‘我坐了一半。“她在哪里?”我丈夫醒来,看上去很困惑。“谁?”我说,‘Shiloh。Where is Shiloh?!’: Baby with Cri Du Chat Syndrome survives after battling to stay alive 122 days in NICU, ‘I am so privileged to be her mom’

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“’Someone please knock me out. I don’t want to be conscious anymore. It’s too painful,’ I thought. We had walked over to the Ronald McDonald house to get a little bit of sleep, when we received a call at 1 a.m. The neonatal medical team said Shiloh was dropping her oxygen saturations and they were not coming up, despite a huge increase in oxygen. They explained they were unsure what was causing this, but she would be getting yet another blood transfusion, chest x-ray, and sepsis workup.

我在抽泣,要求见她。“给父母和她几分钟,”护士从业人员向周围的人群团队说。然后他们在她周围放了一个屏幕,关上了我们身后的门。我们等了。我们祈祷。在NICU的另一天。

When I was pregnant, there was no indication anything was out of the ordinary until I took a second trimester blood test. The results told me I had a 1 in 6 chance of having a baby with Down Syndrome. Given my young age, those odds were extremely high. I was referred to a maternal fetal specialist for further imaging. At my first appointment, my husband and I found out our precious baby had four soft markers for Down Syndrome (one of which was a single umbilical artery) and had severe intrauterine growth restriction. The news shocked us but did not sadden us since we had planned on adopting a child with Down Syndrome in the future.

Courtesy of Katie C.

I then had to take a more comprehensive blood test and go in for frequent appointments to monitor Shiloh’s growth and umbilical cord flow. It went from a carefree pregnancy to a high-risk pregnancy in a matter of days. When the results were in, my OB/GYN called me and happily said all was well. She went on to say, ‘Shiloh might just be a small baby, but we will continue to monitor her growth.’ They apologized for the undue stress the first test caused. Shiloh was then considered to be low-risk for any of the genetic disorders that were tested. But I had this feeling we were missing something.

Even though we were given the ‘all clear,’ I started researching and trying to put the pieces together. Before I could get too far in my quest for answers, Shiloh’s umbilical cord flow became elevated. I started going in twice a week for non-stress tests. Those only lasted a week and a half before we were thrown another unexpected curve-ball.

I went in for a routine OB/GYN appointment and the nurse took my blood pressure as usual. She looked at me and asked, ‘Are you nervous?’ I said I was not. She took it again… three more times. Then she left and returned with my OB/GYN, who looked very concerned. She explained my blood pressure was very elevated and I was spilling protein in my urine. ‘I think you have preeclampsia. I am going to need you to take a blood test to confirm.’ I was asymptomatic and did not grasp the gravity of the situation at all. My blood test showed that my platelets were low and confirmed my diagnosis of preeclampsia.

I was completely blindsided. Preeclampsia wasn’t even on my radar. ‘What are the odds? What more could go wrong,’ I thought to myself, as mascara ran down my face and tears covered the green v-neck I was wearing. Little did I know, the unexpected and painful news the future would hold.

我住院,magnesium sulfate to prevent me from having a seizure or a stroke. My parents and my mother-in-law rushed into town from opposite sides of the country. My OB/GYN and maternal fetal specialist said we would take every measure to try to prolong my pregnancy, since I was only 31 weeks and Shiloh was severely small for her gestational age. I only lasted three days before needing an emergency c-section. Shiloh’s umbilical cord flow had become absent, my platelets were dropping even more, and I had become so swollen I was nearly unrecognizable.

They wanted to put me under general anesthesia, due to my low platelet count, but I begged and persuaded them to use local anesthesia so I could stay awake during delivery. Once they started wheeling me to the OR, I was so terrified I completely shut down. I was silent the whole time. I knew Shiloh’s life and my life were at risk, and I had absolutely no control over the situation. I had no other option than to trust in God’s will for both of our lives.

Most moms dream of that euphoric moment when their precious baby is delivered into their arms. I did too. Unfortunately, I didn’t get the dream. I got the nightmare. Once she was delivered, they took her off to the side. I could see her out of my peripheral vision. But I couldn’t tell if she was dead or alive; she wasn’t making any noise. I could hear people saying, ‘Come on baby girl.’ I was in a state of disbelief and shock as I stared at the bright white ceiling, completely silent.

I was allowed to quickly kiss her on the forehead before they whisked her away to the NICU. Then they gave me a strong dose of versed, and all was well in the world again.

I didn’t see her until three days later. I had heard delivering the baby is the ‘cure’ for preeclampsia. But in my case, my blood pressure worsened after delivery, and I developed a fever. I was put back on magnesium sulfate and given blood pressure medication. I began pumping every two hours, around the clock, for my baby who I couldn’t see, touch, or hold.

当我终于见到我的孩子时,那绝对是超现实的。尽管所有医疗设备都吸引了她,但她绝对是完美的。我对她的美丽和力量感到敬畏。护士允许我把她抱在胸前一会儿,这是最终触摸她的最不可思议的感觉。当她的微小身体放在我的胸前时,我的眼睛充满了眼泪。她非常小,整个身体都适合我的一只手。我浸泡了她的每一英寸。我想记住她的每个细节,并将那一刻永远留在我的记忆中。

Courtesy of Katie C.

我抱着她后不久,她必须插管并挂上一个为她呼吸的振荡器。她被镇静并放置在最小的刺激下。在那个时期,我们几乎无法触摸她。这是令人心碎的,但也使每一个触摸都如此特别。做她的口腔护理或轻轻换尿布是一种荣幸。我是如此幼稚,认为大多数NICU婴儿都需要这种支持。我不知道她有多生病,需要31周的人需要这么多的支持。

当我们晚上从NICU回家时,我将研究所有的医学术语,并尽我所能了解Shiloh的状况。研究使我的脑海忙碌,所以我不会疯狂地想念她。不过,它并没有完全摆脱心痛。一天晚上,我坐了一半,睡着了一半。“她在哪里?”我丈夫醒来,看上去很困惑。“谁?”我说,‘Shiloh。Shiloh在哪里?’

当Shiloh开始出现异常症状并获得奇怪的实验室结果时,我们在第一个NICU近一个月。这些症状令医疗团队感到震惊,因此他们向我们接触说,他们相信她患有胆道闭锁,囊性纤维化或α-1抗抗蛋白蛋白酶缺乏症。这三个诊断都非常严重,所以我立即失去了它。

They explained they primarily thought she had Biliary Atresia. It was the worst of all three, and lethal unless surgically repaired immediately. Even with the operation, there was a good chance she would not survive. They arranged a medical transport flight for the next day, to a hospital with surgeons equipped to perform the procedure. We cleaned out our apartment that night, with the help of our wonderful friends, and prepared for the unknown. I was pumping around the clock, cleaning out our home, and wrapping my mind around the fact my precious, beautiful baby girl might die soon. It was almost too much to bear.

Courtesy of Katie C.

We got to the new NICU and everything was a blur; yet I remember perfectly, the smell of clean floors and hand-sanitizer. And the feeling of being so small. I was surviving on adrenaline. I had never felt my weakness and humanity more in my life. I begged God to spare her.

An enormous team of specialists came to examine her and assess her wide array of medical issues. We were shocked when the GI doctor said he didn’t think Shiloh had Biliary Atresia. It was a huge weight off of our shoulders, but we were now back to the drawing board.

That’s when genetics got involved. They examined her and found multiple, tiny markers that went unnoticed until that point. We decided to do the genome sequencing test to determine if she had any chromosomal abnormalities. Everyone assured me the results would be completely normal. To all of the doctors she looked completely typical. The only red flag was her medical complexity.

Courtesy of Katie C.

在此过程中,我们被转移到了第四级NICU,因为Shiloh无法使她的饱和度恢复,并且她的心动过缓。由于血糖下降,她再次输血,并将其放回静脉葡萄糖上。

After we had been in the level four NICU for a few days, we were approached by our geneticist. But this time, he brought two other people with him. He said in a gentle voice, ‘Can we talk to you both in the conference room?’ I knew immediately, we were going to receive life-changing news. I remember the walk out of the NICU and to the conference room so clearly. A lump was forming in my throat. I felt like I was going to jump out of my skin. We sat down at the end of a very long table, and they said the words that would impact our lives forever. ‘Your daughter has Cri Du Chat Syndrome.’

我开始尖叫和哭泣。我想不能myself in that moment. I felt like the daughter I had dreamed up throughout my pregnancy was gone. My hopes for walking my daughter down the aisle, or moving her into her college dorm, were seemingly shattered. I was now hoping she would be able to walk, talk, and potty train. Nobody thought she would be diagnosed with something that would cause both intellectual delays and health issues.

Courtesy of Katie C.

The funny thing is, in the past I had thought about how I would react if I was told my kid had a diagnosis. I thought, ‘I don’t understand why parents get upset. I will take the news happily if that ever happens to me.’ Unfortunately, when it did happen to me, I had the opposite reaction.

The trauma of my terrifying delivery, watching Shiloh almost die on a few occasions, and receiving an unexpected diagnosis caught up with me. I became very depressed and started developing PTSD-like symptoms. Any time I would go outside the hospital, I would become hyper vigilant and get extremely anxious. I had no energy and wanted to cry all of the time.

Over time, I realized I needed to reach out to other parents who have children with Cri Du Chat. I quickly realized the information online paints such an outdated, grim picture. In actuality, these kids are incredible. They all are so happy and lead meaningful and purposeful lives. They enrich their families so much and give them a deeper, richer love that people miss out on if they don’t have a kid with special needs.

Courtesy of Katie C.

我开始意识到我们拥有一个如此美丽,稀有的小女孩是多么幸运。上帝完美地形成了她,完全像他想要的那样。

We then began discussions with Shiloh’s medical team on what the best course of action would be, since we knew her diagnosis. We all agreed it would be better for us to be transported to the hospital where Shiloh would be once she got out of the NICU. So we packed up all of our things, once again, and boarded a prop plane to our final NICU.

At this NICU, we got set up with all of her long-term doctors, and Shiloh had her g-tube and fundoplication surgeries. She finally was able to get her NG tube taken out, and come off oxygen. After 122 days in three different NICU’s, we were discharged. It felt like we had completed a triathlon, and in another sense, it felt like we were just getting started.

我们已经重新三次之后,布鲁里溃疡t are now home and happy. Our days are filled with doctors appointments, therapy sessions, and calls to case management. But life is pretty great. Despite all she’s been through, Shiloh is the happiest and most content baby I have ever known. She is pure joy in human form. I am so privileged to be her mom.

Courtesy of Katie C.

这听起来可能很奇怪,但是我永远不会将我们的经验换成世界。它把我剥夺了我的核心。它暴露了我的确很丑陋的地方,也向我展示了我们可以通过依靠耶稣来度过任何事情。我珍惜与医生,护士,治疗师和社会工作者建立的所有关系。这么多人也对我们表现出的善良和牺牲爱感到惊讶。即使是最小的善举也永远不会被遗忘。

I still struggle with bouts of anxiety, depression, and PTSD. But each day is a little better than the one before. If I have learned anything from this experience, it’s each day is a gift from God. He is in complete control and has a beautiful plan for Shiloh’s life. It might not always look the way I want it to, but His ways are better than mine.”

Courtesy of Katie C.

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This story was submitted tobeplay网络一直不畅by Katie C. of California. You can follow her journey onInstagramand watch her video onYouTube。提交自己的故事here,请确保subscribeto our free email newsletter for our best stories.

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