This would probably be the hardest blog I ever wrote. Hardest in the sense that as I am blogging about my beautiful baby, I am desperately missing her so much.
Dana Gabrielle. We chose that name because we knew from my ultrasound that she has a curved spine, severe that is. We already knew that it may affect her organs on the left side particularly the heart and the lungs. She has a left clubbed foot as well. Me and my husband we’re scared of many things. I have loved her the moment I knew I was pregnant but it didn’t keep me from praying that somehow, the imaging tests were wrong.
So we chose the name Dana Gabrielle. It was because when I looked over its meaning, it meant competent, nice and warrior. We know that it may not be a regular childhood for her and the name will mean that she will be able to handle it.
I was told to deliver in Dallas. I am to deliver in a much sophisticated facility that incase something occurs during delivery, she will be taken cared of. But then, she had other plans. She came out earlier than expected. Miraculously, she was room air when she came out and her vitals were ok. I knew God was with us.
But she had subcostal refractions when breathing and it was labored. That was her baseline. It takes her a lot of work to even just breathe.
It was a wonderful feeling. So this is how it is to be a mother. The first time I saw her, it was magical. When I carried her, i was like pinching myself if it was all real. My heart crushed when I hear her cry. And when I fed her, the feeling was unexplainable. The best feeling is when she sleeps in my arms and I can always kiss her.
When we got out of the hospital, it was hard. I wanted to carry my baby all the time but I was struggling with post-op pain and constipation. I took my pain meds diligently so I couldn’t feel pain as I wanted to hold my baby. I wouldn’t rest.
I was with her everyday, every moment. She was a cry baby but then I figured it may be diapers, hunger, sleepiness or cold. I would mark my checklist but she still cries so we carried her almost all the time. I would sing nursery rhymes till she fell asleep and dance to make her more comfortable. When Niel had to go to work, I was left with her and I would end up staring at her most of the time. I would let her sleep and then feed her then play with her.
Then we had to see her doctor for the clubbed foot and for 6 weeks she has a leg cast that was removed and recasted every week. My baby was strong to have handled it. I would cry whenever I see her cry but I know she needed the foot corrected. She was only 2 weeks old when she had her first cast. It was a 2-hour drive to Dallas and when Niel started to work, I had no choice but to drive my baby myself. I had help from amazing friends. It was pride swallowing on my part and I was not feeling good about taking my friend’s day-off to rest just to be with us. But I had no choice because my baby needs to be treated. I had to be strong driving the Dallas freeway with my infant at the back seat.
That was the plan: fix the clubbed foot and then the severe scoliosis. The spine was so curved that it affects the heart and the left lung.
But still, my husband and I was always happy with her. She would make us cry whenever she starts to do something new like smile, and giggle. We got so used to the crying we tease our baby.
But when she was hitting the 3rd month, we noticed that she was not eating a lot. I had to change nipples and bottles even scooping but she would not drink more than an ounce of milk. If she did, that would be our lucky time. So we sought the help of the doctors. It was mainly because it takes a lot of work for her to breathe and eat at the same time. We couldn’t see it but probably she gets tired sucking for a long time. And when we were admitted initially only for feeding observation, it turned out differently than what we wanted.
Now, we are in the Critical Care Unit of Children’s Medical Center. One day, I may be able to rewrite this blog with a lot of details if it won’t be as painful as I am blogging now. She had a cardiac arrest and was miraculously revived. Now she is fighting to live and hooked to high pressure ventilators. She has been diagnosed also with severe pulmonary hypertension.
All I know is I miss my baby. I miss everything, the cries, the wet diapers, the stares, everything. I couldn’t believe that it was all so fast. I pray hard that God will let me continue that life. I pray that He will let me continue to be a mom to Baby Dana.
The doctors are telling us that prognosis is poor but then again, I am a mom. I hope and pray to God that He will make healing possible. I cannot let all treatments stop and allow my baby to suffer in my own arms. I see His miracles everyday and I hold on to that. Everyday I go to the ICU and see my baby laying with the vent, it breaks my heart to pieces. If I could just trade places with her I would. But right now, we have no choice but to be strong and hold our composure as long as our baby needs us. Wanting to carry her is so painful that I would want to take some meds just to feel numb. And when you close your eyes, it’s all her that you see. That all you can is do look at the pictures and videos in your fone to see her again smiling, playing, getting angry, sleeping, pooping and basically being your baby. I need help. We need help. And we seek God for strength and understanding.
I don’t know what the future is but I know that I want my baby back and I am desperate. So this is how it is to be a mom. But if God has other plans, we will just have to accept no matter how hard it is. But I believe in Him and I know He will not forsake us.
te Jones! kahilak ko sa imong ka agi. God is good! Dana will be OK! keep the faith. we will always include u in our prayers.
Be strong jonie. I kept crying while reading this. God is always with you and your baby.