Noah's Milestones


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 - 3rd Ultrasound - Heartbeat 180

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)

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.

Last picture taken of me pregnant, January 2002
January 28 – Full Moon - 2nd NST – Blood Pressure 153/96 getting high  - had traceable contractions, even threatened to get a shot to stop them  - and had one heart deceleration  …  Strict instructions to go home, and go to bed, and be back the following morning at 8am for NST number 3

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
Pregnancy Complications: diagnosed with rare genetic disorder MOSAIC TRISOMY 16 @ about 18 weeks, severe asymmetrical IUGR, low fluid, small poorly functioning placenta, heart decelerations, bilirubin in amniotic fluid
(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!


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...
4 Bradycardias :( (where his heartrate goes down)
Mom changed 2 diapers - got to do umbilical cord care!

Friday - Feb 8th

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....

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:::

Noah is doing SO WELL .... :::knock on wood::: He is 2lbs 2.8 oz :) (He was 2lbs 3.4 yesterday though - I'm wondering if they messed up a little there, I'm wondering if he wasn't 2lbs 2.4 oz... because he was 2lbs 1.8 the day before - and from that to 2lbs 3.4oz, is a BIG leap.... so I'm thinking that they messed up the day before!) They tried to tell me that he was 13 1/2 inches this morning... I said "No, he was 13 3/4 at birth and 14 last week..." I said "That's just wrong, he doesn't LOSE height".... so she's going to re-measure him sometime this morning and I have to call in a little while to see if the DRs have made rounds... my mom can't get his changes - only Keith or I can. So I have to call and get them....

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.............

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

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

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!!
(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!!!!!!!!!!!
(19mo)September 3rd – WALKED!!!!!!  Across the room at the DRs office
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 15th – Noah’s DANCING
(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 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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