now it's just the 'waiting game'

    Before I say anything about my doctors appointments - let me share some good news! I posted this on my Facebook page yesterday but wanted to post again here for those who may not have seen it/may not be friends with me on Facebook. We had the amniocentesis a few weeks back to see if there were any genetic issues in addition to the heart issues. The first two rounds of results came in and all looked good - but we had kind of expected that. The third round of results was the ones we really didn't have any idea what to expect because it could have gone either way. Maternal-Fetal Specialists called me yesterday to let me know that all results came back looking good and there are no genetic issues! Even though we are still dealing with the heart condition I am relieved we don't have anything "extra" to worry about! Praising the Lord for this little blessing in the midst of everything else!
   Okay - on to the doctors appointments we had today ....

Appointment with Dr. Videlefsky - Pediatric Cardiologist

    I was hoping that this appointment would be able to answer all of our questions and give us some peace of mind - and I really have been thinking that about every appointment we have had. Unfortunately, the 'answer' still stands as "it depends". This was our follow-up appointment with Dr. V and I really wanted to get an update on baby Murphy's condition and see if they could tell us anything else but we didn't really get an update. One praise from this appointment - the dilation of the pulmonary arteries had not increased significantly so everything is still looking the same! Dr. V explained that the swelling of the pulmonary arteries are the main concern and he feels it is significant. He also explained the outcome after birth could really go either way, in regards to having surgery earlier or having surgery later, because it is all dependent on how the airways are affected. We asked if there would be a better indication or general idea of how affected they would be prior to birth, but Dr. V explained that they just won't know until birth - you know, 'it depends'. He was really great to answer all of our questions and explain everything to where we could understand what he was talking about. I expressed my concerns of taking the baby home before surgery, but he assured me that they would never send a baby home they had any concerns about, and they would be preparing me and explaining everything if he was able to go home before surgery.

    We don't go back to see him for another 6 weeks - and they will check again to see how everything looks. They did comment that the heart was functioning great and the flow of blood was good! (Another praise - I'll take as many as I can get!). I wish we could go back sooner to get an update, but I know there really isn't much they can do and it is better for him to 'stay put' for as long as possible. I'm not really too sure how I feel still - I told my mom that I kind of felt like I will just prepare for the worst, and hope for the best. My mindset has always been to "prepare" for most anything in life - and it is becoming clear that I really just cannot prepare for this, other than trusting that God will carry us through all of it. I trust that God has a plan, as I have said before, and I am trying to let go of the notion that I need to know what it is - He is in control, and whatever happens I will be praising Him. Praising Him for baby Murphy. Praising Him for the little blessings. Praising Him for wrapping His arms of protection around us.

Appointment with Dr. Pohl 

    Dr. Pohl is my regular OB, and it was at his office that the technician first spotted something wrong with baby Murphy's heart. My appointment today was the first with him since all of the other appointments - and I also had my gestational diabetes test, where I had to drink the dreaded glucose drink. I was told by almost all of my friends to get the orange, but at my last appointment they handed me the red without a choice! Probably the most disgusting drink I have ever tasted - it was literally like cold melted sugar, BLEH! (Funny story: My mom brought a cooler to keep it cold during the first appointment. She had to carry it through  the building and said someone asked her where she was headed. She responded "the pediatric cardiologist" and I'm sure they were wondering what the heck was in that cooler! HA!) I drank this an hour before the appointment and then they drew my blood and sent it off to get results. No news is good news, so if I haven't heard anything by Tuesday I am in the clear! I think I have said this before but I am not worried I will not pass it, but prayers are always appreciated that Tuesday will come and go with no phone call! I also had to be weighed - and so far have only gained 8 pounds! I lost a lot in the beginning from being so sick, but they said everything looks good and I am glad I haven't gained an exuberant amount of weight! After all of that was over we were able to meet with Dr. Pohl - he has been really great so far too! Baby Murphy is measuring right on track and we will meet with Dr. Pohl again in 4 weeks to just do the general check-up. 

    We asked about my due date and what the likelihood of being induced was and he said that he will be inducing me the week before my due date! There are a few risks associated with going past my due date and inducing me allows them to have a better of idea when the baby will be born and allow all doctors and nurses to be alerted that will need to be there - this gives me some peace of mind! I am also glad that I will be able to "prepare" for the hospital and won't be having to sit around and wait to go in to labor and it be a surprise.The wanting to be prepared side of me is extremely, extremely grateful for this.

Reflection

    I really wish that I could change everything and make everything okay for my baby - but I can't and that is so hard for me. I am constantly wondering if he will be scared or if he will wonder why all this is happening, and I wish I could take it away for him, but I can't. I know all of the doctors/nurses/surgeons are great at what they do so I trust them, but it doesn't make it any easier. I also wish so bad that I knew all that would happen after birth, but I will be going in not really knowing anything - expecting the worse and hoping for the best. Regardless, God is in control and is going to take care of us throughout whatever may come. The song "One Thing Remains" is my latest favorite this week, and it is on the radio almost every time I turn it on :) Check it out if you get a chance! I still have my doubts and worries and fears, but time is making it easier to be able to trust God fully. 

Now - how about some fun facts :)

How far along? 24 weeks 3 days

Sleep? I may be get two good hours before I wake up to get comfortable/go to the bathroom - ah, the fun begins.

Movement? TONS! Today during the appointment with Dr. V the technician could hardly get him to calm down to get a good picture of his heart! (If he is anything like his mom, he was probably just trying to be stubborn)

Favorite Moment this week? I was able to go to dinner with a friend that I haven't seen in too long. She made two little onsies with bowties and a blanket for baby Murphy! Thank you Brittany - I love them and so will he :)

Cravings? Oranges. Cupcakes. Strawberries. Bacon. I loved bacon before getting pregnant - but know I REALLY love it!

Symptoms? Leg and foot cramps. Back Pain. The leg cramps are the worst and hit at the most inopportune time - like 2 AM when I have just fallen asleep :/ BUT, these are all side effects of this pregnancy in which is SUCH a blessing - so I will take them! 

Looking forward to? Josh and my dad are painting the nursery this weekend! Once everything is done and set up I will post pictures for all of you!

Specific Prayer Requests

• Please pray that the dilation in the pulmonary arteries stays the same.
• Pray for our appointment with Maternal-Fetal Specialists next Thursday. I am not sure what all they are going to be following up on, but I will be sure and update :)
• Pray for peace for Josh and I. A lot of things are still unknown and we really won't get answers until baby Murphy is born which is sometimes hard to deal with.
• Please pray for my friend Lacy, and her husband Anthony and baby Josiah. Baby Josiah had his first surgery today. Pray for a good recovery for baby Josiah and peace of mind for Lacy and Anthony.

Thank you for your continued prayers, support, and love. We love you all and are SO thankful for all the prayer warriors in our life! As always - feel free to share my blog with anyone you know may be interested or be praying for us - I certainly do not mind! 

"fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand"

Isaiah 41:10

"God is our refuge and strength, a very present help in trouble"

Psalm 46:1

days go by...

   Tonight was one of those nights where I just felt like writing. I have posted so many "sad" (as I call them) posts that I felt like a more positive one (for the most part) was in order. These past few weeks have really been an emotional roller coaster, to say the least. Between all of our appointments and uncertainties it has been a struggle to relax, but I wanted to make it a point to just lay low this weekend and do some fun things! We spent most of Saturday just lying around on the couch doing absolutely nothing, and then we headed out to my mom's surprise birthday dinner. Here is the catch - it was her birthday and she was surprising US with where we were going... I didn't complain though because we all were able to go to the Melting Pot! I had been CRAVING this for the past two or three months and Josh would never take me (more for financial reasons) so I was very thankful to go and enjoy everything on my plate :) Sunday was my mom's actual birthday so we went to church and took her out to Frontera afterwards - where they sang to her and gave her a funny hat to wear, so entertaining. Then we just hung out with them for the remainder of the day and picked out some paint for the nursery! Josh and I painted a sample Sunday night and we are happy with the color - so hopefully most of the painting will get done this weekend! It was nice to relax and just enjoy time with Josh especially with all that has been going on. I have also taught myself how to crochet and am making baby Murphy his own blanket from me – SUPER excited about this and can’t wait to show everyone the end result!

   This week we have two more appointments coming up - one with Dr. V, the pediatric cardiologist, and then immediately following that I have an appointment with my regular OB for a routine check-up and my gestational diabetes test. I am not worried about not passing, but some extra prayers that I do pass would be appreciated. I am hoping that our appointment with Dr. V will clear up some still lingering confusion from our appointments last week, and I will say the days leading up to our next appointments feel so long and drug out. I am such an impatient person, so that is something I am really trying to work on. Just being patient and knowing that we will get more answers at our next appointment and that a lot of the answers won't come until after baby Murphy is born. 

    Josh and I are so thankful for all of the people praying for us - even those that we don't know. I know a lot of people are probably wondering how I am doing as of lately... and I don't think I have a clear answer. Most days are hit or miss, it all just depends on the moment and it all comes in waves. I try to be as positive as possible but it is so much harder than it seems. This pregnancy was "normal" up until the 20-week appointment and now it is so overwhelming and terrifying that I can't even keep my thoughts focused. There isn't a book written on how to handle this - if you know of one, send it my way - and it's all a learn as you go experience. I asked my mom the other day, "What do I even pack for the hospital?" As silly as it seems - I have NO idea. Sure, I will need the normal things, but what "extras" will I need? We won't even know how long we will be there until, well, we are there. I am having to deal with the fear and anxiety of having a baby in addition to these new fears with the new diagnosis.

   My life has been turned upside down and I have had no option but to rely on my faith in Jesus Christ. I regret to say that before all of this my walk with the Lord was anything but impressive, and something that was a struggle. Throughout this I have become closer to the Lord and trusting in His promises for our lives. " For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future."  Jeremiah 29:11. While I cannot see the plan God has through all of this - He already knows and I have to trust in the plan He has. Several people have mentioned to me that they are praying for a miracle - but I am not. Many of you may ask why - and I am going to explain. I am praying for God's provision, protection, and for His plan to be fulfilled in mine, Josh's, and baby Murphy's life. If that is a complete healing, then that's it His plan, but if His plan is that baby Murphy will need surgery sooner than later - I am trusting in that as well. Don't mistake this for me not being upset and emotional and frustrated at times - because I still very much am all of these. But I am desperately working towards relying on God and trusting Him because my heart and my relationship with Him knows that there is a light at the end of this tunnel and He has designed my whole entire life, before I was even thought of, and He is doing the same for baby Murphy.

   Words cannot express my gratitude towards our friends and family that have reached out to us during this time – we are so, so appreciative for your words of encouragement and prayers for our family. I have appreciated all the calls/ texts/ messages – they all come at just the right time. Please continue to pray for us throughout the next few weeks with more upcoming appointments and I will update with each one. We will never have an absolute answer, but I am praying that more clarity comes with each appointment.

Love to you all,

Ashlyn

Egleston consultation

   Today we had our consultation at Egleston with Dr. Kanter. He is the surgeon that will be performing the surgery on baby Murphy. I went in to the appointment not really knowing what to expect - but hoping there would be more clarity for some of the confusion/questions I still have in regards to, well, pretty much everything. I think I left just as confused as when I had first walked through the door.

   The day started as we (my mom, Josh, and I) headed down to CHOA Egleston around 2 PM. We pulled in the parking deck and saw signs that the parking deck was full (we were already cutting it pretty close to our appointment) and we had to drive around for a good 5-10 minutes before we were VERY lucky to find one relatively close to the elevators. Once inside there were TONS of people everywhere and we had to find our way to the Cardiac Outpatient Services (floor 2). We waited a few minutes on my aunt Deedy - she was meeting us there from work - and we were told we had to go back to the first floor for registration... so there we went. Upon getting to the registration table we were told they were so "busy" because the kids were coming down for a meet and greet with Justin Beiber. Not a huge fan - but pretty cool that he was right around the corner! Also, while we were registering we got to hear his private concert through the door of the room we were in - pretty neat. We then headed back upstairs to start our appointment and were taken to a little room to wait on Dr. Kanter.

   Let me start by saying this: this is my interpretation of the appointment based on all my emotions that are still running pretty high from previous appointments and the still newness of this diagnosis. Dr. Kanter came in and introduced himself and started talking about the surgeries that baby M will need - and guess what... it all depends! Both surgeries are open heart and depending on how his bronchi are affected the recovery time is up in the air because, you guessed it, IT DEPENDS. (This phrase still isn't growing on me...). Basically, if he is born and his airways are severly affected he will need surgery rather quickly and may even have to be transported to Egleston the DAY he is born (that hasn't really sunk in yet), but if his airways are not too affected he could possibly have surgery 5-6 months after birth. This means we would take him home after his is evaluated and we are discharged from the hospital. Many of you probably think I should be jumping up and down about this - and while it is relieving he may not need surgery right away, it SCARES me to death to take him home. Can't he just stay at the hospital and be monitored? What if something happens? Based on our meeting with Dr. Leigh on Monday it seems that the earlier surgery would be more than likely based on what they can see right now, but we are meeting with the pediatric cardiologist next week to hopefully get some answers to some pretty specifc questions we have come up with and also see how baby M’s heart is looking since we last went a few weeks ago.  We didn't really get any new information in regards to baby M but more of the information about the surgeries and what they entail.

   I left the meeting with Dr. Kanter pretty frustrated. His "bedside manner" was terrible in my opinion and he made it seem as if this was "just another baby with ToF APVS", but it isn't just another baby. THIS IS MY BABY. He just didn't personalize anything to our case, and openly stated he didn't view the echo that Dr. V (the pediatric cardiologist) had sent over ... well, okay then. I guess I expected that he would have spoken more in relation to my baby's condition and the report that Dr. V wrote up (like ALL the other doctors we have seen have done). I do trust his ability as a surgeon, but I think at my current state I was really hoping he would have been more caring and personal, and he really just wasn't. He is very confident in what he does, and I appreciate that, it really just rubbed me the wrong way today. After our appointment we were able to tour the CICU (Cardiac Intensive Care Unit ) and the Cardiac Stepdown Unit with a nurse - I think her name was Karen, super friendly. The CICU is where he will go immediately after surgery for 1-2 days (and where he will be monitored prior to surgery), and then he will be transferred to the Cardiac Stepdown Unit with his own room and we will be able to stay there 24/7. His time frame for going home depends on what I stated earlier, how affected his bronchi are from the pressure they were under in utero and the time out of utero before the surgery. It was nice to see everything and be prepared; we were even able to see a baby who had just had surgery. A little overwhelming because that will be baby M before too long, but I know he will be taken very good care of by the nurses/doctors/etc. 

   Over the next week I am going to take it easy and relax. Take some time to let everything soak in and go in to next week’s appointment with clear questions that we want answered. We got all of the nursery bedding and furniture this past weekend so I am hoping we can finish registering and pick out paint this weekend! My mom’s birthday is also this weekend and we are all going out on Saturday to a “secret location” (not sure why she is the one surprising us?!). I have several fun things to look forward to and I am going to try to keep my mind distracted for the most part.

   I am so overwhelmingly thankful for all you – all of your prayers, support, kindness and love. Baby M is loved by so many already and he isn’t even here yet! While the future is unknown for us and what exactly we are facing, I feel confident that you are all going to continue to surround us in your love and prayers and for that I am thankful. I am thankful for Josh. While I have been freaking out and overly emotional he has kept a level head and been the shoulder for me to cry on throughout all of my downs. I am also thankful for my mom – she has been by our sides at all of these appointments and has helped me keep a level head at times. I am thankful for my aunt Deedy for her willingness to come and listen in on all of these appointments and ask the questions that I sometimes forget. I am thankful for the friends that have reached out with their kind words of encouragement. I am thankful for the people, who don’t really know me, have reached out because they have dealt with a similar experience. I am working on getting back in touch with everyone, still taking some time to think about everything, but very thankful that so many people are willing to lend some advice and encouragement from their own experience.

   I will continue to update as time and appointments continue, and I will update from this weekend with a “positive post” and maybe some details about the nursery! So much negative deserves a positive post – both for all of you and I need it for myself as well. Over the past two days I have been drawn to this song:

Not For A Moment – Meredith Andrews

And every step every breath you are there
Every tear every cry every prayer
In my heart at my worst
When my world falls down
Not for a moment will You forsake me
Even in the dark
Even when it's hard
You will never leave me
After all

After all You are constant
After all You are only good
After all You are sovereign
Not for a moment will You forsake me
Not for a moment will You forsake me
Not for a moment will You forsake me

  I encourage you to listen to it if you can. I still have my questions and my fears as to wondering why this is happening to us, but I know God has such a great plan for Josh, Baby M, and I that this is what I cling to in my darkest of hours. God will NEVER forsake me, and He is ALWAYS by our side throughout everything. Psalm 27:1 “The Lord is my light and my salvation— whom shall I fear? The Lord is the stronghold of my life— of whom shall I be afraid?” It is a struggle to stay positive and let go of fears, but something I am working on. 

   Additional Prayer Request – I have been able to connect with a very sweet girl, Lacy, through this whole diagnosis and since posting my blog. Her son also has a heart condition, different than baby Murphy, that will require surgery. He was born today! Since the delivery they have taken him over to Egleston. I am asking that you lift Lacy, her husband Anthony, and their baby Josiah up in your prayers throughout the next few days as they prepare for his surgery and recovery. 

Love to you all,

Ashlyn 

"it depends"

I don't even know where to begin with this post, but I am warning you that this is raw emotion and very real to what I am feeling and experiencing right now. We had a consultation with Dr. Leigh at Gwinnett Medical, he is the neonatologist that I posted about in an earlier post. I knew going in to this that we would be getting much more information in regards to baby Murphy's diagnosis, and much like our appointment with the maternal-fetal specialists, I went in not really knowing what to expect. My mom, Josh and I met with my aunt Deedy and Dr. Leigh around 6:45 PM tonight in the NICU at Gwinnett Medical in one of the "mother's rooms". Nothing could have prepared me for what Dr. Leigh was about to explain to us, nor how I would feel after it was all said and done.
   Dr. Leigh is a great doctor who really put things in to lamens terms for us, and I will try to do my best for you who are reading this. We had a few good laughs while interacting with each other, I think they were more for me to hold back my tears. Dr. Leigh ranked baby M's diagnosis (Tetralogy of Fallot with Absent Pulmonary Valve Syndrome) on a scale of 1-10 - at a 9.5 in regards to severity. He had read my file from Dr. V (with my permission) and discussed some of the things that would happen after he was born. I think based on our preliminary appointment with Dr. V I was somewhat under the impression that this would be fixed with one surgery and that would be the end of it, but not so much. Dr. Leigh explained that there were several serious risk factors associated with ToF APVS. He also said that it can go several ways after birth, but there are some things that just could not be corrected if they occur. There are only few things we can know for certain based on the in utero ultrasound on his heart, but many that are unknown, and when I ask questions about them I get the response "it depends". (Words can't describe how tired I am of hearing this answer).
   There are several things that we will have to wait until after the baby is born to look at, and they literally start looking at him RIGHT after birth. I mentioned before that I wouldn't get to hold my baby, but there is a pretty big chance I may not even get to see him at all before his is whisked to the NICU for testing and everything else. Josh and I also have to decide if he will stay with me or going with the baby to the NICU. This makes me so so sad, but I know it is the best thing for the baby and that is what I am clinging to at this point. One of the main concerns is the pressure that will be put on his trachea by the swelling/enlargement of the pulmonary artery. If the pressure is too much he will need to be intubated and be on a breathing machine to keep his trachea open despite the pressure. There are other issues related with this - if the pressure is on the main bronchos there is not much they can do at that point. He will also need to be on a constant IV of medicine to keep a hole open in his heart that normally closes after birth in 24-72 hours for healthy babies. It is PERTINENT that he get the medicine ASAP to keep this hole open before it closes so he can get oxygenated blood to his body. The timing of surgery and which surgery will all "depend" on when he is born and what the initial overview looks like. They gave me different scenarios but I am not listing them out here. 
   After Dr. Leigh left my aunt Deedy explained things a little bit better, and for the most part I was able to hold it together. I am not sure what we were talking about but there came a point where I just lost it. I want to know why this is happening to me. I want this to all go away. I want to know beyond a shadow of a doubt that my baby is going to be okay, and that he is going to live. I want them to give me the answers to exactly what is happening. This fear inside of me is growing and I am just so numb. I don't know what to feel or how to deal with this mix of emotions.
   Let me say something - I have very much appreciated everyone reaching out and praying for us. I do ask that over the next few days you do not say that "it will all work out" or "it will be alright". I know it comes from an honest heartfelt place but I am not at a place to accept and deal with with this statement. Because right now I don't feel like that, and it does not make me feel better to hear other people say that - sometimes it makes me feel worse. I apologize in advance for not responding to calls/texts/etc, but I just need some time to be by myself and with Josh. I need time to, again, sort through these emotions. This week is going to be especially tough. We meet with the surgeon on Wednesday, talk about a double whammy. It took me two weeks to be able to discuss anything after our last appointment when we received the initial news, and now the information we are presented with is more in depth and more serious than I really was ready for. And now I have one day to collect myself and get ready to be hit with it again. 
   I will be real here - I am struggling to trust God with all of this. I know He has a plan, but I don't like this road I am on to get there AT ALL. I am glad He has surrounded me with a wonderful husband, family and friends because I cannot do this on my own. I am so broken right now and I just want to be okay. I just want everything to be okay. It's hard to feel like no one really understands what you are going through, but I hope this has put it somewhat in to perspective.
   I am thankful that Dr. Leigh took the time to meet with us. This information was just so overwhelming. He made the comment " we do this in stages" or something like that. I understand because I would not have been able to handle this at the first appointment. But I am also frustrated. Frustrated because I have no control. Frustrated because we just DON'T KNOW. Frustrated because it almost was made out to seem "not so serious" initially. Frustrated about everything.

Thank you all for your prayers and I ask that over the next few days you pray specifically for peace and comfort for Josh and myself. Also strength, strength to hold on and strength to see the light at the end of this dark, very dark tunnel.


"with a mighty hand and outstretched arm; His love endures forever." Psalm 136:12
 

good news today!

Thankful for a relatively positive day! The Maternal-Fetal Specialists called me this afternoon to let me know the second round of amniocentesis results came back very good - which means there are no chromosome issues from the two tests they have run so far! I didn't expect that there would be - but it is always nice to get a phone call with good test results. Here is how the amniocentesis works for those of you who may not understand or have never heard of an amniocentesis before:

Amniocentesis: "A sample of amniotic fluid is collected through a needle that is inserted through the mother's stomach in to the amniotic sac. The procedure takes about 45 minutes (it doesn't really take this long, unless you add me freaking out in the beginning about the needle), although the collection of fluid takes less than five minutes. The amniotic fluid, which contains cells shed by the fetus, is sent to the laboratory for analysis. Results can take anywhere from a few days to a couple weeks to be returned." (This definition is from the American Pregnancy Association Website.) When I went in for my appointment with the Maternal-Fetal Specialists last week they wanted to do this test to check for chromosome issues that may be causing the heart issue with baby Murphy. The test picks up on "chromosome abnormalities (things like Down syndrome or Trisomy 21, neural tube defects (like spina bifida) and genetic disorders (like cystic fibrosis). The first results came back two days after the test for the general chromosome abnormalities, and the second level results came back today - all negative for anything! The third test is for genetic disorders and we will not get these results back for about two weeks (from today!). The pediatric cardiologist wanted them to run the genetic test because there are a few issues that COULD BE related to the heart issue. There are no other markers, but they did want to go ahead and run the test. Prayers that this test comes back negative as well would be much appreciated!

I mentioned that my aunt works in the NICU in a post last week. She has been really supportive through all of this and is keeping up with the whole process and trying to help put my mind at ease as much as possible. She was able to schedule a meeting for us with Dr. Leigh, the Neonatologist (specializes in sick newborns) and Medical Director at Gwinnett Medical. He also works with the NICU's at Barrow, Walton, Newton, Rockdale and John's Creek hospitals! They have worked together for quite awhile and since baby Murphy will most likely have to be in the NICU after he is born, he agreed to sit down with us and explain what care he will be receiving and try to answer any questions we may have. This "meeting" is scheduled for Monday night at 6 PM! This is the same week as our meeting with the surgeon at Egleston and tour of the hospital. I am looking forward to both of these because I am hoping to get a lot of my questions answered and put some parts of my mind at ease - I hope they are ready for my notebook of questions (never can be too prepared)! 

Thank you again for all of your prayers. I figured my last few posts have been pretty down and sad about all of the emotions I am dealing with so I wanted to share the good news phone call we received and also let you know about the upcoming meetings that I am both excited/nervous about! Another thing - baby Murphy has been kicking/moving around like crazy for the past few weeks, but his movements are strong enough now that Josh can feel them. Josh likes to say he is swimming around. Sometimes we just lay there watching my stomach move around as he flips/turns or does gymnastics :) So neat - and a reminder that he is doing just fine in there! 

"Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid." John 14:27

staying strong

Today was rough, and I know over the next few weeks I will have many more ups and downs with everything - I am just working on getting through these downs without having a complete emotional breakdown. Anyone who knows me knows I wear my heart on my sleeve and hiding my emotions is extremely difficult. I still can't even put in to words how I feel about everything but every day is very different. Just last week I got a call that they could see us the next day (Tuesday, the 8th) and I immediately took it. After work I came home trying to sort through all that they could tell me. I didn't know what to expect, and I hardly slept that night at all between worrying and wondering.I tried not to go in initially thinking that nothing was wrong, but how do you go in expecting things to be wrong? Our first appointment was so vague that I didn't even have half a clue as to what it could even be at all. I don't think the fact that there was something wrong and all that it entailed really sunk in until we were in the elevator getting ready to head home. All day I had been walking in this haze, unaware of what was going on around me and unaware of what the doctors were actually telling me.

I am such a planner and want everything to be laid out in front of me so I know what to expect. Its almost like I think it will make it easier - but in reality, it doesn't. Sometimes it makes it harder - like knowing that I won't be able to hold my precious baby immediately after delivering him. Regardless there are still several unknowns and things that I really have NO control over and that is so hard for me.  I hope over the next few weeks we will get more answers that will clear things up for us, and some that will put us at ease.

I know God is in control, and I know His plans are bigger than anything I can imagine. I am praying that in some way this trial we are facing will be something I can use to help someone in the future who might face something similar. Whatever the outcome is or where this takes us, He is watching over us. My strength is nothing of my own, it is all from God. I know I can't do this on my own, I already feel like this is all just too much. I am thankful for my family and friends that have been supporting us thus far, and I know they will continue to do so throughout this entire journey. Philippians 4:13 "I can do all things through Christ who strengthens me." My strength (what little I have right now, I don't think I am as strong as people think I am) comes from the Lord. I am taking baby steps to go one day at a time. 

I am not sure if my nesting has kicked in or if I am trying to keep my mind of off everything - but my house is starting to actually look clean! It was hard for me to have the energy to do anything in the early stages because I was so tired and so sick, but Josh helped out a lot. I am so thankful and blessed that he is my husband. He has been the real strong one through all of this and the one keeping me grounded when I feel like I might just lose it all. Thankful that God brought us together almost five years ago!

Here is a specific prayer request:
 Egleston called me today to set up our consultation/tour. We went ahead and scheduled this for next Wednesday. I am hoping that this will put my mind at ease slightly, but I don't really know what to expect. Please pray that we will be able to get a lot of our questions answered and have some peace about the surgery. We will be meeting with the actual surgeon that will perform the surgery on Baby Murphy, and getting more details on when the surgery will happen and the recovery process.

Also, we ordered the nursery furniture and some bedding! I am hoping this makes the next few weeks go by quickly while we wait for our next three doctors appointments to roll around on January 31 and February 7. I am trying not to be too stressed out about everything, but it is still so new and still so scary. I asked someone else who is going through the somewhat of the same thing if it is normal to cry every day. Whether it is or not - I do. I am not sure how often I will update the blog - at least after every appointment we have, and maybe in between when I feel like writing will really help me. I never thought starting a blog would be so therapeutic, but it helps so I plan on continuing. Thank you all again for your prayers, love and support. They mean more to us than I can express.

Ashlyn
 

twilight zone

"How Have You Been Feeling?"

This is/has been the most popular question the past few days - and I wish I had an answer. The truth is, I just dont know. I'm not ready to talk about everything with anyone really, but writing this blog is a way I can get my feelings out, and I can stop writing if it ever upsets me too much. I try and explain how I feel as being in the twilight zone - but what does that really mean? I feel numb, confused, stressed, sad, worried, nervous, scared.... etc. But, I am also still very happy, excited, overjoyed, thrilled, etc. that we have this wonderful baby boy on the way! Please don't get me wrong - Josh and I are trusting the Lord throughout this whole process because we know that this was HIS plan before we even knew we were pregnant, and really way before then! With that being said, I am still human and still have feelings that my human nature bring on, I am trying to learn how to balance everything. I don't think me saying "I am just trusting God" would be the complete truth. I am trusting Him, but I also have the same fears and worries all the same.

I also feel very blessed. Blessed by the number of people who have read this blog. Blessed by the number of people who are praying over our family and this baby. Blessed that the Lord has chosen Josh and I to be baby Murphy's parents. Blessed that my family is a wonderful support system. Blessed by the new found friendships I have formed through this new found diagnosis. Blessed for my wonderful husband - seriously, you all don't even know how wonderful he has been throughout the whole entire pregnancy. 

Forgive me if over the next few days ,weeks, months (I don't really know) if I seem stand-offish or maybe a little less like myself. I am still trying to wrap my mind around everything and I think as my due date becomes closer all of these emotions with strengthen. Right now I am focusing on making sure me and the baby are healthy, getting prepared for what all baby Murphy will need once he is here and enjoying this pregnancy. God is watching over us no doubt, and He will always, ALWAYS provide for us.

What's Next?

I realize my last post didn't really give you an update on what is coming next and not too many details of what the actual diagnosis is. I'll start with the diagnosis.

Tetralogy of Fallot with Absent Pulmonary Valve syndrome is a very rare complex heart defect that affects many areas of the heart and he will require open heart surgery soon after birth. I won't lie the words "open heart surgery" SCARES me to death. It breaks my heart that my little baby boy will have to have such a big surgery right after birth - but I trust all of the doctors and know he is in good hands with them and with the Lord. God will be right by his side and Josh and I's throughout everything. It also makes me sad that he will be whisked away shortly after birth to get everything taken care of and check on his heart. I want to be able to have that "TV/Movie" delivery - you know, where you have the baby and then you just hold them forever and all of your friends and family come visit? It won't be like that - and I still need to adjust to that, and I will, but right now it hurts to even think about.  

Now on to the next steps:

At our appointment with Maternal-Fetal we had the amniocentesis done and results take 2-4 weeks to come back. They want to make sure there are no genetic issues along with the heart issue. Not something I am stressing about too much, but I definitely don't like the waiting game. We have our next appointment in four weeks, but as they get different results in they will call me. They called today to say the first round of tests were negative! We were expecting this but it was nice to hear!

We also have another appointment with Dr. Pohl - the OB - and Dr. V - the pediatric cardiologist. These are both on the same day. My appointment with Dr. Pohl consists of the glucose test - prayers appreciated that I do not have gestational diabetes! 

Another call we are waiting on is from the surgeon at Egleston. They want to set up a time to meet, discuss the surgery, and do a tour of the hospital. Still a little overwhelming, so I am glad they haven't called quite yet. Honestly - what first time mother wants to tour a hospital where there, currently, unborn son, will be having open heart surgery? Not my first choice of things to do. On the other hand I am very grateful they will be doing this for us, it will make it slightly easier... sort of. I am also going to meet with the Neonatologist at Gwinnett Medical. My aunt Deedy works with him and said he is willing to sit down and discuss everything that will be happening at Gwinnett and answer any questions I may have. She has also been a HUGE help through this 'twilight' phase. She is a NICU nurse at Gwinnett so she has been able to offer some insight and encouragement.

Thank you all again for prayers. Please do not hesitate to share this blog with your friends on Facebook – I firmly believe in the power of prayer. Sorry for the long posts two days in a row – my mind is just spinning in circles at the moment and it helps me to write/type.

This has always been my favorite verse, and it rings true now more than ever.

"Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight." Proverbs 3:5-6

& baby makes three!

Hi Family & Friends! 

I have started this blog as a way to keep everyone updated on the happenings in the Murphy world and progress on baby Murphy. I will be honest - I have a huge fear of writing something that everyone will read because it may sound weird or different. I am putting all of that aside in order to keep everyone updated and use this as an outlet for my mixed emotions/feelings.

Here we go:
   Everyone knows that Josh and I are expecting our first baby boy on May 20, 2013 and we could not be more excited! We have loved every minute of thinking about what he will be like, his name, and what sports he will play once he is a 'wee' bit older :) What most of you don't know is that baby Murphy is having some heart issues and will need surgery soon after birth. 
    We went in for the normal 20 week anatomy ultrasound with Dr. Pohl (who I LOVE) on Wednesday, January 2 and they measured and took pictures of EVERYTHING (and confirmed we were indeed having a boy)! Once the doctor reviewed the ultrasound and spoke with the technician he came in to the room to discuss the results and check up on us. He told us that baby Murphy looks healthy and everything looks great minus one concern he has in regards to his heart. My heart sunk. My worst fear is that something is wrong with my baby and hearing the word "concern" come out of his mouth was all of this coming true. He explained that the right ventricle is slightly larger than the left ventricle. He wasn't too sure what it could be so he couldn't give us any answers and just told us that we would need to see the Maternal-Fetal specialists because they can look in to it a little deeper with their technology. We were told by the receptionists that they would call us after they had set up the appointment with the other doctor and let us know. We left in a sense of confusion with not many answers or ideas about what was going on, and it made me very worried/fearful.
    Dr. Pohl's office called back on Thursday and said the next available appointment was Wednesday January 16 - TWO WEEKS AWAY. I expressed a little concern because I knew I would continue to be worried and they were very nice about everything. I got the office number for the Maternal Fetal Specialists and called to schedule and earlier appointment, but there were none available. Anna, the receptionist, told me to call back on Monday and check for any cancellations, so I waited through the weekend and asked a handful of people to pray for Josh, myself, baby Murphy and an earlier appointment time. God is in control of this situation and he has knitted this baby together from the very beginning. I am trusting Him through everything and will continue to do so - even though the fear is still very present. 
   Monday morning I called the Maternal-Fetal Specialists and there were, sadly, no cancellations. She  said "please call back everyday - I promise something might open up". About 30 minutes later she called back with a cancellation for today! I was so thankful that they were able to see us so soon. Fast forward to today - the appointment. 
    Josh and I were pretty shaken up going in to the appointment because we really had no idea what to expect at all. I filled out the mountain of paperwork and then went back to get all my vitals measured. We went in for the ultrasound and the technician was very friendly. She took lots of pictures of baby Murphy - even some 3D ones :) She explained everything and told us everything she was doing and then went to talk to the doctor, Dr. Eller. He came back in about 15 minutes later to discuss and told us he also was not sure what the issue was, but that there was something so we needed to go see the pediatric cardiologist. He also wanted to do an amnio - basically they stuck a long needle in my stomach and took out some of the amniotic fluid to do chromosomal testing to make sure the heart issue isn't related to any chromosomal issue. Anyone who knows me knows I have a huge fear of needles so this was the last thing I went in to today's appointment wanting to do. Josh held my hand and it was over in a matter of seconds - results, though, won't be back for another 2-4 weeks :/ They were able to schedule us with the pediatric cardiologist for this afternoon - so we left to eat lunch and then headed back to the pediatric cardiologist - Dr. V.
   The pediatric cardiologist appointment went about the same as the one prior - went in for an ultrasound with the technician and then the doctor and the technician came in together. The technician took a lot of pictures of the heart and some video so the doctor would be able to review. He gave us the diagnosis that baby Murphy has a complex heart defect - Tetralogy of Fallot with Absent Pulmonary Valve Syndrome. Basically there are several issues with his heart -  BUT all can be corrected with a surgery that will occur after birth. Right now the process is to continue to see each doctor every 4 weeks (total of three doctors) and they will monitor everything until baby Murphy makes his BIG arrival! Once he is born - the decision about the actual time frame of surgery will happen. 

   Sorry this post is relatively long - but I wanted to let everyone know what is going on so you can pray specifically and I didn't have to tell the same story multiple times. All of this is still sinking in and we just need time to process everything for right now. I will continue to update this blog throughout the pregnancy, but especially after we have our appointments so you can continue to pray specifically.

He says - "Don't worry mom and dad - it's all gonna be okay!"

Here is a cute one of his face :)

Love you all - and thank you for the prayers! 
"For I know the plans I have for you" declares The Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11