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I don’t think people truly comprehend how hard it is to lose a child. A few weeks ago I had to go to Café Zupas to sit down with the man who made the final decision to stop resuscitating my daughter and listen to him explain why they don’t know what happened and that there were other things they could have tried but didn’t. My mom, who attended the meeting with my husband and I, noticed I had cried a lot and had to keep excusing myself to grab more napkins to hide my tears. She said to me, “I saw lots of crying, what’s going on?” I literally sat there shocked that my own mother would ask me why I was crying so much but I realized no one knows how I feel or what’s going through my head and I think that’s one of the hardest things about going through the loss of a child. Unless you have been through this yourself, you will never be able to understand the complete sorrow and emptiness that accompanies this tragedy. I have to continue to live life without the person who was supposed to outlive me. I have always understood that death befriends us all at some point, but by losing a child it disrupts the natural order. You are supposed to grow old and experience life. You aren’t supposed to be born just to suffer and die a few months later. In the middle of all these emotions I feel, I decided I wanted to write about the day Ajla lost her battle so maybe people can get understand a little more and hopefully use their understanding to help others going through the same thing.
To start off, I have to give you some background on Ajla. On May 7th, 2017 I was taken into the operating room to have a C-section due to her umbilical cord not delivering enough nutrients. She was slowly withering away inside my womb and had to make her appearance to the world 6 weeks early. She was a mere 3lb 6oz. What was supposed to be one of the happiest days of my life turned into a rush of fear, panic and shock. When she was finally delivered, she wasn’t breathing. I longed to hear the first cry that every mother yearns to hear but I never heard it. Instead I watched as doctors and nurses tried to get her breathing and all I could do is lay on the operating table while they stitched me back up. Finally, they got her breathing but still I never heard a cry. They allowed me to kiss her forehead one time and whisked her away into the NICU, the place we would call home for the next 89 days. After they had finished my operation, I had to sit in the postop room waiting to be able to feel my lower extremities again and I remember focusing so hard on being able to wiggle my toes because I wanted nothing more than to go see my baby. I also remember feeling so angry because all these people were getting to see my gorgeous daughter before me. I carried her for 7 ½ months and didn’t even get to spend the first few hours with her while other nurses and doctors whom I’d never met got the chance to. After I was cleared, they took me to see her for just a few short minutes and I remember seeing her with all these cords and wires and machines I had never seen in my life and I knew two things from that moment on. 1. I was going to love this little girl unconditionally 2. Life was never going to be the same. Now her whole NICU experience is a completely different story and I don’t want to get sidetracked but throughout her stay we learned that Ajla had many problems. After a very long 89 days we were able to take her home and her after visit summary included her diagnoses as:
[Respiratory distress of newborn, inadequate oral intake, dysmorphic features, polydactyly of both feet, thrombocytopenia, disorder of upper airway, syndactyly of toes, hyperbilirubinemia, ventricular septal defect, patent foramen ovale, patent ductus arteriosus, bicuspid aortic valve, premature atrial contractions, premature ventricular contractions, Greig Cephalopolysynactyly Syndrome, Gastroesophageal Reflux Disease, hyponatremia, respiratory failure, laryngomalacia, omphalomesenteric duct, vesicoureteral reflux, aspiration of milk, macrocephaly, congenital stenosis of coanae, right rib fracture (due to CPR), hypokalemia, and a critical airway.]
Her diagnosis was longer than most adults by the time she was three months old. My daughter had so many things I had never heard of in my life but now I am an expert on them. I can tell you every sign of respiratory failure, I know how to titrate oxygen up and down based on oxygen saturation, I know how to work a pulse oximeter, I can perform CPR and have learned so many things about the lungs and airway. I am an expert in G-tubes. I know how to replace a “button” that went straight to my daughters stomach. I knew how to measure out her breastmilk to the exact Ml and feed it through a pump going to my daughter G-tube port. I learned how to burp someone with a G-tube by inserting an empty syringe and letting the patient expel gas. I learned so much about so many things in such a short amount of time but it was critical that I knew everything I could about my daughter and her conditions.
Well, fast forward 3 months, two hospital visits and a few more diagnoses and it leads us to Ajla being admitted into the PICU yet again for respiratory distress. This time it was due to the Rhino Virus, otherwise known as the common cold. Her oxygen saturation started to get harder to maintain and I kept needing to bump up her oxygen more and more so I brought her to the hospital. A week or so before being admitted to the hospital, we had a consult with her ENT and her Pulmonologist (Ears, Nose, Throat Doctor and Lung Doctor). They informed me that Ajla’s best option to help her breathing issues was to get a tracheostomy which is a breathing tube inserted into a hole in the trachea to help patients breathe better. So while we were in the hospital for her cold, they decided just to keep her in the PICU until she had surgery. A week and some odd days went by and finally the day came for her surgery. I was so scared yet so happy because I thought the trach would be something that would help her breathe and ease her life a bit more but boy was I wrong. From the moment they put my daughter under anesthesia she started to crash. They couldn’t stabilize her breathing very well but they finally got her settled down and did the procedure. When she came back from surgery, everything seemed to be going great. The doctor said she was breathing on her own and not needing much assistance from the ventilator (a machine that can breathe for you). This was great news and I was so happy that things were going to finally start getting better. Later that evening I noticed that her trach wasn’t as secure as it was supposed to be and she was having some difficulties with her breathing and ventilation. The nurse came over and I remember the nurse picking Ajla up and the trach just looked like it could pop out at any moment which would not be good news. I asked her if that was normal and she said that’s what they were going to fix right now. I thought it would be easy but I couldn’t watch so me and my husband went to the vending machine to get a snack real quick. By the time we got back, which was only like 5 minutes later, they were bagging her with oxygen, her trach was out, and there were three or four people standing around her. In the process of trying to put her trach back in, it got dislodged and had to be removed. They immediately called her ENT who was the one to do the surgery. It took him about 10 minutes to get there and almost as soon as he got there, she crashed. Her heart rate dropped, her oxygen saturation disappeared and the next thing I knew, they were performing CPR on my daughter. Nurses and doctors kept running in left and right. Doctors were being paged. A recorder came to record everything happening. Chaos all around me and all I could do is watch as my poor daughter got her chest squeezed over and over again for what seemed like an eternity. Finally, the ENT was able to reinsert her trach and they were able to get her stable again. I’ll never forget seeing my daughter afterwards and seeing tears come out of her eyes. I know she wanted to cry but the trach prevented her from making any noise. There were red marks and broken skin on her chest from where they did CPR. My heart was broken, my daughter was hurt and there was absolutely nothing I could do. Over the next two or three days things seemed like they started to get a bit better and I started to learn how to take care of her Trach. The Wednesday night before Thanksgiving approached and Esmir and I decide to go home for the night to get some good sleep and then were going to spend the whole day and night down at the hospital for Ajla’s first Thanksgiving. That was the last night I went to bed happy.
2:27am. My phone goes off and I see it’s a call from the hospital. I don’t know if it’s a mothers’ intuition or a gut feeling but I knew something wasn’t right. I answer and all I remember is a nurse telling me my daughter is needing CPR for the third time in her life and has already had 8 rounds of epinephrine and I should get down to the hospital. I couldn’t think, I couldn’t speak, all I could do was focus on getting Esmir and I to the hospital. I hung up on the nurse real quick to call my mom and let her know and called the nurse right back. By the tone in her voice I could tell it wasn’t good. I remember getting in my car and speeding towards the hospital. I ran red lights with no hesitation, I was flying down the highway doing everything I could to get there. I prayed to God to let my baby live. The nurse met us down in the E.R. and took us up the back way to the PICU where our daughter was. As I was running I kept thinking to myself that I was just dreaming or I was in some sort of a movie. When we got to her room it was surrounded by doctors and staff yet again yet this time everyone’s spirit was gone. I laid eyes on my daughter and I watched as her limp body bounced around from getting CPR. She looked like a rag doll. No life, no stiffness. I could tell my daughter was gone. They let me into the room and the doctor looked at me and said, “I am sorry there’s nothing more they can do.” They stopped trying to revive her. They stopped performing CPR. They just handed me a blanket, put her in my arms and said I’m sorry. I remember saying “no, please don’t stop” over and over and over again but nothing I said would change the fact that she was gone. We spent 4 hours with her after she died. I changed her last diaper, I gave her a bath, I sang her lullaby’s, and laid in bed with her for the last time. I felt her body change, I kissed her cold forehead. Our parents came and said there goodbyes as well and tears filled the whole PICU. When we felt like it was finally time to let her go, we told the staff. They told us the next step was to take her down to the morgue. Me and my husband had to watch as they put a toe tag on our daughter and place her in a body bag. We stayed with her for as far as we could and had to leave her at the door to the morgue. Every fiber in my being just wanted to take her home with me but I knew it wasn’t possible. The nurses hugged us goodbye and we walked out of the hospital childless. I can’t even begin to describe in words how painful everything was. My heart felt empty. I felt as if I lost my soul when she left. And every day since has felt that way. My happy is never as happy as it was when she was around. Excitement isn’t the same. Holiday’s will never be the same. Life in general will never be the same. During my honeymoon with my husband, we sat and watched fireworks in McCall. I remember feeling so happy to be with the man of my dreams, watching beautiful fireworks on our honeymoon and out of nowhere I got an overwhelmingly sad feeling because Ajla wasn’t there to enjoy it with us. Yes, she’s always there in spirit but it’s not the same. Life will never be the same.
Hopefully by reading Ajla’s story, it will give you some perspective as to what I am going through. Most people are too afraid to ask what happened or don’t want to talk about her but the only way I can cope with it is by talking about her. I want to talk about the cute things she did and I want to talk about how she died because it’s my way of processing everything. I also hope by sharing my experience it will let other bereaved mothers know they aren’t alone and it might help others realize that some people are going through a lot and just need an ear to listen or a shoulder to cry on.