The story of our son

Wow. Where has the time gone? What an amazing, emotionally draining, faithfully inspiring pregnancy this has been.  For those of you new to my life and those who I’ve had the pleasure of knowing for years, my hope for this blog is an attempt for me to answer questions, mentally vent, and grieve.  I have put this off for months and wish I hadn’t.  I don’t know what I was waiting for….possibly to wake up from what seems like a never ending rollercoaster ride of good dreams and nightmares.  Well, no more, no longer can I procrastinate as our little man is due to be born on or around September 17^th.  This entry may be quite lengthy but I don’t want to leave out any details and, if I do, hopefully the answers will come out later.  Let me begin by saying thank you for taking the time to read my family’s story and the many prayers that have been said for us.  I truly believe that through faith and prayer we have been able to cope with this challenging journey.  Many of you may know this already but I am no English major nor do I enjoy writing.  I enjoy real-life, face-to-face conversations with people, so this blog may not be the most writer/reader friendly.  So here I go, bringing you up to date from the beginning.

               

          It’s hard to believe that it’s been 6 months since this journey began (well 9ish, technically, if you count from the beginning of conception).  We were excited to learn in January that we were expecting our 4^th child.  What better time to have another child (note a hint of sarcasm).  I mean we just sold our first home, we’re living with my in-laws, and in the process of either building or buying a new home.  All that aside, the joys of having another child with my wonderful husband, Zach, were pleasantly filling up my heart and I started to plan for this newest addition.  Yes, I am a big planner and person who, at every opportunity, tries to control each and every situation.  That said, this pregnancy has been a lesson in patience and surrender.  I have learned that each situation cannot be controlled and that there is One in control of everything and has the ultimate power to change your perception, feelings, and outlook on life.  I may not be able to control what is happening or about to happen but I do have the power to control how I perceive the information given to me.  I have a choice to either be mad, angry, and fearful or find blessings in the time I do have with our son and the opportunity to plan for the events on the day of his arrival and potentially him coming home for some time.  Many families are only given seconds to make the decisions that I have been given 6 months to make.  Don’t take me the wrong way though there have been many times, my husband and I, felt pressured into making decisions but found that these were the times that it was most important to turn to our faith in God and pray for his guidance and strength.   In turn, we have been blessed with time and peace with the decisions we have made.  And so I continue with our blessing’s story.

                On January 17^th, 2012 I got to see the first sneak peak of our baby.  I have had miscarriages in the past so to determine dates and viability I had an early ultrasound.  At this point my husband was working for a new company and had insurance with an unfamiliar hospital where I had to meet with a new physician.  This made me very uncomfortable as I had always doctored with the prior two pregnancies and miscarriages with a physician at the same organization I worked at.  I gave it a try but was not convinced that this was the place I wanted to continue care or deliver my child.  I was able to obtain an individual health insurance plan through my job and began to doctor with my amazing OB-GYN and received another sneak peak of this little one on January 23^rd, 2012, confirmed I was 6 weeks pregnant and was able to hear the heartbeat as well, which is always rewarding and relieving.  I did not have another appointment until March and chose to have first trimester screening performed.  I figured why not, insurance would cover the ultrasound and I’d get to see my baby again.  Zach and I did not have any increased risk factors for genetic complications but in a way wanted to prepare for as much as we could with having a fourth child.  We assumed everything would be fine, as we have 3 healthy, beautiful children and their pregnancies were uneventful and could be classified as “textbook” pregnancies.  March 12, 2012 (13 weeks and 0days) was my ultrasound.  Unfortunately my youngest daughter, Anberlin, was sick and Zach had to stay home with her and Landen.  I decided that this would be a great opportunity for my oldest daughter, Tara, to join me in this experience and go with to the ultrasound.  My appointment was at 330 and the imaging began at 345.  We first met with a genetic counselor who explained what they would be looking for and measuring in the ultrasound images.  He shows you three different pictures of fetuses with three different sizes of nuchal thicknesses.  The nuchal thickness is a measurement that looks at the nuchal fold (area behind the fetus’s neck) and suggests increased or decreased risks of genetic/chromosome abnormalities.  He showed me a picture of normal (nuchal measures less than 3mm) slightly abnormal (measures 3-4mm)-which suggests an increase risk of a trisomy (chromosome) abnormality, and markedly abnormal (measuring greater than 10mm)-suggesting an increased risk of heart/chromosome/severe anomalies, and these fetuses tend to have poor outcomes if they do survive.  He told me not to worry about the greater than 10mm though because this is very rare.  After listening to his discussion we proceeded on with the ultrasound.  With my daughter by my side the ultrasound tech pointed out the head, limbs, and heart.  You know they are unable to give any information about anything they may see that is abnormal so I just asked many questions throughout; knowing that, the way she answered would give me some information in regards to the baby.  I noticed a large ring around the baby’s head and asked her what that was.  It appeared to look like a halo.  She said that is what we are looking for to measure.  Well, I immediately knew that this was large and definitely not within a normal range.  The rest of the ultrasound was a blur as I began to try and process everything the information the genetic counselor had given me, what did this mean again? Was this fatal?  I took a deep breath and tried to relax.  The ultrasound tech finished her images and left to go get the perinatologist (Dr. Boyle) who needed to discuss the findings with me.  As I waited for the doctor I called Zach and started to tear up.  Tara, at this point, began to look worried.  I tried to catch my breath and explain that something might be wrong to Zach but I didn’t know what.  Then Dr. Boyle entered the room so I got off the phone.  He began to explain to me that he was very concerned as the nuchal thickness measured greater than 10mm and was 10-13mm.  He said this could mean a few things: 1) A girl with Turner syndrome (missing all or part of an x chromosome) 2) Heart defect 3) Some other chromosome abnormality or 4) Normal.  He continued to say that if it is Turners only 1% of these fetuses survive to even deliver and that this is the number one cause of miscarriage.  He also said that because of the size of the nuchal measurement I am at a very high risk of miscarriage and the outcome is very poor.  I was devastated and couldn’t stop crying.  Another miscarriage, possibly a heart defect, maybe normal, I had no idea what to say or do.  Tara began to hold my hand and ask many questions too….was the baby going to die, what’s a miscarriage, what’s a heart defect.  I don’t even recall how I answered her.  At this point Dr. Boyle offered a test called CVS sampling (they insert a small instrument through the cervix and obtain a small sample of placenta and grow out DNA cells to analyze). This test helps to determine if the increased nuchal thickness is due to a chromosome abnormality.  He stated that I have until 13weeks and 6days to decide if I want the testing done but he could do it then if I chose.  I decided to wait because I hadn’t even processed the information yet and I wanted to talk things over with my husband.  By the time this appointment was done it was 530.  I didn’t think it was safe to drive so I went to the NICU (where I work) and went to my coordinators office and cried until I could regain my breath.  I then drove home and had a brief conversation with Tara in the car.  I told her that this situation was all up to God and that we would just have to wait and pray about it and that if God wanted the baby in Heaven then that would be okay.  She looked at me and said “well I hope he makes up his mind soon” and all I could say was “me too.”

                When we got home I tried to explain to Zach what was going on.  I explained to him the CVS sampling procedure and we decided not to have this done.  My reasoning was if the baby is having trouble already and also at an increased risk of miscarriage I didn’t want to do anything to further increase that risk.  I couldn’t see how obtaining a small piece of placenta couldn’t harm the baby, especially if it’s a heart defect; wouldn’t the baby need all the placenta it could get?  During this discussion with Zach, Tara must have mentioned something to Landen (he’s 4) about the appointment because he came up to me and said “the babies going to die because he has an owie in his brain and a hole in his heart” I told him “we don’t know that yet, but maybe.”  Hearing these words are hard but I just had to remind myself that he is 4 and doesn’t quite understand like we do.  And so the research began.  I began to search the internet, blogs, books, anything for answers.  What is Turner syndrome, has anyone else had this experience before, what percentage of large nuchal thickness end in miscarriage, and on and on.  I eventually got so tired of trying to find the answers that I just turned to my devotional for answers.  One of the first entries I read said:

“Let me help you through this day. The challenges you face are far too great for you to handle alone.  You are keenly aware of your helplessness in the scheme of events you face.  This awareness opens up a choice: to doggedly go it alone or to walk with Me in humble steps of dependence.  Actually, this choice is continually before you, but difficulties highlight the decision-making process.  So consider it all joy whenever you are enveloped in various trials.  These are the various gifts from Me, reminding you to rely on Me alone.”  

How appropriate for this situation.  It is so amazing how God truly does speak to you and know what we need and when.

                My next appointment was at 15 weeks and 1 day on March 27^th.  This appointment we learned that possibly we had a little boy!!! How exciting! And he has a strong heart beat. Does this mean that Turner’s syndrome is no longer a possibility?  Does this mean his heart is okay? Well, not exactly I guess. It still could be a boy with some cells missing the Y chromosome and a heart defect is still a big possibility. Great, so still no answers.  The nuchal thickness was measured again and appeared to be unchanged, still measured around 13mm.  Dr. Boyle at this point began to classify the nuchal thickness as a cystic hygroma and gave us the option of having an amniocentesis performed.  I still did not want to increase the chance of miscarriage and really struggled if I should get one done or not.  My husband and mom were at this appointment and helped me to make the decision, well mostly my mom.  Zach said he would go along with whatever decision I felt was best.  My mom though, she said we needed some kind of answers so we knew what to look forward to and said “get one, and if something happens, blame me.” I could never blame my mom but I thank her for supporting us during this pregnancy and helping me to make some decisions.  We had the amniocentesis performed and anxiously waited for the results.  The results came prior to our next scheduled appointment…NORMAL and BOY! What a relief, so maybe this is a heart defect or everything is “normal” (I put this in quotations because what really is normal, God created this little boy, and I find it hard to believe that he wouldn’t consider him “normal”).  We had the privilege of naming our son now because we knew what gender we were having.  I searched for names and determined that I didn’t really like any names out there so I made up a special unique name for him.  I chose Jaston, a mix between Jackson, Justin, Jason.  I also picked out the middle name to be John: gracious gift of God or God is gracious depending on where you search.  A great strong biblical name well suited for this little boy.  Our next ultrasound was April 11^th, 2011 (17weeks and 2days).  At this appointment the hygroma appeared to have enlarged.  We also saw that our little boy possibly had clubbed feet and possibly clubbed hands.  He also appeared smaller than other fetuses his age.  But because I was only 17 weeks they couldn’t take measurements to determine this observation.  I had to wait for a more “complete” ultrasound to be done to really analyze what was going on.  Dr. Boyle was concerned with the possible findings and told us to prepare for a late miscarriage.  Something we are used to hearing by now but the pain and hurt of these words never fades.  Prayer has become our drug and has helped us find light in what seems like a never ending dark tunnel.  Because of what they think they may be seeing on ultrasound we met with the genetic counselor again and decided to have a CGH array (comparative genomic hybridization) performed on the amniotic cells they have grown.  The counselor explained this test like the following: the original study performed on the amniocentesis looked at the “big” chromosomes.  View a chromosome being like a textbook: does this little boy have all the textbooks: YES, an array is looking for missing pages in the textbook, and there is an even further broken down study of chromosomes looking at certain genetic conditions.  These tests look for missing periods or uncrossed t’s or undotted I’s on the pages.  The array came back normal as well.  So still no answers or identification of what is going on.

The next complete ultrasound took place on April 23^rd (19weeks 0days).  This day we confirmed his growth to be smaller than normal.  He is now considered IUGR, intrauterine growth restricted, measuring the same as a 15-16week fetus at 19weeks.  He does have bilateral clubbed feet and is possibly missing the radius in one and/or possibly both arms, but again because of his size they cannot confirm this yet.  His hygroma appears the same, well at least hasn’t gotten any larger.  Dr. Boyle says the hygroma probably won’t go away but he will grow into it.  His heart appears normal, but because of size again they are unable to really determine.  They also looked at his brain/skull which, go figure, because of size they are really unable to see if there is any abnormality there either.  Because of everything he has seen develop with Jaston, Dr. Boyle feels this is some genetic condition but he is unsure of which one or what’s caused it.  Jaston’s symptoms aren’t following any known condition or syndrome.  He doesn’t know if this is a new mutation that will affect future children or our children’s children.  He feels that with time and after delivery we may get more answers after seeing him and having a geneticists examine him.  So we wait for him to grow and again wait for the next ultrasound.

May 9^th (21weeks 2days) we confirmed bilateral missing radii, bilateral clubbed feet, some kind of brain anomaly, and IUGR.  Dr. Boyle feels the prognosis is poor and we are highly likely to experience the lose of our son in the coming weeks.  We wait and pray for growth and have another ultrasound on May 23^rd (23weeks 2days).  This day we see he hasn’t really grown and when we look at the growth chart it appears he has reached a plateau of growth.  He weighs 10 ounces and he has microcephaly (a condition where the head is severely smaller than average person for that age) it measures around the same size as a 17 week fetus and his body is measuring that of a 19week fetus.  We are given the option of inducing at this time if we want the chance of holding him alive.  Because of the brain malformation (it could be a cyst, it could be a broken vessel during the embryonic stage that didn’t seal and kept bleeding, or it could be an empty cavity where the cerebrum failed to develop) and the markedly stunted growth, Dr. Boyle feels we have limited time with him.  What a decision to make.  Seriously, you want me to deliver because you think if I don’t he will pass away in the womb. Well yeah was my initial reaction.  Yes I want to hold him alive.  Let’s schedule for this.  I don’t want to have to go through labor if he isn’t alive.  “How long doctor, with your experience in seeing this slowed growth, do you think we have if we don’t decide today?”  “I’m afraid maybe four weeks” was his response.  So we scheduled for an induction to happen in 2 weeks.  I figured we had been having ultrasounds every 2 weeks so we could wait another 2 weeks, have another ultrasound prior to delivering (secretly hoping everyone was wrong, and at this ultrasound he would be “normal).  And in two weeks that was halfway between now and when the doctor feels he will no longer be living anyway.  We went home and began to make phone calls to our parents, sisters, and brothers so they could schedule to be here for the delivery.  My husband and I didn’t talk very much that night, we just sat on the couch after the kids were in bed and cried and held each other close.  The thing with having three other kids at home during all this is that you don’t really get a chance to process information or have lengthy discussions about what’s going on.  You are really forced to continue the routines they are so familiar with and maintain some normalcy despite the desires to just break down and cry and hide in a dark place somewhere.  This isn’t an option nor will it ever be an option for those who have children and are struggling with a life “crisis.” So you find comfort in someone, something much greater than you…your Creator.  You look to the Lord for strength and guidance.  You confide in Him for answers and wisdom.  You look to him for peace and serenity.  You surrender to Him and let him consume your heart.  That said, a few days after we had made the decision to be induced I was in the shower with tears rolling down my cheek.  I had these awful feelings, feelings of guilt, a feeling of lose and I hadn’t even “lost” anything yet.  I eventually found myself sitting upright in the corner of the shower, crying with my knees tucked tight up to my chest, asking the Lord, why?  What do you want me to do? Is an induction what you want me to do, or is this my way of trying to control the situation and trying to alleviate the uncertainty that the future holds?  I am begging you to give me some kind of answer?  Little did I realize that was the answer…me questioning my decision to be induced.  I wouldn’t have these feelings of guilt if it were the right decision.  Godly decisions don’t allow you to feel guilt.  It was then that I realized I needed to cancel the induction.  My best friend, whom I had many conversations with throughout the pregnancy, happened to call that next morning.  She was having some of her own thoughts and feelings in regards to the induction and felt she needed to call and share them with me.  She wanted me to know that she was supportive of any decision I made, but wanted me to make sure that I wasn’t having any feelings of regret.  She wanted to make sure that I felt comfortable with the time I had with Jaston and was ready to say good-bye.  She is such an amazing person and I am thankful for this conversation, otherwise I wouldn’t have mentioned it on here.  Out of this conversation I was able to confirm my thoughts that when the Lord is ready for Jaston he will call him home.  It is not up to me to make that decision.  I have been blessed with a beautiful little boy, an angel who has chosen Zach and I as his parents and Tara, Landen, and Anberlin as his siblings.  The good Lord has allowed me to be the temporary home for growing Jaston.  He trusts us and believes, that out of all the people in the world, we were the best suited family for him to know.  And though our time may be short with Jaston, we have already learned so much and grown faithfully because of him.  In time it will be interesting to see how much of an impact he has on our other children as well.  An influential and respected mentor recently told me “you have given Jaston life, but he has given you eternal life” and I truly do believe this.  I have a long way to go in my walk with Christ and that journey will never end but because of Jaston the door to eternal happiness and life in Heaven has opened to me.  For that reason Jaston, I am so thankful that you have blessed me with your life and the pleasure you have given me in feeling and watching you grow.  Even if your time on Earth is shortened, I will make it memorable and cherish every second we have together.  You will never leave my mind and will always have a special place dedicated to you in my heart.  I do understand that God gave us the means of making decisions but I also know that he will only provide us with what we can handle.  We will bend throughout life but we will not break, as long as we see Him as our rock and our foundation.  So though I feel at times I am going to break I remember that the Lord is always by my side and walking me through every good and bad time.  He is there to support me and hold my hand.  He is there to carry me when I fall and He is there to straighten me when I bend.

Now where was I…oh yes, the two week mark when I was thinking about being induced but was planning another ultrasound.  June 6^th (25weeks 2days) Jaston grew!!! God is amazing.  Another sign that Jaston is in the hands of a wonderful Creator.  He now weighs 1 pound 2 ounces.  That’s 8 ounces in 2 weeks. Yes, for the average person this is really no gain but for me that is huge.  Especially working with all those micro-preemies in the NICU every ounce makes a difference; well every gram makes a difference.  Today we found out that Jaston possibly has a heart defect too.  One of the major organs that didn’t seem to be affected by whatever is going on now seems to have a problem.  At least he has functioning kidneys and we can see him suck and swallow on ultrasound.  He also doesn’t seem to have a problem with showing off his boy parts either, which I guess we’ve known that since 15 weeks because that has been the best and easiest image we’ve gotten on ultrasound thus far.  We’ve tried to get 3-d images of his face but he seems to hide that pretty well.  He either buries his face in my placenta or smashes it against my uterus.  That’s fine Jaston, I will get to see your handsome little face soon enough. We are going to follow-up with pediatric cardiology for a fetal echocardiogram on June 29^th to look at a more detailed view of his heart and we are also going to schedule to have an MRI done (scheduled July 2^nd) to look closer at his brain.  So far he appears to have a cerebellum (the little brain responsible for motor control), a thalamus (responsible for sending sensory and motor signals to the cerebral cortex (the part he appears not to have) and plays a role in regulating consciousness, sleep, and alertness), and brainstem (an important part of the brain that helps regulate sleep-cycles, consciousness, breathing, and heart function).  Dr. Boyle is leaning more towards a cyst that developed in Jaston’s brain.  He also now thinks that Jaston will continue to grow and deliver closer to term.  He has continued to support our decision to continue the pregnancy and has never made us feel that the decisions we have made are wrong.  He has continued to give us options but has allowed US to make the decisions and hasn’t persuaded us either way.  He has been a great physician and although he doesn’t have all the answers (which physicians never do) he has only given us options based on the information he has through ultrasound images and he has been very honest with us on what his experience with this situation has and hasn’t been.  He also has an amazing nurse team that has been encouraging and supportive.  So much so that it makes me want to work with them in the maternal-fetal medicine clinic, hmmmmm…no I love the NICU babies way too much. 

June 28^th, 2011 (28weeks 3 days) Jaston is now 1 pound 6 ounces.  Growing but slowly.  He gained 4 ounces in 3 weeks.  And if you all remember from earlier in this post Jaston wasn’t expected to live past approximately 27weeks and now he is 28 weeks.  Hooray! I know that when I was 25 weeks Dr. Boyle had changed his perception and felt Jaston would continue to grow and deliver nearer to term but I just wanted to point out how much God truly works in Jaston’s and my life.  Without trusting in Him, Jaston would have been delivered by now and we would have had to say our good-byes all too soon.  At this ultrasound the technician kept commenting on all the hair Jaston has.  Interesting to me because Anberlin I felt had a lot of hair when she was born but no one ever pointed out her hair on ultrasound.  I am excited to see just how much hair he has when he is born because on ultrasound you can see it waving around in the amniotic fluid and I wonder what color it will be.

June 29^th we had our fetal echocardiogram.  Dr. Nofil Arrain is the pediatric cardiologist we met with.  I am familiar with him, as he visits and sees babies in our NICU.  His echo tech. is an amazing woman herself and has recently experienced a tragedy.  She lost her infant son due to a chromosome abnormality.  I am thankful she performed the echocardiogram because we were able to connect and talk and exchange contact information.  She is going to be someone I will contact in the future for sure.  Dr. Arrain reviewed the ultrasound images and told us that he believes that Jaston has a bicuspid aortic valve (the is a valve in the heart that usually has 3 leaflets that helps push blood out of the heart to the body but in Jaston’s case it only has 2 leaflets).  Because there is only two leaflets the opening the blood goes through is slightly narrowed and when this happens it can sometime cause the left side of the heart to slow and possibly stop its growth.  So far it appears that his left side of his heart might be very mildly affected but Dr. Arrain stated that if nothing else were going on this would just be something he would monitor after deliver because many adults have bicuspid aortic valves and don’t show symptoms til later on in life like around 30 years of age.  He also doesn’t feel that this heart condition will severely affect his prognosis.  So I guess this is all good news.  We have one more follow-up ultrasound prior to Jaston’s delivery to check on things to make sure that the left side of his heart doesn’t become severely affected.

July 2^nd was our fetal MRI.  What a fun experience.  Not really.  I am someone who occasionally will take an ibuprofen or Tylenol and maybe an Excedrin for a headache.  With my last three kiddos I didn’t take anything but ibuprofen and Tylenol after they were delivered.  So this day I knew would be interesting for many reasons but the first was because they ask that I take Ativan immediately prior to the MRI, not for me, but more to calm Jaston done and try get him to stay still during the scan.  So if none of you have had a MRI before let me fill you in a little.  You are placed on a flat bed on your back (which for someone pregnant isn’t the most comfortable to begin with) and this bed is then slowly moved electronically into the scanning tube.  During the scan you are asked to wear headphones and you can listen to music of your choice.  Once in the tube you begin to realize just how close everything is to you and how little room you have, and for me I started thinking about how heavy the equipment could possibly be and if there was a malfunction I would probably be crushed or started on fire.  I’m not claustrophobic but this space was a little too small for comfort and the noise from the machine is a little eerie.  The best way to cope was to just close my eyes and try to engage all my senses in the music.  Now during a fetal scan they have periods throughout the procedure where a computerized lady will interrupt the music and ask you to hold your breath.  Now again for a pregnant woman this is no easy task.  Holding your breath seems like forever and you swear you are either going to pass out or suffocate.  But you try your hardest because you want the images to be the best they can be knowing that this may give the physicians some answers as to what is going on with your child.  So you cooperate and hold your breath for as long as you can when you feel your little one flip over in your belly or at least this is what happened in my case.  My thoughts were “seriously Jaston…I thought the Ativan was suppose to calm you down yet every time they ask me to hold my breath I do my part but you just move around.” I can’t help but smile and quietly laugh because this is how it goes.  Jaston will be Jaston and I’m okay with whatever he has planned.  I enjoy his movements anyway and wasn’t too thrilled at the idea of “calming” him down.  I didn’t think the Ativan had any effect, well I know it didn’t on Jaston, but when the scan was complete boy did I notice an effect on me.  I felt awful, I seriously felt like I had the flu or a hangover.  Never again well I take this medication and man I feel bad for the babies that we give this to in the NICU.  I guess that’s how it must work though, you feel so crappy that you just want to sleep, in turn “calming” you down.  Based on the images from the MRI the physicians weren’t able to make a diagnosis or confirm anything.  The results read something like large supratentorial cystic change with minimal parenchyma visualized.  This is thought most likely to represent a form of holoprosencephaly (failure of the brain to divide into two hemispheres) or possibly hydranencephaly (a condition where the cerebral hemispheres are replaced with fluid).  But again, no concrete diagnosis and possibly because Jaston moved quite a bit during the scan.  Oh well, I’ve decided that God will give us the answers when it’s the right time and that we just need to be patient and enjoy the time we have been given with Jaston.

Our next ultrasound was July 11^th (30weeks and 2 days).  At this appointment Jaston weighed 1 pound 10 ounces.  He had his hands crossed in front of him so perfectly and we were able to really view what his arms look like.  To every other person this may be scary but to me this is the least of my concerns.  He is perfect in every little way and I’m happy as long as his heartbeat is still strong and he is growing.  We were able to see that he actually may have thumbs too.  Up until this point we had been told that he may not have thumbs because this is often associated with the missing radius.  The thumbs may be underdeveloped but they are possibly there.  My thoughts on this were “great, thanks for the information but he’s growing and has a strong heart and that’s all that matters now.”  One amazing and kind of creepy thing we saw today too was Jaston blinking and moving his eyes around.  This was so fun to watch.  I wonder what color eyes he will have?  I know most babies are born with what appear to be blue eyes but I do wonder this.  My children and Zach and I all have blue eyes so I assume his will probably be blue as well.  Monitoring for growth and watching for any signs that Jaston is becoming stressed are the two main concerns for me at this point, so we scheduled another ultrasound in two weeks.

July 25^th (32weeks 2days) Jaston is 2 pounds 2 ounces.  He continues to open and close his eyes for us to see and he moves them from side to side.  Pretty uneventful ultrasound when it comes to new information but always worth the visit to see my little man moving around.  Because we haven’t really seen any changes we waited 4 weeks before having another ultrasound.  On August 21^st (36weeks 1day) we had another ultrasound.  Jaston is 2 pounds 12 ounces and appears to be taking practice breaths on ultrasound.  What a great sight to see.  I hope this means he is preparing to breathe on his own and will breathe on his own after delivery.  This time we had a newer ultrasound tech and I wasn’t very impressed with her.  I told her that we enjoy ultrasound pictures to take home as they are potentially the only images we will have of him alive and she just kind of shrugged her shoulders and said okay I will give you a cd at the end.  Every ultrasound tech prior to her has been so wonderful and understanding and will give us an array of images but nope not her.  I don’t know why.  Maybe it’s because she is younger, newer and unfamiliar with how important her role is in helping families grieve and get through the process of coping with a difficult pregnancy and life changing event.  Needless to say I let her scan Mr. Jaston and she gave us four ultrasound images, none of which are useful because they are of nothing.  I mean they are of something but nothing a person can make out.  This appointment Dr. Boyle became concerned again.  He stated that Jaston’s bones appear soft and not well mineralized.  He thinks this may be a result of something called hypophosphatemia (low phosphorus in the blood).  He told us to prepare for the possibility of slightly more stressful labor and delivery (L& D); that Jaston’s bone structure in his skull may not be strong enough to push open my cervix so I may need to receive Pitocin to increase the intensity of my contractions to assist with opening my cervix.  He also thinks that L & D may be more stressful on Jaston as well and we should think about whether or not we want to listen to his heart rate during this time.  He stated that sometimes listening to his heart rate may cause more anxiety because he may not tolerate L & D very well but he encouraged us to not have a c-section performed in this event.  I understand why he doesn’t want this to happen and I don’t want to have a c-section either.  That is a major surgery and because I have had three uneventful vaginal deliveries in the past I should continue this way.  If I were to have a c-section this could interfere with the possibility of having vaginal births in the future and also affect the health of future pregnancies.  The thought of Jaston not surviving L & D or at least not tolerating it well and causing him added stress breaks my heart.  He has made it so far and has continued to show how strong he is that I want to see him survive L & D.  I want to see him come home with us and live with his brother and sisters.  I want him to know what life is like at home.  I want him to feel the comfort of our home.  I want to feel the comfort of him in our home.  I’m not ready for him to leave this earth and I probably won’t ever be ready but I am ready for God to shine his light on my family and me and walk us through what seems like a dark and dreadful path.  He has helped us get this far and I know he won’t leave us now.

Although our faith and the power of God have helped us cope throughout this pregnancy, there have been many other individuals walking with us.  My husband and I have been meeting with a palliative care team (Dr. Fenton and Pam) at Sanford along with a chaplain (Bill) and a child life specialist (Michelle).  These individuals have helped us to develop a birth plan (which Dr. Boyle sees as a great idea but wants us to remember to not set anything in stone until we meet little Jaston) and explain what’s going on to our children.  They have helped Zach and I to have a better understanding of what to expect and what to plan.  We also have had much support from family (especially my mom and sister, Monica(thanks for the knitted hat and diaper cover for him to wear) and friends (especially Natalie and Robin for lasting memories and maternity photos).  To those who have continued to support Zach and I throughout this process but I did not specifically mention, please don’t be offended.  I have not forgotten about you nor will I ever disregard the contributions you have made in our lives.   I thank you all for your thoughts and prayers.

                So here I am now, with Jaston defying all odds, awaiting his arrival and trying to prepare as best I can for any and everything.  I am hoping that the day will take it’s time in getting here.  I’m enjoying every moment I have with Jaston and every movement he makes.  He is so strong and I am so in love with him.  I have truly been blessed with his life.  The Lord has given me time with him and if this is all I get I will not have any regrets.  The decisions my husband and I have made have been made with the assistance and guidance from above.  Because we have leaned on God throughout this pregnancy we feel no guilt or shame in these decisions.  How blessed we are to have such an amazing God.  Some people in our situation choose to get mad and angry at Him.  I don’t believe Zach and I have done anything wrong to deserve this nor do I believe our God is a punishing God.  I believe that we were given this opportunity to draw nearer to Him and see how amazing our lives are with Him in it.  I believe that we are blessed to be chosen out of everyone in this world to be Jaston’s parents.  I also believe that because of our faith in the Father, the Son, and the Holy Spirit, this experience hasn’t been easy but it’s been manageable.  I will continue to make updates as often as possible but future posts will hopefully not be so long.  I also will be positing some of our ultrasound pictures and maternity photos, hopefully tomorrow if I’m not in labor.  Posting pictures will be the easy part; it’s the writing that takes all the time.  Thanks for reading our story and please continue to pray for us during this difficult time.