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!|
|Taken 2-3-02 ... after being removed from the vent. That is TY Beanie Bear HOPE with him.|
|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.|
|Tiny hands .....|
|And TINY feet ....|
|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|
|Age 5 - in the NICU with his little brother|
BLOG REVISIT: 4-24-12 .... Noah is now 10 years old!
|2-1-12 ... Noah's 10th Birthday ... with Treasure Buddy|
|Significant hearing loss in his left ear has given the need for a hearing aid|
|With a broken nose, summer 2011|
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.....