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!
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Go Patriots!!!
Finally Football season!
Cute
Look at my muscles!
No Oxygen!
So who does he look like????
VAPO THERM!!!!! Yipee!!!
Look at me I'm on VapoTherm now! You can see my fat cheeks!
July 5, 2007
First day no oxygen...
Apnea study
On Monday 7/2/07We participated in an Apnea study for UMass Medical School, it is a study to try to prevent apnea in preemies.
Colee holding Bryce
Faythe Holding Bryce
We're home!
Fist time trying out the carseat before going home
Cute!
Daddy and Bryce
Finally I remembered to take a picture!
Sleeping...
Just to get an idea of how small Bryce is, that is my hand and its almost twice the size of him. This pic is from last week.
2lbs. 11.6oz.
Coming out for my first tubbie!
My first Tubbie
Anne (bryce's nurse) Putting him in the tubbie for the first time
The Mommy Massage!
Ahhh... This is the life!
Mmmm... Fingers!
Mohawk!!!!
Anne not only gave Bryce his first tubby, but she also gave him his first Mohawk!
I'm only the cutest baby EVER!
Mad??? What gave you that idea?
Peek-A-Boo
So in this game what comes after you put your hands over your eyes???
Bryce trying to pull out his breathing tube
Is this thing really NECESSARY??
Bryce holding onto a toy instead of his breathing tube and pulling it out!
Mom pretty sure you should have someone else take the picture and not try to do it yourself!
Just Me and My Mom!
May 8, 2007
Even on bad days I'm still so Cute!
Please NO MORE PICTURES!
Would you stop with the camera already!
Clean blankets, clean bum what more can a boy ask for??
Boy am I tired!
Changing my Bed
Mom gets to pick me up while my nurse changes my bed
Happy Birthday Mommy!
First time I ever got to hold Bryce
Best birthday gift a mom could have aked for.
6 comments:
It is great that he is still gaining weight. Too bad there isn't some way to get the vocational school involved with the volunteering. Bay Path has a Health Tech trade that goes to nursing homes and such. If you get a chance, give them a call and see if there are any Health Tech students that can come in to help. Just thought I'd let you know. Keep up the good work.
Sandie
Glad to see that things are going pretty good for Bryce!
I was wondering if you could email me. Ashton had a spell on Wednesday (its on my blog)and I have it on video. I was wondering if you would watch it to see if it is anything like the one Bryce had when he did.
destinyisforlife@hotmail.com
Hey Erika...oh, I'm glad to see Shannon commented, I was just about to ask you to email her to see the video.
As for Bryce, I'm with you girl. We have the same pulmonologist, and he is great, even if it is a SLOW process with the pulmonary hypertension dx. As for development, you know Edwin has delays, but I was wondering specifically your concern about his head control. How's he doing on his belly? We're doing the whole PT thing and if I can be of any help with ideas for exercising, let me know!
As for nursing, that's UNREAL. Bryce has the SAME dx as Edwin and we get nursing for him AND Serena, who is "healthier" than our boys! Go figure. I hope Dr. K clears this up for you and help comes soon!!!!
Hi Erika,
I was thinking about you today and thought I'd check in and see how things were going. It sounds like you are VERY busy with appointments and follow up. I can't believe you don't have any home health care assistance - that is a shame. I'd keep fighting for it - it certainly sounds like you are a prime candidate. The first winter is very tough - try to keep a positive attitude - it gets easier - it really does. I just wanted to let you know you are in my thoughts and I'm here if you ever need someone to talk to. Please feel free to call or email me 508-732-8925 or 774-454-3046 or lauriemoore13@verizon.net.
Laurie
bryce is a gorgeous baby and he looks just like his father,
hope all is well for all of you
he appears to have grown so much from the pics in the hospital to the pics at home..
just remember if you need any supplies let me know and i can get them for you.. its no trouble, we really don't live too far from you all...
you are doing the best you can and that is all bryce needs, along with your love
jason, barb, tyler
I just saw your comment on my blog. I'm in Illinois, and we are big loser when it comes to helping families in need. In Massachussets, though, you should qualify for Medicaid. Any baby born under 1200 gm automatically qualifies. Stephanie (Serena and Edwin's mommy knows about this.) Have you asked her about this at all? I wish I could be of more help.
Good luck to your little cutie!
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