Our World Came Crashing Down

On March 22nd, 2013, the day we were scheduled to take Evin home from the hospital, our world came crashing down around us.

I had gotten up to feed Evin around 3:30am and rather than putting her back in her own "crib" I chose to just sit and hold her for awhile.  Amidst all the craziness that comes with having a baby, I wanted to have a few quiet moments with my girl.  Now, I am SO glad that I stayed up and took that time with her.

Evin's nurse came to our room around 5:45am to take her for her morning assessment.  She came back almost an hour later, without Evin, and told us that Evin's coloring was off and she was not breathing like she should.  Her oxygen saturation was in the 80's and it should be at least 95.  Her nurse said they were admitting her to the NICU and were getting her all hooked up to monitors.  She said they would let us know more information as soon as they had it.

Dr. W, my OB, came in around 8:45 and began to tell us what was suspected.  She said that they thought Evin had Tetralogy of Fallot, a congenital heart defect that develops a couple of days after birth.  She said it wasn't confirmed yet, but she wanted to tell us everything she knew so we were prepared.  She said if would probably involve a trip to Cook Children's in Fort Worth and would most likely mean surgery.  We were devastated.

Right as Dr. W was leaving, a nurse called and said that we could come to the NICU to see Evin.  We rushed down the hall to see her and this is what we found- our sweet newborn baby, who was in our arms just a couple of hours earlier, all hooked up to to machines.

We stayed with Evin in the NICU while she had an echocardiogram, a sonogram of the heart, performed.  At this point, they confirmed that she had Tetralogy of Fallot (later we would find out she did not have all of the abnormalities that go along with this).  The cardiologist at the hospital said that Evin would be transported to Cook Children's immediately and that the cardiologist there would assess Evin and decide if she would need surgery immediately or if she could wait a couple of months to have surgery.

We waited for Teddy Bear Transport, Cook Children's Transport Team, to arrive.  I was able to get discharged from the hospital so we could follow Evin's ambulance to Cook's.

Evin rode in the little blue box that they are loading into the back.  We said a very tearful "see ya soon" before they loaded her up.  She looked incredibly tiny and so very fragile.

The rest of the day was absolute craziness and a complete blur.  We talked to many doctors, nurses and hospital staff when we arrived at Cook's, and I immediately started documenting everything I could in a notebook.  I knew that I wasn't in a frame of mind that I would remember much, so I am thankful that I wrote everything (or as much as I could) down.  

This is what we walked into when we got to Cook's:

So many tubes, wires, monitors and medicines- all for a 6 pound baby girl.

Already a little swollen from the medicine.

Evin had another echocardiogram when we got to Cook's, so they could get a better idea of what they were working with.  We spoke with a neonatologist and a cardiologist and in summary this is what they told us:

• Evin has Double Outlet Right Ventricle, a Ventricular Septal Defect, and Severe Pulmonary Stenosis. *We found out later that she also has a small Atrial Septal Defect and Hypoplastic Pulmonary Arteries.*
• The medication that is allowing for Evin's heart to continue pumping blood as it should can actually make her stop breathing.  This is why she must be intubated.
• Evin's team of doctors will look at 2 possibilities to temporarily fix her heart:
• Open the valve through catherization (a balloon that pops the valve open).
• Have surgery to put in a Blalock-Taussig Shunt, which allows for more blood flow to her lungs.
• They probably will not have a team consensus on this until at least Monday.
• The earliest she would have either procedure done would be Tuesday.  This would give her time to get used to life outside the womb.
• Evin will have the major repair to her heart at 3-6 months of age.  They will patch the hole between her ventricles and replace the pulmonary valve at this time.
• She should be able to go home in between surgeries.
• She will have to have maintenance surgeries every 10-15 years of her life.
• She should live a normal day-to-day life and should probably be able to play sports with monitoring.
• 1 out of every 100 babies have a Congenital Heart Defect.
• There is nothing I/we could have done differently to change this.  It is a random occurrence most of the time and I had an extremely healthy pregnancy.
• Of babies with Evin's defect, only about 20% of them are caught in a sonogram.

Even though this day was a complete nightmare, there are many things that I am thankful for.

-I am beyond thankful that we were not released from the hospital and sent home that day.
-I am beyond thankful for the nurse who noticed that Evin's coloring was "off" and investigated further.
-I am beyond thankful for the Teddy Bear Transport Team from Cook's who where very reassuring and made sure that we could see Evin before she was taken to Cook Children's.
-I am beyond thankful that Cook Children's NICU has private rooms and Mitch and I were both allowed to stay with Evin.
-I am beyond thankful for our supportive families that were there with us for this terrible day.
-I am beyond thankful for my incredible husband who tried his hardest to make this day easier on me.  We were both mentally drained and I was physically exhausted from giving birth less than 48 hours prior.
-I am beyond thankful that God gave us a little fighter in Evin.