was wrong) Coxsackie Virus, very painful and VERY contagious! But I was glad to have an answer. there is NO meds to get of rid of it, so we now wait...........

Today he seems better but has diarreah.... Not as cranky though so hopefully is on the mend!

just a picture

Bryce wedged himself in between a glass table and the couch to look down at the foyer where his daddy was working, painting the door. Look at the devil in his eyes. He knows he shouldn't be where he is.... How can you not LOVE that little face!

This picture is where I am telling him "NO" that he can't be there and he is laughing at me..... Pretty sur ehe's going to guve me a run for my money.

I borrowed this from another preemie moms website, It was so beautiful and true I had to post it here

How Preemie Moms are Chosen

(Adapted From Erma Bombeck)


Most women become mothers by accident, some by choice,a few by social pressure and a couple by habit.This year more than 500 000 women in Canada and the United States will become mothers of premature babies.

Did you ever wonder how these mothers are chosen?

Somehow I visualize God hovering over EarthSelecting his instruments for propagation with great care and deliberation.As he observes, he instructs his angels to take notes in a giant ledger.“Armstrong, Beth, son. Patron Saint, Matthew.”“Forrest, Marjorie, daughter. Patron Saint, Celia.”“Rutledge, Carrie, twins. Patron Saint…give her Gerard. He’s used to profanity.”Finally he passes a name to an angel and smiles. “Give her a preemie.”The angel is curious. “Why this one, God? She’s so happy.”“Exactly,” smiles God. “Could I give a premature baby a mother who knows no laughter?That would be cruel.”“But does she have the patience?” asks the angel.“I don’t want her to have too much patience, or she’ll drown in a sea of self-pity and despair.Once the shock and resentment wear off she’ll handle it.”“I watched her today.She has that sense of self and independence so rare and so necessary in a mother.You see, the baby I’m going to give her has a world of its own.She has to make it live in her world, and that’s not going to be easy.”“But Lord, I don’t think she even believes in you.”God smiles. “No matter, I can fix that. This one is perfect. She has just enough selfishness.”The angel gasps, “Selfishness? Is that a virtue?”God nods. “If she can’t separate herself from the baby occasionally, she will never survive.

Yes, here is a woman whom I will bless with a baby less than perfect.She doesn’t know it yet, but she is to be envied.She will never take for granted a spoken word.She will never consider a step ordinary.
When her baby says momma for the first time, she will be witness to a miracle and know it.I will permit her to see clearly the things I see–ignorance, cruelty,prejudice–and allow her to rise above them.She will never be alone.I will be at her side every minute of every day of her lifeBecause she is doing my work as surely as she is here by my side.”“And what about her Patron Saint?” asks the angel, his pen poised in the air.
God smiles.

I know I Know........

I've been very busy with dance recitals and pre school graduations both of which were EXCELLENT by the way...... Sorry :)

Actually I wasn't sure anyone was really reading anymore so I really haven't had it on my priority list, but thanks to one of the teachers at dance I know some do, (thanks Bethany, good luck with the baby, see you next year)

so here's whats new.... :)

Bryce is now 19lbs 4 oz. My fat little baby!!!

Crawling like CRAZY! Sometimes he looks like he's been drinking coffee or something. He's pulling to stand and PT will be working on cruising next.

We have officially started his O2 wean today. He is currently on 250 cc's of O2. This is great hopefully he will be off all together with in a year. I REALLY want to go to nursing school but nobody will take him full time for me until he is off O2 so I can't wait! Plus he HATES his cannula and hates being caught on furniture and stuff while he's trying to get around so it will be really nice for him.

He just got over a cold, but other than that he is generally a healthy little boy and I couldn't be happier!

One side note to all the moms out there:: you know those lovely immunizations we have our poor children get and how they usually are cranky and feel like crap for a few days after, WELL I Can attest to why.... I feel like the biggest baby in the world but I have a whole new sympathy for our babies, last week I went for my physical and it was determined that I needed a tetanus shot... No biggie right I have had more IV's and shots in my time, this will be nothing.... WELL SOOOOOOOOOOO WRONG!!!! It has now been a week since the shot and I still can't sleep through the night because of the should pain I have for the shot.... It is the most awful thing i have ever had done! I feel so bad for our babies, THANK GOD I only get it every 10 years!

Anyways that's about it here, glad its summer can't wait for vacation!

Here are some pics:

Bryce and Faythe in our outdoor Oasis! Ha, ha, ha, a blow up pool! Oasis to me none the less! I LOVE the sun! :)

Bryce LOVES the pool and swings! I'll get a picture on the swings to post.

Faythe's Graduation

He DID IT!! He FINALLY DID IT! And I didn't have the video camera.....

YUP thats right he crawled about 3 feet all by himself!!!!! He wanted to get to a ball and HE DID IT!!!! I'm so proud of him!!! He's such a big boy!

We got the GO AHEAD!!!!!!!

FINALLY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Today we went to pulmonary for our follow up.... We were told that as of June 15 we can start weaning his O2!!!! I can't believe it! So as long as this sinus infection is gone and he is feeling well we can start by dropping him by 50cc's for two weeks, another 50 for another two weeks etc.. until we get to 100 cc's so since he is at 300 cc's right now this should take a few months to get to 100. And only as long as all goes well with the wean. Pulm said he is being very aggressive with the wean to see how Bryce does. If he doesn't tolerate it well we will have to slow it down but we'll see.

THEN once we are at 100cc's we will stay there for a few months to give him a break. Then Dr. K said we can start having "time off" and see how he does with that... This is such huge news for us so keep your fingers crossed he handles it well.... YIPPEEEEEE!!!!!!!

Made it through the WHOLE winter......

Yep, we had a pretty uneventful winter as far as Bryce being sick. He had a few ear infections and colds/flus, but not anything like I thought would happen. So don't you know the nice weather hits, flu/RSV season are pretty much over and he is sick as a dog!

101.9 temp, lost almost a Pound which is bad for him, O2 is turned up to half a liter, he is VERY miserable, cranky, rash all over his face from all the draining boogies, etc... We went to the doctors yesterday he has a severe sinus infection, decreased breath sounds, MAJOR drainage in the back of his throat, not good.

So he is now on Amoxicillin and albuterol for 10 days. If his lungs start sounding worse to me pedi said we'll be in the hospital..... Again! Hopefully the antibiotic will work. I feel so bad for him, all he wants is to snuggle (which is fine by me) and sleep all day but be up all night..... I think I have had about a total of 20 hours sleep in the last week and a half... 3-4 hours a night if I'm lucky.... I hope he gets better soon.....

Long overdue! First Birhtday Pictures!

Here are Bryce's first Birthday pic, and some others!

My handsome Prince!

I know it looks like vomit but its really cake!

Me, Bryce and Nicole at her National Honor Society Induction, Yes she DID get her brains from me!
Tubby Time at Nenen and Grampas! He LOVES WATER!
NICU reunion tent at March for Babies. Bryce is with Aunty Linda.....

Latest Update and a Picture

Bryce now weighs 18lbs. 12oz.
He is in the 3rd percentile for height
Below 3rd for weight and 5th percentile for his big ol' head! (Big head = Big Brains!)

Other than that all is hanging on,. If you can believe it he really isn't the one giving us all the trouble right now its poor Faythe! She just had surgery about 3 weeks ago. She had tonsills, adenoids out due to massive gland abscess we could not get rid of. Also she had to have a plug put in her ear because one of her tubes never fell out and it left a hole in her ear drum, so they had to take fat and skin from behind her ear to plug this hole. THEN last week her pedi recommended we see cardiology because Faythe has "white" spells quite often and we can't explain them, so we went to Child Heart Associates, they did EKG and echo, those looked good. The doc thinks the rhythm of her heart is off so she has been fitted with a heart monitor that she has to wear 24/7 for the next 30 days to see if we can pick up anything! I should have my nursing degree at this point, I pretty much know all you can about this stuff and how to operate all the monitors etc....

Anyway other than that things are good. Finally trying to get our house in order. We bought it 2 years ago but the first year we had it we were just trying to get in and last year is when Bryce came so no work done then either... Catching up on it now. I raked and mowed for hours yesterday.... I now realize how many muscles I have in my body because they all hurt!!!!



This is how I found him this morning..... Oxygen on his forehead!

Some of us at the March for Babies the rest of my team wasn't here yet.

HELP!!! Need advice!

So it is coming to the time where I need to go back to work full time..... Seems easy right? Just find daycare and go. Not so easy. With Bryce's health I have a bunch of dilemmas that I am not sure how to figure out...

1. Still seeing 4-5 doctors for his many health issues. Not as often as before but still pretty consistent.

2. Bryce has therapy 2 times per week at my house, and I think we'll be adding another due to his slight feeding aversion.

BIGGEST ISSUE 3. Bryce is still on O2 24/7 and we won't even begin weaning until at least mid May and that could take many months to get him off or mostly off... And no daycare that I have found will take him with the tanks because of the liability of the tanks tipping or other children getting caught in the extension to his cannula.

4. He is still a very hands on kid that requires more attention than even I can give with just having my three kids never mind 6 or more in a daycare.

5. And then of course THE GERMS!!!! Daycares are full of them and I would probably be out with him more than working due to the germ exposure....

6. And the topper... I do not have nursing and can't get nursing.... So no help there either..

Please if any other preemie moms or ANYONE has any advice it would be GREATLY appreciated, I am in a BIG PICKLE right now.

Just a picture for now

I still have to get Bryce's first birthday pics from other cameras, I promise I'll post them soon. For now here's some recent ones....

Faythe always jumps in the pictures and Nicole runs away.......

Easter

Going Private

So the day has finally come where I, like other preemie moms have to set my blog to private, I need to keep the riff raff out.... Whoever is still interested in keeping up with Bryce and his progress via my blog please leave me a comment or email me with your email address and I will set you as a reader. Once this blog is private if you haven't been invited to read it you won't be able to get to it. I will be fully private by the end of next week.

March For Babies

Just a reminder to those of you walking with us on Sunday. Registration is at 9am, walk starts at 10am. Meet at Worcester City Hall.

See you all then!

HAPPY 1st BIRTHDAY BUDDY!!!!!!

On our way to the docs right now but I just wanted to say Happy Birthday to my little man!

1 Day until he's 1!

My how time flies....
After being in the hospital for 4 weeks in a bed upside down, many medications to stop labor, heparin shots 2 times a day, steroids for Bryce's lungs, no showers and having to use a bed pan for EVERYTHING, my water finally gave up and broke. They told me as long as the fluid was clear and I didn't get a temp I could still stay pregnant, this was at about 9 am they started antibiotics right away...... About 3pm I spiked a fever of 102 they checked my urine and I had a kidney infection, unfortunately they decided it was safer for Bryce to be born than to stay in, so they decided to induce me an 1 year ago tomorrow at 7:58pm Bryce was born. He weighed 1lb 8.2 oz and was 12 inches long..... You know how I said before that the day I was admitted was the first day of the rest of my life... Well I was wrong this was... This was the beginning of a journey I never thought I'd be on...... Thankfully though it turned out better than we thought and we now have a 1 year old son who is perfect in every way!

So enough of the sad stuff, just a quick update, we had Bryce's Birthday Party on Saturday, the weather turned out beautiful, I had too much food and Bryce slept through the first half but it was a great day and such a HUGE milestone to reach because to be honest there were so many days I didn't think we'd make the next day.
Tomorrow on his Birthday the poor baby gets to have his 1 year well visit (shots) Sorry buddy. So Ill update on his stats then. And I will try to get the pics that my mother and mother in law took from the party to show off.

On This Day 1 Year Ago......

On this day 1 year ago my husband and I thought we were going to have the greatest day together. This was the day we were going to find out if we were having a boy or a girl. It was the day we were going to be reassured everything was OK....... Boy were we mistaken.

8:30am we are in the waiting room at the doctors waiting to have our 20 week ultrasound. I had Steve totally convinced we were having another girl.... He was hoping for a boy, but didn't care either way as long as the baby was healthy. Same with me. We go into the ultrasounds room and we are very excited/nervous. A week earlier I had brought myself into the hospital because I felt like I was dilating. They told me I was crazy and sent me home. So needless to say I was a little worried what we would find at this appointment.

Anyway the ultrasound is started, the first thing the tech asks is "do you want to know what it is?" OF COURSE we do! She pauses, looks at Steve and says He has a penis! I thought Steve was going to pass out cold on the floor, he was SOOOO Excited as was I, I was shocked actually. It was such a happy moment we really weren't paying attention to the rest of the test... a few minutes go by and I look over at the tech. She has a concerned look on her face. I looked right at Steve and said there's something wrong. The tech looked at me and said "don't worry, I just want to get the doctor to look at something, why don't you get dressed and I will be right back." A few seconds later my favorite nurse comes in and says "the doctor isn't here right now but will be in just a few minutes, he's going to look at the ultrasound as soon as he gets here, in the meantime why don't you come lay down in another room. Don't worry Erika it will be OK" I knew looking at her she didn't mean that but didn't want me to panic. We go into another room and they make me lay down even though I didn't want to I was too nervous. While waiting in the room I told Steve that I bet they're going to say I am dilated... We heard the doctor in the hallway.. With in a few minutes he came in with a very distressed look and said.. " Erika you are 2cm dilated, with bulging membranes we are calling you an ambulance, but I have to tell you I think you might lose the baby.." The last sentence I heard that day.......

The ambulance came, took me from the doctors office right to the hospital they had a bed ready for me. I looked at the bed and noticed it was tilted upside down... (Trandellenberg they call it) There were so many people in the room, I was panicked and didn't know what to do. They put me in the bed and told me I was going to have to stay in this upside down position, that its really the only hope we had.
They did all kinds of tests on me they had me hooked up to the monitors, I wasn't in labor at all I may have been a little dehydrated. Everything came back fine. The docs came in and said to us " you have a decision to make, you can stay in this bed in this position for who knows how long could be minutes could be months and risk yourself to try and save this baby(meaning I could lose all muscle tone, headaches, infections, blood clots etc all from not moving around) OR you can do what we think you should do and let us induce you today, deliver the baby and let him go."

WHAT! Did you seriously just recommend me letting my child die so that I don't have to be uncomfortable..... Hmmm let me think about that....... Ummmmmm NO!

I told them I would stay this way as long as I could and that they better do everything they could to help us through. They reminded me over and over that I could stay in this bed for 3 weeks and if my son was born at 22-23 weeks the would not intervene and it could all be for nothing. I didn't care, if God forbid that was to happen I would at least have know that I did everything I could to save my son..... From this day forward Steve and did everything we had to to save this baby.....

This was the first day of the rest of our lives.

Added a new little piece... Tell me what you think

I did what I have seen on many other preemie blogs, ( I copied them) I am not a very original person so if I see a good idea I sort of copy.. Sorry Stephanie I hope you arent mad, I almost took your song too because its a perfect song but as I was listening to it I knew it sounded familiar so I rechecked your slide show and it was the same so I didn't.... :)

Anyway now you can see allot of pics of Bryce from when he was smaller. Tell me what you think.

Quick update...

Its been a long day of doctors for Bryce.

Good news first:

He gained weight over the weekend 16lbs 4oz. 25 inches and he is FINALLY on the charts!!!! Only in the 3rd percentile for weight and just under the 5th percentile for height but I am just pleased he finally made the chart!!!!

Not so good news:

Pedi first:
double ear infection (yes he did just have tubes placed) doesn't seem to matter
Pink eye both eyes still not going away so continue with meds for that (cause he's on enough meds already)

Pulmonary:
O2 will not be adjusted down what so ever for at least 3-6 months and that depends on how things are when we go back. :(
This is sort of depressing I'm not sure thats the right word to use but it sucks (better word) for him because he absolutely HATES his cannula so we fight all day long with that and his pulm. doc said it is VERY important that he has O2 24/7 no excuses. During tubbies EVERYTHING! It makes his developement slower because he has so much trouble with his breathing... Its just sad for him. But he is strong and its for his benefit. (notice me convincing myself here)

Then as you know from previous posts, we have been watching his blood pressure... WELL they took it today as they now always do with him and it was THROUGH THE ROOF!!!! 114/74. Doesn't sound bad for an adult but for a baby this is very high... Concerning to say the least. So for now we will still watch but I now have to bring Bryce to his pedi 1-2 times more per /wk to have BP taken. Then we will compare notes form pedi and pulm and decide what next. So in addition to the million dr appts he has every week we now have to add these in which is ok because again for his own good, but if I had some NURSING she/they could do it in our house and I wouldn't have to expose him to all the germs in the doctors office! Plus he doesn't travel well so thats a pain too. 1-2 O2 tanks, diaper bag, car seat, baby, purse, pulse ox.. all weighing 5 lbs or more each.. I bet my purse is about 40 itself.... :)

And some bad news for my sanity: Pulmonary told me that my son is a bit spoiled with being held (which he is, I admit it) and that its time to stop.... SOOOO this means I have to let him cry... For a long time... Hmmm any advice on how NOT to go crazy?????

OK so thats my complaining for now... Time for sleep I guess.

Oh and Thanks to everyone who has already shown interest in supporting us in the walk and to those who will! :)

Not sure what the issue is but spell check still won't work and I'm too tired to know if I misspelled. Sorry.. I weally am smawt> :)

Look at his little face... even sick he smiles! I just LOVE this baby!

march for babies

our March for babies site is

www.marchforbabies.org/babybrycen

if you want to join our team and or donate.

thanks

What??! Its only been about a month ....or so.....

OK, ok I know I am REALLY Bad at this! Sorry its been so busy with work and suregeries ann ear infections and possible RSV, that I haven't had time to update.

Here goes:

Surgery went very well. Did have adenoids removed and tubes placed also had brochoscopy. Air way looks great. He did have allot of trouble breathing after the surgery. He was up to 1 liter of O2. They kept us over one night, tried for two but I begged to go home. They let us go once we got him back to his base O2 requirements of 300cc's. Ever since the surgery he has had a really bad cough. We went to his pedi 3 days after surgery they said it was upper airway from having the adenoids out. Well here we are almost three weeks later still with the cough. So over the weekedn I gave him nebs every 4 hours, didn't help. Called pumonary no avail apts so we went to pedi thinks possible RSV because his lungs are so full of gunk and boogie nose etc. Did not do swab though so won't know for sure. He is now on albuterol and Orapred for 5 days. If this doesn't work we will have to go back to the doctors.

As for his weight, this is becoming another issue. He is still 15lbs 12oz. Hasn't gained anything sionce January 3rd. Watching this for now.

Had our NICU follow up clinic last week Dr Bream was wonderful said Bryce is doing great developmentally he sees no issues at all. Aside from the expected delays. They say Bryce is at a 5 month level. He is 10 months real age, 6 months adjusted age so he is about 1 month behind his adjusted age. We are working on rolling over and sitting up , both are very difficult for him to do, but I'm sure he'll get it soon!

He is still stinking cute, I can't even stand him!

See told you! This pic is from right before is surgery. See his cute little johnny

Practicing getting his feet and trying to roll over! Look at the FAT legs!!! I love em! Oh can you tell he is a binky lover! Every picture he's eating it! I'll have to try getting one of his face and not the binky!

My Happy little guy beating up his toys!

Also just quickly, I wanted to start putting the word out that I am starting a team for the March for Babies event on April 20 in Worcester. I will have my team name etc.. set up soon with more details on the walk and donating etc.., but for anyone who may be interested in walking and/or donating with us for Bryce please let me know. I'd like to get a large team together for him . Leave me a comment with your email address and I will send the info over. Please tell anyone who you think would be interested in supporting Bryce and the March of Dimes. Its a great cause and with out them my little guy wouldn't be here. The March of Dimes had a huge part in bringing Bryce from this:

To This:

So think about it and let me know if you are interested and once I get all the info I will forward it on to everyone.

Thanks for your support.
Erika


PS spell check wouldn't work for some reason so if I made allot of mistakes I'm sorry... :)

Surgery Tomorrow and Finally he has a Tooth!

So tomorrow is the big day. We have to be in Boston for 7:45 am. I don't know what time his surgery is at but I do know he can't have anything to eat after midnight! Fun ride to Boston that oughtta be.

For those who don't know, Bryce is going in for a few minor procedures tomorrow but because of his lungs and his heart its a bit more dangerous for him than the average kid.
We went to Mass Eye and Ear last week and met with some great doctors. We were there ALL day but it was worth it. They are doing the following tomorrow:

ENT doc - Tubes in ears, possible adenoidectomy, Bronchoscopy (for his strider & Laryngomalacia))

GI - Endoscopy (to be sure his severe reflux isn't affecting his airway)

Pulmonary - Echo while he is sedated to measure his pulmonary hypertension and see what is causing his murmur.

Not really sure how long all this will take but I am a little nervous. He only had ROP laser treatment before and was only sedated for that not actually under general so I am worried about how he will do with that..... We will be staying overnight either at MEEI or Mass General depending on how he does in the surgery. Keep him in your thoughts and prayers please.


And yes he finally broke his first tooth through yesterday! Can't really see it yet but you sure can feel it!

Crazy Around here

Here's whats been going on:

Bryce is 14lbs 6oz.

Sleeping better "knock on wood"

We went to Children's Hospital last week for his sleep study, thats was pretty painful, but he was a trooper. Once all the equipment was finally put on he was MUCH better. He was NOT happy, but hopefully it will answer allot of questions. We should have the results soon. Heres what it looked like. Poor Baby! Glad its done though!

Also Bryce is sick AGAIN! We had to go to his pulmonologist Monday because he had a fever, and was having trouble breathing. He is now on Albuterol and Orapred. Then on Tuesday he had to get his Synagis shot so we went to pedi, while we were there they checked his ears and of course he has another ear infection. This is ear infection #5 in 3 months, SO we have now been referred to Mass Eye and Ear for tubes. This surgery isn't normally a big deal but Bryce does not do well with anesthesia AT ALL! The last time he was put under he ended up in ICU, they could not wake him, so they had to reverse the medication after about 4 hours of him not waking up. He had LOT of trouble breathing etc... So needless to say I am not looking forward to this surgery at all! But on the same hand it needs to be done because he gets SO sick when he gets an ear infection and is in so much pain all the time that it has to be done!They will also do his bronchoscopy at the same time. We go Tuesday to Mass Eye & Ear to get our surgery date.


In other news Faythe and Nicole are good, both in school and doing well. Great big sisters and very patient with me and Bryce through all of this.


Nicole has become obsessed with Guitar Hero (Steve too). She also played it with my dad once and he loved it so much he went right out and bought it!

Faythe thinks she's playing too! I am still trying to get a picture if Steve playing but haven't been able to yet....

So thats all for now!

Oh Stephanie and Shannon, I haven't been online in a while an noticed you guys went private, I would love to be able to still follow the kids, let me know what I need to do. Hope all is well with you guys!