Preemie Remembrance....

November 17 - Prematurity Awareness Day ....

As many of you know, who read my blog regularly, I have had two premature babies.

Noah Alexander - born weighting 1lb 12.2 oz ...... 13 3/4 inches long.......... born at 33 weeks, the size of a 24 weeker ...

 Noah was on a vent for the first 40 hours of his life, then proving all the doctors who said he wouldn't live wrong...... he was off of it!! 

 With Beanie Baby HOPE ... Noah at his lowest weight - 1lb 11oz at 3 days old... 

 His itty bitty foot in my hand ....  

Nathan Patrick - born weighting 3lbs 4oz .... 15 3/4 inches long ........ born at 36 weeks, the size of a 31 weeker ... 

 Nathan was constantly under the bili lights ....... I called him my sunbather ...  and he was tube fed because he couldn't get nippling a bottle  ... thanks to his sub-mucus cleft palate ... 

 The picture below is of Calahan and Noah looking in on Nathan through his bed...  the NICU actually loved this picture - stole it from me (ha ha ha) and asked if they could use it in future publications to talk about how siblings are integrated in the NICU ... of course I said yes!!

I am the Mommy to TWO Preemies!  Two babies with medical issues.  Two babies who game too early and too small.  I've been in the NICU twice, and I've brought home two babies who were under five pounds. 

Before having a preemie - you are so naive ...  you know there is a world out there of babies who are too small, you know some of them don't make it ... you know it exists but it's the whole IT WON'T HAPPEN TO ME mentality....

It does happen ...

Then you become way to familiar with all the things that can go wrong ...  brain bleeds, feeding issues, A's & B's...  temperature holding issues, sensory issues, tube feeding, PIC lines, leads and daily weigh ins... not to mention the world of breathing tubes, oxygen... and RSV ...

It's not an easy world to enter into once.... let alone twice. 

Educate yourself....  you never know if it could happen to you, or someone you love.......

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Prematurity

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As the mother of two premature babies (Noah was 1lb 12oz and Nathan was 3lbs 4oz) ... I had to share this emotional video ...

Pity, for Pity's sake: pt: 2....... (Sign the Pledge!)

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If you haven't read Pity, for Pity's Sake: pt 1 ..... please do so :)

Imagine, you have 9 and 3 year old sons, one is just easing back from a roller coaster of medical issues, weekly doctors visits, knowing that any of his major and minor organs could be riddled with his rare genetic disorder, much like his skin.  (Noah's skin biopsy reveled that about 30% of his skin cells were effected with the extra chromosome... and it was not in his blood at all, the placenta had been 100% Trisomy 16) ...  the fact that his kidney issues continue, makes mommy feel like it's at LEAST in his kidneys.  You can only hope for a happy "normal" life, but realize it may not be a reality.   You are divorced now, a single mom, you have put yourself out there dating, it's fun and you aren't taking it seriously really.  You never did it before you got married, and now you figure no one will want to take on a used woman with 2 kids, one who has medical issues and you'd never marry anyone who didn't understand what they were getting into.   Marriage, isn't in the future...  Their 10th and 4th birthdays passed us and before I knew it, the divorce was finalized... 

But then I met HIM ...  and my world changed.  We met on the internet, and the boys would see me talking to him on webcam, hear me talking to him on the phone, but my mom was in town, and when she flew back home, she was taking the boys for the summer.  I had the chance to date him, without the kids getting involved.  He ended up moving back to Wisconsin to be with me and I had to fly out to WA to get the Cal and Noah.  So I did... and while I was there, with them, I told them that they were going to come home and have a great new man in their lives.  Dennis and Mommy were planning on getting married the following year.   No one else really knew, but we had decided to haphazardly try for a baby together too.  We figured we'd give it a couple months, and then take a break, because I didn't want to be pregnant for the wedding.  We were away from each other for 2 weeks, and when I got home with the boys, we spend a lot of time in each other's arms {wink, wink} ...  so September we were going to start trying and I was just waiting for the cycle for August to end.  I was temping (charting) already to get into the habit, and getting really frustrated because the start of my cycle wasn't coming.  I knew I wasn't pregnant, I had all my ovulation symptoms my last day at my mom's.  Finally, Jenna got on my case, and yelled at me to take a test.  I had already taken one, it had been negative, but just to shut her up, I took one.   As I was walking up the stairs, I glanced down, and OMGosh....... THERE WERE TWO LINES......(Tuesday AM was my neg test, Thrus PM was the first one I got 2 lines on)

 And the lines got darker!

I called the DR's office, at that point, I had suffered 12 miscarriages (the 13th came on our 1st Anniversary, a couple weeks before Kaedyn was conceived), and my OB and I determined that I'd need to go on progesterone as soon as I got a positive result.  A beta was set up to keep an eye on my hCG numbers, and my prescription was filled for both the prog & prenatals. 

Soon it was time for the first ultrasound, the earlier, "let's make sure this pregnancy is viable" ultrasound and we saw his little blob and his flickering heart.  Sure enough, there he was.  I ended up having another one  between then, and the 12 week, because I was cramping and spotting pretty bad, but everything was fine.  Then came the 12 week ultrasound and yet again, I was watching my due dates travel south.  I was due on Mother's Day, (May 13) and by then I think my ultrasound based the due date, from the size of the baby, already in June.  I was scared.........

......... was it happening AGAIN?

Discussions with the OB, at 16 weeks I had the amino done, just to make sure.  Two weeks later, we found out we were having another boy, and he looked 100% genetically healthy! 

........ YAY, huge victory!!!

We found out just in time for our wedding, because we decided to get married now, legally, for the sake of the baby - we had been planning on it anyway!  We still plan on having a big wedding someday, but we decided we needed to focus on our family.  I was 18 weeks pregnant for our wedding...  

The day after Christmas, we went in for our 20 week ultrasound.  And just as we were ready to welcome in the New Year ...  we got the phone call that would, yet again, change our lives. 

"This is so-and-so from Dr. B's office, we have the ultrasound results and we need to speak with you about it."  Oh GREAT.  "First of all you have a very large fibroid tumor in your uterus with the baby, but everything should be okay there.  The baby has severe Intrauterine Growth Restriction," which we already knew, "He has a two vessel cord," there are three main vessels to an umbilical cord, "and we found a cyst in his brain."  WHAT??  A CYST in his BRAIN??  OOOOMGosh what does that mean???   "It seems to be stable right now, we just need to keep an eye on it."  She couldn't give me any other information, really.  I think she mentioned it was called {Dandy Walker} but I don't recall if she had told me or if I can found out at my next OB appt.   Pity was on the phone that day, I could hear it in her voice as she tried to keep ME calm.  Please don't freak out with me on the phone, I feel bad enough telling you all this after all you've already been through.   She hung up with me as quickly as she possibly could, she didn't want to be responsible for giving me information and dropping the heavy box of worry upon my head.   I wonder if the nurses and assistants all drew straws to see who got the short one, to make the call, because it was someone I had never talked to before.

A cyst in his brain........  I was terrified.   Something WAS wrong, because he wasn't growing.   As soon as I had found out it was called {Dandy Walker} I hit the internet for hope and inspiration, much like I had with Noah.   Only this time, I didn't find any.  All I found were words like {DEATH} and {HYDROCEPHALUS} and {MAJOR DELAYS}

...... OMGosh, it was happening all over again.......

{IT WAS HAPPENING AGAIN}

When I went back into my OB I broke down with my worries and he assured me that based on what they had seen, the baby's (he was still semi-nameless at that time, we called him Lil D because Dennis wanted to name him after himself, and I was going to let him have his way, although I didn't like it... who wanted to cause their little boy to have the nickname DENNIS THE MENCE hanging over their head....)  was stable and they'd keep a good eye on it.  I was having ultrasounds every 2 weeks from then on.  I had hypertension and was being monitored and watched for Pre-eclampsia, and I was having contractions so I was on moderate bedrest. 

It had gotten to the point where they were thinking, based on my blood pressure, I'd have to be delivered soon, it was sky high, but the protein was still stable.   But I was ordered the shots for the lungs, just incase.  They gave me one at one appointment, where the Perinatologist gave it to me, and then gave me the vile of meds to bring home, and go into to the OB office for the second dose. 

But Junior and I hung on there ...  and soon enough, about a month before he was born, his name got changed to Nathan Patrick, and that one stuck. 

I had been told various things through the pregnancy, we want you delivered by 33 weeks, 35 weeks, 37 weeks... it was fine it got pushed back, it meant that Nathan was doing better then they expected, but at 36 weeks, we knew it was time. 

Noah had been running a fever, he'd vomit a little, but the fever was so very bad.  He was complaining about a pain in his right side, he was not himself.  The fever was getting lower and going back up and dancing around.  We took him into the ER.  They did no testing.  He's afraid of the DRs and he will act as normal as he possibly could, and he was demanding me to read to him because he was scared, and the Physicians Assistant that saw him, said that he just had a virus without even really doing anything.  When we mentioned appendicitis, we were told he was to young.  What gets me, is he gave them a urine sample, but it was never run. 

We went home, Monday he seemed better, but Tuesday, the day I had another ultrasound an appt 2 hours away, possibly looking at being delivered that day, Noah woke up with a 104 fever and vomiting, he was lethargic, and I spent about an hour struggling with a choice.  Did I leave him home with my mom and have her try to get him in, or did I take him with me and have him see where we were going, which happened to be the hospital he was born at, 2 hours from home.   I kept thinking, if he gets admitted, at least we'll be in the same hospital.  Since Nathan had many issues, and was so small, we planned on delivering at the hospital with the NICU where Noah had been born.  I didn't want complications to arise and then have our hospital end up transferring him there anyway, and be in a separate hospital from him.

So Dennis and I packed up, packed Noah up, and Mom was going to follow with Calahan later.  It was April 17th.  I went through my ultrasound and appointment and it was determined that I would deliver on Thursday, April 19th.  Then we took Noah to the Ped's department where the Urgent Care kids are sent.  So we got him in, and ended up waiting in the office for an hour.  By then, his fever was back, and the little bit of energy he showed during my appointments was gone, he cried, he slept, he struggled and he was not his normal self.  The DR, when she finally came in, took one look at him... and knew something was wrong.  She ordered an IV, labs, x-rays, ultrasounds, and then said to come back down and she would probably end up admitting him.  When I mentioned appendicitis to her, and what the DR at home had said, she was appalled and said he wasn't "to young" ... and promised me she'd figure out what was wrong.   We ended up finding out that Noah's kidney's were failing and they were running all sorts of cultures on him.  He ended up, we found out after he was admitted, that he had C-Diff, which is a bad bacteria we all have in our bellies, but when we are on normal antibiotics, it doesn't kill the C-diff because it's to strong, normally, it stays dormant, but sometimes, when you are on meds (and Noah had been for an ear infection) .. it runs rampaged, and in Noah's case, it almost killed him.

Pity walked into the room, again, with pretty much every nurse and confused DRs.  Knowing his history, seeing me 9 months pregnant... it was hard not to look at us like that, especially when I was shoving my 9 month pregnant behind on a sleeping bench under Noah's window and wouldn't leave.  I didn't leave until I had to go down to L&D at 8am on Thursday morning to give birth to Noah's little brother.   That was one of the hardest days of my life, leaving one baby in the hospital, going down the hall, down a floor, to have another... 

Pity was there then too.  Only by now, I had let all my anxiety I had been fighting off take over.  I was breaking out in tears, I was a mess.  Emotional because I knew that Noah was wanting me, and I needed to be there for him, but I couldn't....  he was in good hands, my Mom and his big brother Cal, but I wanted to be there.  But obviously, I had to get Nathan out.  It was time for him to be born and I was scared.  Scared about everything.  

Things weren't so much a whirl-wind this time as they had been with Noah's emergency c-section, it was a little more calm.  Word had spread that my other son was up in PEDs but everyone tried to focus on now.  There were questions though.  "Why is he there"  "What's going on?" ... I was shaved, shoved with a catheter and wheeled back into the OR.  It took them 20 minutes to place my spinal this time.  I was shaking to death and really upset by the time they did, but I was so glad when they finally did ... I had a massive bruise on my back, though, from all the attempts.

That's when pity entered the room...  and brought along some luggage.  She planned to stay for awhile. 

Things went okay, Dennis finally came in and thought I had to be knocked out.  He hadn't been in the delivery room for his Daughter's birth because his ex-girlfriend had to be put completely under.  So this would be the first birth of one of his children, that he'd witness.  And he was all eyes.  I told Dennis, I didn't care about me, I wanted him to stay with the baby.  Where ever the baby went, he went.  And to take pictures.  Don't let the baby be alone.  So he did. 

Nathan Patrick was born at 11:07am on April 19th, he was 3lbs 4oz and 15 3/4 inches.  He came out SCREAMING ..... and I cried.  I cried with joy to hear his little voice, to hear his lungs working ...  to have what I wasn't given with Noah.  They brought him by me, for a quick look-see and a picture...  and then Dennis went with him to that room, behind the door, which was left open this time, where they had taken Noah.  Nathan's experience was the same one I had needed with Noah, but never got.

Then Pity started doing her dance.  For 36 1/2 weeks, he was extremely tiny.   Pity pity ... 

I was taken back to my room, various DRs would come in, tell me this was wrong, or that was wrong...  I heard things like "cleft palate" and "heart issues" and various other things.   Genetics was called, surely SOMETHING had to be wrong genetically, with all his issues.

What are the odds of one person having two such dramatically different children with such widely spread health issues...  with two different Dad's, no less...

He was in the NICU, funny enough, in the same pod, in the same bed spot, that Noah had been.   (Noah btw, had been released that day from the hospital, feeling better but not 100%, and he got to visit his baby in the NICU after he was born)  All the nurses knew me, remembering me from when Noah was in there.  I had kept in touch with a few of them.  I was told, I knew what to do, and they pretty much let me run Nathan's show as much as I could.  I'd reach in there, check his diaper, fix his leads, what whatever I could, that I knew, needed to be done.  I knew when to leave him alone, and I knew when I could reach in there and hold his hand.  Dennis, though, was another story.  This was his first NICU baby, and although he accepted Noah for all he was, he hadn't been there.  It scared him, just like it does every parent walking into it for the first time.  I taught him a lot of what to do.  How to change his diaper in the incubator.  How to kangaroo, how to tube feed him, how to burp a tiny tiny baby.  He was a pro, though.  He was showed it once, and that was all he needed.

Nathan was in the NICU for a couple weeks, he ended up coming home the Wednesday before his Mother's Day due date. 

Pity stuck around, hiding. I'd catch looks form some of the nurses, every time a new diagnosis came down the line.  I would catch it from some family members... Especially when they saw him with the NG Tube (which he came home with because he was having a hard time nipple feeding, because of his cleft palate)

 His tiny hands, and tiny feet amazed me ...

 But he did slowly grow........ he averaged about an ounce a week in weight gain.  That's it... just an ounce.  Sometimes less, sometimes more...  (ages under pics)

 4 months old

 6 months old

 9 months

 11 months

 One year old... STILL in 0-3 month clothes, some 3-6 month

Pity especially came out, after we brought Nathan home and in public.  After he got a little older and the questions would come.  "Oh how old is he?" and I'd tell them... "Really?  He doesn't look that old!"  Well he is.  My favorite reaction I would get when telling people Noah's age before Nathan was born, and Nathan's age was ...  "SERIOUSLY?" ... you could hear their heads scream "What is WRONG with him/them?" but be to polite to ask.  I would feel the need to explain that Noah was a 1lb 12oz preemie and Nathan was 3lbs 4oz when he was born, and that Noah has a rare genetic disorder, and Nathan has a cyst in his brain.   Then I get the "can it be fixed?" um, no, he has to live with it like that forever.  It could get bigger, it could cause problems, but right now it's stable and we are thankful.   Pity is in all of their eyes when they look at Nathan, but Nathan will usually turn around the situation and do something goofy, because that's who he is, and make them laugh.

(some of my fav pics of him, Dancing in the Rain - Taken just after his 2nd Birthday, on his Adjusted Birthday - May 13, 2009 - 2 years after he was due)

Once Kaedyn was born, and started to get to be around the same size - which didn't take long - I would be asked "Are they twins?"  Especially when out in this Cadillac of a stroller...

 (you can see the seats actually face either way, it's the BEST stroller in the world .. a pain to break down but who cares!) 

And I'd have to say "no, they aren't... there is 16 months between them."  To which I would often get the rubber necking between looking at them, and they would guess who was older.   Usually picking Nathan, because he had more teeth.   Then they want to know what's wrong with Nathan.  Pity comes back, and Nathan now ignores them.  Kaedyn is a ham bone and soaks up the attention, and sometimes, when Noah is with us, he doesn't understand why HE doesn't get attention like HE use to.  Nathan has gotten to be very stand offish to people...  they are okay, as long as they are at a distance.  Please don't get to close.. he doesn't like that much. 

 Nathan is in 12 month clothes for length (sometimes 18 months but the width swims on him, he COULD fit in a 9 month outfit if it weren't for how tall he was) ... He's in size 4 diapers, but I can still touch the tabs together.  Kaedyn is in 18 month to 24 month/2T clothes.  He's in a size 6 diaper and we're going to have to start potty training him soon because there is no where else to go after that...   Nathan's feet are in size 5 because they are LONG and Kaedyn's because he has Hobbit feet...

Here is Nate showing you how long his feet are... (these last 3 pics, btw, were taken just before I published this blog.)

Now that Kaedyn is BIGGER then Nathan, it's hard.   Nathan, you can tell, is noticing.   He'll be 3 years old in a few months, and he's only 18lbs, and 31 inches, Kaedyn is about 26 lbs.   He still hasn't been officially diagnosised with Russell-Silver Syndrome .. but it fits him so well.  It's a type of Primordial Dwarfism.  We have watched Kenadie's story on TLC.   She reminds us so much of Nathan, only Nathan is a little bigger. 

Pity is going to follow us for a long time, Noah's issues are easy to hide, but Nathan's aren't.  It's hard, because it seems like each year, the list of Nathan's issues grow with each year.  And grow...... and grow. and grow...   but we'll take whatever steps we need to in order to help Nathan have a strong will, a happy life, and as healthy as can be!

So let's stop PITY...  PITY is 100 % CURABLE .... take a stand against Pity, and sign the Pledge!  I did!

Noah's Pregnancy & Birth Story

NOAH'S PREGNANCY & BIRTH STORY

I want to thank everyone first for reading this. It's not an easy, or short story at all. So, guess I better get started.....

We wanted another baby right away, right after Calahan was born…. So when he was 3 months old, we started to “try”..... I wanted Calahan to have some sort of "twin" experience.... I wanted them close. 4 more miscarriages, and 5 years later......... still we didn't have a baby.... and I was losing hope, VERY quickly........

Calahan said to me one morning, while waiting for his Pre-school bus.... "Mom, you're gonna have a baby pretty soon." And I looked at him like he was nuts. The following week, I had an appointment with a new DR.... I just wanted to get my periods in order because they were somewhat irregular... and the 10 minutes I was in his office...... gave me a whole new hope. In 10 minutes he told me he was going to give me Clomid, and we'd have another baby. I was in shock...... and looked at Calahan in a whole new light!

~*~ PREGNANCY STORY ~*~

It took another 4 months to get pregnant.... I was SURE I wasn't that month, didn't even want to be because I was under a lot of stress....It wasn't a good time. But on June 25th I conceived a baby...... that is my birthday, June 25th. And I found out July 6th that we were pregnant - I was in shock, aww... and disbelievement.... I even took a Home Pregnancy test because I didn't believe the blood one they did at the DRs office... and that was positive before I even put it down on the counter!! I was pregnant............................... I was really pregnant...............

I asked for an ultrasound right away... I just needed to know everything was ok. After 5 miscarriages, who could blame me right? Our first one was about a week and a half after we found out. All we saw was the sac :( I was scared for the week I had to wait until we had our second one.... on July 26th (my best friend's birthday) we went in.... and there he was. Just a tiny little line, with a heartbeat - and we HEARD his heartbeat!!! I was 6 1/2 weeks pregnant... the due date was March 17th 2002, which made complete sense because I had gotten preggo on my b-day. The first one we had gotten was March 14th....

As excited as we were, I felt GREAT!! Nothing like I had with Calahan. A little now and then, but not bad at all. I was making plans... actually made my BIRTH plan on everything I wanted for my natural un-induced vaginal birth.. I was looking forward to doing it again..... no medication... lots of relaxation (yeah right)..... and I wanted to breastfeed the baby. I tried with Cal but had been unsuccessful.... I really wanted to do it... just to have the experience at least. We had another ultrasound in August, for some reason the baby measured smaller and came up with a due date of March 22nd, which I knew wasn’t right. I asked my DR about it, and he sorta blew it off – saying that ultrasound is the one they actually use to get a due date and the other ones before that are measuring the size of the sac and this one was measuring the baby. Well, I knew when I got pregnant, and St. Patrick’s was my due date.

I hit about 4 months pregnant and opted for the AFP... Cal's had come back normal and I had no doubt that this one too, but yet, deep down, I was worried it would. I figured everything was fine cuz they never called, and I figured they would before my next appointment. So, we went in for our routine appt. and got the news........ the AFP had come back abnormal. There was a chance for both spina bifida and for Downs... now how could THAT be?? Usually it's one or the other. I wanted to go to the next step of a level II us... but hubby pushed for the amnio. "We'll know for sure" he said "And you get the side benefit of finding out if it's a boy or girl"..... so I reluctantly said ok. We did the amnio.... and on October 30th we went in to get the results. "The baby doesn't have Downs or Spina Bifida... but it does have a very rare genetic condition called Mosaic Trisomy 16" just about everything went on a deaf ear after that........ except at the end, when he had said "Oh, and by the way, it's a boy!"........... our Noah.. ... Noah Alexander..... we had his name already picked out. He became Noah from then on.

Mosaic Trisomy 16 happens the same way DOWNS happens... only it's nothing like it. While the cells are splitting and creating.... instead of there being 2 cells of each chromosome in each cell, while 2 are splitting..... three 16th Chromosomes go into one cells, leaving only 1 for the other. The one cell with only 1 of the 16th chromosome dies off.... and the one with 3 continues to regenerate and split, causing more cells to have 3 in it. Mosaic - means pieces - not all the cells have it, only pieces........... Trisomy means 3...... and the 16 is the chromosome number involved. There are other Trisomys.... 21 (Downs) 13, 18 ....... but Noah's doesn't have a, what I refer to, "cutesy" little name. So we just refer to it as MT16.......

I immediately got on the computer searching for information..... and only found one place with anything helpful at all. I e-mailed the lady in charge of it, and she e-mailed me back. She became my Angel - providing me with information and hope. Her daughter was born just after Calahan (she was born Valentines Day ’96) with this ... and she, because SHE couldn't find anything at the time, started this group that is a wealth of info! It was wonderful having some hope and some information.

The rest of my pregnancy was sorta uneventful - other then going through tests and talking to people who really didn't have a clue what they were dealing with trying to pretend they did....... someone even brought up the "abortion" issue which he was flatly told that was NOT an option – we fought for 5 years for this baby – there was NO way we would do anything like that. If it was meant to be, God would see to it.. I was put on moderate activities when I started having contractions in September/November. Nothing really worried about - didn't usually show up on the monitor... although a few of them did. My goal was to make it until Valentines Day... when I could have him in the hospital at home ... (But odds are, the would have sent him to Marshfield anyway because he was so small, I never expected him to be THAT small...... )... there were some complications inside... Noah was of course measuring very tiny .... imagine going in every time you have an ultrasound and the baby is measuring to a whole new due date... March 14, March 17, March 22, April 3, April 6, April 15, April 20.......................

I knew I was gonna have a small baby..... so I started buying preemie clothes. Prepared Calahan for it. Prepared ourselves.... but nothing could have prepared us.  I was honestly scared.  I would go into the baby departments at stores - knowing I needed to prepare for his arrival ....  but in the back of my head I kept hearing ... "he's not going to make it" .... and I couldn't buy anything new.  My mom got us a bassinet ...  a carseat/stroller combo .... We had a playpen .... and a friend of mine gave us a changing table.  I pulled out stuff that I still had from Calahan - washed it all - folded it .... but we didn't buy anything new .... others did and were given to us - but I couldn't get myself to do it.  I didn't want to come home to find all those things slapping me in the face if he didn't make it.  I had FAITH he would make it - but the what if's haunted me.  We bid on Preemie clothes on ebay - back then they didn't have preemie stuff at the stores ...  not until after he was born did they start to put stuff in the stores. 

I was figuring he would be about 4lbs when he was born.  I got Calahan this baby doll that felt like a real baby - had some weight to it - about 4 lbs ....  and we practiced taking care of the baby.  Named the doll "Baby Noah"

I had been homeschooling Calahan... and decided in January to put him back into school. I knew that we didn't really "know" what to expect with the baby - but I did expect to have to give him a lot of attention and possibly go to a lot of appointments for him. And I hadn't been able to devote the time to Calahan that I needed to, to Home school him. I wasn't happy - but was happy with his school. They all made me feel better. Calahan's first day was January 28th... the day I went in for my 2nd NST. I got hooked up to all the monitors and sat there with my apple juice and water, and my book.... and was there, and there and there......... the monitor was showing my contractions in a more consistent pattern, which worried them. They threatened to give me a shot to stop them, and I freaked out (I hate needles!!) And I asked the nurse to give me a few minutes, and let me drink some more and try to calm down (I could get them to go away if I tried sometimes)....... and I flipped over to my left side (I prefer my right).... and while I was doing this.... Noah had a heart deceleration. She said he did, and I started to argue with her, because he was a little bugger, tiny as he was, he wasn’t easy to track on those things, and we lost him all the time on the monitor, and it sounded to me, like we just lost his beat there...... but she showed me the tape, and said "Look right here, you can SEE the line go down"....... and she was right. That freaked me out. I was there for FOUR hours!! I didn't get out of there until after noon, but I did manage to escape shot-less!! I was told to go straight home and lay down and be back ASAP the next morning. So, I went and got lunch at Taco Bell....then drove up to hubby's work and told My Ex what was going on, then picked Calahan up at school, drove back up to Dad's work to pick him up, then went home... and THEN laid down the rest of the night.

The next morning I went in right after I dropped Calahan off at school. It was around 8:30....... got weighted and pressured (which was WORSE then I've EVER seen it before!! The bottom number was over 100!!) Then had to give them a pee test.... and up to the monitors I went... I laid there, with my juice, water & book... and started reading. Contractions being recorded every couple of minutes..... and look here.... a heart deceleration.... and another....... and another. Pretty soon my DR was in there and said "We have a couple problems.... several red flags are going up".... I was scared now. I had called my Mom the day before to tell her what happened and told her not to worry!! Now I was worried!! "We have the 1st flag of Noah's MT16, then on top of it we have the fact that you've developed Pre-eclampsia literally overnight, and now he's having heart decelerations, and your contractions. You need to go to the hospital....and we need to start the steroid shots for his lungs... then we'll go from there." I asked if I could go pick up My Ex Husband, before going to the hospital, considering we were down to one car that week.... his answer, NO, absolutely not. That's what scared me the most!! I couldn't even go across town to pick up My Ex Husband. I called My Ex at work.... and told him what was going on. Then I called my Mom and the first thing out of my mouth was "You can worry now".... she booked a flight that night, would be there late the following night. I got the 1st of 3 shots to boost Noah's lungs that were already almost mature on their own...... we hoped. And headed to the hospital. I got in the car, and LOST IT. Literally cried to the point of not being able to see for the 6 blocks from the clinic to the hospital where my first son had been born. I literally almost ran into My Ex who had been told to leave by his boss, and his boss even lent his car to a co-worker to get My Ex to the hospital. I saw him and lost it worse, bawling in the parking lot. We went in together... I was put in a room, only a few rooms down, from where Calahan was born. They made me change, put the IV in, and the monitors on. Had trouble finding the little booger - course, they always did the way he moved around, he still had lots of room. I had asked my DR if I could go home later, and he said he didn't know.... we could be having a baby. So I was well on my way to terrified... and they complained my BP was too high.... wonder why.... the nurse who took care of me going in, was the same nurse who had sat with me through most my labor with Calahan.

I had my other 2 shots... I ended up being in the hospital for 4 days, each day my DR would come in and tell me what was going on..... I wasn't behaving (blood pressure) and neither was Noah (heart decelerations)... and it seems worse at night. One night, they even had to put the O2 mask on me. I would start out by asking him if I could go home yet ... (jokingly really, but praying for a yes) and he'd ask me if I wanted to stay or go to the hospital 2 hours away where there was the better NICU & High Risk center. I would always tell him I wanted to stay as long as possible. I was put in the hospital on my son's second day of school, it was tough enough on him, I didn't want to be whisked away from him any sooner then I had to. On the other hand, I had been telling my DR from Noah’s diagnosis that I wanted him to make sure to take Noah out before anything happened to him in utero (we had a bad – small – placenta, low fluid, and other things) There was no way that I'd be able to deliver Noah vaginally with the heart decels... so my dreams for that was dashed. Thursday I got my 2nd amnio to check on his lungs (they are NOT pleasant) ((This time Noah thought the needle was a new toy and went to grab it, my DR had to pull it out of my uterus and he said “Bad baby” then had to put it back in after Noah turned away – OUCH!)) and the fluid came out light yellow. DR was a little concerned about that. Said it may take longer to get the results back. So, we waited - and it did. All we knew was that it was bili ruben in the fluid. What that meant, we didn't know. But we had hope - and prayed a lot. Noah already had a massive connection with his big brother. My MIL had brought Calahan over from school that first night I was there, and I was all hooked up.... Noah was sleeping, no "BOOM BOOMS" on the machine..... and the second Calahan walked in the room and said “Hi Mom”..... Noah woke up and the room was filled with "BOOM BOOM BOOM BOOM" .. it was so cute. Then when Cal left, Noah went back to sleep.

Friday morning, February 1st...... the day before my Mom's birthday, and the 7th year anniversary of My Ex's & My first date...... my nurse who had taken care of me the first day, walked in and said "You're leaving, I had to come give you a hug" and we're all like "What??" "Oh, whoops," she said. "I let the cat outta the bag"... MY DR came in shortly after and told me he wasn't giving me a choice anymore, I was going to Marshfield. We'd probably have the baby the next day. His lungs were "almost" mature, but not "all" the way there. I was giving breakfast (rarely allowed to eat the 4 days I was there)... and then Becky (my nurse who was there for Cal & the 1st day) decided to ride with me. We went in ambulance the whole way there. Long and boring ride. I tried to read... but just wasn't into it much. Too worried. Got to the hospital, in an L&D room.... (ours were MUCH nicer) ... and told they were going to do some tests (bloodwork & us) and I couldn't have anything to eat or drink. I asked why, and she said because they may do the c-section that day... I was like NO WAY that's not what my DR said! Everything from there seems to be a flash... the US tech came in, and started the ultrasound, Noah waved at us and showed us he was a boy again - yes Noah, we knew that! Then the vampire came in for my blood and asked me if I was "Annissa ******" and I said "Yes, it's not like I can lie and try to go hide"..... and they took my blood while I was having the ultrasound. My Ex walked in at that point, here they had been there awhile but told a different room... (my post. room) and had been waiting in there. My Ex said he was gonna go with Cal and leave my Mom and he'd be back right away in the morning. I told him he wasn't going anyway - he was gonna wait to hear what the DR said. The DR walked in a few minutes later and told us, we're gonna have a baby. The placenta was starting to fail horribly and we had yet another red flag flopping in the wind.



~*~ The Birth ~*~

They prepared me quickly… shaved me, put the horrible catheter in. L Walked My Ex through it. By about 3:15pm I was in the operating room (I had gotten there about noon!) ... The spinal was HORRIBLE...... and I never want another one.. but if I want another baby I'll have to get one. I have to have a c-section from now on. Things went quickly from there... I was trying so hard not to cry... trying not to look at My Ex because if I looked at him, I'd cry. Trying not to think about Noah, but what else is there to think about. The ONLY thing I had hoped for, was to hear him cry. I just wanted to hear him cry and know he was ok!! Next thing I knew everyone is yelling "3:45, 3:45" and both My Ex and I were like "What?" Only took us a few minutes to figure out Noah had been born, no one told us. We looked over to the room where he had been taken, a room off to the side of the OR, closed off but with a window of it’s own... and there were a bunch of DRs and people in there. We didn't even see him... hadn't even known he was born. No one said "IT's a boy" or anything......... and that's one of those things that still kills me to this day. We just wanted to know if he was ok, and didn't know anything.

I was taken back to my room... and we knew nothing. It took a little while for people to start coming in. First thing out of everyone's mouth was what a cutie he was. We were told of specific little problems... micro preemie weight - told to us in grams (that means what?) ... looks good, on the vent - didn't want him to even try to breath so they didn't let him.... had 3 little holes in his heart... and a few other things... Said we (meaning everyone but me) could go see him in about 20 minutes. 4 hours later, My Ex, his mom, my mom and Calahan finally got in to see him, (after 7pm). Came back showing me one of his diapers, and some video... and told me he was 1lb 12.2oz and 13 3/4 inches. Gave me some Polaroid’s too. My Ex and Calahan left shortly after, leaving my Mom with me. We played Uno for awhile waiting for my feeling to come back. Finally it came back enough that I could move my feet and legs - and so they told me I could go see Noah now... it was around 9:20pm. I tried so hard not to cry when I first saw him. He was SO TINY... just unbelievable..... I couldn't believe it.... just couldn't. "The first 24 hours will tell the difference" I was told..... I had no doubt, he was here, he would make it...

This was taken 2-2-02 ... Noah was on the vent for about 40 hours, not even two days!

I pushed myself the morning after he was born, I wanted to get up and do it NOW because I wanted to go see him. I almost fainted. Came so close I had tunnel vision and couldn't hear a thing. But I did it..... and I was up and walking around the rest of the day. Back and forth to the NICU... coming back, and starting pumping for the first time.... Noah did great though!! He came off the vent about 40 hours after he had been born...... the nurses would walk past his bed and stop dead, wondering why this 1 lb baby was OFF the vent.

Taken 2-3-02 ... after being removed from the vent.  That is TY Beanie Bear HOPE with him.

And after a week, he was basically termed as a "feeder, grower"

2-14-02 - Valentine's Day - all I wanted was for him to hit 2lbs and he did that day!  We were in the process of doing Kangaroo Care where baby and parent are skin to skin.

Noah had several problems in the NICU... he had hyperbilirubinsim (his jaundice would keep coming back), he had his heart murmurs, he had some bradys (basically heart decelerations) - mostly the couple weeks before coming home - some of them were not "true" bradys... he had some fluid on his brain they were concerned about, ended up freaking me out - but we were suspicious because our friends baby had the same thing, what are the odds of that - ended up being a temp ultrasound tech and the normal one who deals with the NICU babies said it was a variation of normal, and they were fine... wheeew... they saw his right kidney was enlarged (I donno if that has gotten better or not) ... he had umbilical and groin hernias... and a hypospadious (his urinary tract went to the underside of his penis instead of the tip)... and he went through other tests for his MT16. We found out the placenta was 100% MT16, the blood was 0% MT16, they did a skin graph on him, and his skin cells were 30% MT16 which is what they found in the amniotic fluid was 30% from the amnio. We are lucky to have him.

Tiny hands ..... 

And TINY feet ....

We were there 6 1/2 long weeks, and he came home the day after his due date. He came home at 3lb 10oz! Can you believe it??? Everyone asks me if I was freaked out taking him home then, but I wasn't at all. I had been taking care of him while he was in the NICU – by the time he was 3 weeks old I was doing a lot of what the nurses did. I was there between 8 and 9am and didn’t leave until 10 usually. A week later he ended up back in the NICU for 5 days, due to a cold. That was heartbreaking. We had just left and there we were again.

Easter Day 2002 - back in the NICU for a cold (thought possible RSV) ... NICU Bunny came to visit

A couple of months old, in a baby doll crib.  (A Bitty Baby crib to be exact, from American Girls)

Noah has had a lot of ongoing issues - asthma, hearing loss, oral sensitivity issues, various other things... most recently he fought a round with C-Diff and was close to his kidneys failing... He has had a long journey so far, and a longer one to continue...

4-17-07 - In the hospital w/ his kidney's failing and C-Diff - two days before becoming a big brother

At the time this blog is written - he is 5 years old... just barely tippin 30lbs... he has low muscle tone in his legs and a hard time walking some days - but he really doesn't let anything stop him ... unless he doesn't want to do something, and then he'll complain.. lol...

Age 5 - in the NICU with his little brother

He is an amazing little boy...

BLOG REVISIT:  4-24-12 ....  Noah is now 10 years old! 

2-1-12 ...  Noah's 10th Birthday ... with Treasure Buddy

Noah is 56 lbs and 14oz ... and 4 ft 3 inches... he's at the 4th percentile for height and the 6th for weight.. (as of a couple days ago).   He is in 4th grade, but only at a 1st/2nd Grade level ...   He has gotten a hearing aid...

Significant hearing loss in his left ear has given the need for a hearing aid

His kidney's healed somewhat but we've had to keep close eye on them.  Everytime he gets sick he spills a lot of blood into his urine because being sick makes them crabby apparently ....   He also broke his nose summer of 2011...

With a broken nose, summer 2011

He fell down the stairs where we live and broke it ....  he needed surgery to fix it.

Noah was also diagnosed with dyslexia ... he is a very smart and charismatic kid.  He says he has no friends but everytime he's around kids, he's drawing them in, playing with them, and at school the kids FLOCK to him.  I took him to school one day after some doctors appointments - his class was going out for recess - they all circled around him going "Noah you're here!!"   He is missed by his friends when he's not around.   He also love to help out other kids with medical issues... he had a classmate with severe autism and Noah was the only one who could help him do what he was suppose to at school or calm him down sometimes.   He's still an amazing kid ....albeit a drama king, but he is amazing non-the-less.....