10 weeks old...wow time flies!

Jackson is growing so quickly these days.  Here are some pictures of the little man...he has a kung fu grip in his play gym, a cute big boy outfit, and his adorable little feet!

Insurance Company: The Empire Plan: United Health Care

It is incredible to me what insurance companies will deny payment for when it comes to the heath of yourself and your child.  As of right now my insurance company has denied to pay 80% of Jackson's abdominal surgery because they believe that the doctor charged too much for performing the surgery compared to other surgeons in the area.  Upon calling them they repeated this statement to me and pretty told me that I should have shopped around for the cheapest doctor to perform Jackson's surgery.  Can you believe this?  Shop around for the cheapest surgeon to do my son's surgery instead of the most experienced, recommended surgeon?  I am in the process of a written appeal for this cost...I will be letting them know that I keep a blog.  And that they can find a bunch of mothers on babycenter and Facebook where this information will be posted about our situation.  I will keep you all posted about what happens next.  Just note that I have to call the insurance company at least once a week to have claims reprocessed!

hmmm, I think I would like a...

So Jackson and I went to the mall just to walk out of the cold, however, it was really crowded and it was hard for us to walk for exercise.  Then I saw Santa and said, "What the heck."  Here is our first picture with Santa Claus!!

Here are some of our professional Pics!

Jackson and Jesse were both really good boys when we took our first family pictures!

HAPPY HOLIDAYS EVERYONE!

Here is Jackson's recent photo shoot  at home with mommy!!

Around the lake

It was such a nice day today...Jackson and I walked all the way around Skyline Lake...it was a great exercise and the hills were killer pushing a stroller.  I had to take a couple rest stops but over all we did it in an hour...I am shooting for a little less next time around. 

Neonatalogist Follow Up

Today Jackson met with Dr. Mangenello his neonatalogist...everything was perfect!  Infact, we do not need to see him again unless we notice any problems...WOW. Here is a recent pic of Jackson.

1 Month Pediatrician Appointment

Today was our one month pediatrician appointment!  Jackson is now 8 lbs and 3 ounces and 20 inches.  Jackson is doing great and in the words of our pediatrician, "He is a totally normal kid with a little zipper on his belly."  Jackson is changing day by day, he is really getting big!  Now if only he would sleep more at night than during the day!

Uncle Ian

Uncle Ian holding Jackson for the first time!!

Here is Jackson and I in our walking gear yesterday!

Walking in the Bjorn!

Today we took a short stroll around the block on our Bjorn for the first time.  Jackson seemed to really like it and was very comfortable.  After our walk Jackson went in the swing and he is watching the animals above his head and looking in the mirror.  WOW he has changed...tomorrow is Jackson's one month pediatrician visit.  This should be exciting!

Growing leaps and bounds...

Jackson is getting bigger everyday...his face changes and I notice every little thing about him the more I study him.  Yesterday we saw the pediatric surgeon and he said his scar was looking great!  We are going back on two months for another check up.  The in home nurse came again and he was one pound heavier than he was last week (according to her scale).  Jackson now weighs 7 lbs 12 ozs.  We see our pediatrician again next Tuesday when Jackson will be ONE month old!  Time flies!!

First taste of the outdoors

Yesterday Jackson, Chris, Jesse, and I went for a walk around the neighborhood and to the park down the road. Jackson was asleep for most of it, but it was still exciting!

Meeting the Grandparents!

Jackson got to meet all of his grandparents in a matter of a week...how very exciting! Now we just need Uncle Ian to hold him for his picture opportunity!

New Pics...

HOME!

Is this a RECORD? Home in 12 DAYS!!

Well for those of you who do not know, Jackson was released last Thursday and brought home after only 12 days of being in the NICU! It has been overwhelming, incredible, and scary all at the same time. Jackson is doing great, he eats well and has already gained 8 oz since his release date (as per the pediatrician).

I cannot believe that he is here with us, he actually made it home before his due date! Words cannot describe what it feels like to be a mom, how incredible it is, exhausting it is, and how beautiful he is...

Getting Better day by day

It is truly incredible how fast Jackson is getting better. The doctors said they have never had a baby that has gotten better so quickly in the unit, he is truly a miracle baby. My husband and I have learned that they do NOT like to give you a day when you will be bringing your baby home no matter how many times you ask them, but I can tell it is getting closer.

Jackson is breast feeding (which has been very difficult for me because I am not producing enough milk for him to eat and I have to supplement), being moved to an open air crib, scheduled for his circumcision, and we were asked to bring his car seat in for his breathing test. All NICU babies have to have a 2 hour test in their car seat to make sure they can breath with out strain before they are able to come home.

Here are some recent pictures of Jackson. As of today Jackson is on no IV fluids, foods, or medication of any kind.

The hardest thing I ever had to do...

On Wednesday 10/21/2009 I did the hardest thing I have ever done in my life. I left my baby in the NICU as I was discharged and told to go home. I cannot explain how I felt that day...how hard it was to say good bye and kiss his head and know that I wouldn't see him again until the next day. Although I was ready to leave the hospital I was NOT ready to leave my baby.

As the days have gone by, it has gotten a little easier. I have learned that I cannot stay there all day because it will drain me and it will be even harder for me to heal if I do not take care of myself. All the same when I have to leave my heart is heavy as I kiss him good bye and tell him that mommy loves him.

GREAT NEWS

I just went to see Jackson at around 5:45 a.m. The nurses told me that he pulled his ventilator out at 3:30 this morning and he has been farting and pooping!! Like mother, like father, like son! YES!

The Surgery

The first picture is of Jackson right when he was born with his omphalocele (about 4.7 cm around). The picture underneath is Jackson right after surgery, the same day.

About an hour after Jackson's birth he was taken in to see Chris and I in my recovery room so we could hold him and kiss him, then he was off to surgery.

It took about 2-3 hours to complete everything but in that time the pediatric surgeon was able to put all the contents that were inside of his omphalocele into their rightful spot.

Jackson is doing great! He is breathing really well (so his ventilator will probably come out today unless he ripped it out of his mouth in the middle of the night last night) he is having the two IV's taken out and replaced with a central (pic) line, and he as been off of paralytic drugs and pain medication for approximately two days. Jackson's surgery incision looks better every time I see it and he loves to pee, move and kick, and it looks like he is trying to suck his thumb!

If the ventilator comes out today, we will be able to hold him for the first time since before the surgery...that is ALL I want to do, I want to hold him and hug him and kiss his beautiful hands and fingers and toes.

The doctor said we can expect Jackson to be here for about 2-6 weeks, we are basically waiting for his organs to understand that they are inside of the body now and begin to work on their own. We are anxiously awaiting a poop because that is a sure sign that his bowls, gut, and intestines are getting into their groove. The nurses yesterday said they heard sounds from the lower region of his abdomen, so it is now a waiting game. Everything else is fine on and inside of him as of now...in fact, I am going to go right now to see him!!

Welcome Jackson Christopher Harris!! (This may have TMI for some of you!)

Jackson was born on October 17, 2009 weighing in at 6 lbs 12 oz and 19.5 inches long. He is so adorable, incredible, and I cannot believe that he is ALL mine! What an incredible feeling it is to go into the NICU and see him and know that you made him for 9 and a half months in your belly...WOW, there are no words to describe it...just like there are NO words to describe what labor/c-section/spinal block feel like too.

At approximately 3:33 a.m. I awoke gas pains (or so I thought) and went to the bathroom to try and relieve myself of the dull pain. After going to the bathroom (YES, I mean having a BM) I went back to bed and tried to sleep some more, then to the bathroom again in hopes to feel better, then back to bed where I finally turned on the TV in hopes that I would fall asleep and wake up feeling better. That did not occur. At 5:50 a.m. I went upstairs to my husband (as many of you know I sleep on the couch now for comfort) and told him that we needed to call the doctor. I said, "Honey, I have been having these really uncomfortable gas pains for a little over two hours and nothing is working to get rid of them, can you call my doctor?" Then off I was to the bathroom to try and relieve my self again, NO HELP!!

We talked to the doctor, my husband told her I was just having a dull pain that didn't subside and that I thought it was gas...it didn't get worse, it didn't fluctuate, and my stomach wasn't tightening. Cris (mid wife) told me to take some mylanta or mylacon and go into the office at 9:00 a.m. and get put on the fetal heart monitor and contraction monitor just to look at what may be going on. No problem I thought...but I was also thinking, "How are they going to get rid of this gas for me? Are they going to have to pull out a lodged Lincoln log from my pooper and this gas pain will go away?" Needless to say the urge to have to poop really bad was still there so I went to the bathroom and actually did that AGAIN. From that point on, the pain began to intensify and I was having dull gas pains, then full on sharp pains. I looked at my husband and forcfully said, "I cannot wait two more hours to go to a doctor, can you call her back and tell her that the pains are starting off dull and then get strong and go back to dull?" With that phone call I was told to come into the hospital...and at that point the sharp pains began to be so intense that I was moaning through them, breathing heavy and shallowy and I was losing the ability to think straight. Chris was about to start brushing his teeth when I screamed, "WE do not have time for you to do that...we need to leave NOW!" Mind you I still thought I was having some sort of gas issue where a tube up my pooper at the hospital was going to fix this issue and off I would go.

We fired the GPS because yes folks, this weekend we were going to map out our route to the hospital and we were OFF. Chris was driving a little faster than normal he called my mom just to let her know what was going on and then we were on our way. I was breathing deep and hard and I began timing on my iPod the length of these "gas pains" just in case they really weren't that...because haven't you ever been moaning and screaming when you were constipated? : )

When we arrived at the hospital I was dropped off at the emergency room, Chris parked and we were up to labor and delivery, me in a wheelchair...YES folks I was still in denial.

Upon arriving they put me in the bathroom asked for a sample and gave me a gown. I had to moan through another gas pain to get it and then I saw blood in the urine. THAT is when it hit me, I looked at Chris and I said, you only have blood in your urine when you are going to have a baby.

The 5-8 incredible people nurses, anesthesiologist, doctors, mid wife, intake people began firing questions to both Chris and I. As this was going on they shaved me ( I did have an appointment that day to get my bikini line waxed) and checked my cervix. The nurse exclaimed, "She is 10 centimeters dilated and fully effaced!"
The anesthesiologist said, "I do not know if we are going to have time to give her a spinal, she may just need to be put under general."
Chris and I looked at each other and mouth "OMG!!" As more questions were fired and answered, the mid wife came in and checked my cervix, she said, "Ok we have a little time, she is 6 cm dilated and fully efaced, we need to work quickly."

We arrived at the hospital at around 7:34 a.m. and Jackson arrived at 8:46 a.m. The people nurses, Cris (my midwife) and Chris (my husband) were incredible, they helped me moan and breath through my contractions, tried to keep me calm, and kept me aware of everything was happening to me. I was able to have a spinal (THANK YOU anesthesiologist I wish I could remember your name) it didn't hurt...and we had our incredibly beautiful baby boy.

Work is offically OVER!

Baby Harris dropped during the night while I was sleeping on Saturday and ever since then I have been able to breathe a lot better but have been having intense heaviness in my pelvis. Ever since then the baby has been moving around A LOT!

Yesterday I went in to work to conference with my students, I really wanted to meet with all of my students personally before my last day on Friday. I sat most of the time and was really excited to see how well they were doing in writing their essays.

When I got up to go to a meeting I began feeling very sick to my stomach and just an all over uneasiness. I called my doctor and went in to see them right away. While I was there I began losing my mucus plug and after an exam I was told that I was dilated a little and my cervix was thinning out. I was put on the fetal heart monitor and the baby was doing great and I was not having any contractions. They told me to keep a watch out for how I am feeling and that if I have any contractions at all to call them ASAP.

With that being said, work was ended for me to rest and get ready to have our little boy. WOW, it feels really REAL right now! I cannot believe it!

Today I feel really well, but I haven't done anything but watch the second season of Dexter on Netflix...I guess rest really does do the body good!

Being 9 months pregnant is really a lot harder than I ever would have thought! You truly cannot understand unless you have been at this point!

37 Weeks today...

I cannot believe that I am 37 weeks today, it feels like this pregnancy went so quickly and now it is ambling at a speed slower than a snail travels. I have been told that at this point you are just ready to give birth and be done with being pregnant. I can safely say that I have mixed feelings about that...I am ready to have my body back and sleep in our bed on my stomach...but I also know what once he arrives we will be tossed into a storm of unknown. The unknown is the worst part, when will he have surgery, will he need more than one, what will insurance cover, when will be be able to bring him home? No one can answer any of these questions until he is here and that will be in 1 week and 6 days. I am very impatient but at the same time terrified to hear the answers to all he questions that are unanswered.

Rockland Baby Shower

What a great time was had on 9/19/09 at my Rockland baby shower. We had great food (thanks Mom), great people and great games (Thanks Danielle and Jill for everything). Thank you to everyone who came to celebrate Baby Harris and me...here are some pictures from the event!

Put a Fork in ME, I am DONE!

So nothing fits, I have terrible heartburn, and everything is annoying to me. Put a fork in me I am done...36 weeks and 1 day today...2 weeks and 5 days until Baby Harris is here!

4 weeks today!

Wow time flies. It is officially 4 weeks from today that we will be meeting our little boy, I cannot believe it!

My last day of work in October 16th so I can relax and get myself ready for this event called birth. My emotions/hormones are running wild. Pretty much everyday on my way to work I hear a song that makes me cry, thinking about the baby or how much I love my husband. I have been driving around in my new family car with the carseat in the back and although it is weird, it feels like it is supposed to be there.

Chris and I are excited, scared, and ready to meet the challenges we are about to face...I think : ). I know I feel ready, and empowered by the fact that I am so knowledgeable about what is going on inside of me and with our baby. I am thankful that I had people to talk to online who have gone through the same thing and have advice for me and suggestions. We are thankful to have such a supportive family who have been by oursides when we were ready to talk about the diagnosis.

Ok enough of that...what you have all been waiting for...here are the latest sonogram pictures of the little man!!

Date change!!

Okay, don't get too settled on October 23 as the birthday. Today I had an OB visit (he listened to the heart beat and it sounded great!). The pediatric surgeon wanted to change my c-section date to October 22, 2009 so they will be able to have more access to operating rooms on Thursday and Friday. The doc said something about it being hard to get an OR on Friday afternoon?! Who knows...so NOW our little boy will be born on October 22, 2009. 6 weeks and 6 days away!!!!!!!!!!!!!!!!!!!! Holy COW!!

This is me in my new kitchen, that is almost done...check out that dishwasher!! I am 32 weeks today!

It's Official

Well ladies and gentlemen...it is official. We are having our c-section on October 23rd at 7:45 AM at The Valley Hospital in Ridgewood, NJ. It is only 8 short weeks away...holy cow!

29 week sonogram at Maternal Fetal Medicine

Yesterday we had our every 3 week sonogram at Valley Hospital's Maternal Fetal Medicine. Everything was looking good, Baby Harris was measuring at what he should be, he is about 3 lbs, and again, the omphalocele has not really changed. This means that it has stayed roughly the same size for about 9 weeks...that is GREAT news. In fact, the doctor came in to talk to us after the sonogram (when you go to MFM, you get your sonorgram by the technician, the doctor reviews the sonogram and then comes in to talk to you about what he/she saw and possibly does another sonogram just to see things for themselves). She said, from what she could see the omphalocele seemed to be staying pretty constant even as the baby grows bigger and she said, "I don't want to get your hopes up, but it actually looked a bit smaller." WOW!!

Ok, she said not to get my hopes up, but as a parent who has been going through this for approximately 4 months I am going to be very happy about this news. As usual, he wasn't totally cooperative during the sonogram, but what is new?!

PASSED!!

I got the phone call I have been waiting for since yesterday! I passed the 3 hour glucose screening test...YES! RUNTS here I come...kidding. Actually the results from the one hour screening scared me and kicked me into high gear...I have been eating better and exercising at least 3 times a week. I do a prenatal yoga DVD and Denise Austin's Fit and Pregnant DVD. I even put some more in my Queue on Netflix so I wouldn't get bored and stop exercising.

28 weeks...First Baby Shower

Well I am now 28 weeks and 3 days, things seem to be going fast. I just did the Denise Austin Fit and Pregnant workout...it was good, tomorrow I will do the yoga CD that I bought. I figure I have to spice it up to keep me motivated. I plan on doing the 3 hour glucose screening this Thursday...can't wait!!

Here is a new picture of me at 28 weeks 1 day with my fabulous husband and a picture of the cake for the shower Chris's mom threw for me this past weekend 8/9/09. Good food and good people...very nice!

Glucose Tolerance Screening...

Well ladies and gentlemen...I got the results via private voicemail that my one hour glucose tolerance screening was abnormal ( I do not know what the number was as they did not leave that on my VM)...UGH, I mean really, can there be anything else that could go wrong?! I need to be honest...I haven't been exercising as much as I should be these past two months and RUNTS have gotten the best of me, so I probably should have expected this but I didn't want to think about it. NOW I have to take the 3 hour glucose screening...can't wait for that to occur.

I did a prenatal yoga CD yesterday, I guess I better start doing that everyday!

Third trimester...YIKES!

Well, I am now officially in my third trimester and I cannot believe it...my husband and I look at each other and feel like the time has gone by so quickly! We will be having our baby in approximately 11 weeks and some change...holy cow!

Yesterday I put my iPod to my belly so the baby could hear a little Black Eyed Peas and get his groove on, with a mom as a dance teacher I just have to get him listening to music and moving around...I read that he may move to the rhythm of the music, I didn't really feel that, but I am not going to give up trying.

Tomorrow the new carpet in the baby's room and our room will go in so we have to clean out whatever is left in there...and then put everything back once the carpet is in place...I guess we will be able to put the baby's furniture in after Monday too. WOW!!

Neonatalogist

We met with a neonatalogist yesterday at The Valley Hospital and although we were feeling extremely confident and ready to take on our son and all of his nuances...the doctor we met with made us feel even better (if that is possible). The first words out of his mouth were, "This can be fixed." It is overwhelmingly encouraging when a doctor doesn't feel like they have to point out the "buts" and starts off positive from the start. Of course it was hard to hear that your son may be in the hospital for weeks, but during the course of this journey we have always been aware of the "time tables" omphalocele babies have in hospitals.

Every time we meet with a new specialist the tears form in my eyes and no matter how hard I try to stop them two or three inevitably trickle down my face, but this time it was because of happiness. One of my fears when giving birth to our son was that right when he was born, I would not get a chance to see him, that he would be whisked away to the NICU with no contact to his mother or father...yesterday the doctor dispelled this notion. The doctor told us that we will be able to touch him right when he is born, and once is is cleaned and a sterile cloth is placed on the omphalocele will be able to give him a kiss, possibly hold him for a second and take LOTS of pictures...my husband even asked about cutting the umbilical cord and that is totally available as long as it will not interfere with the omphalocele. All of this information meant so much more to me than I am sure the doctor knew...with all the doctors and specialists I see I never know which doctor I should be asking which questions, and finally I feel like ALL of my questions have finally been answered as best as I know they can be at this point.

Baby Harris we are ready for whatever you are about to bring to us...the great, the scary, and the love!!!

26 week Sonogram

We had our 26 week sonogram yesterday and the baby is looking great! He is about 2 lbs and his omphalocele has not gotten any bigger than is was last time, which is about 3 cm. As ususal the little man did not want to cooperate with the sonographer (no surprise to me) and she was shaking my belly, pressing on my belly, and even at one point had my table tilt head down so I was almost standing on my head...but to no avail would the baby move into a position where they could get a better picture of his brain...oh well, I guess he really is like his father and I. Baby Harris either cannot sit still or just wants to sleep! Here is a picture of me at 26 weeks...belly and ALL!

Glucose Screening

OK, well people warned me how gross the slurry is that you have to drink to take your glucose screening test...but the fruit punch flavor is pretty tasty...and if you bring something to read that hour you have to sit there and wait before they take your blood goes really fast! I admit...I drive about 25 minutes from my house to go to a specific Lab Corp because the woman who takes your blood is funny, charming, and doesn't hurt one bit when she puts the needle in...and for me that is worth the drive!

I feel BIG!!

So here are the lastest pictures of me at 25 weeks and 1 day...I hear mixed things from people like..."WOW you are big, I don't think I ever got that big." HA! Gee thanks, that is such a nice thing to say to someone isn't it?!! And, "You are just belly, your face looks totally normal..." You be the judge...however, do not judge the hair, I didn't style it that day!

Last of the genetic testing is in...

On Monday my husband and I got the last results from our genetic testing...the Beckwith-Weidemann syndrome. They all came back negative!! Our genetic counselor was instructed to only call my husband because I didn't want to be the one who has to always receive the news, but she was so excited she called my husband and me right afterwards to tell us! I feel like we have jumped another hurdle!

Pediatric Surgeon

My husband and I met with the pediatric surgeon yesterday. Thank goodness my husband was there because even with the paper in my hands that listed about 10 questions...I still lost my sense of coolness and tears welled up in my eyes and he had to take over. The answers he gave us to all of our questions were great and he was completely full of himself when talking about doing the surgery...and I mean that in a good way. I want a surgeon who doesn't think this is a big deal and has done this many times and is very confident with what he is doing...and he was all that...in fact he even told us that he was over in another county doing outreach work in 2007 where he solely worked on children with omphaloceles! That impressed us...I am feeling better and I am off to now make an appointment to meet with the neonatalogist at our hospital too and to get a tour of the NICU. If you are getting ready to meet with the pediatric surgeon...here are the questions we asked (Chris's cousin who is a pediatric emergency physician helped us with a couple of these as well):

1) How many omphalocele repairs and what kind have you done?

a) surgery right at birth? #

b) "Paint and wait" method? #

c) If "paint and wait" how many months did you have to wait to pull together the abdominal muscles?

d) Will you know right away which method you would want to use or will you have to wait until our son is born?

2) Is this something you feel comfortable doing because of your experience?

3) What level NICU's are there at Valley Hospital?

a) What do the levels mean?

b) Where would our child start?

c) What determines which level they start and then move to?

4) Will you be the surgeon tending to our son or will there be someone else? If there is a chance that there is someone else can we meet them as well?

5) When should our son be circumcised if he is already having to go through surgery? Should we wait to have less areas with the potential to get infected?

6) Are you up to date on the latest research and procedure?

7) I have heard that "paint and wait" is out dated, what are the methods used now?

8) Is there a pediatric surgeon on call at all times?

Follow up sonogram...

Yesterday we had our 23 wk 3 day follow up anatomy sonogram. Of course I was nervous because I associate the Maternal Fetal Medicine doctors with birth defect news. However, yesterday was quick and painless, infact we were in the waiting room longer than we were in the sonogram room. I saw the last of the 3 doctors at this practice, what great doctors and genetic counselors I have had the opportunity to meet at Maternal Fetal Medicine of Valley Hospital. ANYWAY: the technician did the sonogram, talked to us the whole time, showed us exactly where to look to know that we were having a boy, but truly I didn't really see anything that would help me, and the doctor came in to look.

I asked the doctor what exactly were we seeing in the omphalocele because the last time we were there we were told liver and some intestines...but to my surprise and relief, she said it looks like it is only liver!! She showed us how the omphalocele was very dense and the same color which tells her that it is only liver. To some of you that may sound terrible, but to me...it was wonderful news. I couldn't help but feel a little better knowing that there was more inside of my little man than I had previously thought, and my husband and I celebrated with milk shakes!
Here is a 4D sonogram picture of our little man...I think he looks just like my husband...you be the judge!

Getting Ready...the baby and me

I feel like there has been so much to process and understand about our little boy that I haven't realized how quickly my pregnancy has gone by in such a short amount of time. I am 22 weeks and 1 day today, past the half way point...I cannot believe I am going to meet my son very soon. That being said, my husband and I have gone into semi baby mode...painting the baby's room, purchasing baby furniture and some accessories.

I hunt the clearance section for winter clothes, which by the way is a great way to find really cheap items. I have bought long sleeve onsies and thermal underwear for $1.97 at Old Navy and flannel and fleece one piece outfits for $3.99 at Carters. Shopping off season is definitely the way to go for babies, especially since they are going to out grow their clothing so fast!

As for me, my stomach is growing and therefore my clothes are not fitting. I have gone to the clearance sections of Mimi Maternity and to Kohls for reasonably priced maternity clothes. At one point I even bought some maternity clothes on Ebay, but I did not have any luck with the lot that I purchased. Out of 6 items I ended up only keeping ONE skirt and GoodWilling the rest. I also had the good fortune of having several friends who had babies already and were willing to let me have or borrow their maternity clothing!

For many women being pregnant and watching their belly grow is a joyous occassion and they love every second of it. I will admitt that it is very difficult watching my belly grow, my boobs double in cup size and my butt becoming a shelf. Although I love the thought of my little man growing inside of me, it is still very hard to see my body like this in the mirror. And don't get me started about bathing suit shopping...why do they make zebra striped, plaid, and polka dot bathing suits for pregnant women?!! How about something in a solid color?! That being said, I just have to get past my insecurity and know that in the end this is all worth it and even though it will be a "differernt" kind of birth and beginning of life, it is still the beginning of something new and exciting for both my husband and I.

Father's Day...

Today Chris went and picked up the furniture for the baby's room and is in the process of painting the room with Home Depot's Freshaire Choice (environmentally and family friendly as well as no odor paint) in Charted Voyage...perfect for our water themed room!! Happy soon to be Father's Day Chris! I love you!!

Finally...

When we got our amnio results, the echo results, and told our parents about everything that has been going on...I felt a weight lifted off my shoulders. I feel like I can finally be happy and excited that we are going to have a baby boy!! My husband and I have started planning our nursery, registering, and just feeling my belly as he dances around in there...it has been a long road that I know will be longer once our little man is here, but it feels like we have jumped a hurdle and are just beginning to train with all the information necessary for the next one. Finally...I can be excited about being pregnant!

Fetal Echo cardiogram

Today I had my fetal echo cardiogram...the heart according to the doctor is "perfect." She even said, "Oh my look at that beautiful heart, what a great picture!" I feel like a new person...we got ice cream from the Mr. Softy truck on the way to our car to celebrate, and then I celebrated a little more by buying some cute baby things for our little boy!

20 Week Anatomy Scan

As fate would have it, right after our amnio results came we had our 20 week anatomy scan. This was a crucial part for us because this was where we were going to find out what exactly was in the omphalocele and how the baby was growing.

Ladies...the anatomy scans really do take at least an hour, and about 45 minutes in I had to go to the bathroom again and that ultrasound wand was starting to really annoy me. After lots of prodding and poking and printed pics the scan was done. My husband and I asked for the sonographer to write down the sex of the baby in a card (she also put some pics in there to "show" us it was a boy). After the appointment we were going out to dinner and going to open the card together and cherish the moment when we found out the sex of our baby!

After the scan the doctor looked at everything and came in to talk to us. "Well we still see the omphalocele" NO REALLY?!! I thought..."And everything looks good and normal. Inside the omphalocele is mostly liver and therefore we call it a giant omphalocele." Ok now, I was not ready to hear the word giant!! But I guess after all the 1 in a million things we had already defied I should have prepared myself. I am not going to lie, that was difficult to hear! The doctor also told us that although the heart looked good and was doing everything it should, it was a little more crooked than it should be however, it could just be the gravity of everything being pushed into the omphalocele that was causing it to be positioned like that...so off to get a fetal echo cardiogram, which is par normal for anyone who is having a child with an omphalocele...but that didn't make it any less intimidating for me to hear that!

Amniocentesis...take 2

I guess there is something to be said for the second time around! This time the process was quicker, less painful, and all the fluid needed was collected. I told my husband that when we were in the office I felt like we were rock stars. Everyone knew we were the couple whose cells did not grow...I mean that hasn't happened in 6 years! Everyone gave us a kind smile, told us that they were routing for us, and to breathe and relax...they were right! In 24 hours we had our preliminary results...two chromosomes for trisomy 13,18, and 21...there is a sigh of relief. Ten days later we were called with the rest of the results...ALL good in the genes! PHEW!

Amniocentesis...My Story

When my husband and I were told about out baby's diagnosis, because of my research I knew that I wanted to have an amniocentesis. In my research I learned that an omphalocele can be an isolated birth defect (meaning your child could just have an omphalocele) or it could be a defect because of other chromosomal issues. Some of those chromosomal abnormalities could include: Trisomy 18 (http://www.trisomy18.org/site/PageServer?pagename=homepage), Trisomy 13, Trisomy 21, Turner Syndrome (http://kidshealth.org/teen/diseases_conditions/genetic/turner.html), triploidy (from what I could tell, children diagnosed with this either pass away inutero or shortly after birth), Beckwith-Weidemann syndrome, as well abnormalities in other organs and body parts. Please be aware that if you look up these syndromes online there can be some graphic pictures. I waited until I was READY to view those pictures...they can be really difficult to look at when you are already in a very sensitive state.

It was because of this information that we wanted to know exactly what we will dealing with to get the proper care for myself and our baby. On May 14, 2009 my husband and I went to our Maternal Fetal Medicine office for my amniocentesis. When we first arrived I had my temperature and blood pressure taken (my blood pressure was very high because I was so anxious and scared). Next we met with the genetic counselor to make sure we understood what was going to happen. We discussed the actual chromosomes that were going to be looked at, how much amniotic fluid was going to be taken out, how the procedure was going to be performed, and I had to sign waivers that stated how to take care of myself after the procedure and precautions to take when the amniocentesis was over.

Needless to say, I was terrified, but the sonographer was incredibly honest and intelligent and reassured me through the whole process. I was asked to take my shirt off and put on a gown and then they began an ultrasound to observe where the baby was located in order to perform the procedure safely. My entire stomach was swabbed with betadine (to sterilize) and the doctor came in to begin the amniocentesis. I tried not to look at the needle but I did, it was long but very skinny...I was told I would feel a pinch and cramping and that is what I felt. It did hurt and I tried to stay calm but it was a little difficult. I watched everything on a television screen from the needle going in, to the tube being inserted, to my baby's hand reaching for the tube as the fluid was being taken out. All of a sudden I felt a tightening of my abdomen and I was told that I had just had a contraction which raised my placenta stopping the removal of fluid. I was reassured that this does happen, however they were unable to get as much fluid as they had wanted and therefore I could not get the FISH (which tests for Trisomy 13,18, and 21) results which come in 48 hours...we had to wait the full 2 weeks for our results. Before I left the office, the sonographer made me memorize these 4 things: CALL your doctor immediately if: 1) I feel like I peed my pants and I know I didn't (that is amniotic fluid leaking) 2) A gush of blood like I got my period 3) A temperature over 101.0 F 4) Intense cramping to the point that I couldn't breath. Once I repeated those 4 things from memory I was cleared to go. I had my blood pressure taken two more times, it was back to normal and I was released.

I did not go to work the next day, I lay on my couch, ate fruit, drank lots of water, and watched television. The third day I felt alot better and did some shopping but I was having some abdominal cramps after that and decided to rest for the remainder of the day. After that I resumed my normal activities and I was fine.

Two weeks had gone by and because I felt like I just couldn't deal with getting the results I asked that my husband be called with them instead of me. The day came, the phone call came and we were told that no cells grew from the fluid therefore there were no results...we were devastated and back to square one. I was scheduled for another amniocentesis. This time no matter how much fluid they got we decided that we were getting the FISH test...some news is better than none...for us at least.

Introduce Yourself Mother's and Mother's to Be!

Please do not be afraid to jump right in and introduce yourself if you are new to this blog, this is the perfect place to start.

Helpful Websites and Information

When my baby was first diagnosed my ob/gyn told me to stay off the web because it can and will be a scary place...well that lasted about 15 minutes and then my hands seemed to have a life of their own. I scoured the internet for the good, the bad, and the ugly on omphaloceles...I looked at pictures (warning, that was a mistake that early on into the pregnancy), I read a powerpoint from the NY Times, and I read countless web articles and websites. Below are some of the websites I found the most interesting and helpful:

http://www.chop.edu/consumer/jsp/division/generic.jsp?id=81171 Children's Hospital of Philadelphia, they do some real cutting edge omphalocele repairs

http://allnurses.com/nicu-nursing-forum/omphalocele-baby-157511.html This is a nurses blog on taking care of omphalocele babies in the hospital

http://fetus.ucsfmedicalcenter.org/omphalocele/ Videos, interviews, and information from the University of California San Francisco Children's Hospital: The Fetal Treatment Center

http://surgery.seattlechildrens.org/conditions_treated/omphalocele.asp Seatle Children's Hospital: General and Thoracic Surgery

Welcome Everyone, Read This Post First Please!!

I decided to start this blog because there are limited resources out there for mother's of children or mother's to be of children with omphaloceles. When I learned of my baby's diagnosis I was 12 weeks pregnant and felt like the rug had been pulled from under me. I spent days researching information on children with omphaloceles (SCARY as you may already know), omphalocele repairs, best hospitals and pretty much anything I could get my hands onto at the time. I also spent days trying to find a place where I could talk to other mother's of omphalocele children...the blogs or forums were very limited...needless to say I didn't find anything on The Bump. That being said, is why I started this blog...I need a place where I can talk to other mother's who have been or are in the same situation. WE need a place to vent, ask questions, laugh, and cry when we need to without pressure or fear.

I as I am sure you did, I spent days asking, "why us, why are we the 1 in 5,000?" I couldn't stop thinking about everything I had done in the past weeks, what I ate, what I cleaned with, how I slept, and my husband did the same. If you are just tuning in or know about omphaloceles you know that YOU did not do anything to create this birth defect in your child.

I am not a doctor nor an expert in anything medical, I just have my thoughts and the information I researched or have learned through my conversations with my physicians and counselors. I plan on putting what I find here on this blog to share with you all.
Thank you for taking the time to stop by, I hope you can find a friend here, support, and most of all know that you are not alone in this...