Friday, November 19, 2010

27 week ultrasound

Nicolas laying on side of mommy resting
This morning I had another ultrasound check to see how Nicolas is doing and how much more amniotic fluid I am taking on.  I think this ultrasound was one of the more positive experiences we have had.  Overall, Nicolas is looking good. He has grown quite a bit since his last measurements.  He weighs 1lb 12oz and is in the 21st percentile for his age. I am very pleased about those results because he was only in the 16th percentile in October. He has put on 13oz in 4 weeks. 

Look at that cute foot. Not actual size. Note measurement in corner.
The tech commented on his long fingers which I assume he gets from me because my fingers are longer than Bryan's fingers.  And no I don't have man hands!  More importantly his hands were not clenched although some of his fingers cross over.  I will be curious if he inherited the crooked pinky finger like what both girls and I have.  His feet also seem to be good sized at 5.49cm which is basically 2 inches.  I measured it out on a post it note to see how big they are.  No wonder why I am feeling those thumps so strongly.  He also managed to be positioned with his head up right under the right side of my ribs. He must of been practicing his taekwondo techniques yesterday because I was constantly getting bump in the ribs.  His legs and feet are on the complete opposite side (bottom left) and were stretched out and feet were crossed as if he were unwinding on the couch. I always though babies were curled up in a ball in the belly.  He is growing quite nicely.  No new things to report and actually the cysts on his brain no longer exists and went away as they do for many babies.  The tech may have also seen a very very tiny stomach.

Nicolas foot measures 5.49 cm.  Check it out on this post it note.
Crossed feet with legs stretched out.
Who does this remind you of?
I have only managed to increase my amniotic fluid by 1cm which is not bad at all.  I am over the normal limits which range from 9 - 22cm and am currently at 26cm.  Nothing to be alarmed about yet.  The doctor was surprised and impressed with my ability to workout.  The doctor had also asked how we knew he was at T18 baby because she thought although he had some issues such as the possible TE fistula and the VSD that he really looked good.  Lots of positive comments radiating from the tech and doctor.  I think Bryan and I left feeling a little awed at this point.  We know Nicolas has Trisomy 18, but feel as though he is still on the better scale of T18 babies.  If he was a "normal" baby, these issues would not be considered all that bad.  Serious, but certainly not fatal. It hurts my brain to think about these things.

Another beautiful profile shot.
His little face is filling out.
I feel as Nicolas's mom that I am doing everything possible to get him here safely.  I think that the extra care received from my chiropractor with the prenatal supplements and other vitamins is helping Nicolas continue to grow and not fall off the charts.  The next 12 weeks or so will be truly interesting to watch to see how his growth continues.  I am not expected back for another ultrasound for another 4 weeks.  We meet next week with Abbott's OB staff and get to meet the neonatalogist.  I am hoping for a better experience than the last visit with a neo doc.  I should also be getting scheduled for an MRI soon to further investigate the stomach issue.  Of course, Nicolas will need to sit still and play nice for the doctors. He did a great job today.  Very calm considering how busy he was yesterday (ALL DAY). I thought babies were supposed to sleep 20 plus hours a day. 
 

I plan on contacting Bella Angel Imaging to schedule another 3D/4D ultrasound of our little guy.  He has grown so much it would be fun to see his face now that he has filled out more.  We are gifted with one more of these awesome experiences and I want to time it perfectly so it won't seem like forever before we get to see his darling face in person.

Wednesday, November 17, 2010

27 week update

Sunday we had a beautiful prayer shower that was host by Mary Kellet and volunteers with Prenatal Partners for Life.  The slideshow was very moving to watch.  I found myself holding back tears while watching.  I appreciate all the love and support that was offered.  It means so much.

Yesterday I had a regular OB check.  All sorts of fun stuff like glucose testing for gestational diabetes (nummy orange sugary beverage) and getting poked with my RH shot. My OB is very supportive of the situation, but also noted that I am bigger than expected which probably correlates to the excess amniotic fluid that was noticed at the last ultrasound. I feel big yet I have many people comment on how small I am compared to other pregnant ladies. 

I have started to build the relationship with MN Perinatal Physicians (MPP) and am scheduled for an ultrasound on Friday to check amniotic fluid and Nicolas.  Next week I have another OB check with their doctors and possibly get a tour of the Abbott-Northwestern facilities.  It may be hard to coordinate with the holiday the following day.  I am at the mercy of the doctors and am finding it a little annoying.  Mentally I am drained from the experience and having so many appointments.  I am still working full time and it is really hard to get my job done and fit everything in. I was told that I could expect 2-3 appointments a week as my due date approaches.  With everything going on I find it hard to enjoy the holidays.  I haven't even begun my Christmas shopping. 

Life seems ten times harder at the moment.  I know I will manage and make it through all of this.  But I have so much to consider and plan for.  You never know what will happen so you have to plan for the worse case scenario including all of the potential threats to my own health. 

On a much lighter and happier note, I enjoyed my work out today at Crossfit.  I warmed up with about 50 kettlebells with the 25lb weight and also did the prescribed workout of (2) 500 meter rows for time. I was quite proud of my accomplishment because the last time I rowed was early June before I knew I was pregnant and my best time was 1:50. Today at 27 weeks and almost 30 lbs heavier I rowed a 2:03:2.  Not bad especially when I looked at the other times.  I am keeping up!

Tuesday, November 9, 2010

Just Because...

Not that I am fond of photographs while I am working out.....but I had to include this one from yesterday.  Still working out at Crossfit (http://www.crossfittc.com/) and Taekwondo (http://www.wta4u.com/). 

Trying to stay as strong and fit as possible.  I am in the black outfit with the 45lb bar over my head. I was doing a pushup on the bar sitting on the squat rack then a clean to a push press. We had to do 77 reps.  I did them all. Oh and I rowed over 1700 meters as a warm up.  I am over 25 weeks pregnant!!! Ms. Bishop in the blue is also pregnant. I think she is around 17 weeks. 

My plan is to continue my slightly modified workouts until the doctors tell me I can't. That will be a very sad day!!! I love my workouts.

Recovering

I am still recovering from a nasty cold that started the other week.  Monday and Tuesday last week were completely miserable.  We have made minor progress in our transition over to Children's Hospital and Abbott-Northwestern.  Our meeting last Friday with North Memorial was informative yet we got bad vibes from the neonatal doc. It is funny how little some doctors know about T18 survivors and seem shocked when we bring up the number of families we know or are in contact with.  I have gained many new T18 mommy friends on Facebook and through other organizations who are more than willing to share their stories.  The medical community can be very untruthful because they think they are doing the parents a favor by either terminating these babies by being extremely fatalistic about the outcomes or not providing services they would offer to a "normal" child.

We had a short ultrasound that didn't tell us much about how Nicolas is doing other than I am starting to take on excess amniotic fluid which is a problem.  The excess fluid first of all will be very uncomfortable as the pregnancy progresses and also puts me at risk for pre-term labor because my body may believe it is further along. I more than likely have ultrasounds every 3 weeks to check on the fluid.  I know that they can remove some of it in the same way they do an amniocentisis.  All I can say is ouch.  But I would definitely consider it if it keeps Nicolas in utero longer to help him develop.

Part of me feels that North is happy to get us over the Children's because then they don't have to deal with us any more.  Or I could try and be more positive in saying that they are looking out for the best interest of me and Nicolas by having all services under one roof.  We have always been very clear to the doctors that we want to do whatever it takes to bring Nicolas safely into this world and were open to the different delivery options and locations.

Another big issue that has finally been addressed by the docs is that Nicolas' stomach has been noticeably absent on ultrasounds since 19 weeks.  This problem was never really discussed until last Friday.  The problem Nicolas may have is esophageal atresia which is a disorder of the digestive system in which the esophagus does not properly develop and attach to the stomach.  Obviously this is not a good thing for Nicolas, however, if he did not have a chromosomal issue, it is fixable through surgery.  There is a great reluctance for doctors to do the same surgery on a T18 baby because they have been classified as non-viable which is the stupidest thing I have ever heard. It is discrimination in my opinion. So now I will likely need an MRI to evaluate Nicolas' stomach issue further so that we might be able to get a surgery consult with Children's Hospital before his birth.  I am using all of my resources to locate good doctors who see no difference between Nicolas who as T18 and any other baby. Ultimately he is a human being with rights and it is up to Bryan and I as parents to make those tough choices and determine his quality of life not the doctors. 

We received some good news last Friday that we should be able to work with Dr. Calvin and are looking to schedule Nicolas' birth day on a day that we hopefully can be guaranteed that Dr. Calvin will be there. :o) The idea is to pick a date when I am around 39 weeks, but this is also dependent on whether or not I experience other pre-term labor issues or if Nicolas is becoming distressed.  There are many variables to consider because of the excess amniotic fluid, risk to the placenta detaching because it is also affected by the same chromosomes, or Nicolas becoming stressed in utero. I am excited to place a date on the calendar and start planning things out for our family.  So much to think about and consider.  I pray for Nicolas to make it full term to give him the best opportunity for growth.  He is very safe in utero because my body and the umbilical cord provide him with a cozy home that he thrives in.  Outside of his nest his body will have to do the hard work and we face the complications related to the T18.  He is such a beautiful looking and active baby, I can only wish for the best things for him.

I am looking forward to the prayer shower on Sunday and seeing the support we have from our friends, family and church.

Wednesday, November 3, 2010

More changes on the horizon

I think each week brings us something new to consider.  Yesterday I had a conversation around where I should deliver Nicolas.  We have to contend over what is comfortable and convenient for me versus what gives Nicolas the best chance if he needs some type of intervention.  The bottom line and overall consensus is driving me to deliver at Abbott-Northwestern so that Nicolas is able to be at Children's NICU.  It is not that North Memorial doesn't have good care, but rather the number of available specialists readily available at Children's.  If Nicolas needs surgery right after birth, he needs to be at Children's Hospital in Minneapolis.  We do have the option to go to the University of MN Amplatzer Children's Hospital, however, we would like to stick with Dr. Sutton and Dr. Calvin who are part of the Children's Hospital and Clinics system if at all possible.

So I am currently working through this likely transition with North Memorial over to Abbott-Northwestern/Children's Hospital. I believe that either hospital would have adequately covered my care.  It is hard to change from my existing OB because she has been extremely compassionate to our situation. I am hopeful that Dr. Calvin can take over as my attending but that is not determined.  I am stressed out because I am not sure how far away the Children's NICU is from the Abbott maternity area.  Part of those concerns would be resolved by getting to know those hospitals.  Also, if Nicolas has an extended stay within the NICU, it would be a longer commute to see him once I am discharged.  The distances are not horrible overall. North is about 6 miles from home whereas Children's is 14 miles. But getting to Children's is not as easy because we can't take city streets to get there.

Another item that was mentioned is possibly getting induced so that a team of specialists would be ready and we would also not have as many worries about the weather.  You never know what you will get in Minnesota in January or February.  Good thing I have a vehicle with all-wheel-drive and a GPS.  I already programmed Children's in as a destination :o).