NOAH ALEXANDER
On this page is Noah's Pregnancy Milestones. NICU Updates .... His weights through his first year. And Milestones after coming home for a few years ....
Pregnancy Milestones 2001-2002
July 6 - PREGNANT - blood test positive at DRs
July 9 - Positive Home Pregnancy Test at home...Mom's still in disbelief
July 17 - FIRST ultrasound - saw sac but nothing else
July 26 - 2nd Ultrasound - SAW BABY & HEARD HEARTBEAT!! Heartbeat was 107
August 15 - First Appt (with RN) History and tests done
September 7 - Appt with DR B cause I haven't been feeling well - tried to hear the heartbeat with the Doppler - but couldn't find it :(
September 12 - First "OB" appt - Heartbeat was caught from the outside!! Rate at 158
September 27 - AFP test
October - feeling "Light" kicks :)
October 9 - Dr Appt - AFP came back positive for both Downs Syndrome AND Spina Bifida - Heartbeat 142 ... the results left me scratching my head since one tests in the "high" area and the other in the "low" area... (The Results were ABNORMAL ... 1 in 165 chance that the baby has Down's Syndrome and a 1 in 98 chance that Spina Bifida)
October 11 - First HARD kick!!
October16 - 4th Ultrasound - Heartbeat 156
October 19 – Amnio, 5th quick Ultrasound Scan
October 30 - YOU'RE A BOY!! You have a rare genetic disorder called Mosiac Trisomy 16...Never forget - day changed my life forever. I sat in that room and heard him start talking - there are complications ... rare genetic disorder .... trisomy 16 mosiac .... BY THE WAY ... IT'S A BOY. The only thing I heard, it's a boy!... His name: NOAH ALEXANDER ... wanted him to have a strong name.
November 2 - Marshfield Clinic - Level II Ultrasound (5th) and Appt with Genetics Dept... ... They told me he wouldn't live, period. Suggested that I "interrupt" my pregnancy. When I told him no, even went as far as arguing with me about it. They said .... "HE WILL DIE IN UTERO, IF BY SOME MIRACLE HE DOESN'T HE WILL DIE SHORTLY AFTER BIRTH, AND IF BY SOME HUGE MIRACLE YOU GET TO TAKE HIM HOME - HE WILL BE SO MENTALLY AND PHYSICALLY DELAYED IT WOULDN'T BE WORTH IT."
November 6 - DR Appt - Heartbeat 150's - nice and strong as always :)
November 9 - 13 - NO MOVEMENT!!!!!! (little to no)
November 13 - Went into DR - Heartbeat 151 - baby is fine!! started moving again that night, lil stinker
November 17 - FIRST CONTRACTION/BRAXTON HICK - noticeable anyway..
November 20 - FIRST Kick felt by MOM on the Outside!! Daddy & Calahan still haven't felt though...
December 3 - Daddy FELT YOU KICK!!!!!!!
December 4 - DR Appt - Heartbeat 160's, you KICKED it while the DR was listening - Measured 25 cm (am 25 weeks)
December 7 – 6th Ultrasound, estimated weight 15oz, Heartrate at 167 (ultrasound results: fluid on the low end of normal, small placenta, asymmetrical IUGR – nutrients going to head, then organs, then arms & legs)
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| December 7, 2001 - Noah's back with the umbilical cord resting on his (upper) side... looking over his shoulder. |
December 15 – Mommy SAW you move today! Could actually see her belly moving with your movements
December 16 – First contractions that hurt, came one right after the other – first trip to L&D. Not happy having straps on your home. Mom put on Bedrest/Limited Activities for the rest of the pregnancy.
December 19 – DRs Appt – heartrate of 150’s, 27 weeks and measured 27 cm
January 8 – Calahan’s SIBLINGS Class with “Baby Doll Noah” and also our first CHILDBIRTH Class
January 11 - DRs appt – 30 weeks, measuring 29 ½ cm, heartrate in 150’s – Noah is Transverse
January 15 – 2nd CHILDBIRTH Class
January 16 – BREASTFEEDING Class
January 18 - 7th Ultrasound – heartrate at 150, estimated weight 1lb 12oz – fluid is now normal!! Noah is now completely BREECH
January 21 –– Gluclose Tolerance Test – way late – but passed ---- DRs Appt – BP 140/86, 32 weeks pregnant, measured 29cm, Noah’s heartrate in 150’s…..first NST passed with flying colors in a half hour (NST commonly take 15 minutes to one hour) checked BP at end of appt was 145/91
January 22 – Received HOPE in the mail (TY Beanie Baby from Trisomy 16 Foundation)--- 3rd CHILDBIRTH Class – Instructor commented that 1 out of 6 of us would end up with a c-section, and to look around and try and figured out who would it be. I raised my hand and said it would probably be me.
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| Last picture taken of me pregnant, January 2002 |
January 29 – Full Moon – 3rd NST – BP 150’s/100’s L Protein in the urine - Contractions every 2 minutes – Noah has SEVERAL heart decelerations - DR is admitting me, gives me 1st steroid shot to mature Noah’s lungs in the office – can’t get the baby's Dad, so I call him. Admitted in the hospital, start 24 hr urine test, fetal monitor 2nd steroid shot given at hospital. Officially stuck in the HOSPITAL! 8th Ultrasound.
January 30 – Hospitalization – Noah had many heart decelerations and Mom’s BP didn’t get better through the night. 3rd steroid shot given in AM. Officially Pre-eclampsic- Not going home until after Noah’s born
January 31 – Hospitalization – 4 AM Noah’s heart decelerations are worse, they have my put on the O2 mask for 2 hours and put in an IV. 1 PM- Dr. comes in to do amino to check Noah’s lung maturity. 9th Ultrasound during Amino. Noah thought the needle was a toy and tried to play with it. Fluid came out a pale yellow. Instead of waiting the normal hour and a half for the results, we had to wait 10 hours. Found out Noah’s lungs were almost mature and there was biliruben in the fluid.
February 1 – Hospitalization – DR came in AM and told us he was no longer giving us the the choice of staying or going to better hospital 2 hours away – he was sending us. Transferred to Marshfield’s St. Joseph’s Hospital. 10th ultrasound was given, baby’s weight estimated to be 2lbs. Blood tests taken. DRs discussed, and came back with the news……. Emergency C-Section, NOW. (The Placenta was failing)
Noah Alexander was born February 1st 2002 at 3:45 PM
1 lb 12.2 oz ~ 13 ¾ inches ~ 26 cm Head Circumference
APGAR 4 @ 1min ~ 8 @ 5 min
| February 2, 2002 |
(Mom) Hypertension... Pre-Eclampsia ... Limited Activity to complete Bedrest, (Delivered via emergency c-section)
Complications at Birth: Low Micro-Preemie Birth Weight, On Vent for 40 hours, Brachycephaly craniosynostosis, enlarged right kidney, ASD & VSD (3 holes in his heart all together), eye pupils shaped like footballs, Hypospadious, Natural Circumcision, Hyperbilirubinemia, he had both Apnea and Bradycardia (Brady’s he had, Apnea he didn’t start until a few weeks before his due date)... Brain scan at one point showed some fluid on his brain that was later declared a "variation of normal", umbilical & double groin hernias ...
Friday - Feb 1st
Noah Alexander - born 2-1-02 at 3:45pm. 1lb 12.2oz (that .2 is a BIG deal with micropreemies - which he is by size, but not by date) 13 3/4 inches long.
He has small holes in his heart - 3 of them. His heart murmur is being recorded as "loud"... :( His aorta looks "thick" and "stiff" functioning - this COULD look like this just because of his size. Hypospadius, the foreskin on his penis didn't completely grow - he has a natural circumsision - and the urethra is on the underside instead of on the tip - this can be corrected down the road with no problem. ** All of these things could happen to a "normal" preemie, or even a full-term baby! Nothing is concerning yet - and they are just going to keep an eye on things.**
He's on the Ventilator at 30 assisted breaths per minute when Keith, Mom, Grandma & Calahan went to see him at 7pm. He's on 20 ABPM when Mommy sees him at 9pm. Whooohooo!!!
Before we all saw him - everyone was commenting on HOW CUTE he is - everyone would walk into the room and say it... you gotta start believe it when you hear it so much. LOL.
He has an umbilical cord catheter (where they put an IV line in the blood vessel in his cord.) And has a tube in his nose for oxygen. Being less then 2lbs out 33 weeks is very concerning. His heartrate & blood pressure look good for being 7 weeks early. He has to lose his waterweight before he can gain. Noah will have to show what's going to happen...
A piece of his cord blood, and placenta were sent off for genetic testing.... results should be back in 5 to 10 days.
Saturday - Feb 2nd
Ventilator at 15 abpm in the AM............. at 20 in the PM............. on a mode setting overnight that lets him completely breath on his own (for 8 to 12 hours) if he does well... the vent can be taken off!
LOW BLOOD SUGAR in the PM
Pooped his his diaper!!
Daddy got to hold him - he picked him up when his bad was being changed... he only lifted him up in his bed.
Mom got her cathater & IV pulled out - FINALLY!! Almost fainted when she got up in the morning for the first time (after being in bed for 5 days!)
Lots of visitors came!! FireAnt being one of them :) (FireAnt is one of Noah's Godmothers!)
Nana's BIRTHDAY!! & Mom & Dad's been together for SEVEN YEARS TODAY!!!
Sunday - Feb 3ed
AM - OFF THE VENTILATOR!!!!!!!! We got to hold him and hear him cry for the FIRST TIMES!!!!
Blood sugar was a little better - but still jumped around a lot during the day :( His poor little heels are getting bruised :(
He weighs 1lb 13.7 oz!!! BUT he still needs to lose the water weight.
Mommy changed his diaper.
Mom & Nana held him in the PM.
Daddy & "FireAnt" were up in the morning....
Monday - Feb 4th
1lb 11.2 oz - he can start gaining now!!
:)
Mom picked him up - flipped him from
his belly to back.
Blood sugar FINALLY better - seems
to be under control (had to add more gluclose to his IV fluids)..
Under BiliRuben lights & Bili
Blanket :( He's a little jandice :(
SELF pulled out his nasal tube!!! -
Mom discovered and just started laughing!! Told Brandi (one of his nurses) and
she commented "That's why you were crying and crying and then all of a
sudden stopped... got your way did you?" They didn't put it back in -
because obviously he didn't need it!
Mom watched the Kangaroo Care video
and Breastfeeding your Preemie Video... Kangaroo Care is a wonderful thing you
can do - you hold baby skin to skin (baby's naked except for a diaper, laying
on your bare chest - with blankets on the top of you both. You are skin to
skin. Studies show it helps babies - especially preemies - with a lot of
things. - Look it up on the web if you'd like to know more.)
Mom got her belly drain pulled out -
OUCH!!!
Tuesday - Feb 5th
Mom released from the hospital -
went home for a few hours...
1lb 11.2 oz ... still
Bili blanket still - off the
overhead lights...
Kangaroo Cared him for ONE HOUR!!!!
They were only going to let me do it for 15 minutes - but he did so good they
let me do it for an hour!!
Feeding 1cc of breastmilk every 6
hours.. (there are 30cc's in 1 ounce!)
Mom & Nana got to kiss you!
Wednesday - Feb 6th
1lb 12.0oz ... moving on up...
Feeding 1 cc every 4 hours
Bili level down to 4 - no more
blanket!!
Kangaroo Cared him for an hour -
didn't do so well :( He acted uncomfortable - after the hour she checked his
tummy and found out 3/4th of his last meal was still in there - no WONDER he
wasn't comfortable :(
Wore clothes for the FIRST TIME!!
One of the shirts Nana made him...
Thursday - Feb 7th
1lb 12.3oz
Feeding 1 cc every 2 hours - IV set
at 4.5
Bili up to 5 - wait and see what
tomorrow is...
DADDY CAME UP!!!
4 Bradycardias :( (where his
heartrate goes down)
Mom changed 2 diapers - got to do
umbilical cord care!
Friday - Feb 8th
ONE WEEK OLD TODAY!!!!!
1lb 12.2 oz
2cc's every 2 hour feedings - IV at
4.0
Bili up to 8 - back on the blanket
:(
3 Bradycardia's... one didn't
"count"
10am feeding - ate 2cc's out of a
NIPPLE!! :)
Noon feeding - FIRST BOTTLE!! Mommy
has :)
Daddy got to hold him - he smiled at
Mom & Dad! He smiled the day after he were born even!!
Has Mommy wrapped around his little
finger!! Everytime he knows Mommy is sitting next to him - and she doesn't have
her hands on him - he CRIES until she does!!
First time wearing a "Baby
Bag" - baby gown
NEW ROOM - moved at 2pm, we're next
to Devin again!!
Kangaroo Cared for 1 hour - DID
GREAT!!! Had 1 Brady when he sneezed - that didn't count either. He has Mommy's
sneezes - sneezes 3 or more times in a row!!
Saturday - Feb 9th
1lb 13.1oz ... IV at 3.5
3 cc's every 2 hours!!
Bili down to 5 - but keeping the
blanket until Monday when the bili will be re-checked...
Wearing a baby bag from Home :)
Given suppository - hasn't pooped in
5 days :( BIG blow out later - Brandi had to do a complete bed change!!
Pretty sleepy day...
Auntie Kelly (other Godmother) got
to hear him cry over the phone - ment the world to her!!
Kangarooed for an hour and 15 miutes
- Bradycardia after he fell asleep when he got comfortable and started
breathing quickly...
Calahan VISITED!!! He came with Nana
- he got to TOUCH and HOLD Noah for the first time!!!
Sunday - Feb 10th
1lb 13.2oz - IV at 3.0
No more nasal feeding tube!!
Dad & Mom got to hold you... Mom
went home for the afternoon...
Daddy & Mommy came back around
10:30pm - went up to see him - he was WIDE awake - so we held him for awhile.
Daddy loves it when he's awake and alert like that! Daddy gave Noah a bottle
for the first time (Daddy's first time - not Noah's)
Didn't Kangaroo him :( Daddy had the
choice of Kangarooing or holding - and he decided to hold him.
Monday - Feb 11th
1lb 14.0oz ... IV down to 2.0
5 cc's every hour
Bili at 2.8
Had a fussy day :(
Bottle fed all day - did spit up
once
Mommy decided not to Kangaroo since
he had such a rough day...
Mom got staples out - STUNG BADLY!!!
Ann put sterile strips on (like tape) said they would stay on for 2 weeks and I
could shower with them on..
First BURPS heard by Mom!!
Had Brandi put NG (nasal feeding
tube) back in - he was getting woken up every 2 hours - and he wasn't getting
much sleep!! :(
Mom left early - didn't Kangaroo :(
Tuesday - Feb 12th
1lb 14.4oz ... 14 inches long ...
head circ. 26.5
Still at 5cc's every 2 hours - IV
still at 2.0
Mom's first time holding you during
a feeding!!
Bottle feeding - did GOOD!!!
Bili at 4.2
1 Bradycardia :(
Auntie Cat heard you cry over the
phone!!!
No Kangarooing - Mom went back to
the RMH too early :(
Wednesday - Feb 13th
1lb 15oz ... IV at 2.0
Bili at 5.3
6cc's of milk every 2 hours
Grandma Jeannie came up to visit -
she got to hold you for the first time - for an hour.
Mom held during a feeding again!!
Didn't Kangaroo because you were
already handled so much :(
 |
| He was playing with his lead wires with his toes |
Thursday - February 14th....
HAPPY VALENTINE'S DAY!!!!!!!!!!!!
Mom had told him the day before that
all I really wanted was for him to be 2lbs ... thinking how unrealistic that
was - he'd have to gain a whole ounce!!.... but he TRIED REAL HARD...... he
weighted in at a whopping 1lb 15.9oz!!! If he had a full bladder he probobly
would have been 2lbs!! And I'm sure he hit 2lbs at some point during the day!!
:)
His bili was at 5.6 :( They will
check it again Saturday morning (before Mom leaves for her baby shower) and see
what it is then...
Mom got to hold you for an hour -
then later Kangarooed for almost an hour... you did GREAT again!! :)
Tried bigger diapers - but still too
big!!
February 15th - Friday
2lb 0.8 ounces.......... TWO WEEKS
OLD & HIT 2 POUNDS!
8cc's every 2 hours - IV at 2.0
Starting Epogen (shot) - .1 ml on
Monday, Wednesday, & Friday
Starting Iron (oral) - twice a day
(noon and midnight)
No more lipids (Fat pumped through
IV)
Mom changed his clothes this morning
and found of of Noah's leads (his cords) on his PJ's instead of his skin...
gee, no wonder his alarms were going off all the time!
Changed his NG (nasal feeding) tube
Daddy Kangarooed Noah for the FIRST
TIME!! Then he gave him a bottle and Mom held him for a few minutes.
Noah didn't want to go to sleep cuz
he know Mom & Dad would leave then...
Think early next week will be on
full feeds and off the IV....
February 16th - Saturday
2lbs 1.2oz
9 cc's every 2 hours - still at 2.0
on IV
Bili at 7.0 - back on the blanket :(
Mom & Dad went home for the baby
shower (write about that in another entry)
Called when we got back to
Marshfield, nurse said he'd been good boy... we just missed him ..
February 17th - Sunday
2lbs 1.8oz
10cc's every 2 hours - IV still at
2.0
Bili was 5.3 - continue the blanket
until tomorrow
Auntie Julie came up - got to hold
and feed him...
Daddy changed Noah's DIAPER for the
FIRST TIME!!!!
February 18th - Monday
Mom is getting sick :( Nana &
Calahan come up to visit - Mom decides to go home so that she doesn't get
anyone sick :( Missing Noah BADLY :(
2lbs 3.4oz
12cc's every 2 hours!! - he's OFF
the IV!!!!
Bili was 4.0 - no more blanket (for
now)
Mom called - was told he was being a
good boy... had a bad poopy diaper that the nurse was hoping Mom would come in
and change.. (ha ha) ... all the way down his legs and everything - needed new
bedding change... heehee...
February 19th - Tuesday
Mom missing him bad :( Called a few
times...
2lbs 2.8oz
13 1/2 inches long (YEAH RIGHT!! not
when he was 13 3/4 at birth and 14 inches a week and a half later...)
Now on Human Milk Fortifier (added
vitamins, minerals, protein, salt - and other stuff he needs) to the breastmilk
that Mom pumps.
Other than that - he's doing super
good :) :::knock on wood:::
As for changes.... he's now on 12cc's of breastmilk a day!! (He was upped from 10cc's to 12 yesterday morning!) They took him OFF his IV!!! He's on full feeds ... they are suppose to be adding some powdered fortifer to his milk today, to make up for those vitimins and stuff he's losing by not having the IV. His Bili is better again - he just came off the light yesterday - so we'll see how that goes, but I won't be shocked if he does end up on the bili blanket again. ... just talked to the DR... he says nothing has really changed, He's starting the Human Milk Fortifier - it adds vitaimns, minerals, protein, salt and other stuff he needs today... and if he handles what they give him today, well, they will increase it to full tomorrow and he'll be getting everything he really needs then. Otherwise everything is doing good - I keep forgetting about asking about his bili level.... so, I'll have to get that next time I call.
I have to tell you all a funny story from my shower... then I'll shut up........... my babyshower was this past weekend.... and we had this one game, where you guess how many jellybeans are in a bottle - well, I'm using playtex ones, so it's a little tougher to guess. (heehee) So I told Keith to guess first, he guessed 134, and he thought he was HIGH.... and I sat and thought and thought... and finally wrote down my answer... 212. So, Julie, my friend who threw me the shower, came down to check my answer... and she kinda shook her head at me... LOL. Then she goes upstairs and yells "We have a WINNER".... and I'm going huh? So I go upstairs... and my Mom is saying that there were 212 in there, right on. I just could have died laughing!!! Why did I guess 212? Well, I'm psychic of course!!! Those who know me, know I do strange things like that!!! Kinda like the whole "I have to pack my bags" the week of the 20th, "Cuz there is a full moon on Monday and if I don't get them packed, something is going to happen!" And sure enough, they were half packed and that's when all the trouble started!! So, why did I really guess 212?? Because - it was in honor of Noah!! His birthday was 2-1-02... get it? 212? :)
Another
Update
|
Friday, February 22, 2002
|
I don't have all his stats infront
of me right now... but he's been doing very well :) ::knock on wood::
This morning he's 2lbs 4.4oz :)
He's up to 22oz every 3 hours ...
he's such a piggy! He's doing really well on his feedings, especially if Mommy
is holding him and feeding him - he's less likely to spit up and I can usually
get him to burp really well.
We got his genetic results back yesterday.
They kinda freak me out a little.... I just don't know what they mean.... it
came back that 100% of the cells in his placenta had the extra chromosome ...
but NONE of the cells in the umbilical cord blood had it. Strange... I know. I
don't know what it means... and frankly I don't think the genetic counsler did
either. The next step is doing a skin sample one... and see what that says. BUT
we won't do that for a little while.
The other thing that we got to do
was some non-nutritive sucking - meaning he gets to nurse on an empty breast so
that he can get use to it. We get to do that twice a day - but I only got to do
it once yesterday - and will only get to do it once today...after I go back.
Right now I'm at home - Keith came
down last night - we came back this morning so he could go to work - and we'll
be going back after he's done with work, for the weekend. And I'm staying and
he's coming home on Sunday.
Soooooooooooooo... that's what's
going on :) {{HUGS}}
Sunday
Update
|
Sunday, February 24, 2002
|
Noah is weighing 2lb 5.8oz!!
Whoooooohoooooo!! He's starting to fill out, you can see it. When I was home
for those few days, I came back, and could tell that he was bigger - his hands
looked bigger....
Anyway - we've started Non-nutritive
sucking (breastfeeding on an empty breast) .. up to twice a day. We've done it
a total of 4 times now, and he's done really well. The first time he did more
then what she thought he would. The second time he latched on for about 10
seconds... the third time he was basically on the whole time! :) I think he
actually got stuff too, because I wasn't empty ... shhhhhhhhhh!! This last time
(this morning) he was trying to poop at the same time. So it just didn't really
work, although he did latch on a few few seconds here and there.
Um......... whatelse to tell... lets
see.. He's ADORABLE!! Heehee.. anyway - he's doing really well. As the DR said
on Thursday - we're just basically hanging out until he gets some fat on his
body...
The funny thing about Thursday - he
was 2lbs and some odd ounces... I had looked at his little index card thing
with all his stats on it - and it said 3lbs and something... he had gained a
WHOLE POUND!!! Haha.. I knew it was wrong. So I mentioned it to the nurse. LOL.
But the DR had seen it the same time I did - and he said "Boy, he's REALLY
packing it on isn't he?" LOL..
We MIGHT be able to go home next
week (when I say, "Go home" I mean to the NICU at the hospital at
home.) Dr. H. told me to bring it up agian to him Monday (because I had brought
it up this past Monday and he had said his thing and then "We'll talk
about it next week" but he was going to look into some of the insurance
issues for me....) So I had brought it up Thursday and he said that the
Discharge meetings were Wednesday nights and he had forgotten - so to bring it
up again to him on Monday... well, it's funny cuz his DRs take
"turns" and his is ending as of this past Friday - so either he'll
have Dr. Denny again, or Dr. O... but probobly not DR. H... so I told the nurse
the other day that I was gonna go HUNT Dr. H down and remind him, cuz I was
suppose to bring it up to HIM agian. LOL....
Anyway - that's about all going on
right now... {{HUGS TO ALL}}
New
Update...
|
Tuesday, March 12, 2002
|
Sorry it's
been so long everyone... here are the new updates I typed up yesterday and
today...
Subj: Hello
Date: Mon, 11 Mar 2002 12:19:07 PM
Eastern Standard Time
I'm sure Mom wrote you an update...
:) At least a short and sweet one right? :) Anyway - I just wanted to let you
know that Noah's pictures are updated on his album :) I can't SEE them and I
don't have the dates - but they should be in order and I'll add stuff to them
once I can see them and have the dates to them. But they are there and updated...
As for Noah .. Mom's told you, I'm
sure, that he's 3lbs 3oz. He gained 1.2oz last night. I Kangarooed him for
almost 2 hours last night :) It was nice. He's been having more Bradys... well,
not MORE but ones that are scarier for me. The DRs don't seem any more
concerned about it. His head measured 30cm yesterday (was 30 1/2 2 days before,
and 29 1/2 2 days before that.) So, I'm hoping maybe that's a good sign that
some of that fluid went down? Maybe? Not too much else going on... I'm seeing a
lot of babies coming back, that have been in our room. That scares me too.
Their coming back with RSV or the flu or something. One baby I know of - this
is his FOURTH admit into the NICU!! :( He was released for the first time while
Noah was here, then he was back for a few days, then back again for about a
week, and now he's back again and has RSV. And I'm not sure if I told you - but remember me talking about baby
Cheyanne? The one they were going to take off the vents. She had horrible lungs
and for some reason she couldn't keep her platlet count up... well, she died
last Wednesday - the same day we found out about Noah and Devin having fluid on
their brains. So, it just wasn't a good day at all.
That's the 3ed baby I know of that's
died while I've been here, a few others have come close. I gotta say, I Thank
God everyday that Noah is doing well, and pray it'll continue. As for anything
else... we don't know about any transfer... or much of anything else right now.
But I thought I'd pass that stuff along :) {{{{{{{HUGS}}}}}}
Subj: Another Noah Update
Date: Mon, 11 Mar 2002 4:04:58 PM
Eastern Standard Time
They upped his feeding to 75cc's per
shift ... so 2 1/2 ounces. They said that they did this because he's suppose to
be eatting so much per kilo.... um...ok. He was barely making 65cc's per shift
sometimes. I just think it sucks... but I talked to him about the NG tube
too... and how I think he nipples better without it. But I'd rather have it in
for him if he needs it then taking it in and out. The other news is, they are
doing his skin biopsy tomorrow ... :( They are going to take a little section
of skin about 3mm and he may need one stitch. They will numb the area and stuff
- and I will be there for it. It'll take 2 to 3 weeks to get the results back.
She said if it shows that the MT16 is there - it just confirms the diagnosis...
and if it's not.. he's a little more of a mystery. So, we'll ee.............
{{HUGS}}
Subj: Re: Noah Update ~ 3/12
Date: Tue, 12 Mar 2002 4:25:32 PM
Eastern Standard Time
Mom's update .. LOL (Since you got
the IM from Nana)... anyway - he's 3lbs 4oz, gained a whole ounce :) He came
through the skin biopsy without a whimper like Mom said. I stayed in there for
the whole thing - I keep tearing up - but just cuz I didn't want him hurting.
They put some sugar water stuff on his paci and he sucked on that, I guess it
been shown to help ease the pain process in some way. The Sugar Water and the
Paci. But when they went to numb his arm he whimpered a little, and then CHOMP
CHOMP CHOMP CHOMP on the paci. But he didn't cry. He did REALLY good. One of
his regular nurses kept saying before hand "Are you sure you want to stay
for this?" No, I'm not sure, but I'm staying. I never did answer her. LOL.
And after she stopped and LOOKED at me... said "Are you ok?" LOL... I
donno why, I wasn't crying or anything. I did have my hands on him the whole
time. We should get the results of that in about 2 to 3 weeks, he might be home
by then. He also had a full body X-ray... the genetics people wanted it I guess.
(Both his tests today were from his MT16) Anyway - they woke him up half way
through his sleeping time - and that sorta pissed me off... cuz then he didn't
eat well. And I asked them to pull out the NG tube yesterday to give him a
break, since it needed to be changed anyway. And she did, and it's been out since, so I thought
for sure they'd have to stick it back in just because they decided to come up
at THAT time to do it. It was bad enough he had to wait for his feeding for 45
minutes because he was having the skin biopsy and we were sitting
there waiting for them. But she didn't put the tube down, she did NG him, but
she did it in the mouth so that she could just put it in and take it out so
that he could keep trying. But if he needs it agian, they'll put his NG tube
back in. As for the breast milk...... I'm out as of next feeding. That didn't
last long at all. So, he's on formula as of tonight, at his 10-11pm feeding.
He's been awake more lately.. between feedings. Hard to believe I'd be 38 weeks
pregnant right now. I sometimes wonder - If I had lasted this long, pregnant,
if he would have grown at all in those 5 weeks... or if he would have still
been born 1lb something... Anyway ... I'm sure he's doing so much better out
then he would have in. Anyway - that's about it I guess. Gonna go put the rest
of the pictures in the album so everyone can see. It's WWW.PICTURETRAIL.COM and
it's album name: NissaRae .. and it's album "Noah's NICU
pictures"
{{{{{{{{HUGS TO ALL}}}}}}}
Noah's
fluid on his brain
|
Wednesday, March 13, 2002
|
Sorry everyone... I posted this in
my diary - but I guess it didn't take...
We're in need of PRAYERS!!! Please -
if you have the chance - add us to your prayer lists!!!
I've told you all Noah's birth story
- but just to remind you - he was born 7 weeks early (at 33 weeks gest.) and he
weighted 1lb 12.2oz.... he was so small because the placenta wasn't working
correctly... mainly because it was full of his genetic disorder, Mosiac Trisomy
16. Noah is completely normal, very healthy and an awesome little boy! He's
been amazing the DRs!! But we know anything could happen with him...
The baby next to us, another
micro-preemie. Born at 23 weeks and doing WONDERFULLY for the gest. he was
born. Turned out I went to school with Devin's Daddy, and his Mom and I have
become VERY good friends!!!
Well, both Sarah (Devin's Mom) and I
got bad news this morning.......... BOTH boys have fluid on their brains.
Devin's is worse then Noah's... but somehow it happened!! WE REALLY NEED SOME
PRAYERS!!!! Noah is going to have a head CT with in the next few days.... and
we'll know more then... but Devin can't because he's still on the vent!! So,
we'll know more soon, but Devin's family won't! Please pray for strength for
them, and us, but more for them - and healing for the babies!!
Anyway - I got the results saying
it's more "normal" then not... there is just more fluid on that area
then there should be. That they are going to watch it, and that's about it....
I'm not really sure what to think at this point...
Noah is HOME!!!!!!!!!!!!!!!!!
|
Wednesday,
March 20, 2002
|
wrote this Tuesday Morning
Good Morning Everyone! :)
Yesterday was a very eventful day
for us. I woke up early in the morning because one of our favorite nurses,
Jill, was there. I wanted to get there to see her - just incase we didn't get
to see her again until we "come back." Anyway - it was 6am and I
snuck up behind her and basically scared her. LOL. I told her I had to come see
her! LOL... Anyway - then one of our other favorite nurses came in, Linda, and
took care of Noah in the morning. We started doing all the stuff we needed to
go home this morning. She wasn't sure if the DR would let us or not - but when
he came in, he asked if we wanted to room in (an almost sure sign you are going
home the next day!) So, anyway, after getting everything done, we went off to
the rooming in room - which wasn't the wonderful rooming in room we had been in
the day before - someone else ended up getting that room because their baby was
on a monitor still - and so we ended up in a tiny hospital room, with one bed -
that would barely fit a bassinet with it..... I was a little mad. We walked
back into the NICU and told Linda "I don't want to room in anymore"
and after she asked us why, I told her about the room. So, they were going to
try and change it.... but in the meantime Linda was saying how if we just
wanted to go home, she could ask the DR. So, we finally said ok .. even though
we weren't sure we could. But we ended up going down to the room (the oppisite
corner from the NICU) and gave him his bottle - he took a whooping 2 ounces!
And then Linda knocked on the door and came in, and said "Dr. Opitz was
just in, he said "Where's Noah? Did he leave already?" And I looked
funny at him, and said "No, their rooming in." To which he replied
"Well, if they want to go home they can." So, you can go home if you
want to." We were in shock......... time to take Noah home?!?! WOW!!!
Brandi had come in - one of the favorite nurses - the one that he poops for, A
LOT! - and her last day is today. So, she got to fill out all of his stuff.
Probobly the last time she will do that. So, it was really nice :)
We went over to finish up at the
Ronald McDonald House - cleaning our room and checking out... while we were
waiting for Noah's formula and carseat. And as we were walking out - Linda was
rushing back in (trying to get back before we left) and she had a little gift
for Noah from her and Jill - a teddy bear, and an outfit!! I just about
cried!!!!! Actually I did when I was looking at it. We got everything all
packed, and just had to get Noah and the rest of the stuff from the nursery! I
called Mom and Cal - and talked to them - didn't say a word about us going
home.
So, we got back - Noah was waiting
for us.. lol. And we got ready to go - Brandi snapped a picture for the board,
a picture for us - then she said "Wait, I want a picture too" ....
::sniff:: ... and then we were off. We had to stop at the RMH first and get our
picture snapped there too.
Noah was awake the WHOLE way home -
We ended up stopped a half hour from home so that we could change and feed
Noah. Although - I'm so out of practice of having a baby - I had to dig in
several bags to get what we needed! Then we get back in the truck, and he
finally falls asleep. Then we got home - and Mom thought we were just a car
turning around in the driveway.. LOL!! Then we walked in the door and surprised
her! :)
Last night was interesting!! He did
NOT want to sleep in his bassinet - the only place he'd even remotely sleep was
in someones arms. We refer to this as the "Calahan syndrome" because
when we brought Cal home, he would NOT sleep in his cradle. He would be
completely asleep - and we'd lay him in there - POOF! AWAKE! That's how I felt
with Noah last night.
But he's awake now - and waiting for
me to finish feeding him. {{HUGS}} to all!!!
New news :)
So, it's Wednesday - and we got home
7:30 Monday night. He didn't do so good Monday night.... did MUCH better
Tuesday night but he had decided that from about 3am to 4am it was AWAKE time!!
::sigh:: But we did very good :) ..... he actually slept in his bassinet for
awhile a few times last night.
Today was a - sorta - rough day. Had
to take Noah to the DR today because he hasn't pooped since we brought him home
and it was worrying me a little. Plus he sounds so congested - but he was congested
before we left the NICU. Anyway ... after a long wait and a long check of him,
we found out that is sounds like a few of the holes in his heart have healed
up.... and he wants me to add a half a teaspoon of prune juice to his bottle
once a day to help with is pooping ---it's probobly happening because he was
just switched from Enfamil 24 calorie Preemie formula... to Similac 22 calorie
NeoSure...when they switched him from the breastmilk (when they ran out after I
dried up) to the Enfamil on the 12th, he did this... --- and for his congestion
I'm putting drops in his nose to help loosen it up - his lungs sound really
good, just his nose is stuffy....
Other then that ... he's doing
pretty well!! I had gotten him a Noah's Ark Bouncy (Vibrating) Seat... and it
plays music too ... I finally got some batteries in it tonight .. and it plays
my FAVORITE classical song, Fur Elise!!! I was soooooooo happy!! :)
He was also 3lbs 12oz!!!!!!!!!!
WHOOOHOO!!! He was 3lbs 10oz Monday morning...
Noah Update 4-8-02
|
Monday,
April 08, 2002
|
Hi Everyone!! Hope this finds
everyone well :)
Noah is doing good, currently! For
those of you who don't know (but I think you all do) Noah ended up back in the
NICU for 5 days, from March 27th to April 1st. He came home weighing 4lbs 4.4oz
on April 1st. LOL. Some sort of 4th's month thing going on there? We went to Marshfield
on the 27th for various appointments. EARS - he didn't pass on either ear
(remember he had been passing on the right side no problem.) The Audiologist
thought that it was possible he had some fluid behind his ears or something
that was interferring. EYES - looked really good! One of his pupils is egg
shaped instead of round - but the DR said that was probobly because the muscles
in the left eye weren't fully developed and that it would, hopefully, fix
itself and he wouldn't effect his vision. SURGERY CONSULT - he'll be getting
his hernia fixed at some point in July (probobly) when he won't have to stay
overnight because of the medication. He'll also be seeing the urologist for his
hypospadious at that time. So we can discuss when to fix that. DR's APPOINTMENT
- we brought up the fact that the cough Noah had developed IN the NICU had
gotten worse, and we wanted to know if there was anything we could do to help
him. DR put him on the pulse ox monitor and he was stating around 89 to 91...
not good enough. So, he was thrown on oxygen and we were being sent down for an
x-ray. Before we even got the chance to get down for an x-ray - the DR informed
us that he was going to be admitted. The x-ray showed that two of his air sacs
had filled with mucus and collapsed.
So, we spent the next 5 days there -
all his tests for viruses and things came back negitive. We thought we might
have to bring him home on oxygen, but thankfully he weened off the oxygen
before we were released. :) Noah spent his first Easter in the NICU.
Noah was sent home on antiobodics,
and everyday he was on them, I would see a decrease his in food intake. The day
after he was admitted, he took a total of 390 cc's total that day(we measure
cc's because every little bit counts with him right now. 30 cc's = 1 ounce.)
The next day he took 350, then 345, then 352, then 310 the day he came home.
Then 282, 240.. I'm obviously getting concerned!! I had made a call on the 3ed
(when he hit 240) and asked what I could do. They weren't too much help. Luckily
my Public Health Nurse was coming in the next day, or I would have made some
other calls. After expressing my concerns to my Public Health Nurse, she made
some calls to our Ped here - who was on vacation - and then to his Peds there.
They took him off the medication (because it's not a nice medication and was
obviously effecting him.) The day I saw my PHN and he was taken off the meds,
he got 270 in. Then since then, it's been 335, 315, 300, and so far today 240
(4pm)- not the best, but definitely better then it had been!! He's picking up
on how much he's taking in his bottles and getting use to taking more again, I
think he'll be back up to 350 and higher by the end of the week! :)
He had his "first" offical
DRs appointment - and passed with flying colors :) He even put the pulse ox on
him and Noah was stating around 95 :) But since he had been on the medication
at the time, he decided to wait on the shots. He was 4lbs 5oz and 16 1/2 inches
that day (4-2 .. the day after we came home.) Today he went in for his shots
and he was 4lbs 9oz! :) He didn't like his shots AT ALL - but who would? They
didn't give him one of the 5, because of his size and being a preemie. So,
he'll have to wait a little bit on that one. But after I got him picked up
after the shots he called down rather quickly. I had to call in to see how much
tylonal to give him because I had forgotten to ask while I was there. And... he
was 4lbs 9oz today!!!
Anyway - that's about all that's
going on here. He's fitting into more preemie clothes everyday - it's kind of
amazing when your child doesn't even really fit in PREEMIE clothes!! Noah's
Picture site has been update - be sure to check out all the pictures!! There
are 103 in his NICU one and 21 in his "First Year" Album! You'll have
to check them out and let me know what you think of him :) {{{HUGS to All!!}}}
Noah's Weights for the FIRST YEAR of his LIFE ...
Birth: 1lb 12.2 oz 13 ¾ inches
Feb 3: 1lb 13.7oz
Feb 4: 1lb 11.2oz
Feb 5: 1lb 11.2oz
Feb 6: 1lb 12.0oz
Feb 7: 1lb 12.3oz
Feb 8: 1lb 12.2oz
Feb 9: 1lb 13.1oz
Feb 10: 1lb 13.2oz
Feb 11: 1lb 14.0oz
Feb 12: 1lb 14.4oz
Feb 13: 1lb 15.0oz
Feb 14: 1lb 15.9oz
Feb 15: 2lb 0.8oz
Feb 16: 2lb 1.2oz
Feb 17: 2lbs 1.8oz
Feb 18: 2lb 3.4oz
Feb 19: 2lb 2.8oz
Feb 20: 2lb 3.2oz
Feb 21: 2lb 3.6oz
Feb 22: 2lb 4.4oz
Feb 23: 2lb 5.0oz
Feb 24: 2lb 5.8oz
Feb 25: 2lb 6.2oz
Feb 26: 2lb 6.6oz
Feb 27: 2lb 7.2oz
Feb 28: 2lbs 8.0oz
Mar 1: 2lbs 9.0oz
Mar 2: 2lb 9.6oz
Mar 3: 2lbs 11.2oz
Mar 4: 2lbs 11.4oz
Mar 5: 2 lbs 12.5 oz
Mar 6: 2lb 14oz
Mar 7: 2lb 14.8oz
Mar 8: 2lb 15.8oz
Mar 9: 3lbs 1.2oz
Mar 10: 3lb 1.8oz
Mar 11: 3lb 3oz
Mar 12: 3lb 4oz
Mar 13: 3lb 4.2oz
Mar 14: 3lb 5.2
Mar 15: 3lb 6.6oz
Mar 16: 3lb 7oz
Mar 17: 3lb 8.4oz
Mar 18: 3lbs 10oz
HOME
March 20 – 3lb 12oz (DR)
March 21 – 3lb 12oz (PHN)
March 25 – 4lbs 1oz (WIC)
March 27 – 4lbs 0.8oz (DR – Readmitted)
March 28 – 3lbs 15.9oz
March 29 – 4lb 2.9oz
April 1 – 4lb 4.4oz (home)
April 2 – 4lb 5 oz (DR)
April 4 – 4lb 6oz (PHN)
April 8 – 4lb 9oz (DR)
April 12 – 4lbs 11oz (PHN)
April 17 – 4lb 15oz (DR)
April 18 – 5lb 0oz (PHN)
April 25 – 5lb 4oz
May 1 – 5lb 11oz (PHN)
May 10 – 6lb 3 ½ oz (PHN)
May 17 – 6lbs 8oz (PHN)
May 24: - 6lb 14.5oz (PHN)
May 31 – 7lbs 6oz (DR)
June 7 – 7lb 9oz (PHN)
June 12 – 8lbs (DR)
July 25 – 9lbs 9oz
August 1 – 10lbs
Aug. 19 – 10lbs 10oz (DR)
Aug 23 – 11lbs (PHN)
Sept 25 – 12lb 3oz (WIC)
October 2 – 12lb 4oz (DR)
November 2 – 13lb 6oz (DR – double ear inefection)
November 14 – 12lb 6oz
November 26 – 12lb 13oz
January 6 – 13lb 13oz
Jan 22 – 14lb 14oz
Feb 1 – 14lb 12oz
Noah Alexander’s Milestones
2002
February 1st – Noah is born!! 1lb 12.2oz and 13 ¾ inches! Eyes are OPEN!
February 3rd – Off the Ventilator!! Mom and Dad got to hold him! FIRST CRY!
February 5th – First time to Kangaroo Care & First
Feeding! (1cc breast milk)
February 11th – First Audible BURP!
February 14th – Noah’s hit 2lbs at some point during the
day!
February 27th – Feeding on Demand
(1 mo) March 10th – First Bath
March 18th – GOING HOME!!! 3lbs 10oz and 15 inches
March 27th – Re-admitted due to a cold (went home again
April 1st)
(2 mo) April 7th – First time in Church (arrived late, sat in
back)
April 20th – Turns to Sound
(3 mo) May 7th – Holds Head Up!
May 14th – Discovers Hand
May 15th – COOING!!
May 18th – LAUGHED
May 26th – Noah was baptized
(4 mo) June 1st – Noah is now around newborn weight! (7lbs)
June 10th – Eating Cereal
(5 mo) July 10th – 1st Surgery – fixed Hernias
(6 mo) August 7th – Grabbing things with hands
(7 mo) August 8th – Started eating Jar Baby food
August 21st – Pushes up on arms
August 26th –
Started Physical Therapy with Katy
(7 mo) September 11th – Rolled from Tummy to Back (hates being on
his belly)
(8 mo) October 9th – Noah scooted a little
October 14th –
Discovered Feet!
October 20th – Says
“Ba-ba” one morning after waking up for bottle
October 25th –
Holding bottle on his own
(9 mo) November 4th
– Got up on all 4’s
November 9th – Slept
all night
November 15th –
Plays Peek-a-Boo by himself (with Mommy saying “Peek”)
November 29th –
Rolled from Back to Tummy (off Mom & Dad’s bed)
(10mo)December 4th –
Saying “Da-Da” and “Ma-Ma”
December 10th –
SITTING UP BY HIMSELF!!
2003
(11mo)January 27th –
Says “Ni-Ni” for Night-Night and also said “Up” and “Yep”
January 30th – Nods
with his whole body
(12mo)February 1st –
NOAH IS ONE YEAR OLD!!!
February 2nd – after
a few ER trips – Noah’s diagnosed with Asthma
February 4th –
Starts Speech Therapy with Patty
February 8th – Shook
head NO
February 13th – Ate
Pickle (first solid food)
February 17th –
Rolling all over the place to get around
February 21st –
Noah’s got Eczema L
(13mo)March 17th –
One Year Adjusted ~ Swam in a Swimming Pool
March 18th – 2nd
Surgery – Hypospadious repair
March 20th – Rocking
on all 4’s
March 21st –
Creeping with elbows and toes
March 25th –
starting to really look at books
March 28th – Caught
scooting BACKWARDS!
(14mo) April 1st –
Ate Salsa
April 7th – Eats
Cherrios
April 18th –
CRAWLED!!!!!!! And WAVED!!!
(15mo)May 1st –
Clapping his hands
May 9th – Pulling
himself up to stand on furniture
May 22nd – Standing
with help
(16mo)June 2nd –
First Hair trim (just the sides)
June 23rd – Getting
daring and starting to stand by himself for a few seconds at a time
July 6th – Ate same
as the family for the FIRST TIME!! (Hamburger, Green Beans, Carrots, Corn,
Potatoe hotdish)
(17mo)July 12th –
First visit to a Zoo
July 15th – Drank
from a straw
July 29th – Noah’s
FIRST TOOTH popped through
(18mo)August – spending a lot
of time at the Beach!! Loves the water!!
August 15th – Noah’s
standing on his own for short times
August 18th –
CLIMBED ON THE COUCH!!
August 19th – NOAH
TOOK HIS FIRST STEP!!!!!!!!!!!
August 22nd – NOAH
GOT HIS SECOND TOOTH!!!!
August 25th – NOAH’S
THRID TOOTH BROKE THROUGH!!!!!
(19mo)September 3rd
– WALKED!!!!!! Across the room at the
DRs office
September 24th - NOAH’S FOURTH TOOTH BROKE THROUGH!!!!
September 25th –
Stood up by himself when sitting in the middle of the livingroom floor!!
(20mo)October 13th –
Noah’s TRULY WALKING NOW!!! No stopping
him! Taking up to 7 steps
October 18th – Rode
his Baby Bike across the living room
(21mo)November 5th –
Noah used a Spoon on his own today
November 8th – Noah
was caught using his fork!
November 9th –
Noah’s FIRST Haircut!!
November 19th – Noah
threw his first TEMPER TANTRUM
(22mo)December 1st –
Went up and down the stairs by himself
December 2nd – GOT
AN UPPER ONE YEAR MOLAR – NOAH’S FIFTH TOOTH
December 15th –
Noah’s DANCING
2004
(23mo)January 3rd –
Noah’s got his SIXTH TOOTH (another upper one year molar)
January 19th - Noah goes to MONSTER JAM show!!
January 28th – Plays
BALL
February 1st – NOAH
IS TWO YEARS OLD!!!
February 4th –
Noah’s got his SEVENTH TOOTH
February 12th –
Noah’s EIGHTH and NINTH teeth poking through
February 23rd –
Noah’s THRID Surgery – Ear Tubes
February 25th – Noah
is RUNNING
March 11th – Noah’s
TENTH TOOTH is poking through
March 15th – Unzips
things all on his own!
March 17th – TWO
YEARS OLD ADJUSTED
March 29th – MRI
& CT scan
March 30th – ANOTHER
tooth poking through! Number ELEVEN!!
March 31st – holds a
crayon like a 3 year old! Impressed OT
therapist during evaluation!
April 4th – Zipped
and un-zipped his jacket
April 6th – Repeat
MRI
April 13th – Did a
Summersault all by himself and actually ate a sucker for the first real time!
April 28th – Noah
was in the LOCAL NEWSPAPER!!!! (Article
on him and MT16)
May 3rd – 3-D MRI in
Milwaukee – All seems fine! Dr says
“Funny shaped head”
May 9th – Fundraiser
Picnic for Texas
May 20th – Noah
loves going for walks in his wagon!!
May 22nd – Noah is
making animal noises when asked! Puppy
and Kitty
May 25th – Add Cow
and Duck to his sounds!! Way to Go Noah!!
June 20th – Noah has
got SIXTEEN teeth through/poking out now! WOW!!
June 24th – Noah’s
makes, Puppy, Kitty, Cow, Horse, Duck, Chicken, and a few others including
SWIPER from Dora the Explorer who says “OH MAN” .. heehee…
June 27th – Noah’s
FIRST AIRPLANE RIDE going to TX for World Congress on Chromosome Abnormalities
Conference.
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