She Survived, and So Did I.........

I remember laying on the patient chair/bed at the fetal care center having an ultrasound while having a fun conversation with Dr. Magee, explaining to him why my doctor sent me over to see him. He said "it's a cyst?" I said "yes, they say a cyst near the baby's abdomen." He responded, "I can't see a cyst." And we talked some more he paused, "the heart is near the middle of the chest." He kept moving the ultrasound wand over more, I then just see this black mass, it looked liked it was rolled into a wheel. He stopped turns to me and says ," Im sorry Megan this isn't good." All the fun stopped, I was in shock. My mom was with me as Paul was in a conference that day. He told me what the baby had "It's a Diaphragmatic hernia." I responded.....a what?" He told me what is was. I could only take bits and pieces of what he was saying....bowels in the chest......leaving the lung.....UNDEVELOPED." He then took us over to see the fetal cardiologist. I remember walking in and crying to Dr. Eapen, "IS MY BABY GOING TO DIE." She calmly responded "NO!"She then did the ultrasound and could see some blood flowing into the left lung that was underdeveloped which was a positive sign......thus started this CDH Journey.

We were so prepared about everything that Matilda was about to experience, but no one prepared us for the emotional hangover we were going to have.Grief, Guilt, Trauma, is very real.
I will never forgot that day in Dr. Magee's office, the way I found out, one minute on top of the world, the next complete bottom. Telling you your child may not make it - that shock stays with you.....the emotional tsunami you endure. And then when she came out of the hospital was the best day.......but the flashbacks of those moments when it was so dark. Feeling guilty because how did we get to be so lucky.....why had others had to suffer a loss.
When we saw the surgeon for a f/u and he told us about a baby he did surgery on recently. Once they did the surgery pulled everything back together, there wasn't enough lung for that baby to survive. Again how did we get so lucky....how is that family coping?
 I can remember going back to work after my maternity leave was up. I can remember just blanking for the day - reliving this blog, looking at the CDH fb page - "please pray for this baby -they lost their battle with CDH today."
I would get so sad for the family and again the guilt - the grief.

Fast forward to a year in a half later - The NICU that we were in, I work at the same hospital. I had previously said if another family come through to please tell me, I would love to help them.
I ran into the NICU director who I actually never run into, so the stars aligned. "Did you get my message?" I have a family that will be delivering in two months and I was wondering if you wouldn't mind helping. I said absolutely!! The mom got in contact with me. We arranged to meet.  I just wanted to hug her as she had it written all over her face, fear of the unknown. We kept in touch through text and met a couple of more times.
The mom delivered and the baby was doing great - had surgery three days later. The mom got in touch with me and asked me to come and meet this little superhero. I was so touched, I got to meet this little miracle that months earlier you couldn't really joyfully talk about. The mom was doing very well too, which made me so happy.  I felt rewarded for helping someone go through this rollercoaster. another week later and this little miracle GOT TO GO HOME. I was so excited for this family. Only had to be away from their little angel 2 1/2 weeks. And what a little fighter, surpassing so many odds. the day came when they were going home. They invited me up, I was really excited to congratulate this miracle. The mom said come up we are in D.........I thought wait D is where Matilda was when she was first born. I got up there and it was such an amazing feeling. Going back to the place where our CDH journey began....and where this babies journey is ending. I spoke with the family so excited and reliving the months before and how far they had come. I congratulated this little champ....gave them hugs and walked out. As I walked out......I had this great sense of gratitude and happiness for this family...."they did it" they survived".........wait I survived. It was the first time I felt healed from my whole CDH journey. As I walked down that hallway on the way out like the many times before......I felt for the first time, I walked out a survivor. I am now able to help other people get through one of the hardest times in their lives. And that is a calling for me.
Funny enough I had an interview with a nationwide NICU program the same day. Where I will be mentoring other parents. The interviewer asked about what grief and anger is to me.....about having your pregnancy experience taken from you. "I said well you can be angry that you didn't have that baby next to you after she was born. Be angry that she didn't come home with you. Or angry that you had to go to the NICU every day for six weeks to see her.  Or you can be happy that that little girl is sitting in front of you, Feel lucky that you can brush her hair. Not feel angry that she is a little spit fire because she defied the odds to be with you. Because in the end we all survived.

The day the bells rang out

2/26/16
Looking back on this day. I was absolutely panicked about what was going to happen in the next 3 hrs. As I waited for my nurse to take me down to surgery. Dr. Haddock came by to talk and give reassurance. I remember thinking "oh she is wearing purple scrubs"! That made me feel better as we had asked everyone to wear pink and purple and she happened to walk in with them. You know I like my signs!
She then came in with our anesthesiologist who was so sweet. I couldn't have asked for a better team to get us through this. I remember I hopped on the operating table hunched over with my feet on paul and getting the epidural. The anesthesiologist asked what pandora station to which i responded "British" then feeling a prick in my spine I said COLDPLAY.....
I then laid down and could definitely not feel my legs anymore to which I then felt like I was wearing pants. Since I was unclothed from the bottom up I knew this wasn't possible. I  made sure to tell everyone in the room that I better not walk anywhere because I feel like I have pants on and I really don't. That was definitely the epidural talking.....I think anyway. I always think back to that delivery as such a happy time. I was so scared but as mentioned the team in there made me feel so comforted. I am so thankful for that moment.
As mentioned in post before Matilda then screamed and they took her away! I have been fortunate enough to keep in contact with the NICU nurses that actually intubated her. Who always tell the story of how Matilda all gave them crazy looks as to why they  intubated her. She seemed pretty sure of herself and from the previous post we were lucky enough to bring her home after six weeks. On this day I count my blessings and am so thankful she decided to stay with us! Happy Birthday Matilda May! You have accomplished so much already! We love you so much!

A year since......

As I walk in to this little sweet 11 months old room, her hair standing up with cradle cap medicine. She is crying reaching up to me to pick her up.
I can hardly believe that a year ago today we found out that our baby might not make it. And here we are with this little nosy, funny, adorable little girl. That absolutely blows us away every day. She is so determined to do anything. She has been doing well since our last post. She has been off her reflux medicine for the last 3 months. Has been doing physical therapy and will soon be walking. Has only had a double ear infection since her stay in the NICU. And absolutely loves to get into whatever her brother is playing with. We are so proud and overwhelmed with happiness at what our little stunner has achieved. This day a year ago our whole world shattered. We had to find strength where we could barely see any hope. It was definitely life changing. I look at the world in a different light. And I am thankful everyday that we can hug her. I can remember in those days leading to Matilda's delivery, wishing I could get a glimpse of what the future could bring! I would had never believed it would be like this! We appreciate everyone checking in on us and thinking of Matilda. It means so much!
In honor of Matilda's first year we are raising money for:

CHERUBS - THE ASSOCIATION OF CONGENITAL DIAPHRAGMATIC HERNIA RESEARCH, AWARENESS AND SUPPORT

.If you would like to donate in honor of Matilda please click on the link below.

http://www.firstgiving.com/fundraiser/megan-crowe-1/MatildaMay

Thanks again!

MARATHON

Looking back at the days when Matildas fate was still uncertain. It was absolutely excruciating leading up to her delivery. I was paralyzed with Fear. We had to go see the fetal care specialist once a week. I remember the week leading up to Matildas birth. It was snowing and ice storms......not to be confused with actual ice storms......these were Texas ice storms which meant a little bit of ice and a lot of panic! As the fetal care specilaist assessed Matilda with the test they had. It was always well she wont run a marathon but she will be ok. The day before I had Matilda I saw Dr. Youst. She did a test to see what Matilda's breathing was like in utero since technically they don't have to breath. She put this vibration on my belly and she said now this is going to also test to see if Matilda will sleep in when her alarm goes off or hit the ground running. She then turned on the vibration and Matilda woke up right away and you could see her chest breath in and out. It was such a beautiful sight to see that in case Matilda never did get to breath on her own on the outside I would at least get to see this glimpse on the inside. It was beautiful! And Dr. Youst said this is so good!!! She is going to be fine and you tell me in 10 years if she sleeps in or not. I left the office relieved but still petrified with fear.
And then she was born....in the NICU for six weeks and still heard the same "She won't run a Marathon but she is going to go home". So in my head I thought ok we will put her in music classes, art, anything where she isn't running. Then I would get sad as I knew she would want to run after Freddie, play team sports, I was relieved she couldn't run after boys! I knew I would have to tell her it is unfair that she has to be still, but how grateful she should be that we are even able to have this conversation.
On Monday we had a follow-up appt with the pulmonologist. This was to decide if he wanted to see her once a year. She never actually saw a pulmonologist while in the NICU so I was curious as to what Dr. Copenhaver had to say.
Matilda was cheesing it big time smiling and talking to all the staff at the office.  Dr. Copenhaver went over her history with me which he was very happy with her progress. Then came the big part where he listened to her. I actually couldn't breath as I was so nervous, he was going to have something bad to say. He looked at the med student that was with him and said sounds absolutely normal. I said "SHE DOES?!" He looked at me and said if she wants to run a Marathon one day she can! I got a little tear in my eye but held it together because I don't ugly cry in front of strangers and I don't think Dr. Copenhaver knew what the word MARATHON meant to me. He then said ok I don't want to see her unless you need to see me! Which again I held it together.
 I know we don't know what the future holds for Matilda as she is at risk for different things. But I am so grateful that we need to call them, and that she doesn't have to be followed up. Matilda is still such a happy baby. She only ever crys if she is hungry......but don't we all! It's as if she knows how lucky she is.......and for that she is so grateful. She is my role model. I strive to be as brave as she has been. The Irony is Matilda is already running her marathon and we just need to keep up with her.

love to you all!

Waltzing Matilda

Listening to the song Waltzing Matilda sung by Rod Stewart, Matilda crinkles her nose and smiles as I sing the words along. My mother in law played it for paul and I before Matilda was born. My mother in law smiled and said," isn't it lovely!" To which we both responded yes. But was actually hard at the time as I didn't know what occasion this would be played at. So being able to sing it to a vibrant happy baby means so much. I just can't believe she is three months old today. Which means she has been home just as long as she had been in the hospital. And what an interesting six weeks it has been.
Matilda and I have been enjoying getting to know each other and as I always say to her BFF. We have filled our time having lunch dates with friends and NICU nurses. We also have had follow up appointments. Her pediatrician was so pleased when she saw her. As she got the news about her condition and knows that they don't always turn out so lucky. We were actually dealing with Matilda's weight gain when we came home. I blame pier pressure in the NICU. Matilda was bigger than alot of the babies in there, so its only natural she might feel a bit self conscious about her weight ; )
Anyway we had to go to the doctor for a weight check from the Friday till the wednesday and luckily Matilda had gained weight so we were in the clear. We also went and saw Dr. Roden for matilda's surgery follow up. He was very pleased with her and mentioned to us that he had done alot of hernia repairs. One recently he did unfortunately the poor baby hardly had any lung, and did not survive. Hearing stories like this just reminds us how lucky we are and how different this all could have been. I recently joined an organization called cherubs which sponsors research for congenital diphragmatic hernia children. They actually have state representatives, Our rep in Texas lives in Dallas. Her daughter was born with it and is 23 now . She has been very supportive as I still get a bit anxious about everything. We went in for Matilda's 2 month check up and her weight was down again so I nursed her every hour with her regular 3 hr bottles. When we weighed in again she was back on track and when I had another weigh in just to check 3 weeks later she was exactly where she needs to be. So that made us very happy. As I always have the fear that she would be in the failure to thrive category and would need a feeding tube.
Other than that Matilda is a very happy little girl. Her face lights up when you talk to her. Its as if she knows how special she is and what a gift she has been given. Her little brother loves her so much. He calls her Da........which sounds like DuuuuH! So not the cute nickname I thought but actually its perfect for them. He tries to help in any way he can!
That's it from us! till next time

Siblings

Some our favorite Nurses

FIGHT - SURVIVE - SURVIVOR

On Friday April 2nd we were so hopeful that Matilda would come home at the weekend as Dr. Frankfurt said earlier in the week that if she keeps up with the feeds she could come home. Well unfortunately she hadn't gained any weight in the last two days so she definitely wasn't going to come home then. I told my boss that I was starting maternity leave on the Monday (I went back to work 2 weeks after Matilda was born so I could have more time with her later on). I knew that I needed to spend more time with her especially being there to breastfeed. So the weekend I spent the majority of it at the NICU. Then on the Monday Dr. Pierce was back on and said that Matilda had gained weight the last two days so if she kept it up tonight then she would be going home Tuesday. Now a little sidenote I always said to myself I will believe she is coming home when she is in my car. So it didn't really hit me that she is so close to coming home. Well I walk in Tuesday morning and I see Dr. Pierce who said isn't that great she is coming HOME today!!!! I exclaimed WHAT!!!! She said oh I thought you knew! I said no I just got here. Now I know I mentioned in a previous post how superstitious I was so you know I didn't have anything ready for my beautiful daughter. So I told them ok I will be back at 4 to pick her up. Came home got everything ready. Went to toys r us to buy her a celebratory mom a roo, since we won't be going to Disney world till she is at least 4!! She lived in a mom a roo in the NICU!
So with my mom in tow as poor Paul had two inspections and couldn't get out of them. we get up there and start packing everything up. Then Lindsey, Matildas primary nurse came in and I just started getting emotional as she had been with Matilda since day one. She was next door waiting with the NICU team at her delivery,took care of her while she was in NICU and was there now to send her home. I was so ecstatic that Matilda was coming home, but was also so sad as remember I mentioned this special place of support and hope well now we are leaving that. It's almost like leaving kindergarten and going to 1st grade. Your excited  but sad to leave the warmth and shelter. So as we were taking pics Dr. Pierce had said to find her before we left to say goodbye. But they thought she had left for the day. So I went to to pick up car and then go to labor and delivery entrance, where I was meeting everyone. I parked got out and saw my mom, lindsey, Lilla (another wonderful nurse) and Dr. Pierce wheeling Matilda out. It was the perfect way to end Matilda's journey there and call her a Victor! Dr. Pierce said look at her looking up at the sky, its the first time she has been outside. I thought oh my gosh this poor girl finally gets to see the sunshine! We said our thank you's and goodbyes and put Matilda in the car! We then went on to pick up Freddie to let him finally meet his sister. Which he loved her and blushed when he saw her. I think the pieces finally fit for him. I hope he always knows how much he helped his mom and dad through this whole ordeal, more than he could ever know.
Looking back and reading through the blogs I am so glad I wrote this, so Matilda can know how special she is and how much we all had to fight to be together.
I have a friend who is an only child but that is only because she lost the other two siblings during their childbirth. I asked her when I found out about all of this how her mother got through it. And she emailed me back and said my mother use to always say you have to go through hard difficulties in life, they make you a stronger person and then you share that strength with others so you can support them. I can remember talking to different doctor's before Matilda was born and I always knew she would make it she was just so feisty as I mentioned before. And when they would tell me something sad or difficult I would always think in my head well you have never met my daughter........Which I have a feeling I will be saying a lot of in the future.
I have to thank everyone for their love and support during this journey! We are indebted to you all!
And to our gorgeous daughter (who is sleeping on me as I write this, actually it's where she has been since April 7th since coming out of the NICU)
Matilda you are so amazing! Your Dad, brother, myself and the rest of the family is so proud of you!

I will keep updating this blog as Matilda' s next journey of getting everything followed-up and checked on and living a normal life starts!!

Dr. Haddock

Dr. Frankfurt

Dr. Pierce

Ms. Christy - Matilda's OT

Ms. Lindsey

From left. Me, Lilla, Dr. Pierce, Lindsey

Saying Goodbye for now

Big Brother

Victor!!!!

To the Parent

When we found about Matilda and her condition. I went home and looked at every thing there was on the Internet about CDH! This included tons of blogs which you never should do. Every time we would have an appointment with a doctor in the weeks leading up to Matilda's delivery I would go home and Google. Which I would then limit myself to just positive blogs but would slowly go back to the more fatal blogs. I would compare information that we had about Matilda to what they had on their blog as if that would predict an outcome. As the docs could never say it will be ok! Which I never could understan d. I once read that no CDH baby is the same they are like snowflakes each one of their own design. Now looking back I know that is the only thing that I should have listened to. And that is why doctors could never say everything would be ok. Because this congenital anomaly is unpredictable. Matilda always knew the ending.
So now that we have hit the high hills of this roller coaster I can calmly say to the expectant CDH parent that our children have there own agenda. I believe that medicine can only take them so far. The other day we were thanking one of Matilda's neonatologist for all he had done and he said "hey she did all the hard work!" Which is absolutely true these amazing doctors and nurses can set them up for success. When I was pregnant with Matilda she seemed so feisty and I knew when she was handed this "sentence" that she would kick some butt and take names!!  I just want to say there are no comparisons, statistics, blogs that can seal fate.