I've had a few emails this week, asking most respectfully what actually happened to Ariana, and how we explained things to Lucy when it became clear that we were going to have to let her go. I don't mind people asking, I think its a natural curiosity that we as humans have, to want to know all the information. A lot of the time, knowing the circumstances make it easier for people to move on, and to know the tragic details, as strange as it sounds, can actually help to make sense of what seems otherwise like a totally unexpected, completely senseless loss.
Ariana's biggest problem turned out to be not what we'd spent the last 11 weeks fighting. At our 18 week scan she was diagnosed as having a condition called Hydrops, and Anemia. Hydrops is a devastating condition that is caused by the build up of fluid in two or more body cavities in a developing baby. Most commonly, the fluid builds up around the baby's lungs and heart, and in the abdomen. Baby's born with this condition often don't live because the fluid prevents the lungs and heart from growing and forming as they should, which means that the baby can't breathe, and the heart can't function properly.
Ariana's diagnoses of Hydrops also came with a diagnosis of Anemia. The doctors could find no reason for the anemia, but by the time she was born she only had half the amount of blood in her body that she needed to grow and thrive properly. We assume, at this point, that this is what caused her most lethal medical complication.
Two days before she was born via emergency c-section, We were told by ultrasound that there was no longer any amniotic fluid around her. In hindsight we now know that this was because her kidneys had stopped functioning, and she had gone into the early stages of renal failure. Amniotic fluid is half urine, half mouth secretions. If the baby stops swallowing in utero, then you can get a complication of too much fluid around the baby. If the baby stops weeing in utero, you get the condition Ariana developed which was no fluid around the baby. Ariana had stopped weeing a couple of days earlier we suspect, due to the renal failure.
Because she stopped weeing, the fluid that she would have been passing out of her body became trapped in her abdomen, and around her skin. Miraculously there was no fluid around her lungs and heart, and they developed practically unscathed despite the hydrops diagnosis.
Ariana was born at 7.34pm, on Friday the 1st of January, 2010, by emergency C-section at just 29 weeks gestation. She weighed 1.2 kilograms, or approx 2 pounds 5 ounces, and they estimated that 400grams of that weight was fluid under her skin and in her tummy that she needed to wee out. At the time of her birth, we didn't realise she was in complete renal failure, it was hoped and assumed that high doses of diuretics would help get her weeing again. She passed a tiny amount of urine in her first day, which was reassuring but the output quickly diminished to practically nothing, while her fluid retention got drastically worse.
Meantime Ariana had a blood transfusion to combat the anemia. At the time, she tolerated the transfusion very well, her colour became very pink and she looked much healthier which was encouraging to see. But by the end of her third day her colour was changing back to grayish, and it was determined that despite the blood transfusion she was still seriously anemic, and now suffering from jaundice as well.
The hematologist came to talk to us and said that it looked like her bone marrow was making red blood cells, but that they weren't maturing. The initial testing for leukemia and other diseases came back all clear, so we won't know until after the autopsy if they can figure out why that happened. They did do a bone marrow test to see if they could find anything, but we made sure they did that test just before we let her go, so she was completely pain free, it doesn't bare thinking about otherwise.
Ariana really held her own her first night and day in the NICU. But by the end of the second day, things were starting to get a bit rough on her. Remembering of course that not only did she have vast medical problems, but our angel was also 11 weeks premature, and so had to deal with the normal problems of a "gestational preemie - but size and development "micro-preemie". She was three weeks smaller than she should have been, with the fluid retention of a baby six weeks older than her. By the beginning of the third day in the NICU we knew that Ariana was in trouble.
Her kidneys were not functioning at all, she'd been in complete renal failure we think for 7 days by now, despite doses four times bigger of three different diuretics to try and get them going that were infused into her at all times, not just given as a dose. Her liver was failing. Her anemia and jaundice were uncontrollable. And then we heard that she'd had a massive grade four bleed into the part of her brain that controlled all movement and basic bodily functions. A grade four bleed is the worst a brain bleed can be. The one precious Ariana had, should have been categorized a five it was so severe. One by one her systems were shutting down - She couldn't make it.
Despite all we ever thought we could and would do for our daughter, we never expected the doctors to ask us if we wanted them to resuscitate her, if her heart stopped beating. Initially we looked at them like they were crazy! Of course! Keep her alive! That's our baby! She's our child. She's been fighting for weeks to be here, how can you ask us that!
But then rationality set it. We cried. We absolutely sobbed our hearts out. And we realised that no person, ever, should be expected to live artificially like that, in pain, and so severely sick, purely because we didn't want to let go. Letting go of all our dreams, aspirations and hopes for our baby girl was so so hard. In that second we realised that our prayers for our daughter to be healed were not going to be answered. It was the hardest realisation I've ever had to deal with.
With that came peace. Peace in the knowledge that though she was just four days old, and we'd been denied the chance to look after her the way we so wanted, this was a decision we could make for her. As her parents, this was a way we could parent her, and show her how much we loved her. I called my mum, hysterical, and told her that Ariana had suffered a brain bleed, and that we were going to lose her. I told her to come to the hospital, and to call everyone. Anyone who wanted a chance to say goodbye to our four day old miracle should come, and quickly. Matt left to make the same call to his family.
Lucy was already with us. She had come to the hospital after kindy for what was meant to be a "fun" visit, playing with mummy on the bed before going to see her little sister in the NICU. When she arrived at the hospital with Matt on Monday afternoon we didn't know that in just half an hour we would hear the devastating news about our littlest princess. She sat on the floor, watching a Dora DVD while Matt and I cried and made the hardest decision of our lives.
We pulled ourselves together, Sat Lucy on my lap and started to tell her that her little sister would be going to heaven. First we said to her 'your a big girl aren't you', and "when you get sick and you go to the doctor he gives you medicine to make you better" then "Ariana is very little isn't she? She's just a little girl, and she's very sick". We told her the doctors can't make her better, that she's too little and too sick. We told her that we were going to go downstairs to see Ariana, and give her lots of special cuddles and kisses, and that she could hold her and sing to her and kiss her. And that after she said goodbye to her, Ariana would have a special sleep and wake up in heaven as an angel. We told her that Ariana would not be coming home, and that once she was an angel, that we couldn't see her anymore, but that we could send her Balloons in heaven and look at her photos.
Lucy's first response was no. Flat out, No way, we're not leaving my sister here. But as we talked it through more with her, stressing that she could say goodbye and that she could hold her, she started to understand. You could see in her eyes that she was figuring it out. People say that children that young don't understand, but Lucy really got it. She could see we were sad, people were crying. She told me she was scared, so I sat with her and explained it to her, making sure to point out that she's a big girl and that her medicine works, that Ariana's didn't work cause she was too little. She seemed OK after that.
Ariana got to spend two and a half very precious hours with our families, being loved, cuddled kissed and sung too. Lucy sang Twinkle Twinkle to her, very quietly. I don't even know if anyone else heard her, but I'll never forget realising she was singing, loving her little sister for all the time she had. She kissed her head and her hand, she grinned and beamed and called her "little sweetie", rubbing her tummy and saying "little sweetie, its OK" over and over. I don't even know where she picked up the phrase, but now she says it to me. We have what must be hundreds of photos of our very special baby girl with all the people who loved her most. While other people were holding Ariana, Lucy and I made a list, of all the balloons she wanted to send to heaven for Ariana after she became an angel. Her list was Blue x 2, Green x 5, Purple x 5, Pink x 5, Yellow x 5, and Red x 5. We promised both her, and Ariana, the balloons will be exactly as requested, even if we need to hire the helium tank ourselves.
At 12.30am, on Tuesday, the 5th of January 2010 our baby girl, after fighting to stay with us for 11 weeks earned her wings and flew, pain free to heaven. Matt and I know, we did everything we could for her, and our last act for her as her parents was to let her go, to do what was best for her.
Nothing will ever replace those four days we had with our baby girl. The photos and memories will be counted among those most precious, and as we prepare to farewell our baby girl on her one and only "big" day, we know it will be as perfect as we can make it for her. She deserves nothing less. xo