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.

Monday, January 13th, 2014 - High Risk OB Appointment

After a weekend of letting it all settle in and knowing the reality of the situation is it is still so surreal and we are all still in a state of shock.  Today I head back downtown to see the high risk OBGYN, not sure why he wanted to see me but we go anyway to find out.  We finally get called back and he performs another sonogram on the baby.  He checks his bladder and measures it again and finds that it is only 3.8cm.  He confirmed that his kidneys were just not functioning as they should.  This information only adds more to the reality of what we are facing, but we are still holding on to the prayers and hope of a miracle for our little boy.  He goes over with what we have decided to do and says that from here on out that we would continue to be monitored every two weeks.  

I am still so amazed and thankful for the doctors that God placed in our lives and the reaction that each one of the had in the care and urgency of our baby.  It was good but emotional once again to see him and hear his heartbeat today but so glad that I still have time with our boy.  Today I am reminded of this scripture,  "Come unto me, all ye that labour and are heavy laden, and I will give you rest.  Take my yoke upon you and learn of me...for my yoke is easy, and my burden is light." Matthew 11: 28-30

Day 3 - Friday, January 10, 2014

Today began very early for all of us with a lot on our minds to what the day would bring.  We left for TCH at 6:45am and our first appointment would be another sonogram at 8am.  After leaving TCH on Wednesday we both had been praying for clarity and strength that whatever the outcome and results, God's will would be clear and not put us in the middle of this - either the results would be favorable (i.e. good urine regeneration and improved urine results) or the opposite.  Neither one of us felt strong enough to make a decision when it comes to quality of life for our son - we just needed a clear path from God!  

After arriving to TCH we finally get back for the sonogram and they start the scan.  Right before they started the genetic counselor we had dealt with on Wednesday came to tell us that his FISH results were back and they were normal.  This was a HUGE relief to us because we knew pending what we were about to find to out this would not be a factor for us in continuing an intervention if necessary.  They measured his bladder to see if he produced enough urine to possibly do another bladder tap, his bladder measured at 5.1cm (it was 5.8cm Wednesday).  They decided that this was sufficient enough and we would go ahead and tap his bladder again to check his urine.  One of the other LUTO specialist doctors performed the procedure this time and they were able to pull 35cc of urine from him.  This was a bit concerning to us because they pulled 60cc on Wednesday, but they assured us this was normal.  

After the procedure we were taken to a conference room to meet with a pediatric urologist.  The pediatric urologist discussed with us about how a surgery would be performed to help clear the obstruction after the baby came to term and possible different ways this would be taken care of.  He would only perform this surgery once the baby was stable and there were ways that we would be dealing with this until the surgery happened.  Again, this was information that would be necessary down the road and we were still collecting information about the condition our little boy.  While the urologist's perspective was important, our minds continued to go back to our son's kidneys.  This organ function is imperative to the growth / term of his lungs and development.

After lunch we head back to wait to meet with the staff.  It is so difficult to concentrate on anything at this point but this article kept coming across my Facebook page and so while we waited I read it.  It really struck me and I think it was a reminder from God to me that He never left us and He is there through all of this.  Here is the article: http://lemmonythings.com/2014/01/05/god-will-give-you-more-than-you-can-handle-i-guarantee-it/

Finally we met back up with the staff to discuss the urine analysis from the bladder tap that was performed earlier that morning.  In the conference room with us was three doctors (the director of OB for the hospital, the main specialist we had been dealing with mostly all week, and the another specialist), two residents, and our clinical coordinator.  Up to this point we had both been anxiously awaiting the news we were about to receive, not truly prepared for it all.  As they all come in and sit I get a sinking feeling that the news we were about to get was not what we wanted to hear.  Our main doctor started off by stating that they urine analysis came back but the results unfortunately were similar to Wednesday therefore no intervention could be done.  Our hearts were shattered.  We were both in complete shock with the information we just received and couldn't believe what we were being told.  Both the urine quality and quantity were inadequate to develop the lungs and sustain life outside of me.  The pain is indescribable - hearing this and feeling him move in me at the same time.  It's tough understanding and processing God's will in all of this.

They proceeded to tell us they were so sorry and that there were options for us to take from here (obviously we are hearing little past the news they just communicated).  The three options that we were given were D&E (dilation and evacuation), preterm labor, or carry till he passes or to term.  These were all options that we had already discussed prior to knowing these results, but we could not process this.  

Please note, it's extremely difficult thanking the staff and doctors of TCH with this news just communicated.  However, they were nothing less than exceptional  and sitting there saying "Thank you" with tears flowing down from both of us is very difficult.  They truly were outstanding in all aspects, including the emotional comfort through the roller coaster of hell. 

More to come on a Mother's and Father's perspective of this journey...

Day 2 - Wednesday, January 8, 2014

Our day begins at 9am at TCH with a visit to a genetic counselor to discuss some of the tests that would be done on our little one and to discuss possibility of us having genetic screening also, we opted out of this at this time as he is the priority (not us through genetic screening).  The DNA testing that they would be doing on our little man was a Chromosomal Microarray Analysis (CMA),  kyrotype, and FISH.  These are all tests that would check for other abnormalities that he might have in conjunction with his LUTO condition.  The results from these tests would play a large role in how any intervention would proceed.

Shortly after our meeting we went back to a sonogram room where I would have two procedures done similar to an amniocentesis.  The two procedures that were being preformed are a cord blood draw for the DNA testing and a bladder tap.  They bladder tap was to remove urine from his bladder to check different levels to see if his kidneys were functioning.  The other part of this that they will be looking for on Friday is to see if he bladder fills back to what it was before they tapped it.  They measured his bladder and it was 5.8cm prior to the tap and they removed 60cc of urine.  These tests were very emotional for the both of us and our hope is that we will get better clarity of what is really going on with our little baby.

Right before we left for lunch we spoke with a pediatric nephrologist (kidney specialist) who we would be working with if our little boy comes to full term.  He went over all the details and expectations that we should have during this time.  Our first question for him was what his thoughts were about the severity of our son's condition.  He said that he did look at all the sonograms pictures prior to meeting with us and he felt that our case was severe.  He also stated that he was not a fetal doctor and it was only from what he could see based on the images that he is given, nothing could really be determined for certain until the baby arrived.  He told us that our case would be challenging and that we could expect our lives to be changed.  He told us based on this information that we should expect that he would be in the hospital for the first eight to ten months.  When he said this to us I think both of us thought of our other son we had at home, I think I might have even said "WOW" out loud.  As a mom of one already I was struggling with the thought of having our second child in the hospital for that length of time and how I would balance it without allowing our oldest son to feel like mommy forgot about him or only cared about his baby brother more.  All the emotions came rushing back once again but we were holding it together.  We also discussed that once he became stable that he would be put on dialysis and would remain on dialysis till a kidney transplant happened around the age of two to four.  He told us that a kidney transplant would last approximately ten years and that after that he would have to go back on dialysis or have another transplant.  We do know that his little kidneys are damaged but to what extent we really do not know (this is what the bladder tap was to help identify - both the quality and quantity of the urine).   We also asked him what the mortality rate of babies with this condition and he said that all depends on how stable that baby was after birth and how developed his lungs were.  He said that if his lung development was good that we could expect a 25% to 50% mortality rate, if his lungs were not developed and he went into pulmonary hypertension we could expect 100% mortality rate.  Once again my heart sinks more.  All of this information from this doctor was overwhelming and another hard pill to swallow.  At this point we are not even close to talking about these steps because we don't know the condition of him and our steps that we will take to get him to term, however all of this information was very good to have and gave us an idea of what we would need to expect down the road.

After lunch we head back to another room to have an echo of the baby's heart to find out about the information we received early in regards to the fluid around it and to see if there is anything else going on.  This scan took an hour and fifteen minutes and they took over 140 pictures of his little heart.  They did confirm that his right side of his heart had fluid around it and that both ventricles were thick, this is due to the kidneys not properly functioning as they should and putting more pressure on the heart.  They did say that his heart looked good and did not appear to have any other issues, this was a huge relief.

At the end of the end of the day we reconvened with the staff to review the urine analysis and to discuss the options from this point forward.  The numbers were better than they had expected (a good sign), but they indicated some kidney failure.  The doctors were mainly concerned that the bladder was not as full as they normally see in LUTO fetal patients.  So our hope for Friday is that his bladder would fill back to or close to 5.8cm so that another bladder tap could be performed.

Pending this there would be a couple of different routes we would take.  If they are able to perform another tap on Friday, we would compare the results to today's results and
1) if the results come back and the analysis is better then we would proceed to putting in a shunt.  The shunt is a surgery and does have some higher risks for me as a mama but would help our little boy's bladder to drain his urine into the sack to create amniotic fluid and to help with lung development.  If this is a route we can take, the surgery would be performed the following week.  
2) if the results come back and the analysis is the same or worse then no intervention can be done for our little baby.  

Also, the FISH DNA results will come back on Friday and that would also tell us what we can do.  If those results show any negative outcomes we also will not be able to provide an intervention for our baby.  The reason for this is that there could be another cause to his condition and it would be too much risk for us to proceed if that were the case.

We left this day feeling like we had gained more information than we ever expected to have, yet this emotional roller coaster of hell has just begun and is far from over.  We would do anything for our son, but as a parent going through this we feel so helpless as well.  We are still processing everything and praying for clarity and that we as parents to this very little baby make the right decisions for him and for our family.

Day 1 - Tuesday, January 7, 2014

Today started as any normal day...wake up, get ready, eat breakfast, get little man off to school, etc.  Today was also a special, a day that we would go to check on Baby Nelson and confirm that he was in fact a BOY.  We were excited as this was going to be the last time that we saw him before his big arrival into this world.  However, we had no idea what this day would bring to us.

We arrive to our 20 week appointment at 9:30am and we go back for the sonogram.  The sonographer was doing her usual check and tells us she is having a hard time finding the little boy part because his legs were together, bummer.  His heartbeat was strong and everything seemed normal to us.  She prints some pictures off and as she hands some to us she tears one off and says wait here your doctor might want to take a look.  As she left the room we looked at each other and knew that something was not right.  When she returned to the room she said that the nurse would take us to another room and the doctor would speak with us in there.  At this point I was getting really nervous and my anxiety level was rising quickly.  The nurse takes us back and we wait patiently for the doctor to arrive.  Finally the doctor comes in and she sits down and says that baby Nelson's kidneys were not normal and that I had low amniotic fluid (i.e. one of the main reasons we later find out why I'm not as big as I was with my last pregnancy).  She tells us that she has contacted a doctor that is a high risk OBGYN and we are to leave immediately and go to his office, he was expecting us.  She said she was so sorry, hang in there, and we would get through this.  At this point I am in tears and just in complete shock.  I can't explain the feelings (overwhelmed, desperate, hopeful, etc.) - both of our minds are racing.  The doctor said that she would have someone help us leave through the back door and we leave without knowing truly what was going on with our son.

We arrive at the high risk OBGYN and wait which seems like forever.  Finally we are called back and the doctor performs the second sonogram of the day.  He explains to us that Baby Nelson has a blockage which is not allowing him to pee in the womb, which is causing me to have low amniotic fluid.  To help you understand this better, a mother will create amniotic fluid for her baby up to 16 weeks of pregnancy but at 16 weeks the baby will take over this function and create this for himself / herself through kidney / urination functions.  From this point the baby will ingest / breathe amniotic fluid, process this by urinating, and then continue this cycle to create his / her amniotic fluid.  The doctor tells us that our son is having kidney failure and that our case is serious and that he is recommending us to go to Texas Children's Hospital to a doctor that specializes in this condition.  He called the doctor to get us seen that day, so off we go again with more information of what is going on, but not knowing what options are available to us. 

We arrive at TCH about 1:45 and meet with the clinical counselor that says they will be doing the third sonogram but it wouldn't be till 4 pm that day.  Feeling helpless but hopeful (because we know we're in the right place now), we try to go grab a bite to eat even though our minds are not on food at all.  Eating did not sound good at this point but we hadn't had anything all day.  We return for the sono and a ton of pictures of our boy are taken.  The sonographer asks us if we know what the sex of the baby is and we tell her that it is a little boy but were unable to find his little boy part this morning, she is able to find it for us and gives us a picture.  During the sono she asks us if our previous sonographers explained to us that our little boy's right foot is a club foot or that there was fluid around his heart, of course we did not know this and this becomes more information to us that I don't think either one of us were prepared for.  As the sono is happening people are trickling in the room one by one, you would have been amazed with all the people that were in the room with us during this scan.  We had two doctors, several nurses, residents, clinical coordinator, and of course the sonographer.  After the sono we were escorted to a conference room were we met with the team and there they explained what was going on with our little boy.

Baby Nelson's condition / diagnosis is LUTO (lower urinary track obstruction).  The doctor explained to us that Baby Nelson's left kidney appeared to not be functioning and that his right kidney was dilated (indicating some damage but the extent was unknown).  We were also told his bladder did not appear to be as full as most LUTO babies they have seen before.  Baby Nelson was not able to urinate therefore causing low amniotic fluid which was critical due to lung develop between 20 to 28 weeks during pregnancy.  The club foot and fluid around his heart were both causes of the LUTO with low amniotic fluid (he's not as protected in the womb) and the fluid around the heart was due to back-pressure in our son's body and the heart having to work harder.  The main doctor that we would be dealing with told us that we would need to be seen the following day for several appointments / procedures.  We would need to see a genetic counselor, a pediatric nephrologist (kidney doctor), a pediatric urologist, have an echo of the baby's heart, and I would have a procedure where they would do a bladder tap to remove urine from the baby and also retrieve cord blood from the baby.  LUTO is a condition that is extremely rare, happens in 1 out of 5,000 to 7,000 babies, mostly boys.  Also it has nothing to do with ethnicity, environment, or that we did fertility, we were actually their first fertility patient.  With all the information that we received we were so overwhelmed and emotionally exhausted.  We left TCH at 6:30pm with a lot more information and many questions answered, but even more questions unanswered related to the long-term health of our baby.  

For more information about LUTO go to http://www.chop.edu/service/fetal-diagnosis-and-treatment/fetal-diagnoses/lower-urinary-tract-obstruction-luto.html