I have several dates that that have changed my world. My birthday, Sept 2, 2005 – my wedding day, 2 days in 2007 that I had miscarriages, July 28, 2008 – the day my first born arrived, October 21, 2010 – the day my daughter was born, December 7, 2012 – the day my youngest was born. But none of these changed my world like October 23, 2010 – the day my daugher died.
Pregnancy sucks. It took us 2 years to get pregnant after we got married. We got married when we were both 27 and wanted to start a family quickly so we could knock out the kids. At 29, we finally got pregnant but had 2 miscarriages back to back. When I turned 30, we had our first born. The pregnancy was awful. Spent 10 days in the hospital and then 4 more weeks on bedrest. Regardless, we had a beautiful baby son.
When we got pregnant with our daughter in 2010, we were ecstatic. With my son’s pregnancy, we had learned that I had MTHFR and knew how to treat my body to keep the pregnancy and not have the same problems. I had regular ultrasounds and the baby was watched closely for any disress. On October 21st, I went in to have a routine utrasound. I was 37 weeks pregnant to the day. Baby was showing some distress and my blood pressure was high. With that combination, OB adviced me to head to the hospital and he would meet us there after his last patient.
We called my mom and she and dad came into town for the delivery. Hubby and I headed on over to the hospital and got prepped for delivery. Mom, dad, hubby and I were all in the room waiting for me to head back to the delivery room for my c-section. The nurses came to get me and hubby followed, but had to wait in the hallway just outside the delivery room until the OB gave him the all clear. This is where it gets scary. While on the table, I witnessed my OB and the anesthesiologist looking back and forth at each other with concern. Unbeknownst to me until later, my BP had sky rocketed and they were watching me to make sure I stayed with them. Hubby came in and OB deliveried my baby girl. My first words were “what is wrong with her?” Her cry was raspy and weak. My husband took her from the nurse, I got to see her, and have my picture taken with her and then she was gone. She went immediately to NICU.
Holes in the lungs do not show in ultrasounds. My daughter had underdeveloped lungs and could not breath. It was not until day 2 that I was able to go down to see my daughter. She was in a glass box with tubes everywhere. Hubby had not left her side. After spending time with her, I went back to my room so they could run some tests on her. On day 3, we were told there is nothing more than can do and they were sending her to a Level 4 NICU. I went down to say goodbye as they took her away. Hubby followed in his car and actually beat them to the hospital. I had yet to be discharged from the delivery hospital. My nurses worked their tails off to get me released early with the promise that I would stay in my wheelchair.
My mom drove me to the other hospital. Let me stop here. When daughter left hospital 1, it was with the understanding that she was going to be evaluated to see if ECMO (a heart and lung bypass machine) would be necessary. So, on our way to hospital 2, we stopped by Taco Bell to grab lunch for us and hubby. While in the drive thru, hubby called and said to get to the hospital fast, but he would not tell me why. We left the drive thru and sped to hospital 2 – which was just on the other side of town.
When we arrived, hubby informed me that our daughter had died in the transport and they were trying to revive her and to get her on ECMO. When he gotten to the NICU, he was stopped by the Neonatolgist who proceeded to tell him what was happening in the ambulance. She had paperwork with her and told hubby that he had a choice to make. Either let baby die, or attempt to put her on ECMO which could save her. Of course, he signed.
As I sat there in my wheelchair, it took every ounce of strength to not run to my baby and hold her tight. As I glanced down the hallway, there were drs and nurses crowded in a tiny room with the accordian doors open to allow for more space. Hubby said that is our daughter’s room.
A nurse led us to a waiting area where we sat for 2 hours. Putting her on ECMO should have only taken 30 minutes. We knew something was wrong. When the Neonatologist came to discuss with us the outcome of the ECMO, she started by saying it was successful. She then went on to say that after our daughter coded a handful of times in the ambulance, she continued to code during the procedure to insert the ECMO tube into her coratid artery. Hence, taking the 2 hours vs 30 minutes. Everytime she coded, they would revive her and start the process again.
They medically paralyzed her so she could not move over the next few days while she was on ECMO. The purpose of ECMO is for the machine to work as her heart and lungs to give them time to heal. Once healed, the goal is to have them working on their own.
Now, the next several days are a complete fog. What I am going to share with you is the version hubby tells. I had requested to be medicated. Feel free to judge me, but having a baby, not being able to hold her, and then being told she had died and probably would not continue to survive, equals one hormonal, sad and angry momma. To make logical decisions, I needed something to help me relax. Which it did, but I just don’t remember a lot. I have been told its probably more PTSD then medication, but I really don’t care enough on the reasoning to argue.
Either my hubby or myself stayed with daughter and only left her side to sleep. Our dear son went to stay with my dad for a few days so we could focus on our daughter and he could still be given attention. We had a lot of conversations over the next several days with medical professionals. She ended up being put in hypothermia. We learned that when a dead brain cell touches another cell, it dies. Putting her in hypothermia would freeze those cells so the death would cease.
About 5 days in, daughter started turning black from her toes and fingers up to her knees and elbows. There were some mixed signals going on and her body thought it was dead. It is called DIC, which is essentially blood clots. I don’t know what the acronym stands for, but it is referred to as Death Is Coming by several medical professionals. We also had discovered a grade 4 brain bleed, which alone is enough to kill someone. Because of the brain bleed, she needed to be off the ECMO because the blood thinners required for the ECMO would cause the brain bleed to increase. We weaned her quickly from the ECMO, thankfully her lungs had healed, and the bleeding stopped, but the DIT was still a problem. We had doctors come in and prepped us that her limbs were dying and they would have to amputate. We asked the drs what her odds were of survival. They said that they have no knowledge of anyone living through what she is going through.
We prayed. Our friend started a page on Facebook and we had people in at least 4 countries praying for us and our little girl. The drs encouraged us to say good bye to our daughter as they did not believe her to make it through that night.
We receieved a miracle. The next morning, the blood clots were healing and her black limbs had gotten some color. However, she had still not moved yet. She had been off the paralysis medicine for a couple of days now and should have been moving. We needed another mirace. We posted our prayer on Facebook. The next morning, her toe had moved. The power of prayer is amazing. She became known as the miracle baby in the NICU.
The next few weeks were long. I was finally able to hold her on week 5. She had 2 brain taps, a VP shunt and several CAT scans and EKGs The day before we left the hospital we were shown results of her tests. She had lost 1/3 of her brain. It is just darkness. A black hole. We left hospital with a “good luck” and the advice to treat her as normal, but she would probably never be more than a vegetable.
That was 6 years ago….
A Bear Pause 