Our Miracle Man!

On May 23, 2016 Dylan Jeffrey Keithley was born!  Our miracle man has arrived!  It has taken me 8 weeks to write this blog post because I have been in baby bliss!!  Things have gone better than we ever hoped or imagined.  He is a really, really good baby and we love being a family of five.

dylan birth

I started this blog to keep family and friends updated and I wanted to share our journey.  There is very little information out there about being diagnosed with a cystic hygroma in the third trimester.  I hope this blog finds another family who may be going through the same and gives them HOPE!  Being diagnosed with a cystic hygroma does not always mean there is a chromosome abnormality.  We were told an 85% chance of trisomy 18, 13 or 21.  That was wrong!  We were told there was a chance Dylan would not breathe or eat or his own.  Dylan defied those odds and is thriving!  Have faith, have hope!!!

The morning of Dylan’s birth was a whirlwind!  Up until the moment he was born it did not go as planned!  It was a very difficult morning but the moment he took his first breath everything turned around.  When we first arrived at the hospital we were told we on the schedule for the next day which was of course was wrong, then they were running hours behind schedule.  The anesthesiologist was not on the same page as the other doctors, the resident administering my epidural missed twice, there was a few minutes were they could not find Dylan’s heartbeat. Everything leading up to his birth was very, very stressful and difficult!

I finally made it into the operating room and it felt like I was in there forever!  In reality I think it was probably about 20 minutes before I could feel a lot of tugging and pulling then I heard a gurgle and I knew he was out.  A few seconds later I heard him cry.  The most glorious, beautiful, wonderful cry! The doctor held him up for about one second but I could see he was ok!  The rest of the morning went by quick.  I was taken into recovery and was a little out of it.  Jacob came in and was able to show me pictures and video of Dylan.  He was doing really, really well!!  The lymphatic malformation was much smaller than we had anticipated – you can hardly even see it.  He was breathing well on his own and was being monitored in NICU.

Our family was able to go in and see him one at a time.  I was taken to my room to rest and doing well since I knew Dylan was ok.  Around 5pm the nurse and Jacob came in to tell me that they were taking Dylan down for an MRI and asked me if I wanted to go see him first.  Of course I did!  Then the nurse said I had to get out of bed and get into a wheel chair to go see him.  Umm, I just had my c-section 6 hours earlier and you want me to get out of bed?!  I knew I would have to do it.  It was a struggle but I was able to do it and meet my boy!  And that moment was amazing.  Holding my sweet boy in my arms was just the best!  I got to hold him and cuddle him for about an hour before they took him for his MRI.  He was gone for a few hours and then we went back to NICU and got to be with him.  The doctors had to review the MRI and would get back to us with the results soon.

The preliminary results were good and surgery was not immediately needed.  The nurses were able to give Dylan a bottle and he was doing great.  After 2 days in NICU Dylan was released and we got to have him in our room while I recovered.  The ENT team came and spoke to us and said that the lymphatic malformation was not effecting his eating or breathing and he could go home with us.  This was amazing, amazing news!!!  Everything was turning out better than we ever could have imagined!

After 4 days in the hospital we were able to go home.  Dylan is very much a ‘normal’ newborn.  I look at him and I am just in awe.  I think of everything the doctors told us and I know our son is miracle -the ultrasound tech telling me something was wrong, the doctor giving us an 85% chance of a chromosome abnormality, all the tests, MRI’s.  And Dylan is just perfect!!  He does have the lymphatic malformation but you can hardly even notice it.  It is a small bump below his right ear.  We will see the ENT specialist next week and go from there.

Everything has gone so much than we ever expected!!  Our boy is amazing and we are enjoying every second. THANK YOU FOR ALL THE PRAYERS & SUPPORT!

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What I want you to know about Dylan

Our sweet boy will be here soon!  We are so very excited to meet him!  There are still a lot of unknowns and we are anxious.  But NO MATTER what the outcome is our boy is loved – loved fiercely!!

blue heart

There is still a chance of a chromosome abnormality.  The lymphatic malformation and umbilical vein varix are both signs of an abnormality.  Chromosome abnormality or not – Dylan is meant to be our son!!  God has a plan and Dylan has been perfectly formed for our family.

He will look different than ‘normal’ newborns.  The mass on his neck last measured at 7cm.  The doctor described it as going from his ear to his chin and from his jaw to his shoulder.  How Dylan looks is not our concern.  He is beautiful no matter what!  Our hope is he can breathe and eat on his own at this point and then we will go from there.

We will share updates and pictures of Dylan when we are ready.  The mass on his neck may be large or maybe it has shrunk in recent week and will barely be noticeable.  We will not know anything until he is born.  These are some pictures of what he may look like.  These are google images of children with lymphatic malformations.

Dylan is already so loved and we are very grateful to everyone who has been praying and reached out!  Please continue to keep him in your prayers.  We are scheduled to deliver via c-section next Monday morning.  We cannot wait to meet our sweet son!

May 23rd!

May 23rd is THE DAY!  The plan is for a scheduled c-section at 7:30am on May 23rd – Dylan’s birthday!!  It is meant to be – May is Lymphatic Malformation awareness month.  I need to have my c-section in the main operating room so all staff and equipment is available.  Dylan will have two NICU doctors assigned to him and an Ear, Nose, Throat Specialist available to perform a tracheotomy if need be.  We are VERY happy to have all ‘hands on deck’ for Dylan’s arrival.  The bad news is Jacob is not allowed to be in the operating room – I will be alone.  Of course this makes me sad and nervous.  I wanted Jacob there to support me, hold my hand, be my ‘eyes’ and tell me how Dylan is doing.  And most of all be there for the birth of his son.  But we know this is what’s best and what needs to be done.

lymphatic malformation

I also had my NICU consultation. This was more difficult than I expected.  The specialist I met with had reviewed Dylan’s MRI and said the mass was from his jaw to his shoulder and from his ear to his chin.  Hearing her say it was affecting his jaw was devastating.  If this is correct it would mean we have a very long road ahead of us. When lymphatic malformations are connected to the face they are very difficult to treat.  We could be looking at years of multiple surgeries.  But this is just one doctors opinion – and hopefully it is not correct.

The NICU tour was very informative and I know he will be in great hands.  Hopefully the girls and our parents will be able to meet him soon after he is born.  I will be in recovery and there is really no way to say when I will be able to see him – it could be a full day.  Of course all this makes me sad, but it is really the least of our worries.  I had another ultrasound last week and it went well.  The technician said at this point it is really difficult to see things in detail because he is so ‘squished’ in there.  He is measuring big – 7 lbs, 8oz according to their calculations and that was with 3.5 week to go!  From what the technician could see the mass was still about 7 cm – which is good news.

Now we are just waiting, praying and getting ready for our little man.  The girls are SO very excited!  I had a beautiful baby shower and we received so many wonderful things.  Dylan is so loved already and we are very grateful!  Lots of nesting, organizing and preparing!  We are so excited to meet our Dylan Jeffrey Keithley!

family 2

 

 

MRI Update

We were finally able to get our MRI scheduled and received the results this week.  It was mostly good news and we are hopeful!  The MRI showed he is continuing to grow and develop normally.  The doctors are ‘pretty sure’  he will be able to breathe on his own.  There is one part of the airway they cannot see and I will have another MRI at 38 weeks.  Looking at the MRI pictures was really amazing – you can see everything!!  This image below is from google but very similar to the pictures of Dylan we got to see.

mri

The doctors said he lungs are growing perfect so this is a good sign.  He is ‘breathing’ amniotic fluid so they are pretty confident he will be able to breath on his own at birth.  But we will do another MRI to try and see the one area of the airway they were unable to look at.  The mass on his neck is growing as he grows.  We knew this would probably be the case, but still not great to hear.  The doctor described it as starting at the middle of his chin and going back towards his ear on the front right side of his neck.  We have another ultrasound in 2 weeks to measure it.

When you google images for cystic hygroma and lymphatic malformation it can be a lot to take in.  The doctors cannot say for sure how exactly the mass is connected and give us a complete diagnosis until he is born.  Our biggest concerns are him being able to breathe and eat on his own.  We have upcoming consultations with the pediatric surgeons, NICU department and  Ear, Nose Throat specialist.  The doctor suggested a procedure called scherlotherapy.  They do not perform this at Loma Linda and we most likely will be referred to Children’s Hospital Los Angeles.  CHLA actually has a webpage about lymphatic malformations and scherlotherapy you can see here.

The doctor also told us they saw ‘one more thing’ – ugh!!!!  I have an umbilical vein varix.  She told us ‘this could be something, it is probably nothing but I have to tell you about it.’  She explained it is usually a sign the baby is not growing properly or a chromosome abnormality.  Dylan is growing properly and the chromosome abnormality test came back negative.  I felt ok about the doctor telling us about this until I got home and googled it – bad idea!!!  I feel like there may be more to it.  But all we can do is wait and pray!

I go back to the doctor in two weeks and they will do another ultrasound to measure the mass.  We will also pick a C-section date – she said sometime May 18th and 25th.  The sooner the better!!!  I am so anxious to meet our little man.  I want to hold him so bad and at the same time I know there is a possibility I may not get to hold him right away.  I wish I knew he was going to be ok, that he will breathe and eat on his own, that he won’t be in nicu for too long and we will get to take him home to his sisters,  I want to know that the surgery or scherlotherapy will be successful and he will live a long, happy and healthy life!!!!

This whole process has made me more grateful for what we have.  I am thankful we have had two healthy pregnancies and our girls are healthy and happy.  I will never take that for granted!  Hopefully Dylan is just showing us what a fighter he is and we will be able to look back on all this one day and be grateful.  Thank you for your continued prayers and support!

 

Cystic Hygroma, Lymphatic Malformation, Lots of Questions

dylan prayerWe had our first appointment at Loma Linda hospital today.  Almost four hours later we have some answers, some more questions – but mostly good news!  We will not know the full extent of how the mass will affect Dylan until he is born.  Our boy is in good hands and we are hopeful!

The morning started with a very extensive ultrasound.  The tech took us back and started doing measurements right away.  We have had many ultrasounds since his mass was discovered and they are always anxiety filled.  The tech got to work and then another tech joined him.  They started pointing and saying things like, ‘see that, measure that’.  I asked if everything was ok and of course they responded with ‘the doctor will go over everything with you’.  It is so hard to lay there for over an hour while they talk to each other and point to things but won’t tell us what they are seeing.  The tech asked what we knew about the baby’s condition, I responded cystic hygroma on the neck.  He then asked me what else I knew.  My heart dropped and I responded nothing.  I did not know what they were seeing and if something else was wrong!

About 45 minutes into the ultrasound the high risk OB came in and joined us.  He pointed out the mass on Dylan’s neck explained it was 7cm in size.  His opinion was that is not a cystic hygroma, more like a lymphatic malformation or a benign dermoid.  Essentially it is a cluster of cells that ‘went awry’.  I asked if anything else was wrong with Dylan and they said no – everything else is looking good and measuring normal.  This was music to our ears – thank you GOD!!!  Then there was also a neonatal specialist who joined us. She said Dylan’s mass is a lymphatic malformation.  She said she has seen worse cases and she has seen better cases.

The neonatal specialist said the mass is large but does look treatable.  Both the OB and specialist also said it looks like he will be able to breathe on his own – more great news!  The specialist at Pomona Valley wasn’t sure he would be able to and brought up the fact that I might need a special c-section called an EXIT procedure where Dylan would be given a tracheotomy in order to breathe.  The OB at Loma Linda  said this could be a possibility but in his opinion ‘this baby will come out kicking and screaming’ – more good news.

A MRI is in the works and hopefully will happen soon.  I will meet with the doctor every 2 weeks and do ultrasounds to measure the mass and then twice a week for the last month.  Tentative c-section date of May 20th.  The specialist said Dylan will for sure be in NICU for a while. And depending on how is mass is connected he will have surgery at Loma Linda or Children’s Hospital Los Angeles.

We feel like we are in very good hands at Loma Linda!  The doctor must have asked us six times if we had anymore questions.  They took their time with us and we did not feel rushed.  We have 9 more weeks until our little man arrives.  This little guy is SPECIAL!  He is going to be our miracle man 🙂  Thank you for all the love, support and prayers!

No chromosome abnormality!

dylanWe received wonderful news today – THERE IS NO CHROMOSOME ABNORMALITY!  Thanking God for this wonderful news and we are thrilled!  I have called the hospital several times over the last few days and today we finally got the results!  It is a huge sigh of relief.  Some chromosome abnormalities are fatal and wondering if Dylan would be okay was so incredibly difficult.  This is a huge hurdle he has overcome – he beat the odds!

We were referred to a high risk OB at Loma Linda hospital where I will deliver.  Dylan will receive better care there versus San Antonio Hospital so this is great news.  We will continue to monitor the cyst and how it grows.  He will still need surgery after birth but we are hopeful he will live a happy and healthy life!  The past two weeks have been such an emotional roller coaster and we have prayed and prayed and prayed!  This has made us appreciate everything so much more – our children are truly miracles!  We still have a long journey ahead of us but we are optimistic and hopeful!  Thank you SO much for the love, support and prayers!

There is something wrong…

For the past 6 months we have had a normal pregnancy and eagerly anticipated the arrival of our son Dylan Keithley.  With about 14 weeks left in the pregnancy we decided to do a 4D ultrasound for fun.  We thought it would be great for the girls to see their baby brother and we wanted to get some cute pictures of him.  Dylan didn’t cooperate very well and we made another appointment to come back.  I had been home about half an hour when I got the phone call.  The owner of the 4D ultrasound studio said she had spoken to her tech and seen some of our ultrasounds photos,  ‘There is something wrong with your scan, you need to see your doctor.’

My heart immediately began to race and I became very upset – ‘there is something wrong.’    This is the worst thing a pregnant woman can hear.  She would not give me any information as to what it was they saw.  I literally begged, pleaded and cried but she could not release any information because of liability reasons.  She said, ‘Your doctor will see it’.  I knew this was bad, very bad.  I immediately called my husband Jacob and told him the news.  He was almost to San Diego for work and decided to turn around and come back.  I called my mom in a panic and asked her to come watch the girls so I could go to the hospital.  She immediately said she would be over right away.  I was too anxious to wait the 45 minutes it would take her to drive over so I called my dear friend Erica and asked her to watch the girls until my mom got there – she instantly said bring the girls over.  I tried to drive as carefully as possible as tears rolled down my face.  All I could think was, ‘There is something wrong’.

I arrived at the hospital and was immediately admitted to labor and delivery.  They hooked me up to monitors and we could hear his heartbeat.  My nurse was wonderfully patient and compassionate as I couldn’t control my tears.  After about an hour and a half the ultrasound tech finally came in.  I explained what I had been told and she got to work on my belly.  It was about 30 seconds in when she stopped and said ‘I need to bring in my college in.’  This was not good.  Her college came in and I could immediately tell they were looking at something in particular.  At this point Jacob had made it to the hospital but they would not let him in while the tech was doing the scan.  I could not control my tears and I begged the ultrasound tech to tell me what she saw.  She said she would give the report to the doctor and the doctor would go over it with me.  The waiting was absolute complete hell!  I just wanted to know what was wrong with our baby boy!  Jacob was finally able to join me and we anxiously waited to doctor to arrive.

We sat together and cried, hugged and prayed.  It was over an hour before the doctor came in.  When she finally came in it was obviously not good news.  She explained that our baby had a mass on his neck measuring approximately 4 centimeters and they believed it was a cystic hydroma.  I asked her what that meant and if he could have surgery after he was born.  She explained he probably could have surgery after birth but that was not the main concern.  The bigger concern was that this birth defect was most often associated with Down Syndrome or another chromosome abnormality and our son had an 85% of this occurring.  This was devastating and much of what she said after that was a blur.  We would be referred to Pomona Valley Hospital where they would do more extensive testing.

We left hospital with heavy hearts, sat down outside and just cried together.  We had an uneventful pregnancy and expected to have a healthy baby boy.  Hearing this probably wouldn’t happen was just so overwhelming.  That night was awful. Jacob had to get to work and left early the next morning for San Diego.  And the next day was just a waiting game.  We waited for my doctor to call  with our appointment time at Pomona Valley.  All day Tuesday I researched cystic hydroma and different chromosome abnormalities – none of this helped.  I got the call we would be seen at Pomona Valley at 9:15 the next morning which was a relief.  I spoke with another doctor at my practice and she explained a little  more to me.  I asked why this wasn’t found at my 20 week anatomy scan?  Why wasn’t this found earlier!!!!  She said she had personally reviewed my 20 week ultrasound and said the cyst was not present at 20 weeks.  This made it all the more confusing – how did things change in 6 weeks?!

I just wanted to get to the specialist and find out more. My poor husband has a huge job in San Diego that he has to finish and is 2 hours away. This is incredibly hard on both of us. I know it breaks his heart he is not here and it is stressing him out. My amazing mom had been with me all week and I would not be able to get through this without her! On Wednesday morning my mom drove me to the hospital and we saw a genetic specialist first. The doctor was so kind and patient. She took her time with us and explained as much she could. We would know more after the ultrasound. The ultrasound tech took us back and the specialist came in. The doctor looked at Dylan and explained to us that everything else on our baby boy looked normal. This was great news! All signs point to NO down syndrome or chromosome abnormality but we won’t know for sure until next week. The cyst is large and measuring around 5 centimeters. She explained there are multiple cyst in one large mass on the front right side of his neck. The doctor brought in another specialist who took a look and thought it might not be a cystic hygroma because of where the cyst is on his neck. There is a possibility it is branchial cyst and a small chance it is a tumor. Both doctors agreed we will not know more until he is born. We will do what we can to learn everything about his condition but nothing will be for known for sure until he is born. I have a echo cardio test next week, we are trying to get a MRI ordered and another ultrasound to measure the cyst in 3 weeks. We are trying to stay positive and hope for the best! God has a plan and we need to have faith!

Gwen and Ellie know that baby Dylan has a bump on his neck and he will need some extra care. Mommy will have lots of doctor appointments but everything will be ok. Gwen understands but Ellie is still too little. My mom has been my rock this week! She has been there for me as a shoulder to cry on, babysat the girls, cooked, cleaned and more! My amazing Dad came back from a huge work meeting to be with us and both my brothers have been over and called and texted with support. My close friends and FIT4MOM family have banded together and done so much for me already! We are surrounded by an amazing support system that we are SO very thankful for!

I decided to start a blog because it felt therapeutic for me to get it all out in writing and the best way to keep everyone updated. I also hope I can help another mom who is given this diagnosis. There is practically nothing out there on being diagnosed with a cystic hydroma in the second or third trimester! I hope and pray our story has a happy ending and we can give hope to anyone who has to go through this!

PLEASE PRAY FOR DYLAN!!! Please pray for God to give us strength and get us through this! Pray that our little boy is going to be ok! Thank you!