So here it goes. The story of how our family became a family. And why sometimes, we are just alive and here (I say that a lot, when someone at work or church asks how we are doing) "I'm here."
Because really, sometimes that's enough.
I want to share the blog that inspired this letter. The blog is the story of Ruby. A must read in my opinion. Grab a box of tissues first. This is long, but it is my story, better, my family's story. And I feel like it is something that needs to be shared today, especially as we head into Lilly's angel day on Friday. So here it is. And probably grab a few more tissues. It is pretty heartfelt and honest.
Ani,
I know you do not know me. I stumbled upon your blog today. I read it as I held my almost 3 year old and 1 year in old in my lap. I read it as tears poured down my face, and my almost 3 year old kept asking "are you sad momma, you okay?" and as my 1 year old just looked up concerned at his mom crying. I wish I could hug you, and let you know that although that pain never fades, the days get better, and you will cry less. The constant pain does fade.
When I found out I was pregnant with my first, I was already 7-8 weeks along. I had been so busy with a move, and changing jobs that it did not even occur to me my period was late. Ironically, my husband's identical twin and his wife had just announced the week before that they were expecting their first. At 17 weeks, we went into a gender ultrasound place in the mall, and found out our baby would be a little girl. At 20 weeks, I went in for my medical ultrasound and check-up. The technician said nothing to us about what she was seeing, she was too busy with a salesman who wanted to sell them this new ultrasound machine. So when I went into the midwife's office, and she told us there was a problem, our world came shattering down. After many specialist and many scans, we were told that we could abort or carry our baby girl, but that there was a mere 1% chance she would make it longer than an hour or two after birth.
At 37.5 weeks, I decided it was time, and after 20 hours of labor, Lilly came into our lives. She was born 3 hours after her cousin, October 18th, 2006 at 5 am via a c-section. They took her out and put her immediately under the warmer. They wrapped her up and told my husband to take her over to me to say goodbye. I kissed that sweet face, and told her how proud I was of her, what a blessing she was to her dad and I. All of a sudden, her heart started to beat a little harder, she began to pink up, and I kissed her and told my husband to take her out to our waiting family so they could enjoy a few precious moments with her.
I was wheeled back into the room, and she was there, being sung to and loved by our families. I am not sure Lilly was hardly ever put down. We took her home when she was 3 days old. Someone would come over almost every night to help us (best friends, sisters, moms, sister-in-laws, etc.) Each day was fraught with seizures, trying to get Lilly to eat something, and wondering if this would be her last day. She got sick the week of Thanksgiving, and when my mom left the Tuesday before, I told her I was worried about what would happen with Lilly while she was gone. Thanksgiving came, and after taking my husband to work (the day after at 6 am) I went up to my in-laws so that I could do some Christmas shopping. I kept thinking "oh, I will go shopping now" and would just keep putting it off. My sister-in-law was there with my niece, and my niece was laying on the floor, in front of a gas fire, so I laid Lilly next to her. I checked on her short while later, and she was blue. I immediately picked her up, and she was not breathing. I started crying, and I remember pleading with her to live. She started gasping and my stunned sister-in-law was finally able to yell for our mother-in-law. We immediately packed her into the car and rushed home to the oxygen that was at my house. While in my house, I remember grabbing the breast milk from the fridge, when the thought calmly crossed my mind "this will be the last time." We got ahold of her hospice nurse and she met us at the hospital. Since Lilly had been just little sick that week, we suspected she had aspirated at some point. The hospice nurse told us to take her home that it would not be long. My husband came down from his unit (we both work at the hospital) and we left. We went to lunch with our family as it was my father-in-law's birthday, while I pleaded on the phone for my parents to please hurry home from California, that I needed them. We spent the time at my in-laws, holding Lilly as she struggled to breathe and live. We gave her a blessing to release her, and late in the night, my husband and I went and laid with her in a bed, just holding her between us, showering love upon her. She held on for a whole day and a half, making it long enough so that my family could say goodbye to her, and than she passed sweetly from this world, while being held by her Dad.
Two weeks after we had Lilly, I told my husband that I wanted to start right away trying to have a baby, as I knew it would be helpful with healing to be able to hold onto hope that if something did happen to Lilly, our arms would not ache so badly from being empty. So 3 months after she passed away, we were expecting again. I was so nervous, but had been told to not worry, what she had was not a common condition that would be passed on. So at 16 weeks, with our little guy's brain looking perfect, we calmed down and finally starting enjoying the pregnancy. At 22 weeks, I went into the perinatologist to check our little guy out. My husband was in there with me for the first part of the scan. But he had to get back to his unit for work, so my mother-in-law came in while the specialist was scanning. Again our world was rocked. Our little boy had some obvious defects with his heart. We would later learn he was missing 1 1/2 chambers on the left side, and had a condition called hypoplastic left heart syndrome. We made the plan to deliver via c-section at the University of Utah Medical Center, where he would be transferred to Primary Children's Medical Center for the first of three heart surgeries. He was born shortly after 37 weeks, on October 27th, 2007, and had his first open-heart surgery at 5 days of age. It was horrible to hand him over, and than to have him come back so unbelievably swollen and sick. It literally made my stomach sick to see him, and realize what he had just been through. I ended up getting really sick and than had to be re-hospitalized, and did not see him for 3 days. He looked much better the next time I saw him. We had held Ryker each 4 times before his surgery, as he was intubated and very critical. At 3 weeks, while adjusting his feeding tube, they accidentally tore his stomach in 3 places and he was vomiting and pooping straight blood. They did an emergency surgery, and told us it would take 1 hour, and finally at 4 hours, they came and talked to us. He had received over 400 mls of blood product, and they had to remove quite a bit of his stomach, but he was finally stable. We spent the night of our anniversary in a sleeping room outside the PICU. Ryker continued to fight. He made me smile and cry each and every day. He had an incredibly strong spirit, but I knew he was hurting. At 6 weeks, they finally let me hold him. They worked that week to trial him off of the ventilator, and at exactly 7 weeks, we went up to see him extubated. We sat with him for 40 minutes, but as I had to return to work the night before and had barely slept, nor had I eaten or pumped in some time, we left to go and take care of those needs. We hurried and ate, and I told my husband that I would feel better if we went back up and he sat with him while I pumped, so we both went back up. We were chatting with another family (a distant cousin on my husband's side ironically whose son was born with the same condition as our son) when another nurse said we might want to get to Ryker's room.
They were re-intubating him, and I remember having a really bad feeling. I immediately called my parents and in-laws, and felt prompted to tell them to leave and come up, that I felt like something was wrong. I watched outside his room as his normal sats (while being intubated) of 75-85 dropped to 60, than 50, and than 30, and than stayed at 19. Being in the medical profession, I knew what was happening. But while I knew that, I did not want it. We had already been through this trial. I apparently started yelling "no, no, no" as they brought the crash cart outside Ryker's room. Our next door neighbor's mom came out and hugged me, telling me how sorry she was, and brought us some soft tissues. They brought the ECMO machine outside of his room, and the cardiothoracic surgeon showed up. He and the cardiologist scanned and re-scanned Ryker's heart, looking for the cause of what was causing all of this. Our parents arrived. The surgeon who had just repaired Ryker's heart seven weeks before came out and talked to us. We knew. We just knew. He told us our options. We could try and have them place him on ECMO, but the surgeon was concerned he would die before they could even get the cannulas in. Without a word to each other, my husband and I just looked at each other, and told him no, that it was Ryker's time to say goodbye. I went back into Ryker's room, as the sweet resident pushed dose after dose of EPI into him. We asked her keep him alive so that we could give him a name and blessing. The blessing was so sweet, as my husband named him and released him from this world, all in one blessing. I remember touching the resident's hand and saying "no more. It is okay. It is time to say goodbye." I started removing the wires and lines that I could. They had brought in two rocking chairs, and I asked them to get us a couch so that my husband and I could say goodbye to our baby with him in our arms. We sat down, and the nurse brought him over as the respiratory therapist continued bagging Ryker. We kissed our sweet baby. We told him how proud we were of him, that he had fought so valiantly. We told him how much we would miss him, and to stay near to us as he could. And than he was gone. Everyone took turns holding him, as besides my husband and I, the only one to hold him was my mom once. I remember about 10-15 minutes after he passed, feeling his spirit come back into the room, and to my side, and realizing that this was the spirit of my baby, but that of a young man's We held him for a few hours, and than said goodbye. I remember falling asleep that night, and awaking like I always did at 4 when I would normally pump and call the hospital. I remember going through that day and wishing we could just go back up to the hospital and pretend like none of this had happened. We buried him a week before Christmas. I hated Christmas that year. We even had already bought Ryker's Christmas presents, and taking them back to Target was excruciating, as the cashier asked if there was anything wrong with the little outfits and toys. I could not tell her "well yes, everything was wrong with them. They are for a little boy who sits in a morgue waiting for an autopsy and to than be buried.
We decided after everything to wait off on having more babies. I was not on any birth control though, because I did not see the point, as I had not even had a period since Having Ryker. 7 months later, we decided to start he adoption process. Two months later, we were on-line and waiting for the call. 6 months later, we got the call, and 5 weeks later, after quickly becoming foster parents because of some extenuating circumstances, we brought our baby boy, Collin, home. He was legally ours 9 months later, and sealed to us, and before we knew it he was one. When he was 13 months, I started feeling sick. Ever since having Ryker, my body had been doing strange things and having issues with being regular and in regards to ovulation. So I did not suspect pregnancy. But after talking to one of my co-workers, I decided the next day to buy a pregnancy test, just on a whim (and to prove her wrong.) Sure enough, we were pregnant. I was freaked. I saw perinatology every two weeks from 8 weeks on, and in-between I was seeing my OB. We did a CVS test at 12 weeks and found out we were having a boy. At 17 weeks, we did a full ultrasound (I had been getting them before, but this was the first time we could see anything really clearly and in de-tail.) Everything looked great. We could not see any issues with the chambers of the heart, although it was still a bit early. At 21 weeks, I went to cardiology (in-between Ryker and Collin, they had discovered there was some genetic link between my husband's heart defect and our son's, and we had a niece born 7 months later with Hypoplastic Left Heart Syndrome, but she is now 3.) So while they were scanning, I told my husband that I felt like there would be something wrong. Not anything major, but just something minor. And I was actually right. Our son had a suspected coarctation of the aorta, the same heart condition as my husband's. I was supposed to go back to perinatology for a scan the next week, but my brother came home from Afghanistan, and so at 23 weeks, at the perinatology appointment, our world came crashing down once more. This baby, for some unknown reason, had developed fluid around his lungs. He had developed a condition called Hydrops. We started going twice a week for scans, and they even did several drainings of fluid from around the lungs. At 26 weeks, they decided to perform a fetal surgery and place a permanent drain through me and into my baby, shunting his lungs from the fluid. This was a very painful procedure, but it was successful in saving our Jacob's life. I went on bed-rest at 33 1/2 weeks, due to preeclampsia, and delivered him at 36 weeks. I had become so sick from the pre-eclampsia so they decided to go ahead and get Jacob out. He only had C-PAP for about 2 hours after birth, and was transferred at 15 hours over to Primary's. He had heart surgery at 6 days, and was home on day 12. He did come home with a feeding tube and oxygen, but within the weeks after, he was able to get rid of them. Having Jacob was very healing. Many of the nurses that had taken care of Ryker took care of Jacob. And the fact that we were able to bring our baby home from Primary's was huge.
Now 4 and 5 years later after losing Lilly and Ryker, I miss them. There are days where it hurts a great bit. But most days, we do pretty well. The first year was excruciating, and some days and birthdays are worse than others. Lilly's birthday was hard this year because her cousin (whom shares the same birthday) had a princess party with friends, and had Lilly been alive, she would have been there. Sometimes I do not even need a reason. I love and miss them dearly. I know my boys know them, but I wish they could have REALLY known them. It also scares me that something will happen to Jacob, because he is so incredibly sweet, and I am not the only one to notice that. I have not had the greatest sleep since Jacob, but I really do not mind, because if something ever happened to him, I will have known I did not take those precious moments for granted.
Someday your heart will not ache so. Someday you will not cry every time you think of your sweet Ruby. However, Satan will always be there, trying to make you feel doubt, feel misery. That is when you will call on your personal guardian angel. She will come, and she will bring peace to you, and to your family. The spirit world is so very close. And while there is important work going on over there, none of that work is as important as watching over her family. I hope I did not sadden you further. I just wanted to know that Ruby has touched my life today, that your family has made a difference in sharing your and her story. We did not donate Lilly's organs. I wish we had. I wish I had known more. My hypoplastic left heart niece will need a heart transplant someday. Our Ryker, had he lived, would have needed one. I think putting the word out there about the need for organ transplant is a mission Ruby would be so very pleased with.
{{{{Hugs}}}}
Emily Gourley
