Thursday, February 13th, 2014 - 26 Week High Risk OB Appointment

Before I update regarding the appointment I wanted to share something that I read recently.  A friend of ours sent us a devotional book and the first day I read it, which happened to be my birthday, struck a cord with both of us.  It was so fitting for what we are going through and brought tears to my eyes as I read it.  I often need reminders lately to trust Him and His will for our son whatever that may be because His plan is not always what we have planned in our lives.  

"I am with you and for you.  You face nothing alone - nothing!  When you feel anxious, know that you are focusing on the visible world and leaving Me out of the picture.  The remedy is simple: Fix your eyes not on what is seen but on what is unseen.  Verbalize your trust in Me, the Living One who sees you always.  I will get you safely through this day and all your days.  But you can find Me only in the present.  Each day is a precious gift from My Father.  How ridiculous to grasp for future gifts when today's is set before you!  Receive today's gift gratefully, unwrapping it tenderly and delving into its depths.  As you savor this gift, you find Me."

Today as I drive downtown I think about how very reminiscent this all seems. It has been one month since we found out the news of Baby Nelson and it still seems as unreal today as it did the day we found out. I traveled to see the high risk OB the Monday following finding out and here I am one month later going to see him again. Today is my 26 week check up and I will say that every time we have to go to these appointments it is very bitter sweet. I am blessed to see our son and hear his heart beat, but at the same time getting confirming news on his condition is still hard to hear. 

Today Baby Nelson was weighing, according to sonogram measurements, 3 pounds 13 ounces, 2 pounds more than two weeks ago. The doctor said that our son is a big boy in general but tells us that his tummy is measuring the size of a 34 week baby.  The reason for his tummy being so big is due to dilation of his bladder, ureters, and kidneys. As some may ask, is he in pain or suffering because of this.  The answer by the doctor is since babies don't have complete development of nerve endings quite yet is that he would hope not. Unfortunately since you can not test babies in utero or otherwise it is hard for anyone to know this. Our thought is that he doesn't and maybe this is just a way for us to feel ok about everything going on. Another measurement we got was his leg bone - it is measuring as a 28 week baby.  He did measure his bladder and it was 3.2 cm. On January 30th his bladder was measuring at 3.5 cm. He stated that his ureters are very dilated and this is from backup from his bladder. His heart rate was 128 today.  My husband asked the doctor today if he has ever seen a miracle baby with a case such as ours. He said that he has seen miracle babies before but not with conditions similar to our son's.  We are both aware of our sons condition and what we continue to see and hear when we go in to these appointments, but we still would love for God to grant our son with a miracle of complete healing as most parents would. 

Again, we are still in continual prayers for our son and God's will for him. We are truly blessed by all the support and love we have received during this time.  Thank you again, we are truly appreciative of it all. 

Thursday, January 30th, 2014 - 24 Week OB Appointment

Today we go back to my OBGYN for our 24 week check on Baby Nelson.  This is the first time we have seen my OB since the 20 week appointment where it all began and the day we learned of our son diagnosis of LUTO.  I will say that going back to see her was tough and nerve racking.  She and I had talked often during that week we were at TCH so she was very aware of what had gone on and what was to come.  

My appointment was at 9:40 and it felt like forever before we were called back for the sonogram.  Once we were called back for the scan our sonographer had told us that she had went over my file and asked us what else we thought she needed to know.  We told her we knew of his condition / diagnosis of LUTO and all the complications.  We asked her if she would please share any new information with us during the scan as nothing at this point would be of any shock to us.  She said she would share whatever she saw with us.  As the she scanned Baby Nelson we were all talking and we realized that she was a believer also and it comforted us in knowing this.  She asked if we wanted to hear his heartbeat and I of course said yes.  His little heartbeat was 137 today and although this was still hard to hear knowing the outcome that lies ahead, it was comforting to have him for this moment in time.  She measured his bladder again and today it is measuring 3.5cm.  On January 13th his bladder measured 3.8cm.  This might seem like he is doing a little better but understand that he is still unable to urinate so what is in his bladder is backing up into the ureters (which are dilated) since there is no where for it to go.  As she continued to finish the scan and do some measuring she said that he was weighing approximately 1 pound 14 ounces and was measuring ahead by a little over a week, but this was due to the dilation of his little belly.  She was unable to find his feet because I have low amniotic fluid that it makes it more difficult, however, we did see that his little hand by his face and we suspect that he might be another thumb sucker.  This made us both smile since our other son is also a thumb sucker and we believe he did it while in utero.  As she finished, she printed off pictures of our little boy for us to take with us.  

Although this is still difficult to see him and hear his little heartbeat, he is still our little boy and we still love him through all of the pain we are going through during this time.  It is hard to have confirmation time after time of what we already know but we are still praying for our little boy and God's will through it all.  

After a very long wait we finally get to see my OB and we discuss what will continue to do over the next several weeks.  I will continue to see the high risk OB monthly and then see her also monthly (rotating between them so that I see them every two weeks) till we get closer to 36 / 37 weeks when we go in to meet our son.  I will continue to be scanned every time I go in for an OB appointment as this will help monitor him as well as myself.  She suggested that both of us get counseling outside of family and friends that are supporting and praying for us during this time.  She did get a blood sample from me to check my blood count levels to make sure that I am doing ok and told me that she does not need me to do the glucose test.

As I close this post out I want to say thank you to everyone who is praying for our precious little son and our family.  We are so overwhelmed and blessed by all the love and support each of you has sent our way.  There are truly no words that can express our gratitude for it all so THANK YOU!!

"But by faith we eagerly await through the Spirit the righteousness for which we hope.  ...The only thing that counts is faith expressing itself through love."  Galations 5:5, end of 6

A Father's Perspective...

Many of you who know me personally, know my take on social media, public information, etc.  I don't have a Facebook, instagram, pinterest, etc. (most of it I don't even know how it works or what it is).  With that said, I felt like a blog post from a Father's perspective was important for 2 reasons:

1.  I'm hoping by putting some of this down it will help heal some of the pain I have been going through since we encountered the news of LUTO and our son.

2.  I hope that this will help another father out there who is going through the pain of their own - whether it's a similar situation or something that just "shocks" their life

So here it goes....

Most of my life, and especially throughout difficult events in life, I have been able to apply a "realistic" perspective (or what I deem as realistic).  By that, I mean that my mind typically looks at something as logical and then works through the steps.  Almost like a computer program steps through code - "If this happens" "Then this result"...  I guess I think back to 2nd grade where the goal was to make a peanut butter and jelly sandwich with all the steps (i.e. open the bread wrapper, put your hand in the bag, pull out 2 slices, etc.).  Then your classmate would stand there and try to make the sandwich exactly with your written directions and no matter what, it turns out like a disaster.  Anyway, I'm rambling but that's just how I think.

With this event though, this was different.  It's difficult how to say this, but being told that a part of you (our son) is incompatible with this world or life in general shattered me - which I've always considered myself strong through other life events.  There is no logic - logic doesn't apply here.  That's the cliff notes version of this post.

The emotional side of this started with the OB saying that the "kidneys aren't developing right".  Thinking back to that moment, I probably said "this will all be okay" or "we'll get through this" or something to my wife, but that was only the start of the journey that my wife refers to as the "roller coaster from hell."  There are no words to comfort this time, especially when our child's life is at stake.

After 3 days of sitting in the hospital and meeting with doctor after doctor, I asked question upon question about available options, realizing time is of the essence for lung development and relieving any further pressure on his kidneys due to the blockage:

-  How does the shunt work?

-  Does it make sense to tap the bladder tonight (at 7pm) to release pressure from the baby immediately and get the kidneys processing?  Let's get moving!

- Is there "after market" amniotic fluid to pump into the womb to keep our son comfortable and promote lung development, which is essential at 20 weeks?

- Where's the artificial kidney and why hasn't that been developed yet?

I feel like I exhausted the doctors with question after question, and I was probably like an attorney asking the same question a different way, hoping for a different answer - this is the definition of insanity - but I was desperate.

The phase after shock to me was what we'll call the "why" phase.

-  Why this child?  What did he do to deserve this?

-  Why me?  Why my family?

-  Why did you let the pregnancy get this far and not miscarry or just not happen in the first place?  Why the heartbeat and evidence of a "soul"?

Of course, this led into other areas:

-  Why the 4 year old in the lunch room of the hospital hooked to numerous tubes / machines in a wheelchair when she should be running on the playground?  Her dad just enjoying the walk he could have with her (to the lunchroom).

-  Why the 6 month old that looked like she had down syndrome in the lunch room where I overheard the mom say that they'll get to spend her birthday and their anniversary at the hospital?

-  Why cancer (in all ages)?

-  Why the pain for so many?

-  Why do bad things happen to good people....

The week going to / from the hospital, my wife and I had a lot of windshield time.  We talked about the roller coaster of emotion frequently and about someday having the answers to these questions when we meet our Creator.  I recall saying - after I deck him - for thinking that I'm strong enough to go through this and turn my family upside down.  The "why" phase added fuel to the fire of nothing but anger towards our Creator and the world we live in.

After about 1-2 weeks, I gave up on the "why" phase - it's not fruitful and it doesn't make sense.  It makes me a worse person and more than anything I started to doubt my own faith, and I won't let anything overtake that.  When I was reminded of faith, let me guide you to a couple verses that stuck out to me specific to our situation (book of Job):

1.  Chapter 1:18 (NIV): 18 While he was still speaking, yet another messenger came and said, “Your sons and daughters were feasting and drinking wine at the oldest brother’s house, 19 when suddenly a mighty wind swept in from the desert and struck the four corners of the house. It collapsed on them and they are dead, and I am the only one who has escaped to tell you!”(NOTE THAT JOB HAD 7 SONS and 3 DAUGHTERS - that wasn't all that happened to Job in Chapter 1 or the other 42 Chapters of the book)

2.  Chapter 1:22 (NIV):  22 In all this, Job did not sin by charging God with wrongdoing.

It's after reading this, and consulting with a person that I have great confidence in, that I came to the realization that this isn't about me, this isn't about my wife, this isn't about nature or hereditary issues, or anything to that extent.  This is about our child and his arrangement with God.  I don't know what God's purpose is or why here, why now (the "why" game), but I do know that for some reason God is using our family, and my wife's body, as a vehicle for His plan.  Please understand that this doesn't discount the emotional impact on my wife or me, but that is secondary to celebrating the time we have with our son until God fulfills His plan.  And for this short, precious time we will celebrate what we do have with him until he passes into a better life than we could ever provide for him.

Like I mentioned, the emotional side for my wife and I are considered very important (which is why we are seeking counseling outside of our family unit).  However, this is secondary to cherishing what time we do have with our little guy.  And no matter how our son is presented to us (whether alive at 37 weeks, or passing in the womb between now and then), we will proudly hold him and love him as one of our own - a gift from God that the sonographer said most perfectly "he's too good for this world."

When I mentioned before that this has "Shattered" me.  It has.  I use to be a strong person that would only show emotion very privately, if that at all.  This life changing event has truly allowed me to open that part of my life up and be vulnerable to circumstances in a more "real" perspective (not like a logical / realistic person).  While the sobbing has subsided (even though the passing has not come), I will say that there's times I still mourn our circumstances and it typically comes through seeing other children or even our current son, who is a great blessing to us:

- Seeing a baby boy in the waiting room of the doctor's office

- Watching our 2 year old chase a ball at the park

- The first time our son said "night night" with a big smile

- The first smile and laugh

- Carrying a baby through the neighborhood and pointing out grass, trees, the moon, stars, airplanes, rain, a golf course, colors, cars, etc.

All of these are things I won't get to share with our little boy, and those are the moments that make me sad.  However, there's something else more important that will make God happy, and I must surrender my time with our son for Him.

Throughout all of this I have learned to count my blessings, cherish the time I do have with those that are in my life today, and take time for others - time is precious and we should all love the time we have with who we have.  Thanks again for the continual prayers - we do appreciate them.

A Mother's Perspective...

When we started trying to create our little family, I had no idea how difficult the process would be.  I remember wondering if we would ever have children and crying countless times because for so many it was so easy, and for us it was becoming increasingly difficult.  I would have never imagined from the time we started fertility to now (approximately 6 years) that we would have dealt with everything we have.  

We tried many different treatments from clomid, Intrauterine insemination (IUI), and In Vitro Fertilization (IVF.)  At my first IVF cycle, we found out that we were pregnant with identical twins in February 2010.  We were so excited and yet so nervous.  We heard their heartbeats and everything seemed to be going smoothly.  At 9.5 weeks we found out that I had miscarried and we were devastated.  This seemed so unfair and we had a thousand questions of why but never got one answer.  It was hard for us to experience this since it was my first pregnancy.  It was difficult to decide what to do next and since we didn't have any frozen embryos from this cycle, we both knew that meant doing another full IVF cycle.  We talked and I said that if we were going to do this again we needed to do this over the summer since I was a teacher.  So July 2010 we did our second IVF cycle.  We had four embryos and they transferred two.  I found out I was expecting just one this time and I was so nervous.  I was praying diligently that this little baby would be healthy and this pregnancy would be different.  In April 2011 we welcomed our son and he is the absolute light of our lives.  He has been an incredible blessing to us both and we could have not experience anything more perfect.

After realizing that we were not having our second naturally we decided to go ahead and do a frozen embryo transfer (FET) with the last two embryos we had.  We discussed that if this didn't work that we were ok with being parents of one child, if that was God's will for our family.  After going through all that we had already gone through this seemed less emotional or maybe it was because I was trying to remove myself from it all so I didn't get emotional about it if something didn't work out, not really sure.  So August 2013 we head back to try again.    I prayed so much if this was going to work that God would allow that but if it wasn't meant to be to just to come back with a negative result.  I find out that we are expecting again and it is just one.  We were shocked and excited that it worked.  

This pregnancy started out so different as most mommies experience, no two kids are the same and neither are the pregnancies.  I wasn't gaining weight like I had with our first son, not that I was complaining, but found it odd.  I of course ask the doctor and she said it was completely normal, again, not all pregnancies are the same.  We did genetic testing at 11 weeks to find out the sex since it was covered by insurance.  We both wanted a healthy baby, but were ecstatic to find out we were having another little boy.  At 16 weeks I am still a bit nervous on the whole not gaining weight bit so I ask my doctor again, I know why would I want to gain weight, but I am still wearing my normal clothes.  You probably wouldn't notice I was pregnant unless you knew me.  She again reassures me that everything is fine, my uterus is growing and his heartbeat is strong, nothing to be concerned about, enjoy it while it lasts as I will pop soon enough.  So I quit worrying about it and just go on knowing he will grow and so will I.  

Week 20 arrives and I cannot wait to see our little boy again.  I hadn't seen him since my 8 week sonogram.  I wished someone had prepared me for this appointment since I had no idea what we would be told in a few short minutes.  When we go back, our sonographer was the same one that we had when we found out I miscarried the twins (my hubby is not fond of her, not that is her fault, but just a bad experience).  So we are there doing the sono and it was so good to see him and hear his heartbeat, but things started to seem off when she handed us pictures and tore one off.  When she left the room I looked at my husband and said something is not right, she NEVER does this.  He said to wait and let's see what the doctor will say.  When the doctor gave us the news I fell apart.  I think I said, "It is always something bad when she leaves the room."  I couldn't keep it together and was so upset that we were dealing with this at 20 weeks.  Remember what I prayed at the beginning of all of this, I just wanted everything to be ok and it wasn't.  

Heading downtown I call my mom to let her know what was going on with Baby Nelson and that I would keep her updated.  It was so difficult to talk through the tears that fell down my face as I was trying to explain what little I knew about Baby Nelson's condition to her.  I then had to make phone calls to two friends to figure out how our other son was going to get picked up from school.  These calls were not any easier and of course tears still falling as I repeat over and over what is going on to them.  I think watching my husband call his dad with tears flowing from his eyes was even more difficult to see.  This whole day was a complete whirlwind and I had cried most of the way home that night not knowing what was really going on with my baby.  I was so appreciative that my doctor called to check on me that evening just to see what we found out and what the next steps were.  

Wednesday morning arrives, I barely sleep that night, and I was exhausted.  I knew this day was going to be long and lots of things were going to happen.  I was doing ok until after the procedure happened and I fell to pieces in the waiting room.  I remember my husband asking me why I was crying and I honestly didn't know why.  I think with all that was going on I was just so overwhelmed that crying just seemed good at the time.  I made it through the rest of the day ok, even with all the information we had received from the pediatric nephrologist, the echo, and the final staff meeting.  We had talked off and on all day about the information we had received but it wasn't till we headed back home that I broke down again.  I was so concerned, mostly about what I had heard from the pediatric nephrologist, with how we would deal with or make decisions with having a son already.  My biggest and greatest fear was that our current son would think I forgot about him or resent me when he was older because of all we were dealing with in regards to his baby brother.  Even though at this time I didn't have the final outcome I was just so consumed with the "what ifs" for our family's future.  I remember telling my husband I didn't want to do a coin toss and pray it was the right decision for our family.   It didn't seem fair, but really at this point what was fair?  As we pull down our street I try to wipe the tears from eyes and clean my face up before I go in to see our babysitter but then I say who cares she knows me.  

Wednesday night and Thursday I spent praying, crying off and on, and talking with family and friends that knew what was going on.  I prayed so hard for clarity that God would just give us a clear outcome and we would NOT have to make a decision for our family, because I wasn't ready to go down that road.  Thursday night I slept so hard from mere exhaustion of emotions.  Friday was a big day, a day I thought I had prepared myself for, but really I didn't know how unprepared I still was.

We head off downtown and we talk on our way there about the day and all that it would bring us.  We both again say how much we just want clarity and definitive answer to it all.  Right before we get to TCH I call my former pastor and he prays with us on the phone.  It was good to have so many prayers being sent up for us and we just wanted answers to it all.  I did good all day with holding it together but it was when we got the news that our little baby was not going to receive any intervention to help him did I truly lose it.  After the staff left the conference room I cried so hard, uncontrollably, and just asking why over and over and over.  My husband held me tight and we cried together not understanding why we were having to go through this.  As we leave downtown we then make difficult phone calls to our family to let them know, each phone call with just more mourning regarding the outcome of our son.    

As I stated before, we prayed for clarity through this entire process and that a decision for intervention would not rest on us, and this was a blessing that our prayers were answered.  The reason this was important is that we felt unprepared to make a decision regarding the quality of life our son would have, and the long term effects it would have on our family.  We both decided for us that I would carry our little boy till that time God decides to take him home.  We both hope for a miracle and pray that whatever His will for our child that He would prepare us for this time.  These next few months will be very difficult and challenging for us and our family, but God has truly blessed us both with wonderful friends and family that have supported us and prayed for us during this time.  I ask that if you are reading this that you pray for our little boy, as we want the most comfortable and peaceful time for him as long as we are blessed to have him with our family.  

As we continue down this very difficult road I will update as I know more and will try to keep you updated with his condition.  Thanks again for all the prayers that are going up, they truly mean the world to us and our family.  As I finish this for today I am reminded of this scripture that a nurse gave to us in early 2010, "With GOD, all things are POSSIBLE."  Mark 10:27 - I still carry this coin everywhere I go.  

DNA Results

As I stated we had three DNA tests done on Baby Nelson to determine if there was another factor besides just his kidneys.  I received a phone call from our genetic counselor on Tuesday, January 21st to discuss the results from the testing.  I am going to attach part of the email that she sent me since she does a much better job explaining it than I ever could for you.  

"The results showed 46,XY,add(4)(q35), which indicates a male baby with 46 total chromosomes (the correct number). On one copy of chromosome 4, the lab noted additional chromatin (genetic material) of unknown origin. The location of the extra material is 4q35. The other copy of chromosome 4 did not have this extra material. According to the lab, this material is suggestive of satellite DNA, which is a type of DNA that is made of many repeating sequences of letters and is not involved in making proteins in the body (non-coding). However, we are unable to tell that definitively on chromosome analysis alone. It is also possible that this material represents an unbalanced translocation. An unbalanced translocation occurs when two chromosomes exchange information with each other and some genetic material is gained or lost.

  

Often babies with an unbalanced translocation will be miscarried early in the pregnancy due to abnormal development.  However, there is chance that a pregnancy will continue to term and result in a baby with birth defects or other health issues. The specific effects will depend on what genes are in the area that was lost or gained. Chromosome microarray analysis is a technique to read through the chromosomes and detect gains and losses of material and determine which genes are affected. It can also determine whether a gain or a loss is likely to have clinical significance (health effects) or not. 

Unfortunately, Chromosomal Microarray Analysis (CMA) was not possible due to insufficient DNA from the fetal blood sample. 

Occasionally, in a completely healthy individual, the chromosomes will be arranged in a balanced translocation, where material is exchanged between chromosomes but nothing is gained or lost.  As long as the correct amount of genetic information is present, this rearrangement of chromosome material will not affect the health of the person who carries it.   When a carrier of a balanced translocation produces egg or sperm cells, there is an increased likelihood that the resulting egg or sperm cells will have an unbalanced translocation. 

If this chromosome finding happened new in your son, the chance of it happening again in future pregnancies is low. If either you or your husband is a carrier of a balanced translocation, future pregnancies would be at an increased risk for miscarriage or health issues. People with a balanced translocation can also have healthy babies with either normal chromosomes or a balanced translocation like their parent. The way to determine this is to analyze yours and your husband’s chromosomes."

So with this being said, we can request the CMA to be done again after Baby Nelson is born to find out exactly where the extra material on chromosome 4 came from.  If further screening needs to be completed we can request that also.  This will also help down the road in further genetic testing of us (as the parents), if we consider having children in the future.

Thank you for the continual thoughts and prayers for our precious son.