A Look Back...
Today is a very difficult day for this household...
[Above: Gabby and I cuddling the day before we took her back to the hospital.]
We were not very public about the goings on with Gabriella's health when she was first born until this time last year. The last thing we wanted to do is cause concern for something we didn't totally understand ourselves.
[Above: Gabriella napping the afternoon the day we decided to take her back to the hospital.]
On September 29th, 2014, Gabriella was admitted to the Westview Health Center Emergency Department in Stony Plain for low oxygen saturation, increased work of breathing, noticeable weight loss, decreased interest in eating, vomiting and for being lethargic. Two days previous, she had also been admitted and transferred to the Stollery just to be sent home after her oxygen saturation increased with the assist of oxygen. Due to all of these factors, they immediately put Gabriella (who was cradled in my arms) in an ambulance and sent us to the Stollery, with Steve driving in behind us.
[Above: Gabby watching her teddy bear while trying to fall asleep between tests.]
Gabriella was quickly admitted and found a room in the Emergency Department, and soon was cut off of any foods other than IV fluids, hooked up to half a dozen different monitors and the staff began to run every test in the book on her - blood tests, ECG, Echo's, X-rays, etc... Everyone seemed confused as to why she was not doing well. After almost 12 hours in the ER, we finally had the opportunity to speak with the on-call cardiologist regarding Gabriella's test results. From the images they could see, Gabriella had a much more severe heart defect than initially diagnosed with and they were amazed she was coping so well thus far. Her team decided to admit us to the ICE Unit (Intermediate Level Care Unit) in the Cardiology wing for further testing and examination.
[Above: Steve snuggled Gabriella on and off with me so she knew we weren't going anywhere.]
We were finally moved from the ER around 3pm on September 30th to the 4D ICE Unit. Gabby's Cardiologist explained her results in more detail and the plan was to keep her as stable as possible until they could determine a plan for surgical intervention. We met the nurses, settled Gabriella down for a nap, and Steve & myself headed over to the grocery store to grab some food and snacks as it didn't sound like we were going to be leaving the hospital for a little while.
Upon our return, Gabriella's condition continued to decline. The nurses said that she awoke soon after we left and was very fussy. Her increasing heart rate and blood pressure really concerned Steve and myself and we asked the nurses if the Cardiologist on-call could pop by and just take a look at her for us. Thinking that she was just scared and needed to be cuddled a bit to help calm her down, the nurses set me up holding her beside her bed, and I began to rock her and sing to her. It seemed very quickly there after that her health began to rapidly decline. She was working harder and harder to breath, and she began to go pale, so Steve called the nurse over to take a look at Gabriella.
[Above: Cuddling mommy down in the ER.]
At that point, Gabriella began to go limp and started to become sluggish to respond, gasping for air. The next few minutes are ones I shall never forget. Our nurse took Gabriella from my arms, and called to her other nurse to call the PCICU (Pediatric Cardiac Intensive Care Unit) Transport team to assess Gabriella. Suddenly, other nurses from the floor began to crowd Gabriella's beside, turning on her bright overhead light, removing teddy bears, blankets, laying the bed flat, and began to bag her oxygen. Within five minutes the PCICU transport team had arrived to assess Gabriella, and along with them came the crash cart. They hooked Gabriella's leads up to a portable monitoring system, while the intensivist that arrived began to assess her.
At this point I couldn't stand and if it wasn't for the chair the social worker on the floor brought over, I would have sunk to the floor. The shock of the situation was too much to bear. Watching the doctors and nurses work over Gabriella made me sick to my stomach and I truly thought we were losing our baby girl before our very eyes. The team began to finish preparing her for transfer and they asked us to wait outside of the doors to the floor and that when they came out, we could follow them down to the PCICU. So we met with my parents and Katherine outside of the floor and followed them down a level towards the PCICU. We were initially told we could follow her in the whole way, but as soon as we reached the hallway, one of the doctors directed us to a waiting area and instructed us to stay there and we would be updated with information as it became available.
[Above: Sleeping on the PICU waiting room couches. We spent most nights in the PCICU with Gabriella.]
Seconds turned into minutes and minutes turned into hours. It was almost midnight before we saw a doctor that we recognized walk past us that we jumped up and asked if they had any news about Gabby. He informed us that they were having trouble getting any access/lines into her and he figured it would be a few more hours before we would get a chance to see her. By the time we finally were able to see Gabriella again, it was close to 2am, and we were beyond exhausted, nauseated and stressed. The intensivist said we could go in to see her but to prepare ourselves for what we would be seeing, and that it was okay if we couldn't stay in there for very long.
The sight we walked into the unit to was painful. Gabriella was laying flat on her bed and had clusters of cord and wires attached to her small body, monitors and medication pumps administering things I couldn't even pronounce. She was intubated, as pale as a ghost and to be totally honest, I didn't know if she was even Gabby anymore. The doctor explained to us that Gabriella had gone into what is known as Cardiogenic Shock. The reason why this could not be diagnosed any sooner is because her body had done an excellent job compensating for the defect, and from the doctors perspective, she should of had corrective surgery shortly after birth, and was amazed she has done so well for this long. Her congenital heart defect, known as a complete AVSD, was much larger than initially thought and there was significant mixing of blood between the ventricles and her valves were severely leaking. Because of this, her body could not keep up with the demand of her growth spurts and began to become overworked and rigid. This caused blood flow to stop going to the extremities and focus specifically on her heart and brain, which caused some damage to her kidneys and liver. It was so bad, that she additionally experienced lack of oxygen to her brain (which we did not know about until a few days after this when she started experiencing seizures). Basically, she was as close as she could get to going into full cardiac arrest without actually meeting that step. All we could do now was hope and pray that she could bounce back from this and start to become strong again.
[Above: Gabriella the morning after she was admitted into the PCICU. You can see she was intubated through the mouth as an emergency scenario (most are done through the nose). The monitoring cords are covered.]
The next few days were almost at a standstill, as she had been extremely sick and all we could do was sit at her bedside and hold her hand to provide as much reassurance as possible as the days went by. She was finally extubated on Friday, and that night I was able to hold her for the first time in 4 days. As the doctors placed her in my arms, my body went through a full-fledged panic attack thinking about what had happened just days earlier and I couldn't hold her for more than a few minutes. I felt so innately guilty that I had missed the warning signs and it was my fault that she had got so sick so fast. It was unbelievably difficult holding her as I felt that if I held her, I might hurt her more. It is a terrible feeling, being a mother who feels they cannot hold their own child...
[Above: My first time holding Gabriella after she was admitted. I only have three pictures of this because it shows that I couldn't really handle holding her after what had happened.]
Anyways, this is just a summary of what happened the first few days of our experience with Gabriella. I am not trying to reach out and garner sympathy from anyone - Gabby is doing well today and I could not be more grateful for that. I am trying to use this as a tool to help with the healing process of recovering from this time in our lives. The past week has been filled with sleepless nights, and long days, as I felt this could happen all over again if I wasn't careful enough. Thankfully, we are still at home and Gabby is still doing well, so we are truly blessed. I hope that by sharing this experience I will be able to come to terms with what happened, and be able to spread some awareness for the seriousness of Gabriella's condition, because she may look like a regular, happy kiddo, but man does she ever have a story to tell...
I am going to use this opportunity of coping with all of this by sharing Gabby's story over the next few months. I will do my best to post every few days, but it will mainly be based around times that I feel I need help dealing with. I am so grateful to have such a supportive family & friends helping me get through this tough time of the year. I know I am very lucky to have my little girl by my side today, something not all parents that experience situations such as this are able to say, which absolutely breaks my heart...