My baby rolled!!!!

He's been trying and trying for about 3 weeks now and could only get on his side..... Well today he rolled all the way over all by himself!!!! I didn't get a pic because I have no batteries for my camera! It was the cutest thing I ever saw!

Hello...? Anyone still reading this??

I know I know, I have been HORRIBLE at updating lately but with the Holidays and stuff I just haven't had time.... This is also going to be a quick update.

OK Here goes:

Bryce is
13lbs 3 oz.
23.5 inches.

We have finally started charting his growth and he is not even in the 1 percentile yet... Not even on the charts at all.. Even adjusted age.

Anyway he is still sick since basically the beginning of December. He has just gotten over his first ear infection (double) That was interesting. He had a reaction to the ammoxicilin, which is weird because he was on Ampicillin in the NICU and did fine with that.. Who knows.

I received in the mail a copy of his NICU "history" It was absolutely devastating! It basically told EVRYTHING from day one, in explicit detail of all he went through. I should not have read it. Not that I have forgotten anything that happened to him in the NICU but I have sort of put it away because he is "knock on wood" better now. So I am just focused on him now, not him then.... Well after reading page after page of how he probably should not have made it I think I finally realize how very lucky we are to him here with us.

Anyway I also wanted to bring something up that happened to me the other day and see if any other preemie moms have ever experienced ignorance like this before.

Short Version:
Tuesday afternoon I am in Pedi GI office with Bryce. There is a woman there with her son who I would guess was about 6 years old. Of course when I walk in I have a O2 tank, pulse Ox (thats beeping) Diaper bag, Bryce etc.... My hands are about as full as can be. So after checking in I go and sit to wait for the doctor. I can feel this woman staring at me and Bryce, (you know how it almost feels like the are sitting on your shoulder because they are staring so bad) Anyway finally I look up and half ass smile at the lady trying not to be rude. Well don't you know... She goes and opens her mouth and says "Oh wow, is your son OK?" and still being nice I said yes he is OK, he was a preemie. She then says " wow how early was he" 24 weeks I say. She says "oh wow how did that happen" (which really isn't her business, but since I was feeling like I was being put on the spot I said " Preterm labor" (I'm Getting a little irritated now) She then looks at me and says..... You ready for this??........ She says "Really? Wow! Drug babies are usually the only ones born early like that"
OK WHAT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! WHAT THE HELL DID YOU JUST SAY TO ME???????????? I was so furiated I could have spit in her face, but I didn't, I just ignored the comment and went on with my appointment. So heres my question.... Is it me taking this comment the wrong way or did she really mean what I think she meant???
Then that started getting me thinking, is this really what people think when they see me with my son, just because he is on Oxygen? Or because he is small? Or because he is a "preemie" ? I almost felt a little bad about that. It almost made me feel for a minute like I did something wrong..
This WOMAN made it seem like I caused him to be born too early, when in reality I stayed in the hospital on FULL Bed rest, no showers, no bathroom, laying at a 5 degree angle upside down, doing any and everything to save my sons life and this woman actually made me question myself! I AM SO PI--ED!!!!!!!!!!!!!!!!!!! Am I wrong??

Then I start thinking to myself what it must be like for the parents and children who have much more severe disabilities and what it must be like for them dealing with people staring and gawking at them everyday. I give so much credit to all those families who have disabled family members and are still able to stand stall and not let other people bring them down.


Merry Christmas and Happy Holidays to All!!

No News is good News???

Well "knock on wood" things have been pretty quiet around here. I finally had a WHOLE week with no kids having to go to the doctors!!! It was like a vaca. But of course we can't be completely doctor free, I of course was in Monday having a million tests done... Oh well maybe Doc free next week?

Anyway Bryce has been reaching for things now, and when he gets ahold of whatever it is he gets excited and lets it go, but we're working on that. Shocking as this may sound I have no idea what he weighs right now.... We haven't been to the docs in a while so he hasn't been weighed, by the feel of him though I'm guessing 13lbs. 1 oz??? We'll see. I have a couple of pics to post, I have run out of card space on my camera and I can't bring myself to delete any that are on it, eventhough they are all downloaded.... so until I get some guts I won't be able to take anymore... I have to get some guts soon!

Sleep study is scheduled for Decemeber 12 - 13 at Childrens in Boston. I hope we get some answers from it. He is sleeping better but still not great and still chokes allot. Well thats about it for now so far so good, lets hope it stays this way with everyone!

Here are some pictures ENJOY!

HOw Cute! (except for the RED Eyes!)

Lots of New Stuff

OK so heres whats been happening:

Weight: 12lbs. 1.2oz.
Length: 23.75 Inches

Cardiology Appt: Did Echo, EKG and blood pressure.
Echo shows Pulmonary Hypertension, whch he has had for a while now
EKG looks normal
Blood Pressure: High. 80/65

ENT Appt:
has Laryngomalaysia which is why he breaths so loudly.
Will do Bronchoscopy in January to be sure no lesions.

Pedi Appt:
Had Synagis and flu shot.

Pulmonology Appt:
Stay on 300cc's O2 until further notice.
Will do a sleep study in Boston Childrens Hospital due to severe snoring and lack of sleep, rule out sleep apnea,m see what else is causing hyperness and snoring.
Checked blood pressure again 81/63 still too high, will follow for a few months and go from there.

Opthamology Appt:
Eyes Look good so far, will dilate next time for further study.

EI:
Doing OK, head control still not great, but is starting to roll onto his side, I'm still wondering if there isn't more to his developmental delays, but we'll see.

But overall doing well. Per Pulm. need to make some changes for the winter, need to limit visitors, and exposure to any germs.
Still don't have any nursing which is frustrating his Pulm says he can't understand why we aren't getting any help and has decided to email head of nursing co. and request help... We'll see! As of right now the only help I get aside from family is starting next week a volunteer will come to my house for an hour/per week to hold Bryce for me to give me a break. At this point I will take what i can get....... He's allot of work!

Finally an Update!

I wonder what Bryce will be when he grows up????

And heres Bryce..... Oh thats not Bryce, thats his lunatic grandfather! He dressed up for Faythes Halloween Party... Too funny!

Look at his coloring, BLUE! This is another issue that we are dealing with.

His entire body turns this color from time to time and we aren't sure why.

The pic doesn't do it any justice, it was so bright blue I was in shock!

This is what he does with his cannula, he looks like a snake!

Update on my last post:
I did end up calling pedi (not at 2am) and they said we needed to come in right away that the hair loss sounded too extreme. They agreed when I got there that he had lost way too much hair in one day.... They thought maybe thyroid, so they took blood. Not his thyroid, which was good news. They basically determined that it is hair loss due to Post Traumatic Stress. Which probably occured from when he ended up in the PICU. SO thats that all is well now, hair has finally stopped falling out.

Anyway as of today Bryce is 11lbs 5oz.!
We start Synagis next week.
We did end up in the hospital again Sunday for breathing again. We were basically told to get familiar with the hospital because it seems like it will be one of those winters.... Hopefully not!

Also pulm. says we will not wean his O2 AT ALL until the summer. This is pretty crappy, but if it helps him then thats all I can ask.
OT came today and they are thinking we need to see ENT now due to Bryce snoring like a chainsaw, and when he drinks his bottle he always sounds SUPER congested even though he's not. OT is thinking maybe some sort of irritation or collapse somewhere in his throat, possibly why he doesn't sleep well. So he wrote a note to Bryce's pedi suggesting a visit with an ENT to rule anything out. I wonder how many different kinds of specialists we will see this year???
Also our last hospital stay has prompted us to have to see a Cardiologist again. Hopefully we can get all this stuff straight and get Bryce to where he can finally feel good for once! This poor kid has been through so much and sometimes I hesitate to call a doc with a concern because I worry that they're going to send us for painful tests or back to the hospital. I feel so bad for him and there is nothing I can do about it.
Example this last admission, we were in the ER and they were thinking he was going to have to go back to ICU and of course they HAVE to have a line in to go there so they stuck him in every extremity, which made him scream, and during that they blew a vein so severely that he is bruised from finger to above wrist.. and then has blown veins everywhere else. Its not fair. I can understand to a point that they "need" a line but come on, when you see that his veins are blowing so bad that blood is traveling up inside his arm and causing bruising and swelling you should consider if he REALLY Needs it. Then after they FINALLY got a line in they never used it! THEN to make matters worse they put it in his foot and he is so spazy and kicks allot that the next day he kicked the thing out and blood was going everywhere I finally told them to take it out and leave it out! It frustrates me soooooooooo much!
Anyway now Bryce has had diarrhea for the last 2 days and then vomited really bad today..... I don't know whats up with him but I don't like it.
But in happy news he is smiling allot! Some new pics up today!

Any thoughts????

For all you moms out there, I am hoping someone has had this happen too, because I am about to freak out!
This morning Bryce had a full head of brown hair. Now at 9 pm he basically has none left. I have noticed over the course of the day that he looked like he was losing his hair, well now I KNOW he is! I started rubbing his head and clumps of his hair is coming out!!!!! IS THIS NORMAL??? I don't think it is but I couldbe wrong.. I want to call his pedi but I don't want to sound stupid. "Hi Dr., I know its 2 am but my son is losing his hair, what do I do" ??? Rogaine??? If anyone knows whats going on please let me know!

Lucky??

Not much to update except that my 4 year old has been sick with a fever for the last 3 days, and I am trying my hardest to be sure the baby doesn't get it, but its not easy! Bryce hasn't been weighed since the last time but I'm sure he's getting heavier.... trust me!
So since there really wasn't much to update I thought it would be neat to show where we were compared to where we are now.


Here he is now..... October 2007. So cute and FAT! Look at his cheeks they crack me up!

This was taken about 4 days after Bryce was born, he fit in my palms..... so tiny.

Still to this day I don't believe how lucky we have been! I still can't figure out why we were so lucky. When he was born we were told he "probably wasn't going to make it" his heart had stopped, his lungs collapsed, he was septic..... The list goes on and on, but my little man had the will to survive and wasn't going to let some doctor tell him he wasn't going to live. (trust me though the NICU was the best and if it weren't for them he and I wouldn't have survived!) It gives me chills to think about how far he has come.

Eye trouble???

Hi

Well not to much to update, but I am putting up some new pics. Enjoy!

Bryce is 10lbs. now! I don't even believe it! EI came Wednesday and they were trying to do tracking with Bryce and he wouldn't go past midline on the left side, so we were thinking maybe ROP was back. Brought him in to see Dr McKabe today and structurally his eyes are fine but definitely having trouble with the left. When we see Dr Gise we should know more. Anyway thats all for now, "knock on wood" things have been quiet.

Tubby Time! Notice the strategically placed bubbles!

His sister is making him look like an elf!

Still not big enough for the Bumbo!

Increase o2

So as of today Bryce is now 8lbs. 13oz. We went to his pulmonologist Tuesday and he decided that due to Bryce now having pulmonary hypertension and having the ALTE we needed to increase his oxygen instead of giving him time off every day. Bryce is now on 300 cc's 24/7. And instead of being monitored only at night he needs to be on the pulse ox all day as well to watch his sats carefully. They want to be sure he doesn't go under 95%. His nurse came today and said he is wheezing again... Who wants to bet we end up in the hospital this weekend. Hopefully not, but we'll see. Although Steve and I are still married we have decided that it is only fair for us to split the kids on the weekends like a divorced couple would do since I am in much need of a break, so this weekend is my weekend off! What am I going to do????? The sad part is I probably won't do anything! I will probably stay home with the kids. BUT I won't have to do the dirty work I will just get to play and Steve will do all the crappy stuff! I wonder how long this arrangement will last..Hmmmmmm.... Anyway we also saw Bryce's GI doc, we figured out the Bryce is allergic to Reglan so we will not be taking that anymore, so for now he is on 15mg of Prevacid, hopefully this will help with the GERD, it seems the GERD plays a HUGE part in him having the ALTE's. For now thats about it. Pics coming soon. I am trying to get one of him smiling so everyone can see just how precious he is!

ALSA, ALTE, PICU GERD, BPD

A.L.S.A=Advanced Life Support Ambulance - what had to pick us up Sunday
A.L.T.E= Acute Life Threatening Episode - which is what our primary diagnosis was.
P.I.C.U= Pediatric Intensive Care Unit - Where we were admitted this weekend.
G.E.R.D= Basically reflux
B.P.D= Broncho Pulmanry Dispaysia - Lung disease that we were diagnosed with.

OK enough with the definitions basically this is what happened......
Sunday sitting home giving Bryce his neb (from previous admission) all of a sudden he goes into a complete back bend in my lap, starts foaming from his mouth, white chunky stuff pours out of his nose, he stops breathing! Call 911, they get here he is finally breathing but not crying and very, very pale.. they decide he need ALSA, so they call in ALS EMt's from Oxford and they bring the biggest most high tech ambulance I think I have ever seen! Next thing I know we are flying down Rte 20, I am being asked so many questions while the EMT's are working on Bryce.... Scariest thing I have been through... we get to UMass brought right into a room, where the begin working on him, checking Sats (which were pretty much in the crapper) trying to take blood, start an IV, Insert a catheter, Chest Xray the whole 9 yards... while in the process of all this my poor little guy turns the darkest blue I have ever seen in my life... not just his face but his ENTIRE body! Can we say PANIC! Even the ER people looked nervous..... So needless to say we are getting admitted again, but this time they want him in ICU, not just the regular floor. We go to ICU and get comfy by this point Bryce was better but now we need to figure out what the hell just happened....By this time it about 11pm, so they just let us try to get some rest and deal with everything tomorrow. Monday we see about a million docs... GI, Pulmonology, Pedi, everyone... They come to the conclusion that Bryce has sever reflux and that must be what caused all of this. We get discharged from ICU and put on a regular floor to be watched, they changed Bryce to NEOkate formula, start his back on nebs every 4 hours, prednisone, Prevacid, Reglan and IV fluids. During the night about 1 am Bryces heart rate is ringing off like crazy he was Tachy at 237... NOT GOOD. The nurses come in Bryce now has a temp of 101.2 where did this come from??? Who knows... SO they take more blood, another chest Xray and belly Xray everything looks OK, of course with the exception of his scarred lungs which he has had all along anyway. They also did an Echo... The echo shows that Bryce has allot of pressure in the right side of his heart and also he has 2-3 ASD, (defects in his heart) mostly all caused from his BPD. So long story short we finally get discharged yesterday, pulmonology sends us home on an inhaler 2 times a day, nebs and prednisone. GI sends us home on Reglan and prevacid and with strict instructions to watch him carefully..... So after 4 days of NO sleep we are home and he seems to be back to himself. He hates his meds so that is a huge battle ad he really hates his inhaler but we'll get through this. So please pray for him that he stays healthy especially now that it is getting to be RSV season. We definitely won't be going anywhere except doc appts. and visitors here will be limited.. I am going to get to know the inside of my house very well! But thats OK as long as he is healthy. On the bright side he is finally smiling at us when we talk to him so that makes me feel really good!

Admitted into the hospital!

Just when you think you are doing all the right things (think is the key word) You end up in the hospital...POssibly because you made a bad decision (bad decision was taking Bryce out even though I sort of know I shouldn't but I needed a break from the house I am going crazy!)....
Well this past weekend Bryce was admitted into the hospital. Starting last week he had a bit of a stuffy nose I didn't think too much of it but I brought him to Pedi anyway... No big deal she said just watch it... So I do.... 4 Days go by and all of a sudden I start hearing what sounds to be a whistling when he breaths.... Hmmm last time I checked that wasn't a "preemie thing" (because thats the answer I always get) SO I watched it again the rest if the day into the next.. Well it wasn't a whistle it was a wheez! Low and behold he is having trouble breathing! I called Pedi they said get him to ER, maybe even call an ambulance (didn't need to take it to that extreme) So just to be safe and by a little advice from a friend I called his pulmonologist as well..... They said if I had a nebulizer I wouldn't have had to go to the ER but because I didn't have one I needed to get him there... So I did. They did all the crappy tests they do and determined it was RDS..... (Basically a chest cold) but that he needed to stay for nebs and observation. Fine with me better safe than sorry. So this was all taking place around 6pm about 7pm Bryce falls asleep, you know the kids that never sleeps.. And don't you know he slept for 8 hours straight with out even flinching, I almost thought something was wrong... Of course though we didn't actually get admitted until 3 am so I naturally I couldn't sleep.... I think he thought he was home when he was in the hospital.. I couldn't believe it! Anyway they did discharge us the next day with a neb and steroids... Well thanks to the steroids my tiny baby is now a HUGE 7lbs. 13oz! HE IS SO FAT! I could eat him! Of course now being on the steroids he is sleeping worse than ever..... I was so desperate for sleep this week that I called my insurance company and BEGGED crying for some kind of help ie., nurse or something, ANYTHING!!!!!! And even though he is on o2 he is not considered "needy" enough! At this point I'm ready to give a homeless person a place to live if they will stay up with the baby! Hell my bed is big enough, I'd even give that up! Sleep is something you can't survive with out........ But some how I am,. OK enough of my complaining... Last but not least we had our barium swallow, upper GI today.... I am a bit nervous though because they called the doc in a few times... Notsure what if anything that means but I will find out next week.
Let me tell you though, Stephanie you'd appreciate this (poopy talk)..... He is pooping WHITE!!!! from the barium, its sooooo weird looking. Not quite as weird as what you found in Beanies food, but weird!

Update and New PIctures

Since the last update a few things have changed. Bryce is on O2 24 hours a day now at 200 cc's. We went to the Pulmonologist on the 24th and he decided that Bryce needed oxygen 24/7. He took some blood and a chest Xray, the blood was fine, the Xray was OK has scarring from the vent typical of a 24 weeker. We go back on the 25th of Sept and may be able to come down on the cc's we'll see. He sats between 85-93 which isn't horrible but for a baby that is on O2 it should be better. He does get to 100 but hangs lower 90's. Anyway he is now 7lbs. 4oz. 20.25 inches. He has been gaining weight much better since being on O2, which is good. Also we had a follow up ultrasound for his kidney issue, they confirmed kidney stones, left kidney dilated with fluid etc... Just going to continue to follow I guess. We see Urology in October.
Two days ago he got his first cold. Well I think its a cold, he's really stuffy and I have to suction him 8-10 times a day, he hates it. Pedi said to watch it and see what happens. Knock on wood so far so good, no fever or anything just boogies.... He still does not sleep EVER!!!!! I don't know what to do about this problem, I am losing my mind. I maybe get about 10 hours of sleep per week and I can't function like that. Its so hard. He cries allot too and I'm not sure why. He doesn't seem to be in pain, I feed him I change him and nothing works unless I am holding him and i can't hold him 24/7 .... Can I????Nicole started school last week so I don't have my helper anymore, thats been a bit of an adjustment, but I guess I'll survive. Faythe starts pre-school Friday she's very excited, its 3 days a week half days. It'll be allot of work for me but good for her, she needs other kids to play with... So like I said I have posted some new pictures!

Back on the Oxygen train...

Yup thats right, as of Friday night Bryce is back on oxygen. He is on as needed, during feeding and at night. We were delivered about 8 tanks and a condensor Friday night along with a pulse ox. Its not a bad thing though, it is just to help him along during stressful times of day. He desats quite a bit at night and during feeds so we need it just to make things a bit easier for him. I can say though that I cannot imagine for a minute what it is like having a child full time on Oxygen. Just the little bit that we need it is so stressful. Maybe once I get more comfortable with it it won't be so bad, we'll see... Anyway Bryce has hit 6 lbs! He such a fatty I love it! His cheeks are the best! EI came last week and Bryce is developmentally equivalent to a newborn, which he should be because he is only 2 weeks old adjusted. He is having some issues with feeding and so we are working on that. We may have to do a swallow study for his reflux and a few other things that are going on. We will see GI doc soon and find out for sure. Also we will now start seeing pulmonology to follow his lung issues. So needless to say he is keeping me on my toes, but thats OK. I just love him to pieces!

Is sleep necessary?

Hi
So its been a while since I have updated and the reason is because I am too TIRED to even look at a computer.... Bryce is doing OK, as of Sunday he was 5lbs 10oz. Still the cutest baby ever, BUT he WON"T sleep! I don't know what to do anymore. Its been almost three weeks since we have been home and he just doesn't want to sleep. (well except during the day) I have tried everything, I've tried using different beds, I have slept him in his car seat, I have even tried a little cereal in his milk (not sure if I should have) but I am desperate! Last night for example he woke up at 12 midnight and never went back to sleep until about 9am when EI/OT/PT came. Of course when they needed him to be awake. I just don't know what to do anymore..... Anyway aside from the not sleeping thing he is doing OK. Has a little trouble with the suck swallow breath thing, and turns pretty blue when he cries and even sometimes when he doesn't. The docs are looking into the possibility of a little oxygen at home and getting a Pulse Ox so we know what his sats are doing when he cries or holds his breath. He also has reflux which is making him choke and hold his breath allot. His pedi put him on Zantac for that and it seems to help. We followed up with Cardiology today and we won't need to go back to them unless we have a problem so thats good. Tomorrow in Urology for his kidney issues so we'll see about that. The rest of the family is good, Faythe is finally over her fever Knock on wood it stays away for good. And we are getting Nicole ready for school. I go in for my surgery (tying up the tubes) on the 27th provided I can find a ride, Steve started a new job and can't really take the day off for it so we'll see. Other than that all is well I JUST NEED SOME SLEEP! I will post pictures next week.

Due Date and new pictures! (see below) I can't figure out how to put them in a different spot.

So todays is officially my due date. Its so strange to think that I could possibly still be pregnant! I would be HUGE! Anyway this is when we start counting Bryce's development by his "adjusted age". For example tomorrow he will be 1 day old adjusted.

Anyway so its been 8 days since we came home from the NICU. The first night home was pretty interesting. Bryce was a little confused with his days and nights. He woke up at 9 PM and didn't go back to sleep until 8 AM the next day. But I didn't mind because he's so damn cute! Other than that though he has been truly a joy to have home! He is such a good boy. He only cries when he's hungry. He plays when he is awake. I am so happy having him home! Faythe and Nicole have been wonderful with him! Faythe is so good about washing her hands and using GermX before touching Bryce. We don;t even have to tell her to do it she just does. As a matter of fact she tells everyone that comes to my house that they have to wash and Germ X and she shows them how to do it. Shes so funny! On a bad note though she did wake up yesterday morning with a fever and not feeling good so I am a little in panic mode right now praying the baby doesn't catch it. Thankfully Nenen was willing to take Faythe for me and let her stay at her house to keep her from the baby as much as possible, and Faythe didn't mind going there because she knew she'd get spoiled the whole time right Nen? So other than that things have been wonderful I love having him home and hopefully now I can get my family put back together... We'll see! Thanks to everyone who has and is praying for he obviously made it through because of it!
Bryce came home 4lbs. 12oz. and as of yesterday when the nurse came he is 5lbs. 4oz. He's getting so fat so fast! He is too cute! The nurse comes 2 times a week and we go to pedi 1 time a week. We also saw Dr. McCabe on Monday and he said his eyes look good, we will now just have to follow up with Dr Geis. So as for now thats about it! Just trying to get used to having a baby in the house!

We're HOME!

Yes its true after 103 days in the NICU we are finally home. Bryce was discharged today at 10:30am... Its wonderful. Scary but wonderful. Short post today I'll catch up later in the week.

Thought we were going home soon, but nope!

Hi
Well I haven't been posting lately because I have been working REAL hard trying to get Bryce home. We thought maybe we would be able to come home this past week but he is having trouble with his feedings. He is still needing to be fed with a gavage tube and he can't come home until he is all bottle fed. I will be moving into the hospital Sunday for a few days trying to breastfeed all feedings to see if he will eat better that way. We'll see... Lets hope it works. He has had a few yucky days the past few days. Last night he lost 40 grams which is a big loss for a baby, but he is 4lbs. 11 oz. He also has been acting kind of funny lately, just not himself. They did a renal ultrasound 2 days ago and he still has one enlarged kidney with fluid around it and now he has calcium deposits in BOTH kidneys. I guess this is pretty common in preemies. It also looks like he may have a kidney stone. They sent off a urine culture today to see if there is any blood in it. I don't know what if anything they will do about the kidney stones, I'll just have to wait and see. I want him to come home so bad, I don't even know what to do with myself anymore. It seems like my world is falling apart lately..... It sucks.It so strange because even with all the support I get from everyone I am still feeling so alone in this whole thing, I don't really know why. I just wish he didn't have to go through all of this and he could just be home with me.... I'm sure everyone that has a sick baby feels this way too, but I don;t like it. I am such a miserable person now (not that I wasn't before) But its MUCH worse now. I am a walking time bomb. I just cry all the time and I feel like I can;t be happy about anything anymore. I even tried to go to the beach (Thanks Bri and Jess) and I did have fun, but I felt guilty ALLLL day and then was just miserable. I'm sure I am no fun to be around anymore, I even think the nurses and docs in the NICU are getting sick of me. I'm Getting sick of me. ANYWAY, I will stop complaining now, I just needed to get that out. So strange to think its been 97 days since Bryce has been born, even though sometimes it seems like time might be going by slow, it has actually gone by SSOOO fast. If I was still pregnant I would still have 2 weeks left until my due date. Strange huh? I wonder what I would look like right now???? Oooo thats kind of a scary thought... I would be HUGE! But I can say that I would much rather be huge right now than to have to have Bryce going through this. Thanks again for everyones support through all this. Oh and I will try to get some more pictures soon. But you can trust me when I say HE IS SOOOO CUTE! I can't even stand it!

No Oxygen!

Yes, its true Bryce is off ALL oxygen! It happened on Thursday, but I didn't want to say anything right away because I was afraid I would jinx it. Now thats its been 5 days I figured I would break the news. He is doing GREAT with out it. His sats are good almost all the time, only sometimes when he is eating he will drop a little but not too bad. Also some more good news, it sounds like we could be coming come very soon. I was told 2-3 weeks.... We'll see! I can't even believe this is something I have to think about now. It seemed like the day would never come. I feel like I am in the twilight zone! Its great news of course, but at the same time I'M SCARED! He probably won't come home on a monitor, so I will probably never sleep again. There are a few things that have to happen though before he can come home... He has to #1 no longer need gavage tube for feeding. #2 Consistently gain weight. #3 No Desats, Apneas or Bradys for 5 consecutive days. Anyway in other news.... He had a head scan yesterday and all the bleeds and echoes in the brain are GONE! This is also GREAT news, this is one of the things I worried about the most. Also Dr. McCabe (eye surgeon) came today and said his eyes look much better than they did. He said the Plus disease is gone and the vessels have moved to stage 2 (it was Stage 3) so this is all great news as well. (Knock on wood things continue on this good news path) I have definitely determined that prayer has been the reason for all this. There is no other explanation. For those of you who know my whole story from day 1 I bet would agree with me, the stuff we have been through and where we are now... Its truly amazing.

Eye Surgery

So as you can see it's been a while since I last updated.... Well heres whats been happeneing...

I started working last week from home a few hours a week. So the few hours that I have, have been spent working so I haven't been able to update. Then yesteray I went back to work in the office. It was a nice change... Hard but nice.
As far as Bryce goes he has been doing well he is now 4lbs. 6.2 oz. Huge huh? Things have been pretty quiet as of this morning he was down to .75 flow and 21 O2 (basically nothing) So thats been great and he's been feeding well. He has had a few eye exams in the meantime and things were staying pretty stable..... Until this afternoon. Dr. McCabe came to check his eyes around 1pm, and Bryce was in surgery at 9:30 pm. I am just getting home now and its 12:30am. The surgery went great, actually the doctor said Bryce was one of his best so far. But about an hour after the surgery Bryce hd a BIG spell he desatted VERY low and pretty much stopped breathing. The nurses were able to get him back but it was pretty scary, they said its from the sedation. By the time I left the hospital he was back satting at 100% and starting to wake up. Hopefully the night will only get better. Oh and before the surgery they put in back on VapoTherm in hopes they wouldn't have to intubate him and out him back on the vent and so far so good. Lets pray he holds steady then he can ho back on cannula tomorrow or the next day! Well thats all for now, I need to sleep. (as best as I can) Good Night or morning at this point!

4 pounds of the cutest baby you'll ever see.... At Least thats what I think.

We did it! (I say we like I have anything to do with it) Bryce finally hit 4 pounds!!! He hit the 4 pound mark on Sunday! Today he is 4lbs. 1.8oz. and gaining like a champ. I am so proud of him! I have posted a couple new pics, you can see how fat he's getting, I love it! Also his flow and O2 on the Cannula has been turned down from 300 cc's to 200 cc's and from 35-40% O2 to 25%! This again is a big step in the right direction. The doctor that took care of Bryce in the beginning when he was real sick is coming on service for the month of July (Dr. Bean) and I am very excited about this because there is a potential for him to be the Doc to discharge us... Wouldn't that be something. He will have seen us at our worst and then at our best. It would be wonderful if it works out that way! Anyway tomorrow is another eye exam if they are worse tomorrow there is a possibilty we will have to go to Childrens' Hospital for the suregery. We'll see.

Oh last night I went to the March of Dimes web site, they are doing a fundraiser calling "Banding Together for Babies" and what I did was created a band with Bryce's name and some info the site asked for and I send the link to people I know who I think would be willing to make a donation to the March of Dimes in Bryce's name. I am posting on this site so that anyone I missed on email will have the option if they'd like. As you may or may not know The March of Dimes plays a HUGE part in saving the lives of preemies and sick babies. And also are trying to stop this premature birth epidemic with research and things like that so if you are trying to think of a good place to donate money at some point The March of Dimes is a great cause and if it weren't for their efforts many of these babies would not survive. Thanks in advance to everyone! The link to Bryce's band is:
http://www.marchofdimes.com/prematurity/b.asp?band_id=38069

Scary night last night

Well I didn't update last night because I was pretty scared, stressed, nervous freaked out etc.... The reason why is because I had my first experience with Bryce turning blue on me and not coming to without the help of his nurse and the resuscitation bag.... He had just eaten and I was holding him on my shoulder and he was sleeping... all of a sudden his alarm went off showing a Brady, (no biggie he's had these before) his heart rate was in the 40's, so I took him off my shoulder and looked at him, (thats what they tell you to do because sometimes the machines are wrong) While I was looking at him his Sats alarm started going off, that too was in the 40's so I looked at him again....... Well by this point (which felt like forever but was only about 3 seconds) he was completely blue, and not breathing (even though he is on breathing assistance) So of course the brainiac that I am I started screaming "He's Blue!" He's Blue!" so of course the nurse comes, grabs him out of my hands and tells me "Don't just sit there and look at him!" and she puts him in his bed and tries to stimulate him to get him to start breathing, didn't work.... So then she had to get the green resuscitation bag and do a "blow by" which I guess gets him to snap out of it and start breathing again.... Well that worked and he is OK now "knock on wood".... But heres what I want to know....... How in the hell was I supposed to know what to do???? WAS I supposed to know what to do? I don't know but apparently the nurse didn't like what I was doing, which was basically just screaming and trust me I know that wasn't helping him in anyway.... But NOBODY has taught me anything about what to do when that happens! So basically I cried and left..... I know he's my son and I know I am at the hospital ALLOT BUT I don't know what to do when that happens, I have never been in this situation before PLUS I was in a hospital, they should be taking care of that stuff until I am trained in infant CPR and taught how to handle that kind of stuff..... Am I wrong???

Anyway that was just a little B--ch session sorry. Bryce tonight is 3lbs 15.8 Oz. ALMOST 4 Pounds! Exciting! And doing better than last night. Oh and he gets cuter every day!

Weight Loss

Well I just got home from a long day at the hospital. For the most part it was a pretty good day, but Bryce did lose some weight tonight, which is not good. He only lost 10 grams, but he should only be gaining not losing.... Hopefully he'll catch up tomorrow. Anyway tomorrow the eye doctor comes again so we will see what the status of the surgery is. He is still on .3 and 30 on Nasal cannual and handling it pretty well. Thats about it for today.....

Nasal Cannula

Today was yet another bid day for Bryce (and me too). He was put on Nasal Cannula!!! This is a great step towards coming home.... He is on 3 liters and 35% O2, I know NOTHING about nasal cannula so I have no idea how high or low this is all I know is its a good step. Also we still have not had eye surgery. Dr. McCabe came in today and said Bryce's eyes are a little worse but still not bad enough for surgery. He will be back on Friday to check again.



Bryce is now 3lbs. 13 oz. and just the cutest thing! He nurses twice a day now, which is another good step towards home. He got 5 shots in the last three days (immunizations) so sad but he is so good about it, he only cries for a quick second and then he's fine. He's such a good boy. I am still trying to figure out what to do about when to go back to work or IF to go back to work and HOW to go back to work????? Any advice?? This is such a HUGE Dilemma for me right now, its making me crazy!

Oh another bit of good news, baby Jesse is now on VapoTherm and from what I have heard he is doing much better. VapoTherm is a REAL bog step for him, Congrats to Jesse and his family! And thanks to all who have prayed for him, like Bryce he too is a miracle baby and I totally believe that, prayer sis what has gotten Bryce and Jesse to where they are today! Thanks to everyone! Its been a while since I have updated some pics so here are some from the last few days, hope you all enjoy.

Eye Surgery

So it looks like there is still a possibiliy for the eye surgery for Bryce's ROP. Dr. McCabe came in today and checked Bryce's eyes again, they are getting a little worse every day, his right is especially bad. He will not do the surgery tonight but will come back Monday or Tuesday to chekc his eyes again. May need it by then, may grow out of it.... we'll see.
Bryce is now 3lbs. 8.8 oz., they are considering putting him on nasal cannula, but they want to wait until the possibility of surgery has gone away. That will be a HUGE step for us. Other than the eyes he seems to be doing well (knock on wood) he nurses once a day everyday and is doing well with that, next we will try a bottle and see how he does. I have some new opictures t download soon, I just haven't had the time lately.... They say time flies when you're having fun, but I'm not really having fun and I have no idea where the last 9 weeks have gone. I can't believe we are working on our third month in the NICU, I feel like I should just have my mail sent there, I am there more than home.

Been a While

I know, I know its been a while, BUT I have a perfectly good excuse... For the past 4 days we have been at dance rehearsal and recital so I have been getting home late.... Just wanted to say Great Job to all the dancers at LJF the recital was beautiful, see you next year!

Anyway Bryce is OK, he is now 3lbs. 2.6 oz. Getting big and soooooooooo CUTE! I just love him, I can't stand it. We are still in CCN and still on VapoTherm, 1 liter 38% O2. We were given some not so great news today, it seems as though Bryce now has "significant ROP" in both eyes. Yes this is the same ROP that I told you a few posts ago was gone.... Well its back and worse. Dr. McCabe the eye surgeon will be in this week to see Bryce and examine his eyes and discuss the plan.. May need surgery but I'm not sure yet. His feeds are up to 35ml every 4 hours now.. and so far so good. I went and visited our old neighbor in ICU Baby Jesse, his dad invited me in to see him, he is off the oscillator and on the conventional vent and is also in an incubator so I am thinking this may be a step in the right direction for him. He is a fighter so hopefully he can keep going and get better. Please keep him and us in your thoughts and prayers.

Staying at the Hospital too late

Sorry for the delay again in posting, I have been staying at the hospital from 9 am til about 10-11 pm so its been late by the time i get home and by then I don;t feel like posting... Anyway, all is well in NICUland. We are still in CCN, still on 1 liter on VapoTherm, and today we graduated to a crib! Open air! Not sure how Bryce will handle his surroundings being out in the open so its just a trial right now, we'll see. He has to be able to maintain his temp and not desat or brady and for a little guy like him thats allot to ask. But I have faith in him, I know he can do it! We have TRIED to start breastfeeding, he sucks at it, (no pun intended) but really he has only had 1 good feed the rest have just basically been practice. They say he is still young and won;t have the coordination until he is 32-33 weeks (adjusted) so we'll just keep trying until he finally gets it! No rush though. He is now 2lbs. 15 oz. (almost 3!) I bet he'll hit 3 lbs tonight, I will get that weight at 11pm tonight so I will update tomorrow with that. We had Anne for a nurse today which was one of his IC nurses! I missed her it was sooooo good to have her again. So like I always ask please keep praying for him because I know for a fact that it is nothing short of a miracle that we even have him let alone how well he is doing (knock on wood), so please please please continue to pray for him. (Oh and maybe throw a little one in for me, I could use a little sanity at this point.) Thanks!

CCN!!! Happy and sad news all at the same time.

As of 11 pm Friday night 6/1/07 Bryce is stable enough to go to CCN. (continuing care nursey.) Which is still in the NICU but its a different room than what he was in. They moved him overnight. This is GREAT news! He is still sick, but obviously getting better to be able to be moved there. The sad news is that his primary nurse's who I LOVE will not be his Nurses anymore :( except when they work in CCN. I miss them already. But I have to tell myself this is a big step for us, and its one step closer to home! In other news he is now 2lbs. 11.6oz. (as you can see from the scale pic) and seems to be holding his own so far (knock on wood) He is still on VapoTherm 1 liter and 60% O2.

Slacking on the updates.....

Sorry about the delay in updates, I am trying to get myself prepared for going to back to work, and spending as much time in the hospital and home as I can in a 24 hour day! Why can't they make days longer?? I feel like time is just FLYING by, Bryce is almost 2 months old! It feels like I just had him yesterday (only I can walk now). Well anyway, things have been OK the past few days. Bryce now weighs 2lbs. 9.2 oz. FAT! I love it! His arms and legs aren't really wrinkly anymore because he has fat to fill them out! Its so cute! He is almost eating an ounce of milk now (22 mls.) (30 mls. is an Oz.) and seems to be taking it fine. They turned him down to 1 liter of pressure on the VapoTherm. Next is nasal cannula! He has been off the steroids now for about 2 days, so far so good, he can relapse but hopefully he won't. He had his ultrasounds on the 30th, and the grade 1 IVH's are almost resolved and the Thelamic Echos are GONE!!! This is exciting news! His renal ultrasound was not as great, his left kidney is enlarged and has fluid around it?? Not 100% sure what if anything this means, but they will follow it for now. And he is now considered a "feeder and a grower"! One of the Fellows(doctors) called him this and said it with a smile so it must be good! They have moved us to a different pod, we are now in Pod 2, it seems to be quieter in there.... Its pretty good except for the fact that I keep almost going into Pod 3... I'll get used to it! Keep up the praying please, it IS why we have been so lucky!

Been a few Days

Its been a few days since my last update, but things/people in my life have been a little "crazy" lately and I haven't had too much time to update but I finally have time now.

Bryce is now 2lbs. 5oz.! He is on 3 liters and 30% O2, and as cute as can be! Tomorrow is a "Big" day, he has his head ultrasound and renal ultrasound...... Lets hope they are OK. These are pretty important tests and I am praying that they are good results. Other than that there is not much to update on... Oh did I mention how cute he is??? I will hopefully have some more pics soon.

Tubbie Time!!!!!

Today was an exceptional day! Bryce has finally hit the 1000 gram mark! Thats the magic number in the NICU. And because of that (and the fact that he is a little stinker) he got to have his first tubbie!!!! Honestly it was the cutest thing I have ever seen! At first he cried just for a quick second and then I think he realized he liked it because he was relaxing in the tubbie the rest of the time! Then after his tubbie I was able to give him a little massage, and of course like a typical male he LOVED that! I have pictures! (of course) Some of the pictures look red because when Anne was giving him his bath she put him under heat lamps to keep him warm and they gave off a red light.
Also some more good news (knock on wood) it seems his ROP may have gone away.. Not sure how but they said it did! Must be all the praying, so keep it up! Theres no other explanation for it! I'm not sure why I deserved to be so blessed. I mean we are in a pretty crappy situation but under the circumstances we have been pretty lucky... When I was in the hospital for the 4 weeks trying to keep him in all I heard day after, day, after day was that #1 I either would not stay pregnant long enough for him to even have a chance or #2 If I did make far enough that he probably wouldn't survive and so the docs wanted me to just induce labor the first day I was there and just let it go.... Well THANK GOD I didn't! Now look at what I have..... He may be tiny and he may have a few "things" going on, but to me he is the most perfect little baby and he is doing pretty good under the circumstances! He is obviously a fighter and wants to be part of this family and world as much as we want him to! I am so glad we didn't let the doctors convince us that we had NO chance. The way I looked at it was if it wasn't meant to be it wouldn't be, but I wasn't going to be the one to decide it wasn't going to be... If that makes any sense. I'm sure you know what I mean. To me all three of my kids are miracles in their own way and Bryce is no exception...... I am so thankful that I have/had the support from family and friends to be able to even get this far because if it wasn't for all of you I would not have been able to get here! Thank you to everyone for you support & prayers, I couldn't have done it with out you all! Oh also for those of you that I owe thank you cards to, they're coming I just haven't had a spare minute to get to them, but I promise I will! :) So anyway please continue to pray for us, its definitely what is getting us through...

Weight

Just got back from the hospital again for the second time today... Bryce weighs 2lbs. 3oz. 990 grams now! Gain of 20 grams from yesterday! Also daddy finally held him today or the first time and do you think I brought my camera????? NO that would have been to smart of me to do and we wouldn't want me to be smart now would we??? Anyway that really upset me, but now that he feels comfortable holding he will probably do it more often and I will try to remember the camera the net time. Its all because I was downloading pictures off it earlier to put on this site and I left it hooked up to my computer... Sorry

VAPO THERM!!!

So today was a good day! I came in to the hospital to find they had changed Bryce over to Vapo THerm, he is on 35% O2 and he started last night at 6 liters and is now down to 4!!! This is GREAT! It is however only a test and he may end up back on the vent but maybe if we all pray REAL hard he won't! Today is the first day I have seen him with out a million things coverng his face, it was unbelievable. As you can see his cheeks are quiet large.... The cutest cheeks I have ever seen! He is SOOOOO CUTE!!!! I just love him to death! I could eat him... :) anyway so other than Vapo Therm it was a pretty quiet day. I got to hold him of course and of course it was beautiful as always.

Finally New Pictures!

So I finally had a little time to figure out my computer problem.... Anyway I have added 2 new pictures of my little fatty. All 2lbs. 2 oz. of him! He is 14 inches long now too!
Today is day 3 of CPAP and "knock on wood" so far so good. Lets hope this keeps up! He is still on steroids and caffeine, Vitamin E and Iron... Its been pretty quiet the last two days. I held him today and yesterday.... and I have also been able to change his clothes and stuff which has been allot of fun. Its pretty amazing what you find fun when you spend all of your time in the NICU. :) Changing his diaper is one of the highlights of my days! So silly!
Anyway he was at 41% O2 when I left tonight which is down from yesterdays 55% so that is good too.... Not much else to report for today. Good night!

Technical Difficulties

Well looks like I am having some issues with uploading the newest of pictures. I will have to find some time to try to figure out what the issue is, but for now I don;t have the time to do it. Sorry.
Anyway, its been a pretty good couple of days, today the switched Bryce back to CPAP for a second trial, but this time he has been on steroids so that may help, we'll see. He's been on it for a few hours and "knock on wood" he seems to be doing well with it. Some potential bad news today though, Bryce had his eye exam earlier than expected and he does have stage 2 ROP (retinopathy if Prematurity) in his right eye. Its not a huge concern for the docs yet because it is only in one eye so far and its only stage 2 which I guess isn't terrible, but they will give him an eye exam every week to watch the progression and if it does get worse they will have to do surgery. So just another thing to watch put these guys are pros and know what they are doing! Bryce also did lose 15 grams today so that drops him to 2lbs. 1.5 oz. not to bad but I would rather him stay the same or gain not lose. So thats about it today! Thanks again for everyones support and prayers, it's what is getting us through!

Sorry I can't Load the New Pictures

Yesterday I mentioned I had new pictures and for everyone to check them out, well I do but for some reason I can't get that part of this site to work. I'm not sure whats wrong and right now I just don't have them time to try to figure it out. Sorry.

Anyway today was a good day, Bryce now weighs 2lbs. 2 oz. (getting big) He is on his 5th dose of steroids. He gets it every 12 hours 4a & 4p. They have done a tiny bit more weaning on his vent he is at 18 pressure and still 19 breaths... That may change tomorrow, he has a gas at 6a, so if its still good they may wean him more. Keeping my fingers crossed... Other than that it was a pretty quiet day, I didn't go to rounds because I was holding him, and since I was there yesterday from 9a - 8p I went home semi early today (1p) and cleaned my house and then we had company so I did get back up there to see him again. But I talked to his nurse Wanda twice and so far so good! Good night.

Let the Weaning Begin

Today is day 2 of Bryce getting steroids. So far they seem to be working good, the docs have been able to wean him on the vent. His breaths are down to 19 (not sure of the medical term) and his rate is 19 as well. His O2 is at 50% right now but they are hoping to wean that soon too. His carbon dioxide is down in the 60's from the 80-90's, so far so good as far as that goes. Hopefully he will continue on this path and get off the vent soon. He is 920 grams today. I held him again for about 3 hours so nice! I wanted to hold him again later in the afternoon but he is only allowed to come out once a day. He is getting Vitamin E and Iron now and they increased his feeds to 17 ml every 3 hrs. Try to fatten him up! So thats about it for today, the weather sucked so I just stayed at the hospital all day... Oh I posted some new pics from today's hold. Check them out.

Hi Everyone,
Yesterday was a big day for Bryce, it was his first day wearing clothes!!! He looks so cute in them! Of course nothing fits but its still cute. I had to take pictures with my disposable camera because his daddy had my camera for work, but I have it back now so I will take some pictures tomorrow to post. It was a pretty quiet day yesterday, I was there most of the day, rounds were quick no big changes, just the same old talk about how Bryce has Chronic Lung Disease and that they want to try getting him off the vent. They talked about steroids as a possibility, but he has to gain more weight first. Also he got his first vaccination Hepatitis B shot. His nurse was Anne today (a primary) and she felt bad that she had to give it to him, he did cry but I contained him right after the shot so he only cried for a second. The worst part is you can't hear him cry because of the tube in his throat but you can see it.. Its so sad. :( I hate when he cries. So thats about it for yesterday.. Oh I did find out I am going back to work June 4th.. Boy does time fly! Its been a month already! The rest of the fam is well, I went to Nicole's dance observation last night they did great as always! Almost recital time....

Anyway, today I went to the hospital and it was another BIG day... Bryce has hit 2 pounds!! I never thought I'd see the day. I did get to hold him today and I got top hold him normal, you know just in my arms, and I could stare at him the whole time! It was wonderful, he did good until towards the end, he desatted a few times so we put him back thinking he just didn't want to be out, but as soon as we moved him we realized it wasn't that at all... He had pooped and he is very sensitive and he didn't want poopy pants and thats why he desatted. Once I changed him he was fine again. He had a new outfit on today its so stinking cute! He looks like a tiny old man! Love it! So in rounds today they decided its time to start steroids... This is good and bad. Its good because with his chronic lung disease it will help get him off the vent, its bad because it has many side effects, slows growth, can damage brain, can mask infection etc.... so I don;t know we'll see. Let's pray none of these happen. So for now thats it. We have some big tests coming up so please pray for him! Thanks!

Better Day Today???

So yesterday was Mothers Day and I didn't get to hold Bryce, but that's OK I got to hold him today and he did GREAT! He satted in the 90's the whole time and was happy even after we put him back. He did lose weight though 30 grams but he's still 820 which is where he ends up every time he gains and then loses. So he's basically just staying the same, they keep adding calories to his food so hopefully he start gaining soon. His nurse was Patty today she cracks me up, funny lady and sweet as can be. At the end of the day around 4:45 it was time to get Bryce ready to eat so Patty did his evaluation (which they do every three hours) and then she had me change him. Well a few minutes before all this his heart rate started to drop way low and he had white knuckles from squeezing his hands so tight, so of course I panic and think something is wrong so I call the nurse over and she says "Oh he probably just has to poop" so when it came time to change him sure enough he had a little poop in his pants..... so Patty measured his belly to see if it was distended and she told me he might still have more to go well I didn't listen and continued to change him...... I should have listened... Me, the new diaper and the bed were about to become pooped... He shot a poo stream all over me, and his bed.... I didn't think he could hold that much in him! It was pretty gross, but its very good that he goes like that because it means his belly is still working good for him, which can be an issue in preemies.. So it was worth getting it all over me, PLUS Patty (who had just gotten done telling me not to get it all over the place, sorry Patty) had to change all his bedding which meant I GOT TO HOLD HIM while she did it! So it was definitely worth it! Grama and grandpa came by to visit that was nice.... So all in all, eventhough I don't want to say it, it was pretty good day! Knock on wood......
Oh and thanks to everyone for coming to Faythe Birthday Party yesterday, it was fun and sorry for being a mental case.... I'm a little stressed out right now.

??????

So like usual I got to the hospital today about 9 am.... Bryce's oxygen was WAY up. He was at 52% from 28% BIG JUMP as far as I am concerned. Docs don't seem to concerned about it but I personally don't feel comfortable with it. But anyway Bryce did seem more calm today, he had about 2 desats while I was there which isn't horrible but like I said he was getting allot of oxygen, so really he shouldn't have been desatting at all but he was. Rounds were fine, they started him on vitamin E today, they increased his feeds to 15ml every 3 hours, they ordered and renal ultrasound, a head ultrasound and an eye exam for 2 weeks from today, keep your fingers crossed and prayers going that those all come out fine and thats about it. Quick rounds today. He did gain 40 grams today! Which is great, pray he keeps gaining. Its so funny because I noticed today what I thought was his cheeks swelling. He has these little puff balls on his cheeks, it sorta looks like he has marbles in his mouth, so of course as I always do I panicked and called his nurse over to find out why his cheeks were swollen.... Well what it is, is that when preemies finally start to gain weight it first goes to their fat bags in their cheeks.. Its so cute he has this tiny little face and then two marbles for cheeks... Its pretty funny and if you have ever seen preemies when they are older (which I have now seen allot) all of them have marble cheeks... Too cute! Of course he's cute no matter what... He did have on Brady today and one yesterday which he has never had before but again its just another one of those "preemie things". Oh for anyone who is praying for us I would like to ask that you say a little prayer for baby Jesse. He is also a 24 week preemie and he is our neighbor and he is having a bit of a tough time right now. He's a strong boy and his parents are very caring and love him very much and I hope he does well but I think some prayers would help. Thanks!
So anyway thats about it for today, I didn't hold him today because we figured maybe a day off would benefit him. Taking him in and out puts allot of stress on him so we just decided to give him a break. Hopefully tomorrow and Sunday. I won't get to see him very long on Mothers Day because we are having Faythe's Bday party that day, but I hope I will at least get to hold him for a bit that morning. We'll see, it will all depend on him! He better behave on MOTHER'S DAY! Again Thanks to everyone for posting its good therapy for me and it also saves on my cell phone bill! Love you guys!

If it Seems Too good to be true it Probably is.....

So just as I had expected we are starting our bad days again. I knew I shouldn't have gotten my hopes up.....The day hasn't been totally horrible but we are starting a downward trend... Bryce had about 5-8 Desats and counting... They weren't going to do another blood gas until Saturday but he kept desatting and was really antsy so they checked it and he is starting to have bad gases. They decided to go up on his pressure and O's and he seems a tiny bit better but we want them to be going down not up, and they can only go up so far before the have to go back to the Hi Fi... Please pray he gets through this with out having to go to the HI Fi... all this up and down is taking its toll on me.... Right now I am trying to decide whether to go back to the hospital or not... It sucks because just when you begin to relax and think he's doing better things take a turn. The worse part is not being able to tell if he is in pain or not..Sometimes the desats can mean he is in pain but you can never tell for sure. Well anyway hopefully this is just a fluke and he'll be better tomorrow.....

How many has it been???

How many good days have we had???? Well today was another! I don;t even know what to say. I got to hold Bryce again today, only for an hour and a half but even 5 minutes is worth it to me. He behaved all day. Bad News is he has lost a total of 70 grams in the last three days... I'm a little concerned about this but I don't think the docs are, but good news is at rounds the docs decided he no longer needs any IV's (for now anyway) and longer needs IV nutrition SO they took out his PIC line! This is a big step because it means he is maintaining his fluid levels on his own and not dehydrating. They are adding triglycerides to his milk and one more supplement to fatten him up, in place of the IV nutrition. He is up to 13 ml. every 3 hours... (this is good seeing as he started at .5 ml) Other than that not too much to report..... He's being a very good boy, lets just pray he stays this way! (Especially when he gets older)
Also today is Bryce's big sister Faythe's 4th Birthday! Happy Birthday Faythe!
I took the girls to visit Bryce today (faythe was bored though so we only stayed about 5 minutes) So all in all it was a good day. I tried laying out in the sun again but it was WAY too hot so I just went back up to the hospital instead... I tried.

Another Great Day? I'm Getting Nervous

You know how the saying goes... "if it seems too good to be true, it probably is" I don't know....
Today was ANOTHER great day! Seems like this could be the calm before the storm, but hopefully not. Anyway I got to the hospital around 9 am like usual and I was praying that I would get to hold Bryce today... Well as soon as I walked in the first thing the nurse (Angie) said to me was "what time do you want to hold him?" The best 8 words anyone could have said to me. So I went pee and sat down. I started the hold at 9:15 am and was putting him back (only because it got noisy in the pod) at 12:30 pm.... It was the best hold we've had so far. He was so comfy the whole time and satting in the 90's the whole time. He never desatted or anything! It was perfect. At rounds they canceled his echo he had scheduled for tomorrow because they are pretty sure the PDA has closed! Still not getting my hopes up but for now this is great! On the not so great side Bryce has lost 40 grams in the last 2 days... He should be gaining 20-30 grams per day...could be because they have slowed down his IV nutrition and just have him on breast milk with a supplement for calories and they say sometimes during the transition they lose a bit of weight BUT he does need to start gaining fairly quick so he doesn't have to go back on high IV nutrition. Other than that things "knock on wood" seem to be OK for now.... Please keep praying for him and hopefully we will continue on the upward trend instead of down.... I have a few pictures from our visit today that I will post. Oh also since he was having a good day I left the hospital at 2 pm and laid out in the sun! (For those of you who think I spend too much time at the hospital) :)

Extubation # 2

So today started as an OK day Bryce was behaving, until right around 1pm he decided he didn't like his tube again and pulled the new one out...... Just like yesterday he changed colors and was pissed to say the least, it took a little while but they re-intubated him again for the second time in 12 hours..... This time was not as nerve racking for me because I had seen it happen once already... They tried to put it in his nose again because he seems to be happier that way but they couldn't do it so its back in his mouth. Then in rounds they decided to up his feeds by 1 ml every 12 hours and discontinue some of his other nutrients that he gets through IV's. They took out Bryce's arterial line, and when he had that in he had a board on his arm to keep it straight... WELL when they finally took the board off and the board had cut into to Bryce's arm so deep that they have to call in a plastic surgeon to decide if it needs to be stitched! I am not happy about this! It could get infected and I bet its what has been making him so uncomfortable for the past week.. Which I have been telling them! As soon as the board came off he was much better and more comfortable! Thats good at least but I feel bad he had to suffer all this time. Its bad enough with everything else thats the last thing he needed, but at least its better now. I didn't get to hold him today but hopefully tomorrow.

With the Good Comes the Bad

So today started off as a WONDERFUL day. Bryce was way down on his oxygen, still on the conventional vent and satting very good. (high 90's) I went to rounds, they didn't have much to say because he was doing pretty good. Valve so far is still closed. All was good. Then about 12:30 it was time for me to hold him again. It took a bit longer than usual to get him to me, all his wires and tubes were tangled and messy but after a bit we managed to get him on me. He was still doing well, he stayed with me for almost 3 hours, he had his lunch on me and everything (he even pooped) so obviously he was comfy he satted at 88-95% the whole time (I again was in heaven!) THEN it was time to put him back...... Well in the process of putting him back Bryce extubated (his breathing tube came out) Big trouble at that point.... His sats went down into the 50's (which is real bad) and of course he wasn't breathing and he was changing colors very fast....I had to run to find a doc while the nurse and respiratory bagged him until the doc got there, finally the doc came they had to reintubate him which is probably the scariest thing I have ever had to witness, it felt like it took forever to get the tube back in, and this time they out it in his mouth (it was in his nose) and he doesn't love that, but after a few minutes things settled. THEN all of a sudden Bryce started satting again in the 50's for no reason, well actually the tube was too far in...... So they had to pull it out some.... Bryce was not happy to say the least! Finally things settled down, I fed him and changed him and then he went to sleep, all that stuff is very exhausting for a baby (and his mother) but in the end he seemed to be much better once they got him intubated and settled..... HOLY CRAP what a day!

Could it Be????

Could it be?? Could we actually have had another OK day? 2 in a row?? I don't believe it! Well we did. Bryce was very well behaved today he is now back on the conventional vent and so far so good (knock on wood) His nurse today was Anne who is one of his primary's she's great to us! She let me hold him again it was awesome! This time he only lasted 1.5 hours, and he did desat 2 times but Anne said that he still did well, she said sometimes babies only last 30 minutes and then have to be put back. I of course was in heaven..... I might be able to hold him almost everyday as long as he stays on the conventional vent or better and is having a good day so keep your fingers crossed that he behaves because I NEED to hold him... He's just too cute, I can;t stand it. Other than that so far it seems like maybe his PDA has closed... BUT it can open right back up and as my luck goes.... so I am not fully convinced we're out of the woods on this one but I'm hoping and praying it stays shut! Otherwise Monday is another scary day, he has another head ultrasound, lets pray that his bleeds have not gotten bigger and that no new ones have shown up and also that the middle part of his brain is getting better not worse.... I'll keep everyone updated as I found things out!

Ask and You Shall receive.....

Well I was wondering when we were going to get a "good day" , well I guess you could say today wasn't a good day but it WAS a better day.....
So far today the docs haven't been able to hear Bryce's murmur(PDA), thats great news if it stays closed and he gets more stable.
He weighs 810 grams now 1lb. 13 oz. I believe... Everything is done in grams in the NICU so I am not 100% sure of the conversion to pounds. We had a visitor today from Pastor Cole, like always it was a pleasure seeing him. Today is the first day he has ever seen me standing up! (I've been in bed forever) Thats about all there is to report today, Bryce behaved himself so it was a pretty quiet day..... No pictures today because we didn't want to make him mad... He gets irritated by the flash and I don't know how to turn it off, and we didn't want him to start desatting from it... Maybe this weekend I can get some more.

When will another good day come???

So Its been a few days since I have updated and thats because we have been having a few not so great days. Bryce is still on the Hi Fi and on high settings. He had a pretty bad night last night, they had to change out his breathing tube because they thought maybe it was clogged and thats why he was not satting well, but that wasn't it..... He still desatted a few times after that. He had an OK day today but by the end of the day he started acting up again.... Hopefully though he will have a good night tonight. Good news today though Bryce and I both found out we DO NOT have MRSA which is very good! Some possible bad news too though, seems like if Bryce's PDA doesn't close by the end of the week we will be transferred to Boston Childrens Hospital to have the surgery.... I guess there is no Cardiac Surgeon on at Memorial until next Thursday and Bryce may not be able to wait that long. Please pray that it closes because I don't think I can handle going to Boston! Thanks again to everyone who has looked at this site and posted to it. It helps allot knowing everyone is there for us and I enjoy reading the comments! Keep'em coming! I will hopefully have some good news tomorrow!

The Honeymoon is Over

So as they say in the NICU the "Honeymoon" is over.... Bryce had yet another bad day today. They ended up putting him back on the Hi Fi Oscillator with VERY high settings which we didn't want to happen. Seems though that all of this is related to the PDA which is basically flooding his lungs with blood. Today is day 2 of the third course of Neoprofen (used to try to close the open valve) and it is still not working. The murmur is still very loud which probably means its still wide open. On a good note though he was sucking on his pacifier today during one of his gavage feedings which is good because it will teach him that when he sucks he ends up with a full belly... So when its finally bottle time he'll know what to do with it, or at least have an idea. He's just the cutest! I am on my way back to the hospital since he's having a bad day its harder not to be up there with him all day and night. This girls are staying at grama and grampa's house tonight so they will be well taken care of which helps me not to have to worry! Thanks to everyone who is praying for Bryce please keep it up as long as you can and as much as you can its all we have right now. Also keep posting comments here its nice to read after a long day in the hospital! Also I have posted a new picture of Bryce from today, hope everyone enjoys!

One of Those Days

So its day 15 of Bryce's life. We got the test results I was worried about and it seems they are not as good as I was hoping. Bryce's PDA (open valve) in his heart has not closed like we had hoped. They are going to try one more round of medication and if this doesn't work the he will have to have surgery and that could be as early as next Monday.... Also his head ultrasound was not great either. The bleed on the left side of his brain that he has had since birth IS starting to go away a little BUT now he has ANOTHER bleed on the right side of his brain which is not good. This is something they will continue to watch, so for right now they aren't doing anything about it but watching. He will have another scan done on Monday. I guess right now all we can do is pray. On a good note he did have a decent day, only 2 Desats not bad for a preemie, and his O2 level is still about the same which is good that it didn't have to go up. The same or down is good. Also because Bryce is behaving for the time being the docs haven't had to sedate him lately which is another good thing because babies can get addicted to that stuff, so we don;t want him sedated as much as possible. So for anyone who is willing all we ask is that you keep praying for him, it seems to be the only thing getting us through right now. Thanks!