Welcome to our journey!

If you are new to our blog, you may want to start with Beginnings - Part 1 and Part 2 to catch you up to speed on Jackson's arrival on December 11th, 2010 (yup, 12/11/10).

Monday, January 31, 2011

Tough little man...

As I sit here listening to Jackson's snores, I can't help but think about his future and his health.  I have read numerous accounts on what type of delays Jackson may have, but still think that he is going to surprise people.  I mean, come on, he's already flipped over twice and he's only 7 weeks old.  He's an old pro! 

video



I was planning on posting on Friday after Jackson's evaluation with the Infants and Toddlers program.  I contacted them in hopes of getting him started with early intervention with a physical therapist, special educator and developmental pediatrician...and then they canceled that morning...city schools were closed...some roads are still a mess and parking sucks.  Ok...and poor Adam even had taken off work to be a part of the experience.  Now we have to wait another month before he gets evaluated...I guess you can't complain too much for a free city service.  Jackson and I will keep practicing lifting our head and flipping over so we'll be ready to impress them come February 24th. 




Today we visited the doctor to get a special shot for Jackson...but let me back-track for a minute.  Due to Jackson's low birth-weight and heart condition, our pediatrician wanted him to get a shot that would protect him against RSV (Respiratory syncytial virus).  Now, RSV in an adult and typical child is nothing more than a cold, but in some babies can be severe and require hospitalization.  So this special shot also happens to cost thousands of dollars and only protects him for a month at a time...so if you get the shot each month starting at the beginning of RSV season, you could spend thousands of dollars (we were told the shot would be a minimum of over a thousand bucks PER SHOT...the most $4500/shot)...unless of course your insurance covers the shot.  Theoretically, Jackson is a prime candidate for the shot due to his condition and we were assured that Jackson would most likely be covered.  So you can imagine our surprise and disappointment when the insurance company not only denied the claim once...but denied the appeal that was made by our pediatrician.  We were even told about another baby just a few days apart from our Jackson with almost the exact same heart condition and Down syndrome who was approved right away (they had federal BCBS).  A few thoughts here...we had already received his first shot at the end of January, so we were just waiting for that dreadful bill to come in the mail.  We also struggled with what to do about the next shot.  If we don't get it for Jackson, are we bad parents?...But if we do continue to get the shots we will go through a significant portion if not all of our savings.  But what if he gets sick and requires hospitalization...how horrible would we feel if we didn't protect him against something because we didn't want to shell out the big bucks.  Gotta love how our insurance dictates how we care for and protect our child's health.  It makes me fee like this...



In the end, we decided to skip the shot.  We decided to play the odds and avoid crowds and germs...and then we got a call from the pediatrician... they had "leftovers" from another patient that could not be returned to the company that produces the shot.  They wanted to offer it to Jackson...at no cost!  And guess what...turns out that the original shot was "leftover" too!!!  Some things just seem to work out in the end and at least he's protected for another month (and we can keep a few thousand dollars in our pockets)...and we are jumping for joy!



So today he had his appointment to receive his special shot...and managed to pee all over the table in the doctor's office...twice.  When we finally were cleaned up, we did the weigh in and little pork chop weighs 10 pounds even.  He has doubled his weight in 7 weeks!  I am quite happy that the little one had an appointment today since he cried so hard this morning while I was sucking big boogies out of his little nose that he burst blood vessels all over his forehead!  At least that's what I think happened.  The doctor had the nurse do a CBC (Complete Blood Count) to insure that he did not have low platelets which could indicate an autoimmune disorder.  Our pediatrician said the blood work looked great and as long as we didn't see it over his entire body, he was fine. 

Little popped blood vessels



I don't know how other babies do with blood draws, but Jackson is a slow bleeder.  We tried to have his blood work done twice before coming in to the office today.  It seems to clot quicker than they can get the sample drop by drop into these little vials, making it very difficult to get results, require multiple heel sticks and thankfully a very patient baby (with a few cries post-stick).  They did manage to get some results from his thyroid screening and his TSH (thyroid stimulating hormone) is elevated and our pediatrician will be consulting with a pediatric endocrinologist to see if we need to act on it.  Hypothyroidism is common in babies with Down syndrome so our pediatrician feels it may be a matter of do we start treating him for this now or later...we should know by the end of the week what our next move will be. 


Heel stick and toe stick

So all-in-all, our little pork chop is doing just fine.  With only a few tears, he showed how tough he is...just needed a few cuddles and some sucks on his pacifier and he was just fine!  As I finish typing, he's beginning to stir, so I know its just a matter of minutes before he ever so nicely tells me that its time to eat again.  So on that note, I'm going to try to straighten up the kitchen in those few minutes that remain...and perhaps after we eat, I may just get a shower in...


Sunday, January 23, 2011

Christmas

It didn't feel like Christmas this year.  Both Adam and I expressed these feelings along with my dad.  It just didn't feel like it this year.  We had the Christmas tree up...I decorated around the house placing little trinkets around the house (the only time I allow myself to have knick-knacks all over the place), but it just didn't feel like Christmas. 

Perhaps it was the unexpected early induction...the week stay at the hospital...the monotony of my days with feedings, changing diapers, and more feedings...but for some reason it just did not feel like Christmas.  When the fall came, the one thing I kept saying was that I hoped Jackson would come before Christmas and I'm so grateful that he did even if that Christmas feeling was missing... 

So grateful to KC for the beautiful photos of our Christmas gift.  Check out his site at: http://www.sevensetstudios.com








Our little blessing under the tree



While the Christmas spirit seemed to skip our house, our home was still filled with love and generosity.  Jackson has been welcomed into this world with open arms by our amazing friends and family and this has truly made all the difference in our lives.  

Friday, January 21, 2011

Jackson's birth story


And then the ultrasounds began...our biggest concern was whether there was a heart defect.  When the heart looked perfect, we breathed a deep sigh of relief.  No physical markers at all...baby now has at least a 90% chance that he is normal...however, the ultrasound showed an umbilical vein varix, an extremely rare condition, where the umbilical cord is dilated and could cause distress in the baby if improper blood flow occurs.  I then had to get weekly monitoring of the cord.

On December 7th, I had my weekly monitoring after work.  I sat in the chair with the fetal monitors noisily tracking Jackson's quick heart beat, checking for dips and rebounds.  The ultrasound went smoothly, just as it had the previous weeks of screenings.  Jackson was doing just fine...I left the hospital prepared for next weeks screening.

First thing, Dec. 8th, I see that the hospital had called.  They had just ran the numbers again and noticed that the blood pressure in the cord was elevated.  They had tried to catch me prior to my leaving, but missed me...Give them a call.  I immediately called them and the doctor said that he wanted to check the cord again and didn't want to wait till next week to check it.  We scheduled an appointment for first thing Friday, the 10th.  

Adam and I joked around about packing the bag and bringing it with us to the hospital.  Just to be on the safe side, Adam rearranged his travel schedule so that he would be able to come with me to the hospital.  In the end, we prepared ourselves to go to work after the appointment, including my leftovers that I would bring to heat up for lunch and my papers that I needed to grade.  We arrived for our 7:30 appointment, I laid back on the table, and the technician clicked away.  A few minutes later, the doctor came in and asked "Did you bring your bag with you?"  I responded with, "Should we have?".  The umbilical cord's blood pressure was even further elevated and he didn't want to risk harm to the baby.  Moments later we were escorted down the hall to labor and delivery after making a few quick, excited phone calls to work, parents and my sister.  

Its amazing how quickly things happened.  Next thing I know, I'm in a hospital gown, tube inserted into my hand to be ready for an IV, and excitement and a surreal feeling knowing that soon our baby would be here and our lives would be flipped completely upside down.  


At 10am, the doctor came in to insert a drug to prepare my cervix for induction.  I would have to lay in bed for 12 hours to let that do its magic and there was a likelihood of having to do a second round of the drug.  The earliest I would get pitocin would be 10o'clock at night...which could make for a very exhausting evening, but there was a good chance that I wouldn't get pitocin till the next day.  

Once the drug was inserted, I wasn't allowed to get out of bed unless I had to use the bathroom.  Quickly I noticed menstrual-like cramps that showed that my cervix was getting itself ready for labor.  Fetal monitor was strapped to my belly to keep track of Jackson's heart rate and my contractions, and then it was a waiting game.  Thank goodness for a House marathon to kill the time...and my cell phone with downloaded games.  I knew that it was going to be a long day/night, so I tried to get some rest which is pretty impossible with the monitor and the cramping sensation in my uterus.  We were told that it was going to be quite a while before anything was going to happen, so Adam went home to get our things and I counted the minutes until he returned.  




Hours passed, cramps continued... My in-laws and sister dropped by to check in on us.  At this point, the cramps were getting worse and I was doing my best to hide my discomfort.  I don't know how long they stayed, but shortly after they left, the cramps magnified...and I was glad they weren't there to witness it.  Adam was doing his best to comfort me as the cramps were no longer cramps but were very irregular contractions.  I always expected that you would have a contraction and then have a break (even if it was a short break to recover)...but the contractions were so irregular that it seemed like I was having a constant contraction.  At approximately 8:30 the doctor came in to check my progress.  I was 2-3 cm dilated and progressing nicely.  Just an FYI...no one tells you how badly it feels to have someone check your progress.  That felt worse than any of the contractions and I would try to lift myself away from them when they would check me.  Right after they checked me, I felt a wet trickle leaving my body and told the nurse that I thought my water had broken.  They removed the inserted drug and let my body take over with contractions.  Once my water had broken, the contractions grew more and more intense, each one causing me to grip the side of the bed and try to remind myself that this was a "good pain".  I asked the doctors when I could get an epidural...something I wasn't sure I was going to want.  At that point they said I couldn't have it...but very shortly after they said I could.  The epidural was a blessing.  I don't remember if it hurt much to have it inserted because you are concentrating on trying not to move while having contractions...but I was so grateful to have the epidural and be relieved from the pain.  Once the epidural was in, we were told to rest. 

An hour and a half to two hours later, I was still awake while Adam slept deeply on the pull-out.  I wanted to sleep, but had a strange desire to move my leg which felt very heavy and was difficult to move due to the epidural.  I kept a watch on the heart monitor and my contractions and when Jackson's heart dipped and did not rebound, I knew it was a matter of moments before the nurses came in to check on him.  Two (or maybe three people) came in, helped me to rest on my side to see if Jackson's heart would rebound.  No change, so they switched me to the other side...still no change.  Then they inserted a heart monitor to the top of Jackson's head to see if they could get a more accurate reading of his heart and it was still very low.  At this point, they helped me flip over onto all fours, gripping the top of the bed as a last resort to get his heart to jump up.  Still nothing... I was only 7 cm so I was not ready to push and the rush began.  People began to move much quicker, an all-call for people to report to the OR and they quickly rushed me down the hallway to the operating room while poor Adam, confused from grogginess, was told to get scrubs on and to wait in the room till someone came and got him.  I had already been on oxygen for the last few hours to help get oxygen to the baby, so they gave me a full epidural to numb me completely and Jackson was out within minutes.  I don't pray very often, but I kept repeating in my head, "Dear Lord, please get him out alive."  His soft cry brought tears to my eyes and relief.  I have never heard something more precious in my life.  The minutes went by so slowly as I waited to see my baby.  I was only able to see him for a brief moment and kiss him goodbye when they closed me back up and wheeled me to the room to let the epidural wear off.  I laid in bed, shaking uncontrollably from the epidural, anxious to kiss and snuggle with the new addition to our family. 




Once the epidural wore off, we were wheeled down to postpartum.  They brought Jackson in to see us and I was able to hold him for the first time.  He was so tiny, 5 lbs, with beautiful blond hair and blue eyes.  Adam and I looked for signs of Down syndrome and while there were no major signs, you could see it slightly in the eyes.  I think I knew right then that he would have Down syndrome.  I tried unsuccessfully to feed him, but cherished being able to hold him and keep him close to me. 

A few hours later they took Jackson away for tests.  We expected him back in a couple of hours, but those couple of hours turned into multiple hours, with us wondering what was happening and when we would see him again.  The doctors came in and out, gave us the details of how the baby was doing.  Yes, there are some signs that he has Down syndrome although he is missing some characteristic signs.  He has an ASD (atrial septum deviation) and a murmur.  He had pulmonary hypertension.  We received a ton of information, most of which I missed...and I just wanted to see him again.  We were able to see him one more time before they took him away...And since he wasn't feeding they had to put a tube in his nose to feed him.  Then they sent him to NICU.  The whole time I felt this surreal feeling.  I had a son with Down syndrome.  Brief flashes of images of what might our life be like, things Jackson might miss out on...but those sad or shameful feelings would melt away when we looked down on his beautiful face and held him close to our heart. 

I know this won't make sense, but those days in the hospital were some of the longest yet quickest days.  It seemed we would walk down to NICU, feed and hold him, tell him we loved him, go back to our room only to make the trek down just minutes later. 



While Jackson was technically "full-term", he behaved like a preemie.  He had a low birth-rate, was hypothermic, and was having bradycardias where his heart rate would drop because he would stop breathing.  The one thing that was going smoothly was that he was feeding fine on Day 2. 
Every three hours we would scrub, get gown and gloves on and visit with Jackson.  I can't tell you how hard it was not to touch him with bare hands...I just wanted to feel his skin directly under my fingertips.  

Jackson spent 1 week in the hospital.  He spent the majority of his time in the isolette that would regulate his temperature since he couldn't do it on his own. Every time we visited, we checked the thermostat to see what temperature they had him at.  Each time we hoped for a reduction that would show he was one step closer to getting into a crib and another step closer to coming home with us.

December 17th...the hospital gave us the boot.  They were down to a couple of rooms so we were going to have to pack up and go home.  Jackson's isolette was down to its final temperature, but he couldn't come home until he had spent 24 hours in a crib at room temperature. 

Before we headed out, one of the doctors sat down with us and confirmed Jackson's diagnosis.  Jackson's blood work confirmed that he had an extra chromosome that caused his Down syndrome.  Part of my last shred of hope slipped away, even though I knew this was coming.  On our drive home to Baltimore, I hid a few tears from Adam, saying goodbye to that last image of a child with 46 chromosomes and sad to leave behind the child that has 47 chromosomes.  

Thankfully, those hours went quickly by...Jackson was holding his temperature and each visit gave us hope that we could take him home soon.
 At 9pm Saturday, the 18th...we finally got our wish.  We took Jackson to spend his first night at home with us.  The entire way home, we pointed out all of Jackson's "Firsts".  Jackson's first stoplight...Jackson's first time on 95...Jackson's first time in the tunnel...Jackson's first night at home...

The news that changed our lives...

It was a very normal day at work when one of my contacts went behind my eye...yuck.  Robin, my co-teacher at the time helped guide me on how to get the little piece of glass out from its uncomfortable position.  With a little effort and watery eye, the contact was removed.  For a brief amount of time I had only one contact it and it made me slightly nauseous.  Robin joked that I might be pregnant and kindly offered to get me a ginger ale.  Adam does not believe me (probably noone else does either), but the night before I had a dream that we were on vacation and were up at the bar getting a drink when a man put his hand on my belly and said congratulations...then I woke up.  I had forgotten about the dream until my brief nausea occurred and at the end of the day went to the store to pick up a pregnancy test...just for kicks.  I could not believe my eyes when I saw those two little lines that told us that our worlds were going to change forever.  I placed the pregnancy test on the counter in a spot where I was sure Adam would see it and became so anxious for Adam to come home and share the news with him.

A few hours later, Adam arrived home, walked right past the counter...was slightly annoyed because I wanted him to go with me to pick up a package at UPS (in a not-so-nice part of Baltimore) and I kept staring at him and trying to get him to look at the counter.  Finally, he looked at the counter and we held each other and expressed our excitement to one another, seeing visions of what the pregnancy and baby would be like. 



My OB scheduled us for a nuchal translucency screening.  It would be our first ultrasound and we were beyond excited.  The technician clicked away at the screen as we sat mesmerized at the images of our developing baby on the screen.  There was the heart, beating quickly in the chest...feet...hands...profile shots... Then the technician left and brought in the doctor.  The measurement for the skin on the back of his neck was high-normal...a physical sign of the possibility of Down Syndrome (or another trisomy...where the baby gets an extra chromosome).  I remember swallowing back tears and hating this woman who ruined what was suppose to be such a memorable and exciting experience as we were shuttled to another room to give a blood sample that would look for protein levels that would in turn give us a ratio that would predict the odds of having a baby with Down Syndrome.  I held back tears through the blood work, walking back to my car with Adam, and when I was safe in my car could not hold them back any longer.  I remember calling my sister and parents who assured me that it would be fine and that the baby would be okay.

I don't remember how long the blood work took, but I do remember it was a Friday and I was right around 12 weeks pregnant.  We had told immediate family and some close friends about our pregnancy, and were finally ready to announce it to co-workers and other family and friends.  I received the call at work.  Robin kindly watched my class while I took the call that would rock my world.  The baby had less than a 1 in 5 chance of having Down syndrome.  All I could remember thinking was how this could happen.  I'm a Biology teacher and we always talk about how this is more common in older woman...I was only 29...this couldn't be possible.  The doctor wanted us to consider get a CVS (chorionic villus sampling) but it would have to happen ASAP or wait to get an amino done later.  Somehow I made it through that discussion and hung up the phone, hiding in the office until that final bell rang so I wouldn't have to face any teenager.  The bell rang and I walked back to my classroom where I told Robin the news in between tears and struggled breath.  She took a piece of paper and wrote 4 in 5 chance of not having Down syndrome.  80% chance everything would be fine...

I believe I called Adam at work...I couldn't wait for him to get home.  I cried all the way home...cried as I called my sister...cried as I called my mother.  I was suppose to go out to dinner with a group of my girlfriends where I would get to officially announce our pregnancy to those that we hadn't had a chance to tell since we wanted to tell people in person.  I didn't know how I would go to dinner and be able to enjoy myself and not dwell on what felt like a death sentence.  I called Jenn and told her that I wasn't going to be able to make it and asked her to tell the others what happened.  She, like everyone else, assured me that that baby would be just fine...

Adam and I spent the evening talking, being sad, and discussing what would happen if the baby would have Down syndrome.  I felt ashamed...that I had let Adam down...that I wasn't going to give him a "normal" child.  Visions of the baby that I wouldn't have haunted me... Being a teacher and watching how cruel some teenagers could be made me sob with worry about how others would perceive our child.  Would he have friends?  Would he play sports?  Would he be able to communicate with us?  How would I tell people?  All the unknowns terrified me as I mourned the loss of the baby that I thought we would have.  Then the guilt of wanting that "normal" child would set in.  The next day was Father's Day.  We were suppose to go to my in-laws to spend time with family and I just couldn't get out of bed so Adam went without me.  I couldn't escape my mind and spent the day crying into my pillow.  By the end of the weekend we had made a decision...no CVS for us...it felt too rushed.  It was never once an option to terminate... and we initially had said that we wouldn't do an amino since it wouldn't change anything for us...but then those numbers were given to us and we just had to know for sure.  We did research... I asked questions of the doctors... how many amnios do they do each year?  What is the rate of miscarriage due to the amnio?  After all was said and done, we opted to get the amnio done the week before we left for a 2-week vacation in the Outer Banks.

Prior to the amnio, we had an ultrasound to locate the best spot to insert the needle.  They asked us if we wanted to know the sex of the baby and shared with us that we would be having a beautiful baby boy!  I was so excited that Adam would have a son.  I've watched the connection and bonding that Adam and his brothers have with their own father and wanted that for him as well.  Such excitement on top of such an intimidating procedure...An amnio should give a 100% determination of whether the baby would have Downs...and we would get to find out the sex officially!  "Should" being the operative word!  They placed that large needle into my belly and pulled back the plunger...and nothing.  Pulled the needle back out of my uterus and pushed back in to reposition...and nothing.  Took the needle out and got out a new sterile needle.  Inserted the needle into my belly and same thing...a repositioning...nothing... The doctor looked mortified while Adam looked like he was going to lose his mind.  This had never happened to her.  They called it a dry tap and said we could come back in a few weeks to try again.  Something came over me and I just let go...we weren't meant to know yet.  For some reason, I was at peace with it.  We turned down the option for another amnio but opted for additional screenings (ulrasounds) that would look for physical markers of Down syndrome.



We went on vacation...it couldn't have been better timing.  We spent two weeks with family, relaxed and laughed with each other.  I left for vacation fitting in my clothes and came back 8 pounds heavier...a
 wonderful vacation.