Wednesday, December 29, 2010

Will my life ever be normal?

I expect that one day I will feel a sense of normalcy about my life, but currently that is not the situation.  Yesterday's appointment was a fiasco and perplexing.  I had a shocking realization of how you need to be absolutely sure on what your appointments are for and what the doctor is thinking about.  I went into ANW expecting an amnioreduction because that is what I thought I was told I needed only to find out that I was scheduled for another BPP to see how things were doing and if necessitated, a reduction.  I am still in shock over the situation and left feeling a little dismayed at how things were handled.  As part of the BPP, I have the heart rate and contraction straps attached to my belly to monitor Nicolas' heart rate and any contractions I may be having similar to the monitoring you would receive in labor.  As the straps were attached and I was thrown back in the chair, I realized that they were not going to get a good reading.  I tried to adjust accordingly, but it didn't work. I was uncomfortable and had to forcefully hold the heart rate monitor with constant pressure to my belly to track Nicolas' heart rate.  After several long minutes, someone finally addressed the situation because the Dr. was noticing the erratic behavior on their screens.  Bryan and I were approached about the situation and informed that because of the poor heart rate strip that they were considering admitting me for further monitoring.  They also mentioned that the dips could be indications that Nicolas was not doing well, but could not be certain because of the Trisomy 18.  Sitting there I was a little shocked because they also indicated that given a normal situation if the monitoring continued as such then I would be faced with an emergency C-section.

I personally was not getting why they could adjust the strap or try a better position.  The doctor decided to go ahead with the second part of testing which is the ultrasound to check Nicolas and the amniotic fluid.  Again, could anything be anymore confusing.  The tech that did the measurements found an AFI of 19.75 which was obviously wrong.  Did she notice the belly on me?  I measure 45 inches round. The good news was that Nicolas although having fallen asleep from his previous antics, was moving well and showed signs that he was practicing his breathing. His score was 8 out of 8 which is better than previous tests.  During the ultrasound I was placed on my right side and was reattached to the heart rate monitoring.  As I laid there on my side, Nicolas held a steady heart rate and didn't have the fluctuations as the previous test.  I have to wonder why on earth would they ever have laid me on my back.  That is not normal by any means. You are always told to not lay on your back when you are pregnant because you can cut off blood and oxygen supplies.

In any case, we left the hospital with some things to consider.  The doctor, who I have seen before, wanted us to consider the level and amount of monitoring we would like from here to the end.  Essentially, possibly not doing any more BPP because the normal approach is if there are dips like we saw yesterday then I would be headed in for an emergency c-section.  A c-section is not high on my priority list like most women and I fear not only being cut open, but the road to recovery thereafter.  I also still believe in the idea that God has a plan for us and to let things happen as He intended.

I think Nicolas is a very strong baby and I have done everything possible to make this pregnancy healthy for him.  I exercise, eat right (most of the time), and take all sorts of vitamins and supplements that are good for both of us. I am constantly told by the nurses how amazed they are by how well I am doing given everything. My body feels strong and I don't feel like labor is going to start any day soon. Nicolas has his daily patterns and is definitely "happier" when I am in my regular routine.  We are in tune with each other.  I can tell on my off days or weekends that he is out of sync.  If something is wrong, I will know or sense it. I think all mothers have that ability. 

Yesterday was a learning experience for both Bryan and I.  First, we have to make some considerations on how we would like to continue monitoring the pregnancy.  We need to decided if the BPP are the right choice and what benefit the test provides given the circumstances if we are trying to avoid any type of emergency c-section.  We also need to question the doctors and staff at the appointments and challenge their recommendations.  If we jump to quickly then what is the benefit to me and Nicolas.  Yesterday could of been one of those days we chose to jump when there was not real reason to do so. Our baby could of been born far to early and I would of ended up with an unwarranted c-section.

The next consideration is the birth plan and what we want to happen during labor, delivery, birth and thereafter.  I have started the process and hope to have it completed today.  I want to make sure that our birth plan reflects the mutual decisions that Bryan and I have made for our family.  Our choices may not be what others would choose, however, we have to do what is right for us.  We also have the right to change the plan if necessary.  Bryan and I are fully aware of the diagnosis given to our son. We understand the immediate complications he will face, but no matter what he is still our child to love and to cherish even if for a short duration of time.

Will my life ever be normal??? I think yes, some day it will feel normal.  But at the moment, I have been on a rollercoaster since June.  I have been through so much physically and emotionally that words truly cannot describe or express my life at the moment. 

Monday, December 27, 2010

Post Christmas Update

Now that Christmas is done, I feel like I have a moment to breathe. LOL. Not really.  The past few weeks have been a whirlwind of activities between last minute shopping, wrapping presents, and getting kids to various activities.  I find myself looking forward to a few days off of work starting tomorrow <smile>.   Of course, I still have to get up and run kids all over town, but at least I won't be stuck in the office.

Week 31 was quite eventful and emotional.  My doctor appointment on the 17th was stressful for many different reasons.  The most significant reason was because of the pregnancy issues related to the excess amniotic fluid called polyhydramnios.  Normal ranges are between 9 & 25cm.  My levels were at 41cm as of December 17th and my blood pressure is on the rise at 120/90.  Although I was not uncomfortable, the consequences of the excess fluid are not good for me or Nicolas.  I could face pre-term labor because of the excess fluid fooling my body in thinking it is further along than it really is. My blood pressure could force me into an immediate delivery if I get preeclampsia.

I continued to workout at Crossfit and taekwondo as time permitted.  Last week was a very good week with two excellent workouts. Monday was Fight Gone Bad (not for the weak) and the other was deadlifts.  I did scale back Fight Gone Bad a little.  I was surprised with what I was able to do and feel good doing.  My score was 238.  Not bad for almost 32 weeks pregnant at the time.

On Wednesday, December 22nd I went back for another biophysical profile.  My stats went downhill a little further. This time my AFI (Amniotic Fluid Index) was at 49cm, an increase of 8cm in less than a week. I did a little math in my head and figured out that this rate of increase is not good. Also, my blood pressure is slowly creeping upwards and is now approaching 130/90 which I have never seen in my entire life. I am normally 110/70 or less than that.  While monitoring Nicolas' heart rate I watched as all the alarms were triggered because his heart rate fell below the normal marker.  As I lay there watching all of this I wondered why no one entered the room to at least see what was going on.  It didn't last very long, but it seem like an eternity.  Eventually the doctor and nurse entered the room and had me lay on my side.  That seem to help the situation and they think that somehow the cord had gotten pinched.  Although I had been told the previous week that I could continue on with my exercise program, I was informed by this doctor that it would be recommended to scale back. I am still trying to figure this out.  Also, I have to go in tomorrow to have an amniotic reduction to remove some of the fluid from my belly. 

So what does this all mean?????  Tomorrow I will be heading to ANW to have a needle inserted into my belly and have fluid extracted to reduce the pressure and hopefully make things a bit more comfortable. Ultimately I also hope it buys Nicolas more time to grow and develop.  He is a feisty little boy kicking and thumping about in his big ball of fluid.  He has so much room that he can still fully extend those legs of his.  Of course, I can't deny the possible complications of this procedure....pre-term labor or birth.....But then what are my alternatives...not being able to breathe when I sleep, inability to sit, back pain, increased blood pressure, possible hemorrhaging at birth, pre-term labor. Any way I look at it, not good.  So today and this evening I will say my prayers that all will go well.  I hope everything I have done along the way to be healthy and strong will go in my favor. My core strength is strong and mentally I think I can work through the pain of having a needle in my belly for a considerable length of time.

And what about Christmas you ask.....well after all of the flurry of running around was done, we were able to enjoy Christmas Eve Mass at the church and have a nice dinner with my Grandma afterwards.  We enjoyed salad, 4 cheese pasta and shrimp. Noelle had steak because she is not a fan of seafood.  Even though it was getting late we open family gifts and shared in many laughs.  Bryan brought Grandma home shortly after 10PM and the girls wrapped the Santa Paws gifts for the dogs. The girls were in bed shortly after 11PM and Bryan and I fell asleep in front of the TV watching a Christmas Story.  Santa arrived promptly in the early morning of Christmas and Noelle made sure that we were all up around 7:30AM to start the festivities. Next year, I am pushing her back to 8AM.  She is such a Christmas fanatic.  The girls proceeded to dig into their stockings and gifts.  Overall, it was a good morning. However, some time later that morning I started not feeling well.  I thought that by having some breakfast I would feel better, but I was terribly mistaken. Needless to say my breakfast came back with a vengeance and I spent the entire day in bed or on the couch. No Christmas dinner or treats for me.  Although I felt crummy, I didn't want the rest of the family to miss out so I insisted they go to the cabin to be with the rest of the family.  I spent the evening drifting in and out of sleep while various Christmas shows played on the TV.  Bryan and the girls arrived home around 11PM and we all sacked out until almost midnight. 

Yesterday was a better day.  I managed to be up the entire day and played with the PS3.  I ate a small dinner.  I am hoping it was merely a reaction to food as I have dealt with in the past and not something worse. 

Enough for now... lunch is calling and so is work....

Monday, December 13, 2010

Happy Monday

The girls (me, Noelle & Jena) made a bunch of tasty holiday treats.  It is one of our favorite things to do.  Noelle is developing some very good baking and cooking skills. Jena is starting to show interest, but I think she is always in the shadow of her older sister.  It is fun watching them grow into their baking skills.  Each year they take on more responsibilities.  Noelle wrote a paper on baking and the importance of each ingredient so I was not allowed any substitutions or older ingredients. We will be baking a lot of chocolate chip cookies over the holiday break as part of her science experiment.  I was very proud of her for taking an inventory of everything we needed to make all of our cookies. I think our "cookie" grocery bill was more than the groceries I bought.  The platter I brought into work last until the lunch hour and the teachers received a beautifully put together box of treats that will hopefully last a few days. 

Week 31 is fast approaching and the time although sometimes feeling quite slow is moving quite fast.  The kids are on holiday break from the school starting next week and will be plenty busy with gymnastics (Noelle & Jena) and taekwondo (Jena).  Jena is really excited to use her new ice skates which I assume should happen soon enough once all the snow is cleared away.  It is bitterly cold this week so the local rinks will hopefully be ready. 

Today I went to Crossfit at noon and got in a good workout.  My coach indicated I was a bit sweaty at the end.  I would hope so after rowing 2 sets of 500 meters, 50 lunges, and 20 push ups for the warm up.  The WOD was FRAN which is 21-15-9 thrusters and pull ups.  I used the 45 lb bar for thrusters and did a modified standing wide row with the 45 lb bar instead of pull ups. My time was 9:06.  We then jumped on the heavy bags and proceed to pound out 5 rounds of 1 min on your own, 1 minute of coach directed instruction and then 2 sets of planks (can't do a v-sit at the moment).  It feels good to workout, but I know my days are numbered.  At some point I will have to stop, but at least I know I can always come back to it.

We also had another session with Bella Angel Imaging. I will have to write more on that later and put some new pics out of Nicolas.

Friday, December 10, 2010

Still kicking

Ok, so I am talking about me this time.  My kicks are getting a bit lower and noticing the belly is putting me off balance. The white t-shirt shows the belly a bit more :o).  My belt still fits twice around, but is starting to look like a bow tie.  Working on form Koryo which is one of the two black belt forms I need to know by June 2011.  Although for 30 weeks preggo I am not complaining.  Last night I got my first glance at the 3rd trimester puffiness. OMG my legs and ankles were huge. Not liking it, but it comes with the territory of being pregnant.  Good thing it is winter and my cankles are covered!


Taekwondo class Thursday, December 9, 2010


Wednesday, December 8, 2010

30 week update

The hustle and bustle of the holidays is upon our family.  I have been working very hard to get things in order for Christmas.  It is amazing how busy this time of year is for me both personally and professionally.  It feels like I will never get caught up let alone ahead of the game.  As a family we are still working through the many steps we have to take to prepare for the birth of Nicolas.  It is very overwhelming at times.  The planning considerations are more than you could ever imagine.  You have to work through so many scenarios that are not pleasant such as if he is stillborn, survives for a few hours, or is able to come home. All of which are very possible.  So as much as we don't like to think about the death of our child, we have to plan for it not knowing when it may happen.  It also means as a parent you have to prepare the siblings.  Although Noelle and Jena have experienced death close to the hearts with the grandmother, they have yet to experience it this close to home and with someone so young and precious as their own brother. I am hoping my own personal experiences with death of a sibling (sister died at 10 from cancer when I was 15) and parent will help us become stronger as a family. 

On Saturday, we are going back to Bella Angel Imaging for another 3D/4D ultrasound of Nicolas. I look forward to seeing his face and watch his antics again.  The girls are both very excited and so is Grandma Mary.  I am very appreciative that she is still mobile enough to experience this time with us.  When my family is so little and having others in my family who have chosen not to connect, it is very special to have my Grandma with us.  She is a great source of strength, love, and spirituality. 

Next Friday, December 17th we go in for our next scheduled doctor's appointment.  I am eager to see if all my hard work has been paying off and allowing Nicolas to continue to grow and develop.  I eat very healthy and able to exercise over my lunch hour when work is not so busy.  Combined with some good supplements, I am crossing my fingers that Nicolas is still on the charts and is over 2lbs or more. 

During this time of year I always reflect upon my life and wonder where my life has yet to take me.  It doesn't seem that long ago that my life was very different than it is today. Change is inevitable.  Three years ago, my mom passed away after having complications from her ataxia.  It was a sad moment for both me and the girls.  It is hard to believe that it was 3 years ago today and on the day of the Immaculate Conception.  Although my relationship with my mom was painstaking at times, I did appreciate her love for the girls and how she went out of her way as a Grandmother to them.  Noelle and Jena had a very special place in her heart and she never let them forget that.  

More later...

Wednesday, December 1, 2010

29 Week Update

So where do I begin...lots of information and I only have one brain to put it all in. LOL. Last Wednesday before Thanksgiving, Bryan and I had the opportunity to start working with MPP and Children's Hospital to establish the relationships with different doctors who will care for me and for Nicolas.  Initially I thought we would have a lot of time to kill with an appointment at 1PM and the other at 3PM.  I found out quickly that we would actually need all the time given to us.  The first appointment was with MPP to do an OB intake where they get all of my medical history (felt like a train wreck on paper) and then do a quick check on Nicolas.  Both the nurse and doctor were great and very personable.  I felt as though the cared about my well-being more so than what I experienced elsewhere. The nurse attributed that to the fact they deal in high risk pregnancies all the time. She wanted to make sure my nutrition was on target and was happy that my chiropractor had me on some of the same vitamins and supplements they would have recommended. A quick ultrasound scan showed Nicolas has flip flopped and is now facing downward. It might have explained some discomfort I had earlier in the week.  We spoke with the OB doc who answered our questions.  The doctor has indicated that they do not really want to induce me or pick a date.  He said it is very likely that because of the excess fluid I will naturally go early.  He indicated that many times when they induce and the body isn't ready they end up with unnecessary c-sections.

After that appointment we headed over the Children's Hospital to meet with one of the neo doctors. I found her also very personable and she had a great conversation with us about Nicolas.  She has given us more insight into what we can expect at birth, more about the stomach issue and how it could be repaired.  She definitely has more knowledge about Trisomy 18 babies and agrees that no two situations are ever alike. I felt more confident that they will support our wishes to give breathing assistance to Nicolas if he should need it and to also correct the stomach issue for him as well. She explained that once he is born he won't be whisked away to the other building, but that he will be brought into another room where he would get assistance if he should need it.  They would let Bryan follow Nicolas over to watch everything as long as he doesn't faint.  If all goes well, they would bring him back to me before transporting him through the tunnel over to the NICU at Children's.  Nicolas will have to undergo a full evaluation for many things.  The stomach is a big one.  If all goes well and he is stable, they indicated he could have surgery on day 2 to repair the esophagus to the stomach.  BUT they don't know what his condition is yet and how the repair would work until they evaluate him.  Probably one of the better things to arise was the decision to forgo the MRI scan on Nicolas.  Both the OB and neo doctor felt that it would not provide any additional information and is incredibly hard to do an active baby in utero. I am glad because it would not have been comfortable for me and is quite expensive.

We ended our time with a tour of the level III NICU at Children's Hospital.  They have a very impressive setup with each baby getting their own private room and nurse. There are couches for family and wi-fi so I can keep people posted on his situation. They do, however, have a stricter policy on visitors because these babies are so fragile.  Adults have to be escorted, need to have a flu shot, and cannot have any illnesses.  We are hoping to get an exception for Jena because of the circumstances, but know she may be limited in her visits.  It is very limiting and I really hope they will allow her through. I don't think it would be fair if she only could see her little brother for 15 minutes a week. YES. I stated that correctly. 15 minutes a WEEK not per day.  They don't allow any children that our not siblings in the NICU because of the risk to the other babies. Just more details we have to work through as a family. I think the hardest part is I will be over a 1/4 mile away and have to wheel or hopefully walk myself over to see Nicolas.  We also were told that the esophagus repair could lead to at least a month in the NICU.  Ultimately we don't know what scenario will play out for Nicolas, but can only hope and pray for the best.

Last night we had an opportunity to meet with a social worker from Children's Hospital who works with the DEEYA program which provides hospice and palliative care for children.  At first I was reluctant to meet with the group because the negative connotation that hospice brings, but then found out more about the group that put my mind at ease.  The social worker was very kind and really gave us a sense of what they can do to help our family (all of us) get through this situation. They have specialists who can work with the girls and nurses to answer questions on care.  The program has seen all sorts of Trisomy 18 families and uses their experiences to help other families. They respect each family's decision and don't judge you for what you may do or not do for your children.  The social worker also presented us with some beautiful handmade quilts for the girls and for Nicolas. They also gave us a baby book that was designed by a mother who went through a similar experience to capture moments.  She had some many great tips and ideas to help us. It was very useful and really got me thinking. The other reassuring factor is that if Bryan and I really want to see Nicolas make it home, the DEEYA program will help us with that no matter what the circumstances are. 

Taekwondo class yesterday at noon. I am in the black shirt/white pants.
Happy that it isn't a profile shot!!!
Well it is time for me to get back to work. I was a tad bit late getting in because I was experiencing some acute abdominal pain around the belly button. I wasn't quite sure what it was and ended up going to Abbott once Bryan got home from work to be evaluated. Turned out to be nothing serious and probably related to my growing waistline from the excess fluid. In the end it was a good dry run to the hospital for Bryan.  He needs to get familiar with the route to Abbott.  Plus we did some of the admitting paperwork. 

I don't think there is ever a dull moment in our house.  This week is busy with Jena's taekwondo belt graduation on Friday evening, Christmas Village for the school on Saturday morning and the Peppermint Twist gymnastics meet Saturday afternoon. AND Bryan has class on Saturday.  It's all good. I love watching the girls compete although I am sad that Noelle is not quite ready yet because of her back injury.  She is working hard to be ready for January.  The team photos turned out great. So proud of my two ladies!!!

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).

Friday, October 29, 2010

Spoke to soon....

Ok, so I guess I spoke to soon about how often the doctors want to see me and check on Nicolas. Not a bad thing. Just had to get clarification.  The North doctors are not as comfortable "letting me go" 6 weeks before they see me again.  We moved the appointment up to November 19th at North Memorial in Robbinsdale so we can meet with the neonatologist and tour the NICU.  This is probably a good change, but sometimes I get that warm flushed feeling that they are not telling me something.  I think that certain words trigger that feeling of doubt or concern.  The most recent thing that bugged me was "assist with your wishes".  Ordinarily wishes are a good thing, but this felt more heavy hearted than positive.  Ultimately we want the medical staff at North to understand our decision and to fully support us in our efforts to bring Nicolas into this world safely so he at least has a shot.  I know it is a matter of semantics at this point, but I hate the rushed feeling I get like my heart just hit the floor. 

My hope is that they are just trying to get to know us better and what we want for Nicolas.

Wednesday, October 27, 2010

A wonderful evening


Nicolas 10/27/10   24 weeks
This evening our family was gifted with experiencing a 3D/4D ultrasound courtesy of Sustaining Grace and Bella Angel Imaging.  I made this appointment on Sunday and told the girls they were getting a surprise on Wednesday evening when they came home.  I also invited Grandma Mary along for the experience.  When we arrived at Bella Angel they were very excited to meet their brother.  Brenda was an exceptional and fun hostess making us feel right at home.  The girls enjoyed sprawling out on the big teddy bears while Grandma and Bryan got comfy on the couch.  Nicolas proved to be quite the active baby again.  He was moving around playing with anything and everything he could get his hands on.  He also provided a lot of entertainment with his antics of nose picking, finger sucking, toe playing, ear tugging and even the one finger salute.  

We spent 45 minutes watching him play.  Everyone had an enjoyable time.  Brenda also was so very gracious to give the girls some gifts including a teddy bear for each of them with Nicolas' heartbeat.  Something they will cherish forever.  Bryan got his first "man purse" aka diaper bag loaded with goodies.  Nicolas is quite the super star now with over 100 images tonight and the 45 minute DVD of the ultrasound.  Grandma Mary also has a picture she can now share of Nicolas.  She is so proud and amazed by the technology we have today.  She kept thinking of her own boys (my dad and his brother John) and how she had always wondered what they were doing inside her belly.  It will be an experience never to be forgotten by all of us.

Nicolas is absolutely beautiful and we can definitely see some Miller characteristics and similarities to the girls when they were babies.  We look forward to showing more pictures of this precious boy at our prayer shower and lunch on November 14th at the church.  Truly amazing

I am so grateful for everyone who has supported us along this journey.  We continue to see how special Nicolas is to not only us, but to other people. In time, I would love to give back to all of these organizations who have helped us along on this journey so that they can continue bringing joy into people's lives with these special babies.

Friday, October 22, 2010

Week 23 update

Some weeks can be good even when they are bad. I guess that is how it goes. Personally my week has been hell at work. The amount of stress I was feeling was ridiculous along with anticipation for my regular OB appointment and our cardiac consult just added to it.  Work is still stressful, however, yesterday I think I breathed my first sigh of relief in a long time about the pregnancy.

At my Wednesday OB appointment, I had a great discussion with my OB about my health and care of the pregnancy.  She is fully supportive of me as her patient and feels that the pregnancy is going well and the baby (Nicolas) is also doing well. His heart rate was a steady 138. My blood pressure is excellent and all other signs point to a healthy pregnancy. All very good things for both me and Nicolas.

Yesterday, Bryan and I had the cardiac consultation with the MN Perinatal Physicians and Dr. Sutton. The ultrasound tech started off by looking in general at Nicolas. He has definitely grown since the last time we saw him on the screen.  She also didn't find anything new that we were not aware of.  We have images of his little feet and were able to see both hands.  One was clenched in a typical T18 manner, but the other was not.  The cysts on the brain still exist, but everyone has assured us that they are very normal for any baby.

Dr. Sutton greeted us and started to review Nicolas' heart.  They were concentrating on his VSD (Ventricular septal defect).  A VSD is one or more holes in the wall that separates the right and left ventricles of the heart. Ventricular septal defect is one of the most common congenital (present from birth) heart defects. It may occur by itself or with other congenital diseases. With Trsiomy 18 (T18) babies, this is quite common.  Dr. Sutton examined the VSD and found that the hole is relatively small on the scale of things and should not cause any complications for Nicolas. He said it would not likely require surgery, but we will only know definitely when he is born and can be examined further.  The size was estimated to be somewhere around 2-3mm.  If 0 is the smallest and they can see the defects much larger (7-8mm), I feel pretty good about things.  Dr. Sutton said that most of the issues we may face will be around respiratory or breathing issues and possible need for intervention at birth.  He indicated we will still have many tough decisions to make as parents. Bryan and I were introduced to a perinatologist, Dr. Calvin.  He also warmly welcomed us and helped clarify some of the findings.  Again, we felt he brought good news indicating that on the scale of difficulties or issues that may effect Nicolas, they not as bad as what has been seen with other T18 babies. Dr. Calvin was very supportive of our decision to continue with the pregnancy and to give Nicolas every chance he deserves.

As the pregnancy progresses things will change, but I am confident that we are getting the support for myself and for Nicolas.  We have the start of a plan which for now is to proceed as if things are normal.  For me that is a great relief because I can concentrate on other things for the time being rather than squeezing in doctor appointments in on a weekly basis.  I will be checked in 4 weeks and we will have another level II ultrasound in about 6 weeks to check Nicolas' growth. Nicolas, without doubt, will be small.  We know that.  We just want to make sure that I can continue to grow him and bring him as close to term as possible.  Currently he weighs 15 oz. I was happy because he has almost doubled in size since the previous ultrasound in September. 

We will continue to say our prayers and be very thankful for what God has given us. Nicolas is truly a gift.  Even in utero he continues to let his presence be known.  He gave the ultrasound tech a run for her money because he couldn't sit still. Hmmmmm who does that sound like....maybe some older sisters....He sometimes rolls around rampant at night or gives me some gentle nudging in the morning to get me going. I am hopeful we will get a 3D/4D ultrasound soon so others can experience what an incredible baby he is.

Even though we don't have any appointments until mid-November, I will continue to post other types of updates.  We are organizing a prayer shower for November 14th at the church and will be getting invites together very soon.

We are thankful for all of the continued thoughts and prayers for our family.     

With much love ~Natalie

Sunday, October 17, 2010

Strength

On Friday I went to Crossfit TC to try and accomplish my workout for the day.  Needless to say I was not all that motivated at first because the WOD (work of the day) was heavy lifting. Not exactly something a pregnant woman should be doing.  After a nice warm up on the rower, we proceeded to get ready to do some pull ups. I hung up my two bands (one purple, one black) from the pull-up bars.  The goal was to do the maximum reps of pull ups each round for a total of 7 rounds. The first round I knocked out 8, then went down to a good solid 6 until the final two rounds where I managed 5 and finally 4 pull ups. 

We then moved on to the heavy lifting.  It was push press day.  I couldn't remember my non-pregnant max push press weight. So the CrossfitTC ladies proceeded to work on finding out max weight.  I stopped at 95 pounds. Coach Robbe felt that was good enough.  We then worked our way down the weights while increasing the number of repetitions by 1.  I started at 95 and went down to 65 pounds for 5 times at the end. Not bad. Oh, funny comment of the day came from Leslie as she so nicely observed that the two pregnant ladies (myself and Ms. Bishop) were the ones who could not only lift the most, but also were the individuals who were pulling the weight plates on and off the bar.

I surprised myself on Friday.  I know earlier in my pregnancy I deadlifted 205lbs, but I would have never guess that at 22 + weeks I am still strong and able to lift the weights.

I can thank the CrossfitTC coaches for continuing to work me hard and for keeping me in great shape during my pregnancy.

Thursday, October 14, 2010

It's the little things

Last night I had another craniosacral therapy session with my chiropractor. I have done a few of these in the past, but not while pregnant.  What amazed me about the session was how the energy in your body truly can be felt and moved.  Not only did I receive the benefit of the therapy, but so did Nicolas.  During my session I found he was extremely responsive to the energy and would actually follow it in my body.  As the energy went up my abdomen, he to move upwards. My hand would hover a few inches above my belly and Nicolas would be right underneath it.  I think I should note that Nicolas tends to hang out very low and usually on the left side.  Yesterday was the first time I felt him travel to other places within his comfy home. I have been told that craniosacral therapy is very good for babies and children with Trisomy 18 so I am hopeful that Nicolas will reap the benefits in utero.  He is very much a part of our family and makes his presence known to us every day.

As a family we are starting to read children's books to him.  Now that the Noelle & Jena are older they are able to read some of their favorite books like The Napping House, Are you my mother?, and Hand, Hand, Fingers, Thumb.  Nicolas seemed to like the chatter, and I enjoyed re-reading them to my kids as well.

I also had several great conversations yesterday about the care for both me and Nicolas.  More on that later.

Tuesday, October 12, 2010

Waiting

I am still waiting to get things sorted out.  Last Friday I received the official phone call letting us know that Nicolas has the full Trisomy 18 with the distinct chromosome.  On the happier side of things, it means that Bryan and I did not pass this on to him nor did I possibly pass it on to Noelle and Jena. 

I have requested a cardiac consultation with a doctor with The Children's Heart Clinic which is associated with the Minneapolis Children's Hospital.  We have been told that we need to get a better understanding of Nicolas' heart issues.

Lots of waiting....