It has been a while since a blog update - but that is usually a good thing because it means I haven't had any doctors appointments and I have been able to just take it easy :) I had my appointment with my regular OB - Dr. Pohl - today! I had met my mom earlier for lunch and she treated me to a pedicure (much appreciated!). I headed back to her house to lay down for a bit and wait for my appointment after we got done. Josh was supposed to go with me, but unfortunately he got stuck at work :( It really wasn't that big of a deal because I figured it would just be a regular appointment. So, when my mom offered to go I told her not to worry about it.... (my mistake....). My reasoning was that I felt prepared and didn't really think Dr. Pohl would give me any "new" news, so I wanted to go to an appointment by myself (for the first time ever this pregnancy, HA!).
Let me preface what I am about to say with a few details about last week. I had an impromptu trip to Dr. Pohl last week because of some questions I had regarding pre-term labor and he wanted me to come in to the office. I did go to this appointment by myself (I don't count it though because it wasn't scheduled!). He did an ultrasound of my cervix to make sure it looked okay and also did a fetal-fibronectin. This tests for any chances of pre-term labor in the next two weeks (it came back negative!). When I went in for this appointment I was 27 weeks and my stomach was measuring 31 weeks. This difference is somewhat expected because we already know I have slightly high levels of amniotic fluid. I didn't blog about this visit because it wasn't really anything serious and I didn't want anyone being concerned for nothing! That leads me to this appointment...
Dr. Pohl did his normal measurements of my stomach and listened to the heartbeat, which was a strong 147. I asked him a few questions about the back and rib pain I was experiencing and he explained the reasoning for all of that... I know it is a part of pregnancy I just wanted to know what was the cause! Afterwards he sat down and told me that I was measuring a little ahead (remember, I am 28 weeks now). I asked what he meant by a little - his response, 35 weeks. HOLY MOLY. Basically this means in the last WEEK I am measuring another 4 weeks ahead of where I should be normally. Because this number has jumped so high it is evident that the levels of amniotic fluid are increasing. There is a name for this - hyrdroamnios. He discussed the risks with me and I will use his example because it makes it really easy to understand! Basically when you are pregnant your uterus is designed to go in to labor when it reaches the "measurements" of around 40 weeks (some people go in to labor early, some late). Moms that are pregnant will twins usually go in to labor early and since they have two babies they measure further along for the most part throughout the whole pregnancy, so even though they have two babies the uterus just hits "go-time" when they reach the 'normal' 40 weeks measurement or close to it, hence why they are usually early. Since I am measuring ahead it does put me at risk for my body thinking it is time to delivery much earlier than it is really time - and in my situation that is a big no-no and something we would ALL like to avoid at ALL costs.
I have a follow-up appointment with Maternal-Fetal on Monday and they will measure the levels of amniotic fluid via ultrasound and Dr. Pohl said I can request them to do an ultrasound of the cervix. Dr. Pohl also scheduled me for Friday with him so he can run another fetal fibro-nectin and measure my cervix. If there is any shortening or softening they will put me on bedrest and continue to monitor. If it continues while I am on bedrest I will go in to the hospital so they can monitor everything closely because we really want Baby Murphy to stay in and grow as much as possible before his birth. We still don't know when he will need surgery so if he needs it soon after birth it would be better for him to be born closer to full-term and be as big as possible.
I called Josh to fill him in and I called my mom too - who proceeded to say "I KNEW I should have gone!" (I don't think she will miss another appointment). The last time I told her it would be okay if she didn't come was when we found out the first signs of a lung issue at Maternal-Fetal. She ended up coming to that appointment anyways, so I should have known I was going to get "hit again" when I told her not to worry about coming....oh well. I am somewhat proud though because I held my composure and asked all the questions I wanted to get answered without freaking out. It is scary though because I get hit over the head with something new EVERY SINGLE TIME I go to the doctor... and I definitely won't be going to future appointments alone. Yes, I probably can do it alone but the truth is - I don't want to do it alone. I would much rather SOMEONE be there for support, especially if Josh can't be there. He is really trying to save all his time off for the time after the baby gets here so we have been picking and choosing appointments so we can have as much time with the baby after he gets here and Josh won't have to be running back to work.
I will be keeping you all up to date for sure, especially after Monday and my appointment with Maternal-Fetal. Hopefully I will have some cute 3D pictures to share :) and hopefully I won't be put on bed rest! I will say that whatever the doctors tell me and recommend is something I am going to follow very closely because I want baby Murphy to be in utero to finish growing as long as it is possible. Thank you to all of our prayer warriors for surrounding us and our baby with prayers! We appreciate them and ask that you continue to pray as we move throughout the next few weeks slowly and treading lightly. Before I ever got pregnant I was scared of having a baby, and now I feel terrified. I know God has a plan and we are trusting His guidance and wisdom throughout all of this - it just doesn't make it easier sometimes. I still have my humanly worries and fears that I face almost daily, luckily God already knows everything we are facing and has been/will be standing by us throughout everything these next few weeks/months bring to the table!
Love you all,
Ashlyn
Thursday, February 28, 2013
Monday, February 18, 2013
planning for the homestretch
It sure does feel
nice to be back in Atlanta! Although yesterday I am pretty sure it was colder
here than it was the few days we were in Cincinnati. I had a follow-up
appointment with the Maternal-Fetal Specialists today so we could touch base
and go over the plan for the remainder of my pregnancy. Since the doctors in
Cincinnati had recommended we have NST’s (non-stress tests) weekly starting at
32 weeks and induction at 38 weeks I wanted to make sure the doctors here were
aware and planned on following through with this recommendation. We were able
to see Dr. Read again (he was the doctor we saw last week that recommended we
head to Cincinnati). Josh wasn’t able to come with me because of work, but my mom
came just to make sure I didn’t forget to review anything and for peace of mind
since I feel like I never know what to expect at each appointment – last week
kind of threw me for a loop to say the least.
The technician was
able to get some 3D pictures for us (not as good as last week), and I think they have felt bad for us
lately so we have gotten some at every appointment (not complaining though
because I love seeing our little guy!).
He is such a little snuggler! |
Dr. Read came in and
did an ultrasound of his own. He had noted that last week my amniotic fluid
levels were somewhat high. They are still high this week, but nothing that is
raising any red flags and they will continue monitoring at every appointment.
He reviewed everything the reports from Cincinnati said just to make sure I was
told the same thing and we discussed the schedule of appointments with them.
For the next four weeks I will have an appointment every other week and at 32
weeks I will see them and Dr. Pohl (each) once a week. One doctor will be doing
the NST and one will be doing the BPP (biophysical profile). These appointments
will each be on two different days of the week so they are able to keep an eye
on the baby every few days. The plan is to have me induced around 38 weeks (May
6 or 7) but it could be earlier if things change or start to look concerning
(please pray that all will stay the same and he can stay in utero to develop as
much as possible). Even though I don’t have weekly (really twice weekly)
appointments until 32 weeks, my existing appointments are already weekly
starting now. I have my 28 week appointment with Dr. Pohl next week, the next
appointment with Maternal-Fetal the next week, and another appointment with Dr.
V (the pediatric cardiologist) on March 14. Whew! That is quite a lot to keep
up with, but I am thankful that he will have a set of eyes on him every week
until he makes his grand arrival! One question a lot of people have asked is if
I will have to have a c-section. All doctors have confirmed that the only
reasons for me having a c-section would be the same as a normal pregnancy so it
isn’t something we are planning on right now. In fact, it would be better if I
didn’t so that in the event that baby Murphy has to have surgery sooner than
later I can be released from the hospital quicker.
I left this doctor’s
appointment feeling a whole lot better than probably any other appointment I
have had in the past. There were no new issues and I somewhat have a plan. All
who know me and have read previous posts know that I love to plan, and that has
been one of the hardest things about this diagnosis – the fact that I cannot
plan for what will happen after his birth and that it all ‘just depends’ on how
he is doing once he gets here. I will say that I am very thankful that the
doctors discovered this in utero because the risks of him not surviving after
birth would be increased GREATLY by lack of being prepared. I am still
nervous/scared/worried/upset about everything that is going on, but God is
working in our lives and I am working towards being able to trust Him fully. It
is definitely a work in progress, but I know that whatever His plan is He will
be by our sides.
When I started this
blog it was more to be therapeutic for me in relation to all that is going on.
This diagnosis is a lot to swallow, and to be honest I still don’t know how I
am handling it. I prayed that God would allow my words to somehow be used if
that was part of His plan – and they have! I have been able to connect with
several other moms who are either pregnant with a child who has a CHD or have
had recently had a baby with a CHD. It has been nice to connect on my end and I
hope that I will be able to share my testimony to them and let them know they
aren’t alone. Not only with support from me, but to let them know that God is
on their side too and He wants to be their ultimate comforter, as He has been
for me. Psalm 55:22 says “Cast your cares on the Lord and he will sustain you; he
will never let the righteous be shaken.”
Some people may be wondering
what a CHD is – and I want to take a quick moment to explain. CHD stands for
Congenital Heart Defect. The diagnosis we have received for baby Murphy falls
under this category as well as many other heart defects. Every 1 in 100 babies
is born with a CHD and it is the most common birth defect, some more severe
than others. CHD’s affect about 40,000 babies each year and close to 4,000 won’t
make it to their first birthday. Before I found out what was going on with baby
Murphy, I was VERY unaware of CHD’s and their effect and severity on babies if
undiagnosed (and even when they are diagnosed). I want to try and raise
awareness so that more people and expectant moms are aware and don’t let this
diagnosis pass them by in utero and them be surprised at birth. I encourage you
to share the blog/facebook page because you never know who may see it and be
encouraged by our story.
I want to thank
everyone again who has supported us in prayer, financially, and by kind words
of encouragement throughout this journey. Thank you will really never be enough
to express my gratitude towards all of you. Baby Murphy is already loved by so
many and I know there are a lot of people excited to meet him! I have connected
with a few other moms who have babies (some still pregnant) with a diagnosed
CHD. Please keep these families and babies in your prayers as well! I posted a
few weeks ago about my friend Lacy and her baby Josiah. Baby Josiah has had his
first open heart surgery and is doing great! He is enjoying time at home with
mom and dad and spending time getting bigger before his next surgery in a few
months. Please keep this sweet family in your prayers as they spend time at
home and get ready for the next surgery for baby Josiah.
Special shout out to
my husband as well. God has definitely blessed me with this man and I don’t think
I could walk this path and face this battle without him. He has been able to
make me laugh and keep my mind off of things when all I wanted to do was cry.
We certainly didn’t know what this first year of marriage would bring, but I do
know this has made our marriage stronger and brought us closer together. So
thankful for his love and feeling beyond blessed to call him mine. I will keep
you all updated as the pregnancy continues and as I go to my next appointments.
Love to you all,
Ashlyn
Thursday, February 14, 2013
a day at Cincinnati Children's Hospital
Today has been quite the day - and I know you are all anxiously waiting for the
details of our trip up here to Cincinnati. I hope this post isn't too
long but I really don't want to forget any details so you can really understand
all that is going on and where the diagnosis sits today. I am going to break it
up in to two sections: morning appointments and afternoon appointments and
start off with some details about our journey up here yesterday. Another thing –
the main reason we came to Cincinnati was because of the risk of lung
anomalies, that require surgery that is only preformed here and in three other
hospitals nationwide. We wanted them to take a closer look since they are more
well-versed in the lung issues area.
We left yesterday at about 8:30 AM and started our way up here to Cincinnati.
Because I am pregnant we needed to stop every hour and a half or so for
bathroom breaks but also so I could get out and walk around. We made it in at
about 6:30 PM and checked in to the hotel. I posted on the page, but wanted to
share it again here - we were SO blessed to find that someone had paid for our
hotel stay upon our arrival. We are already weary about how finances were going
to play a part in this trip because we are trying to prepare for the massive
amount of medical bills from the already existing heart condition. My dad and
Josh headed out to pick up some pizza and we just ate in the room and got some
things ready for the morning - we had to be up and ready by 6 AM! I probably
dosed off around 11:30, but woke up from 1:30 - 2:45 and had a snack (I guess
me not being able to sleep made me have the munchies). I finally dosed back off
around 3 PM.
Morning Appointments
Fetal MRI - Waking up at 6 AM was pretty difficult - I was tired and
hungry ( I couldn't eat anything after the midnight snack I had until after my
MRI that ended at 8 AM). We headed to the hospital and got checked in to
Radiology at about 6:30 AM and were called back pretty quickly. They had me
sign all sorts of forms and then gave me the instructions. My parents waited in
the waiting room, but Josh came in to the MRI room with me. I had to lay on my
side and be still for at least an hour or until they were done taking pictures.
The only issues they have with the fetal MRI's are that they can't really
control the baby's movements, so they have to take a good amount of pictures.
When all was said and done, it had been an hour and a half of total
uncomfortableness, but I made sure not to move a muscle so they could get
really good pictures and a better idea of what was going on. After all, this is
the MAIN reason we are here. I felt baby Murphy kicking around ALL night long
so I thought for sure he would be still - HA! He was jumping around like he had
kickboxing practice the WHOLE time but they did get all the pictures they
needed.
Ultrasound
- Once
the MRI was over we headed to have an ultrasound done and my mom and dad joined
us. The appointment was scheduled for 8 AM, but we got over there around 8:30
AM. We have had these done in Atlanta, but they really wanted to do one of
their own just to have a good look at everything. This took about an hour and
we were able to head up to Pediatric Cardiology for our echocardiogram around
9:45 to register and wait for the 10:30 appointment. We didn't get any
"printouts" from this ultrasound but we did see him sticking his
tongue out LOL.
Echocardiogram - Once we registered we went back about 10:25 and started
the echocardiogram. I had been eating somewhat throughout the day, but I guess
the prolonged laying on my back and lack of food caused me to become VERY
nauseous and dizzy. We had to stop half-way through so I could sit-up because I
was really afraid I was about to pass out. I have never felt like that before
and would like to NEVER feel like that again. The technician had me lay on my
side for the remainder and that seemed to help. After she finished she took the
images to the doctor and he came in about 30 minutes later to discuss what they
had found. He confirmed everything we had already heard in Atlanta in regards
to the heart condition, which was somewhat reassuring because everything was in
line. He didn't really discuss much else with us because he would be in our
team meeting at 2. We left and headed to get some lunch before the start of our
meetings at 12:30 PM.
Afternoon Appointments
12:30
PM - This
was our meeting with the RN assigned to our case, Avery. She just went over
some details in regards to what may be happening with the baby and go over the
team meeting we would have at 2 PM.
1:00 PM - We met with Erin the social worker assigned to our case. She
reviewed financial assistance options and the Ronald McDonald house in the
event we would need to stay in Cincinnati.
1:30 PM - We met with Jackie the genetics counselor. She reviewed that
our amnio results were all negative (which we already knew) and discussed that
because this was not genetic related that the risk for a future pregnancy
having a heart defect (any heart defect) was low - between 3-5%.
2 PM
- This was our team meeting, the thing we had been waiting for all day. We met
with the pediatric cardiologist, surgeon, maternal-fetal high risk doctor, and
a neonatologist. We would finally find out if the lung issue is related to the
heart defect or if it is another anomaly all in itself. From the MRI images and
the ultrasound, all of the people in our meeting had come to the same
conclusion. They were able to tell us with confidence that the “brightness” in
the lungs and their swelling/filling with fluid was related to the swelling
caused by the Tetralogy of Fallot with Absent Pulmonary Valve Syndrome. This
was a sigh of relief because we weren’t looking at an ADDITIONAL issue in
regards to the heart, just something as a sort-of side effect from the defect.
They all wrote letters that will be sent to the respective doctors following
our care in Atlanta. Babies with Tetralogy of Fallot with Absent Pulmonary
Valve (ToF APVS) have a high risk of still birth later in pregnancy – not the
greatest fact but it is the truth. I will continue to be monitored weekly, and
once I hit 28-30 weeks they will start antenatal testing and monitoring me more
closely. The longest they want me to carry is 38 weeks, so it looks like baby
Murphy will make his big arrival sometime between May 5-6, and we can FINALLY
we can reveal his name! The doctors didn’t really give us any estimate on the
time frame of surgery because, as always, it depends on how he is doing once he
is born.
I wish I could say that I am “extremely” relieved that it was not a separate
lung issue, but I am not. The heart condition is VERY serious and VERY rare and
it is still a big deal that the lungs are showing these signs early on in
utero. The doctors stated that they have only seen this happen one other time
in the past year at their facility. The doctors did say that once we received
the first diagnosis in Atlanta that our doctors notated in the chart to almost
expect lung brightness, but when they saw them continuing to get brighter it
through up a red flag which made them want to send us up here to Cincinnati. I
am SO glad we came, because if not we really would not haven’t been sure what
the cause of the lung concern was throughout the remainder of the pregnancy.
Luckily we will be able to head back to Atlanta and continue the pregnancy and
also deliver there (another relief, we were worried about having to come back
to Cincinnati at a later date). The next weeks of pregnancy (only about 11
left!) will be spent preparing for baby Murphy and the unknown future after he
is here. The financial burden is something that scares me as well. Medical
expenses are something that cannot be avoided and we will do ANYTHING to
provide for our baby boy, it is just intimidating.
I have to say we are so overwhelmed by your prayers and support so far and so
thankful. Words really cannot even express how grateful I am. God has answered
our prayers in regards to the lungs, and I know He has a plan for the rest of
the pregnancy and baby Murphy’s life. He is going to work through this
experience and diagnosis in ways we cannot see- and ways I am still struggling
to see. I just wish my baby boy was perfectly healthy and wouldn’t have so many
health concerns already, but I have to trust that God will prepare us for the
next few months and we will be able to fully rely on him. I will continue to
update everyone as these next weeks progress. Specific prayer requests are that
nothing changes significantly in the negative direction. Any negative changes
and/or added worries could cause us to head back to Cincinnati. Please pray
that baby Murphy stays safe inside and the right time for delivery is chosen.
The risk of still birth is something that is so terrifying and overwhelming. Since we spent all day driving yesterday and all day in the hospital today we are staying here until Saturday and using tomorrow as a day to rest and try to relax before heading back to Atlanta on Saturday.
Praising God for His blessings today and answered prayers. Thank you prayer
warrior friends!
Tuesday, February 12, 2013
trip to Cincinnati
I knew they wanted to see us soon, I guess the reality of how soon never really had time to sink in. Our first appointment is Thursday at 7 AM - so we are leaving tomorrow to give us time to travel and get settled in a get a good nights rest. Thursday is going to be a very busy day for us. I will be posting the "schedule" so you can be in prayer throughout the day for the various tests and meetings we will be having.
Today has been quite a whirlwind, but I knew everything would move quickly once we decided to make the journey to Cincinnati. I currently have a full-time position with a company that has been more than understanding and supportive through the many appointments we have already had through this journey. Although I know my baby's health is more important, I still felt bad that I would be giving them little to no notice of this upcoming trip. As in the past, they were more than supportive and have even offered the opportunity for me to come back and work part-time until the baby comes to make it easier on me and easier to go to all the doctor appointments. I am so thankful for this - because it is one less thing I have to worry about. I finished up everything and left early to come home and pack and get ready to leave for a trip that has an undetermined amount of time.
I have been in contact with several ladies up at the Cincinnati Childrens Hospital already to schedule my appointments and to go over what will be happening. Their names are Emmie and Avery - both very friendly and informative. Basically they can't give me a time frame of my stay because, you guessed it, it depends on what is found on Thursday. I am going to post the schedule below - but I want to give some more details of what has happened today.
Traveling to a city you have never been before, where you know no one, and you have no idea how long you are staying is VERY intimidating. The Lord has been so faithful through the preparations for this trip in several ways. We have had a wonderful couple offer to pay for our gas expenses for this trip - a HUGE blessing. We have been connected with several people in Cincinnati that will be able to help us while we are up there, including a local church and someone who has offered their home to us. Unfortunately we already booked a hotel, but we don't know at this time if we will need to go back at a later date or not so it is another HUGE blessing that someone has offered this up to us. Another family has also offered their home as a "pit-stop" on our road trip home if we just need a break from driving. There are people all over the United States that have seen our blog and are reaching out to let us know they are praying for us. It is easy to get so down and out and confused about the medical situation, but I am trying to focus on all of these blessings the Lord has given us in regards to travel and preparing for this trip. I'm still stuck in a twilight zone and have hardly had time to process anything because we have just had to be prepared so fast. I am so overly thankful for everyone who has reached out to us and are praying for us. This means more than words can ever say.
Here is the schedule for Thursday with times so you can pray at specific times:
7 AM - MRI - pray that they are able to clearly discern what is going on in the lungs.
8 AM - Ultrasound - continue to pray for the doctors to discern the correct diagnosis and procedure
10:30 AM - Echocardiogram - They will take a look at the already existing heart condition just so they can have a first hand look and be well-informed.
12:30 PM - Consult with the Nurse Practitioner assigned to our case.
1 PM - Social Services appointment - pray for peace and that we are able to get any questions answered.
1:30 PM - Genetics counselor appointment
2 PM - Team Meeting*
*The team meeting with consist of the Pediatric Cardiologist, Pediatric Surgeon, ENT, and High-Risk Maternal Fetal Specialist. Please pray specifically for this appointment on Thursday. This is where we will receive all diagnosis and the plan of care for the rest of pregnancy. I am probably the most nervous about this because as in the past, I am unsure what to expect. They will tell us if they are going to do the surgery in utero while we are there or if there are other steps they would rather take.
Thank you in advance again for your continued prayers. They are a blessing in themselves. Please continue to check http://www.facebook.com/BabyMurphyUpdates?ref=ts&fref=ts for regular updates on the blog and also little updates about what is going on will be posted there. Just "like" the page and it will show up in your newsfeed. We love you all and are blessed to call you friends and family.
Love to you all,
Ashlyn Murphy
Today has been quite a whirlwind, but I knew everything would move quickly once we decided to make the journey to Cincinnati. I currently have a full-time position with a company that has been more than understanding and supportive through the many appointments we have already had through this journey. Although I know my baby's health is more important, I still felt bad that I would be giving them little to no notice of this upcoming trip. As in the past, they were more than supportive and have even offered the opportunity for me to come back and work part-time until the baby comes to make it easier on me and easier to go to all the doctor appointments. I am so thankful for this - because it is one less thing I have to worry about. I finished up everything and left early to come home and pack and get ready to leave for a trip that has an undetermined amount of time.
I have been in contact with several ladies up at the Cincinnati Childrens Hospital already to schedule my appointments and to go over what will be happening. Their names are Emmie and Avery - both very friendly and informative. Basically they can't give me a time frame of my stay because, you guessed it, it depends on what is found on Thursday. I am going to post the schedule below - but I want to give some more details of what has happened today.
Traveling to a city you have never been before, where you know no one, and you have no idea how long you are staying is VERY intimidating. The Lord has been so faithful through the preparations for this trip in several ways. We have had a wonderful couple offer to pay for our gas expenses for this trip - a HUGE blessing. We have been connected with several people in Cincinnati that will be able to help us while we are up there, including a local church and someone who has offered their home to us. Unfortunately we already booked a hotel, but we don't know at this time if we will need to go back at a later date or not so it is another HUGE blessing that someone has offered this up to us. Another family has also offered their home as a "pit-stop" on our road trip home if we just need a break from driving. There are people all over the United States that have seen our blog and are reaching out to let us know they are praying for us. It is easy to get so down and out and confused about the medical situation, but I am trying to focus on all of these blessings the Lord has given us in regards to travel and preparing for this trip. I'm still stuck in a twilight zone and have hardly had time to process anything because we have just had to be prepared so fast. I am so overly thankful for everyone who has reached out to us and are praying for us. This means more than words can ever say.
Here is the schedule for Thursday with times so you can pray at specific times:
7 AM - MRI - pray that they are able to clearly discern what is going on in the lungs.
8 AM - Ultrasound - continue to pray for the doctors to discern the correct diagnosis and procedure
10:30 AM - Echocardiogram - They will take a look at the already existing heart condition just so they can have a first hand look and be well-informed.
12:30 PM - Consult with the Nurse Practitioner assigned to our case.
1 PM - Social Services appointment - pray for peace and that we are able to get any questions answered.
1:30 PM - Genetics counselor appointment
2 PM - Team Meeting*
*The team meeting with consist of the Pediatric Cardiologist, Pediatric Surgeon, ENT, and High-Risk Maternal Fetal Specialist. Please pray specifically for this appointment on Thursday. This is where we will receive all diagnosis and the plan of care for the rest of pregnancy. I am probably the most nervous about this because as in the past, I am unsure what to expect. They will tell us if they are going to do the surgery in utero while we are there or if there are other steps they would rather take.
Thank you in advance again for your continued prayers. They are a blessing in themselves. Please continue to check http://www.facebook.com/BabyMurphyUpdates?ref=ts&fref=ts for regular updates on the blog and also little updates about what is going on will be posted there. Just "like" the page and it will show up in your newsfeed. We love you all and are blessed to call you friends and family.
Love to you all,
Ashlyn Murphy
Monday, February 11, 2013
heart broken
I wish I could say this post was going to be happy and go-lucky and bring some type of positivity, but in all reality it won't. Many of you know we had a follow-up ultrasound with Maternal-Fetal today after our last appointment on Thursday where they noticed some areas of concern with the lungs. We met with Dr. Read today because Dr. Lipscomb was not in and she had actually wanted us to see him. Josh isn't too fond of seeing a different doctor every time but it doesn't bother me too much. They are all very well qualified and are very up to date with our case/chart each time we visit. We started the appointment like normal with them checking my stats and the ultrasound technician doing the initial ultrasound for the doctor to review before he came in and discussed what was going on. She didn't really say much but snapped some cute 3D pictures (I will post these later) and told us the doctor would be in soon. My mom was at this appointment with us again and we both discussed that we could tell the lungs had gotten brighter even from just looking at the ultrasound.
Dr. Read eventually, literally like 45 minutes later, came in to talk to us and discuss what he was seeing on the ultrasound. He confirmed our suspicions that the lung issue from last time had gotten worse and gave us two possible diagnosis that were related to what he could see. The first was CHAOS and the second was tracheal atresia. CHAOS stands for Congenital High Airway Obstruction Syndrome. Both of these conditions are VERY rare, probably even more so than the already existing heart condition. There are no specialists in the South that deal with either of these conditions and they want us to go to Cincinnati, OH to have a MRI and discuss what the options for in-utero surgery would be, and they want us to go relatively soon - as soon as this week. Basically the heart condition already obstructs the airways from the swelling pressing on the bronchi and the intial goal (before the lung issue arose) was to let me go as long as possible to give the lungs the chance to develop. Now, with this very serious and rare lung condition there are limitations to his lung development which is why they do the surgery in-utero. I would go in to detail about the surgery but it is really even more than I can understand at this point and we won't know what all it entails until we head up to Cincinnati.
We don't have to go to Cincinnati, and they gave us the opportunity to make the decision for ourselves. Josh and I both feel strongly that we should go because of the already existent risks from the heart condition. We also think this is our best bet of getting a qualified second opinion. Because this condition is so rare the Cincinnati Children's Hospital has only seen 3 cases, EVER. We have to call tomorrow to give our decision and we will let them know we have decided to go ahead and go up there. They will cancel my MRI here next week and just do the MRI up there instead. We are also going to see Maternal-Fetal again on Thursday, pending they do not want us in Cincinnati before then. Dr. Read seemed legitmately concerened that there was change in 3 days and he also called up there to get their opinion. To be honest, these doctors know way more than I do and we are trusting their opinion in regards to going ahead with the trip.
I honestly don't even know what to think, say, or feel at this time because I am so overwhelmed. I am really struggling with the 'Why Me?' question and don't understand why our baby has to have TWO very RARE conditions. It also scares the living daylights out of me - all of it. The pending in utero surgery, the birth, and what he will go through after he is born. I love my baby so much already and it just breaks my heart to think of all that he is going through and he is just so little. I am asking that you continue to pray for peace of mind, our trip to Cincinnati, the doctors, our family, our baby, and our financial situation. I wish I had all the answers, I wish all of this would go away, I wish things were normal, and I wish that I didn't feel sick to my stomach 24/7.
Thank you so much for your continued prayers/support/words of encouragement because they all mean so much. Forgive me if I don't respond to you immediately, I am still working on processing all of this and trying to trust that the Lord does have a plan and he does all things for good. It's been a struggle the past month and I feel the struggle has just intensified to something I have never experienced before.
Love to you all,
Ashlyn
Dr. Read eventually, literally like 45 minutes later, came in to talk to us and discuss what he was seeing on the ultrasound. He confirmed our suspicions that the lung issue from last time had gotten worse and gave us two possible diagnosis that were related to what he could see. The first was CHAOS and the second was tracheal atresia. CHAOS stands for Congenital High Airway Obstruction Syndrome. Both of these conditions are VERY rare, probably even more so than the already existing heart condition. There are no specialists in the South that deal with either of these conditions and they want us to go to Cincinnati, OH to have a MRI and discuss what the options for in-utero surgery would be, and they want us to go relatively soon - as soon as this week. Basically the heart condition already obstructs the airways from the swelling pressing on the bronchi and the intial goal (before the lung issue arose) was to let me go as long as possible to give the lungs the chance to develop. Now, with this very serious and rare lung condition there are limitations to his lung development which is why they do the surgery in-utero. I would go in to detail about the surgery but it is really even more than I can understand at this point and we won't know what all it entails until we head up to Cincinnati.
We don't have to go to Cincinnati, and they gave us the opportunity to make the decision for ourselves. Josh and I both feel strongly that we should go because of the already existent risks from the heart condition. We also think this is our best bet of getting a qualified second opinion. Because this condition is so rare the Cincinnati Children's Hospital has only seen 3 cases, EVER. We have to call tomorrow to give our decision and we will let them know we have decided to go ahead and go up there. They will cancel my MRI here next week and just do the MRI up there instead. We are also going to see Maternal-Fetal again on Thursday, pending they do not want us in Cincinnati before then. Dr. Read seemed legitmately concerened that there was change in 3 days and he also called up there to get their opinion. To be honest, these doctors know way more than I do and we are trusting their opinion in regards to going ahead with the trip.
I honestly don't even know what to think, say, or feel at this time because I am so overwhelmed. I am really struggling with the 'Why Me?' question and don't understand why our baby has to have TWO very RARE conditions. It also scares the living daylights out of me - all of it. The pending in utero surgery, the birth, and what he will go through after he is born. I love my baby so much already and it just breaks my heart to think of all that he is going through and he is just so little. I am asking that you continue to pray for peace of mind, our trip to Cincinnati, the doctors, our family, our baby, and our financial situation. I wish I had all the answers, I wish all of this would go away, I wish things were normal, and I wish that I didn't feel sick to my stomach 24/7.
Thank you so much for your continued prayers/support/words of encouragement because they all mean so much. Forgive me if I don't respond to you immediately, I am still working on processing all of this and trying to trust that the Lord does have a plan and he does all things for good. It's been a struggle the past month and I feel the struggle has just intensified to something I have never experienced before.
Love to you all,
Ashlyn
Thursday, February 7, 2013
another piece to the puzzle...
I'm not really even sure where to begin this post. The best thing to do is probably start at the beginning. Last week I had my appointments with Dr. V (our pediatric cardiologist) and Dr. Pohl (my regular OB) and this week we had a follow up with the maternal-fetal specialists (the high-risk doctor). We knew that we would continue to have appointments with them because they will be monitoring baby Murphy through ultrasounds rather than us seeing Dr. V and Dr. Pohl more frequently. Our appointment was at 9AM. One of the good things about these appointments (with Dr. V, Pohl, and Maternal-Fetal) is that they are all in the same building at Gwinnett Medical, which is right down the road from our house.
My mom has been going to all the appointments so far and since I knew this would just be a follow-up and wouldn't tell us anything new I told her it would be okay if she didn't come. At our last appointment they gave us some 3D images and I think she wanted to see that again so she decided to just come along and be able to see the ultrasound and possibly some 3D images. Unfortunately, we weren't lucky enough to get anymore 3D pictures, but they did get some good ones of his profile!
The appointment started out the same, the ultrasound tech was just taking measurements and making sure everything still looked good. Last time we went we saw Dr. Eller but he was not in today so our doctor was Dr. Lipscomb. After the ultrasound technician left we were waiting on Dr. Lipscomb to come in for quite some time... When she came in she was so nice and she started an ultrasound. Then she said the dreaded words "there is something that concerns me", and I literally almost lost it right there. She mentioned that the ultrasound technician had noticed something with his lungs and she could see it to on the screen. I felt like I had been hit in the throat. One of my first thoughts was "are you kidding me - are we really going through this again?" She wasn't sure if it was their new imaging (it had changed since last time) or if it was something that would require a fetal MRI so they could get a better picture, and she also wanted to check with Dr. V to see if they had picked it up on their ultrasound last week. She left us in the room to go call Dr. Videlfsky and look at the previous images.
So, there we were ... again, waiting to hear what the verdict was as we had been in the past. I felt the exact same way we had when we left Dr. Pohl's office the first time a month ago and he had told us that there might be an issue and he was unsure what it might be. When the doctor came back in the room I really had no idea what was going to happen. I am so thankful that she called Dr. V right away and wanted to discuss with him in regards to how it relates to the heart. Based on the previous pictures, Dr. Lipscomb did notice the same "area" (that is what I am calling it for now because I really don't know how to describe it) on his lungs. Since it was more pronounced now, she and Dr.V decided to go ahead and have me scheduled for a fetal MRI and they want me to come back on Monday so they can see if there are any changes and try to get a better picture of everything. Dr. Lipscomb said she was sorry for how it had upset me and for possibly giving me too much information. I told her I was used to it by now and would MUCH rather be prepared, that is just my personality, even if it is upsetting right now.
I honestly don't know what to say is going on because much like when they first noticed something with baby M's heart, they didn't really give me any options of what it could mean. She named a few things, but I am not posting them here for a few reasons. One – since we aren’t sure, I don’t want myself or anyone else making speculations based on the few things they threw out. Two – I don’t want to say what it ‘might be’ because that is never certain. Once they get a better idea or know for a fact what it is I will definitely be posting that on the blog. A question that I am sure most of you will ask – “Is this something caused by the heart issues already existing”. The answer isn’t for sure right now, but Dr. Lipscomb indicated that from what they could tell it wasn’t and that’s why it stuck out. Hindsight is 20/20 for sure. I never suspected anything from the ultrasound tech, but now I remember her asking if Dr. V had mentioned anything about the lungs – to which I replied “no, but we know his arteries are dilated and would affect his breathing”. That wasn’t what she was asking – and now I know why she was asking. We don’t know what is going on, if anything, but the unknown really is the worst. I’d like to think it is nothing, but that is another thing I have learned through this experience – be prepared for BOTH sides. If it does turn in to something, I will be so thankful they found it NOW, rather than a surprise at the birth with his already existing heart condition.
My thoughts after today are scrambled. I am being completely honest when I say that I feel like I am holding on by a thread. I went in to this appointment just thinking it would be a normal appointment where we would get some cute pictures and find out when we had to come back. Talk about being punched in the throat – or maybe a living nightmare? If I have learned anything through this experience so far it is to take it day by day. I am not worrying about what it is, because I don’t know what to worry about and we really aren’t sure if there is an issue. I am just frustrated because I wish this wasn’t happening. I still haven’t wrapped my mind around this heart issue and then BAM! The waiting game continues and it is becoming ever more frustrating. I am trying my hardest to trust the Lord and his plan because I KNOW he has a plan. I just wish I could see it and know how it works out in the end.
Thank you all again for your prayers and support – it all means so much to Josh and I through this time of ups and downs. I don’t know what is in store for all of us - but it really is nice to have such a large group of people supporting us and standing by our side. We love you all!
My mom has been going to all the appointments so far and since I knew this would just be a follow-up and wouldn't tell us anything new I told her it would be okay if she didn't come. At our last appointment they gave us some 3D images and I think she wanted to see that again so she decided to just come along and be able to see the ultrasound and possibly some 3D images. Unfortunately, we weren't lucky enough to get anymore 3D pictures, but they did get some good ones of his profile!
My mom thinks he is giving a fist pump! Lol |
So, there we were ... again, waiting to hear what the verdict was as we had been in the past. I felt the exact same way we had when we left Dr. Pohl's office the first time a month ago and he had told us that there might be an issue and he was unsure what it might be. When the doctor came back in the room I really had no idea what was going to happen. I am so thankful that she called Dr. V right away and wanted to discuss with him in regards to how it relates to the heart. Based on the previous pictures, Dr. Lipscomb did notice the same "area" (that is what I am calling it for now because I really don't know how to describe it) on his lungs. Since it was more pronounced now, she and Dr.V decided to go ahead and have me scheduled for a fetal MRI and they want me to come back on Monday so they can see if there are any changes and try to get a better picture of everything. Dr. Lipscomb said she was sorry for how it had upset me and for possibly giving me too much information. I told her I was used to it by now and would MUCH rather be prepared, that is just my personality, even if it is upsetting right now.
I honestly don't know what to say is going on because much like when they first noticed something with baby M's heart, they didn't really give me any options of what it could mean. She named a few things, but I am not posting them here for a few reasons. One – since we aren’t sure, I don’t want myself or anyone else making speculations based on the few things they threw out. Two – I don’t want to say what it ‘might be’ because that is never certain. Once they get a better idea or know for a fact what it is I will definitely be posting that on the blog. A question that I am sure most of you will ask – “Is this something caused by the heart issues already existing”. The answer isn’t for sure right now, but Dr. Lipscomb indicated that from what they could tell it wasn’t and that’s why it stuck out. Hindsight is 20/20 for sure. I never suspected anything from the ultrasound tech, but now I remember her asking if Dr. V had mentioned anything about the lungs – to which I replied “no, but we know his arteries are dilated and would affect his breathing”. That wasn’t what she was asking – and now I know why she was asking. We don’t know what is going on, if anything, but the unknown really is the worst. I’d like to think it is nothing, but that is another thing I have learned through this experience – be prepared for BOTH sides. If it does turn in to something, I will be so thankful they found it NOW, rather than a surprise at the birth with his already existing heart condition.
My thoughts after today are scrambled. I am being completely honest when I say that I feel like I am holding on by a thread. I went in to this appointment just thinking it would be a normal appointment where we would get some cute pictures and find out when we had to come back. Talk about being punched in the throat – or maybe a living nightmare? If I have learned anything through this experience so far it is to take it day by day. I am not worrying about what it is, because I don’t know what to worry about and we really aren’t sure if there is an issue. I am just frustrated because I wish this wasn’t happening. I still haven’t wrapped my mind around this heart issue and then BAM! The waiting game continues and it is becoming ever more frustrating. I am trying my hardest to trust the Lord and his plan because I KNOW he has a plan. I just wish I could see it and know how it works out in the end.
Thank you all again for your prayers and support – it all means so much to Josh and I through this time of ups and downs. I don’t know what is in store for all of us - but it really is nice to have such a large group of people supporting us and standing by our side. We love you all!
Specific Prayer
Requests
·
Pray
for peace for Josh and I as we wait for more news and a definitive answer on
what may OR may not be going on.
·
Pray
for the doctor’s as they continue to monitor baby M’s heart and now his lungs.
·
Pray
for the fetal MRI, scheduled for February 20th.
One more - I think his hand is by his head saying "Do we have to do this again?! Can't I just sleep?" |
“"The
Lord is close to the brokenhearted and saves those who are crushed in
spirit." Psalm 34:18”
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