Wednesday, November 17, 2010

The Other Side

"Whoa... A tornado blew through and left a path of destruction, a path that measured one family wide and five months in length." 

This is what was running through my mind as I continued to read word after word in the emails I came across tonight.  A few weeks ago, I remember asking a peer if she still had the "Megan Update" emails that I sent from the hospital while Wyatt and I were being treated.  I thought it would be nice to have them to add to Wyatt's "things", to look back on later down the road.  The emails hadn't been forwarded to me, and I decided that there was probably a reason, so I didn't mention it again. 

Tonight, while reviewing my home emails, I clicked on sent mail instead of inbox, and there they were.  The emails that were sent from me to work while I was still pregnant with Wyatt.  I should have clicked out of them, but I didn't, instead I opened each one and read every single word.  After I had read all of them, I shook my head in disbelief that it really was my life and not a dream.  There are still days when I find myself questioning if the past twelve months (yes, from the time I became pregnant until now) have merely been nothing but a dream.  But that was proven wrong again tonight. 

The first email that was sent, was sent to my manager at the time (even that in my life has changed now), on May 27 (two days after the 28 week ultrasound).  The email discussed everything that was known and that occurred up until that day. 

This was the first email (I did not update the grammar or the incorrect spelling of the procedures or medical terms, as this just proves my state of mind and lack of understanding at the time):

"Good morning -
I figured I would just email you since it would be easier to capture everything.  Basically this is everything that has happened so far:
I arrived at University of Penn last yesterday afternoon and they completed a 1 hour ultrasound.  They found that the baby's left chambers of the heart are severely dilated and don't have much blood flow moving through them.  I have an ecocardiogram (not sure of the spelling) scheduled for this morning.  The gram will be completed by one of the best neonatal cardiologist in the east coast.  Once the ecocardiogram is complete, we will have more information and answers to the lingering questions.  Currently, they can't rule out much without see the baby's heart in details.  However, they are pretty sure that this heart problem is not genetic or a chromosome issue.  They feel is could be and infection, baby not having enough blood, or structural issues.  They last doctor I saw yesterday said that she is pretty sure the baby has structural heart issues (which she stated was good cause with surgery it could be treated.)  Currently, they are concerned with the heart, but the are also concerned because should the baby not get enough oxygen, due to the heart not working right, they will have to deliver.  That being the case, the doctor stated it would be a tough chance for survival as the baby is too small to operate on right now.  We would have to wait the baby to gain an additional 2 pounds.  However, they have put me on Steroids in case after the ecocardiogram they determine they have to due a C-Section (this increases the baby's lung support).
So, basically today is the day for answers.  I have the ecocardiogram around 9ish, more infectious testing later today, and then another steroid shot this afternoon.  Sounds like I will be staying over again tonight also. 

The doctor was going to consult with me later today, after the testing, to discuss what happens next (bed rest, back to work with loads of appts in Philly, etc.)  Just saw a doctor literally just now.  She stated that more to come today, but if the scan shows that can't do anything for the baby, they will send me home but will ask me to return for close watch almost daily.  She stated if they send me home, there is a chance that I may lose this baby.  So, as I told her, time will tell, and there isn't much that I can do right now, as it is out of my hands.  I pray that God is watching out for this little angel, but in the long run, I am sure God will do what is right for the baby. 

This is the hardest thing I have ever had to go through (harder than IVF and the months of let down), but I am sure with the support of my family, friends, and co workers that we will make it through.  I will continue to update you as we get more information. 

Thanks for your support and concern.  Please say a prayer for this little baby!

Megan"

So, wow.  That was me holding on to hope and thinking optimistically and really not understanding that there was something severely wrong with my child.  That was me laying out everything I had been told in the previous 24 hours.  The email shows that on May 27 at 7:27:46 AM, the time I sent the email, that I honestly thought that the baby had hope, that the baby had a chance, that things were going to be okay. 

The second email I came across was sent to my manager on May 28, 48 hours after I was told to "go to Labor and Delivery IMMEDIATELY".  The email discussed the updates in the short 24 hours that had passed.  The 24 hours that CHANGED my entire life forever. 

Here is the second email (again not modified):

"Good morning -
Since I really only have time in the morning to myself, I figured I would update you today from yesterday.  So much happened and I only have a few minutes until the DRs come back in.

5/27 -
EKG on baby - findings were that baby has Hydrops in belly (basically a lot of fluid in the abdomen that isn't supposed to be there), and Hypoplastic Left Heart Syndrome.  This is the worst kind of congenitive heart failure in the US.  This is the leading birth defect in the US at 42% with 5000 babies born in the US with it every year.  Survival rates for HLHS are higher in babies without Hydrops. Babies with HLHS and Hydrops have less than a 20% survival rate.

Treatment for HLHS and Hydrops - I will be starting medication today to assist with removing stress from the baby's left side of the heart (this side isn't working at all, but is large and is pushing on the right side cause the right side to struggle, therefore causes the fluid in the abdomen as the baby is in distress). 

The entire family, parents included, will be meeting with the Cardio team, NICU team, and my doctors to determine if fetal intervention is the best option to go.  This would require surgery to me and the baby.  They would cut into my accessing the womb, but not cutting into the womb.  Then they would use a laser to help build a hole in the baby's heart to allow flow.  This would buy the baby time have its heart work a little better, stay in the womb to develop a bit more and get strong lungs before being delivered. 

We are also talking about if the baby survives the fetal intervention, that the next steps would be the "norwell procedure".  This was developed by CHOP (Children's hospital of Philly) in 1980.  It is a 4 stage procedure that would allow the baby to live on the one working heart ventricle, so a 2 chambered heart instead of a 4 chamber.  We have several questions for the DRs today about life long impacts, life of heart expectancy, etc. 

As you can see, our baby is high risk.  The doctors said that since our baby has 4 items in the heart that have failed and has the hydrops, chances of survival are basically "Heroic" at this point. 

On a brighter note, due to the everyday the baby can continue to survive in the womb is another miracle, we did finally decide last night to determine the sex of the baby and give the baby a name.  Our baby is a little boy, who currently weighs under 3 pounds.  His name is Wyatt Gavin McGrory and we hope to be able to get him close to full term to deliver our miracle baby!

Thank you for staying in touch with everyone.  It is hard to update everyone as it is hard to have to repeat all of the information, since every time I find myself in tears.  Please keep everyone up to date.  I will be in the hospital at University of Penn for at least a week, just to get on the heart medicines.  If we decide today that we are doing the fetal intervention, that will take place next week and I will be in the hospital for 2 weeks after.  I am not sure of the address here, but my room is Silverstein 0715, and they don't plan on moving any time soon.  My room number is 215-615-8394.  Today will be busy with EKGs, meeting with doctors, amnio test, and stuff.  I would think I would be back in my room after 7p.  Please ask the team to email for now if they want to make contact as I am not prepared to talk to many.  You can give them this email address.

I will touch base with you via phone either tonight (depending on the day) or this weekend.  I really haven't thought about work and don't plan too, but know that I need to discuss Disability and such with you and HR.

Thank you,
Megan"

Okay, so you can see, I was told that things looked grim.  Yes, Wyatt Gavin was the name we selected but that only stuck for about 4 hours, we changed it to Wyatt James shortly after.  We had to decide on a name without even discussing many names prior.  So, yes, we changed his name, but only once.  I never remembered them saying "heroic" until reading this again tonight.  After reading this, I remember it like it was yesterday.  Our doctor sat across the table from us and while holding back tears of her own she said, "At this point, the chance of your baby surviving is "heroic"".  Damn, what the hell.  Why didn't I actually listen to what these doctors were telling me?  Why didn't I hear it?  They were telling me all along to prepare myself, I was going to lose this baby.  But I didn't hear that.  I only heard what my mind wanted me to believe, that WE could be that very small percent that MAKES IT.  You know, thinking back on it, when I was wheeled away for surgery on June 4, Brian and I never even said goodbye to Wyatt.  We didn't talk to him, we didn't tell him we loved him.  We kissed each other and said "I love you".  That was it.  We honestly thought Wyatt was coming out alive.  We didn't feel the need to say goodbye.  How freakin' naive.

While eating dinner, after reading the emails, I found myself throwing thoughts around in my head.  The thoughts were as follows:

1.  Damn, you were so naive.
2.  If only you knew what the future held, if only.
3.  You knew so little about HLHS and Hydrops, so very very little.
4.  Definitely not in a good state of mind, wording was all wrong in the emails.
5.  The diagnosis and treatment was changed so many times.  (I never realized this until tonight, when reading the daily updates.)
6.  Prayers were not answered the way I had planned.
7.  You have learned so much and come so very very far.

So, I came across those two emails and even a few more that I decided to not publish in this blog (these two said basically the same that the others did, they were just to different people).  I read them word for word.  I thought about them and I cried over the fact that the emails have to be part of my life.  I sobbed over the fact that I really didn't understand what was taking place in my life while it was taking place.  I sobbed harder over the fact that I never said goodbye to my son before surgery, as that was the last time the poor little boy knew what life was like before he got drugged up and operated on, which only resulted in losing the fight that he fought for so long.  I lost it when I realized that there was so much hope, so many prayers and so much love but yet, all the hope, love and prayers couldn't save my son's life. 

I looked back on the past and I sit here with it all opened in my lap and in tears.  Tears as if it was all just happening for the first time.  But guess what?  This time I know what the diagnosis means, I know what the treatment is, I know not only what questions to ask, but I know what to listen for, and lastly, I know the sad outcome.   The baby fights, defeats doctor's expectations, shows so many what it means to really "fight for your life", then loses the battle to medicine, something that offered no hope from the beginning, if I would have only listened. 

Funny how looking back on everything now, I can see so much.  I found a friends blog shortly after the loss of Wyatt.  It was and still is called "On The Other Side".  That fits this post perfectly, "On The Other Side".  Brian and I are now on the other side of the unknown that previously existed, the side that includes grieving, healing, understanding and moving forward.  Wyatt is also on the other side, in Heaven.   

3 comments:

Dana Hitchner said...

ohhh megan my eyes are filled. i won't begin to attempt to relate but i want to tell you this . . . attempt not to feel sorrow or regret for not expressing your love to wyatt those last moments . . . he was listening to your heart. he knew from your heart beat that he was loved and as long as your heart beats he can feel your love. <3

Tiffany said...

oh honey... hugs!! I wish I had emails or something that could take me back to that day... not that I want to relive it but its the only history there is of genesis... I long for more things that are connected to her to hold on to...oh the life of a BLM...

turtleohs said...

Re this: "Brian and I never even said goodbye to Wyatt. We didn't talk to him, we didn't tell him we loved him."

You might not have physically said the words, but you didnt have to. He knows how much you love him and cared about him and wanted him. He heard you and you didnt even have to say anything.

As for being Naive. That's expected. How were you supposed to know? That's like me wanting to know about Alzheimer before I ever get it, or some other disease. Dont beat yourself up!