By Badass Kortney
I’m the mother of five beautiful children and wife to an amazing man. Our oldest son, Hutson is 11, then we have a set of boy/girl twins, Deacon and Finley who will be 3 next week and then our second set of boy/girl twins, Piper and Harvey. We did IVF to conceive both sets of twins after 6 years of secondary infertility. I was able to breastfeed my first set of twins for 16 months before they self weaned. Piper and Harvey are 8 months old and still going strong. This is my story…
The week of Sept 8th there was a virus sweeping through our house. All of the kids were catching it one after the other starting with the oldest. It was just a low grade fever and cough. It seemed to last about 3-4 days and then it was done. Harvey was the last to catch it and had just been running a bit of a fever but that was really it. On Sept 18th I put him to bed after nursing him like every other night. The morning of Sept 19th he woke up crying, I went to get him and change his diaper and he had a stuffy nose and was coughing. I changed his diaper quickly and started cleaning off his nose. He started gagging and turned blue. I picked him up and leaned him forward to help him get the mucus out of his throat. He threw up and started crying. It scared me so bad.
I thought he would be better by day 3 and he seemed to be worse. So I got on the phone with the pediatrician to see if I could get him in. The earliest appointment they had was 3:30. I took it but still felt uneasy. He had fallen back asleep in my arms. I decided I’d check his temp and try to nurse him. He had a low grade temp so I sat down to nurse him. He would latch for just a second and then pull away and gasp. By this point I was scared. Something was wrong. I tried to get him to wake up but his eyes just rolled back in his head and he was limp. I was shaking as I called my husband and told him to meet me at the ER. As calmly as I could I got Deacon and Finley in their carseats and buckled up. Then I got Piper and Harvey in their carseats and headed to the ER. I kept reaching back and grabbing Harvey’s hand to make sure he was still conscious. He would grip my finger. We don’t live far from the ER and my husband got there before I got him out of the car. He stayed with the other kids while I took Harvey in. He just snuggled into my arms and slept. They took us back immediately and checked vitals and everything was fine. We waited for the doctor and I asked if I could nurse him. I tried again and he puked. He was lifeless.
They decided to start an IV to get fluids in him as he was dehydrated. He hasn’t nursed since going to bed the night before. They tried ELEVEN times to start an IV. He never flinched. By this time I was sick…something was very wrong. I asked that we take him upstairs to the pediatric unit. After a nasty remark by the nurse I was shown up stairs. The nurses knew right away something wasn’t right and the doctor on call was right by my side in an instant. They realized they wouldn’t be able to get an IV b/c his veins were so small and the ER nurses had blown any that he did have. So they did an IO line in his fibula (its an IV that goes into the bone). They pumped him with fluids and the doctor said he needed to be admitted but I’d have to go back to the ER to do that. After what seemed like forever but was really about an hour we got admitted and back to the pediatric unit. The doctor ordered a spinal tap and CT scan. She had the results of the CT within 30 minutes and that’s when she told us he had extra fluid/blood in his brain and what appeared to be a cyst. We would have to be transported to the Children’s hospital and see a Pediatric Neurologist. But she thought that the extra fluid and “cyst” could be pushing on something and causing him to be so sleepy.
An ambulance came and transported us to the other hospital. By this time my mother in law had gotten to our house to stay with the older 3 kids and my husband was with me and he had Piper so I could continue to nurse her. We got to the Children’s hospital around 10pm on Friday night and they started assessing him. They needed to get an IV started b/c an IO can’t stay in for more than a few hours. They had taken him straight to the PICU and several nurses looked him over looking for a good vein. He had nothing. They ended up calling the Medivac team to come in and see if they could help. These women were amazing. They only poke him twice and they got 2 IVs started. Several Neurologists had come in and it was decided he had too much pressure on his brain for the fluid/blood and he needed an EVD (Drain). They had ordered an MRI to be done but said it would be Sunday before they could do it. This is something I was not happy about. He was completely lifeless… something was very wrong and I wanted this “cyst” gone. The EVD was placed and he was finally able to rest but I couldn’t hold him anymore. Watching my baby lie there, completely helpless was the most painful thing I had ever done. As we waited for the MRI on Sunday my husband was bringing Piper to me every 3-4 hours so she could nurse. She couldn’t go in the PICU so I had to nurse her in the waiting room while my husband set with Harvey.
Around 1:30 Saturday afternoon Harvey moaned so I jumped up to check on him and he had dumped 58cc of blood into his drain. He had been putting out 10-15 cc an hour so that was a lot. I called the nurse and she was shocked to. The Neurologist came in and seemed baffled as to why he would have dumped so much so fast. I asked if we could please to do MRI now and he told me again that they couldn’t do it until Sunday. So I asked for a CT scan. Just to compare to the day before to make sure the “cyst” hadn’t ruptured or something. Thankfully he agreed to the CT scan. He was taken immediately. It was done pretty fast and they brought him back to the room and started hooking him back up when they came in and said, “Get him intubated, he’s getting an MRI NOW!” I don’t know what they saw on the scan but things got serious real quick. I wasn’t sure what to think I just knew I was glad they decided to take me serious. I may not know much but I know my kids and I knew something was VERY wrong.
They said it would take a few hours for the MRI results so I decided to try and get some sleep. At 1:30am I was woken up to a room for of doctors. One of them started talking to me about what they saw on the MRI. Harvey had a brain aneurysm that had ruptured. Had he not gotten the drain 12 hours earlier he would not have survived the rupture. Nothing else they told me mattered. We needed to do whatever it was going to take to fix him. I was terrified. I called my husband and told him what I knew at that point which wasn’t much, he has an aneurysm and needs surgery within the next 12-18 hours. They were sending the surgeon to talk to me as soon as he had a plan. My husband and Piper came to the hospital so he could be there when the doctor arrived.
Apparently this isn’t something that happens to babies. This happens to adults in their 60s. The doctors were baffled. They had no answers as to why it happened but they knew it needed to be fixed. The surgeon talked to us about the risks of surgery and there was no question other than, “When can we do it?” We were absolutely terrified. We were told he would need therapy to regain strength and learn how to roll over again, sit up and crawl. He could lose most of his fine motor skills. On Sunday, September 21st Harvey was taken in for surgery. He was in surgery for 7 hours. They were able to successfully clip one of the aneurysms but there was another one. A much larger one but it was clotted and had no active blood flow so they decided to leave it and see if it would reabsorb like it was supposed to. We would follow up 10 days later with an angiogram to see if the surgery was successful.
The next several days were the worst. Seeing our baby intubated, his head cut up and beginning to swell. He no longer looked like himself. His eyes swollen shut. It took about 4 days for the swelling to go down before he could open his eyes. He still had so much fluid and pressure on his brain though. He would try to move his arms and he started kicking his legs. Two things I had prayed we would see again. Five days after his surgery I was able to nurse him for the first time. It had been a week since I had nursed him and I was anxious, scared, excited. I didn’t know if he would know what to do or not. But he latched on immediately and started gulping. So much so that he started vomiting. I was crushed but determined to get him better I asked if I could give him 1 oz bottle of the breastmilk I had been pumping. I knew his tummy wasn’t ready for the meal he was wanting. So over the next several hours I gave him a 1 oz bottle and he gulped it down. After he kept down a few I decided to try nursing him again. He nursed like a champ and kept it down!
The next few days were filled with EEGs, Echo of his heart, bloodwork… so much bloodwork and another CT and MRI. At this point it was a waiting game. We wouldn’t know much until the angiogram. Every day he looked better though. He was nursing longer each time and even started fussing between feedings to nurse even more. My husband continued to bring Piper to me throughout the day and the other kids got to come visit me every other day. We were lucky enough to have my mother in law, sister and mom be able to help out and stay with them at the house so my husband wasn’t packing them around all day. He started OT and PT almost immediately and they were amazed at his daily progress. He was slowly turning into himself again. But the one thing I had wanted more than anything still hadn’t happened. I needed a smile. On day 10 he had his angiogram. That was the longest 90 minutes of our lives. But all was clear. The aneurysms were GONE! He still had a lot of blood and his ventricles were still enlarged but he didn’t need another surgery. We were so relieved. That meant he could really start healing.
Two weeks after we went to the ER, twelve days after he went through surgery he smiled at me while he nursed. He looked up at me and smiled, milk drooling out of his mouth. It was that moment I knew everything was going to be ok. My baby boy was back. He hasn’t stopped smiling since. He’s had a couple more CT scans and they show less blood and smaller ventricles each time. He’s becoming more active and much more vocal every day. He now knows it just takes a little fussing and I’ll nurse and snuggle him. Today is day 20 and we are beginning to wean him off of his drain. We have to be sure that his brain can properly reabsorb the fluid before it’s removed. If it can’t then a shunt will have to be placed. But considering 20 days ago our son could have died, a shunt is the least of our worries. I never imagined as a parent I’d feel so helpless. I never imagined something like this could happen to us. This has turned our world upside down. Every day I hold my breath fearing we will have a setback or they’ll tell me something else is wrong but this little man has proved everyone wrong. He’s proved to us all what a fighter he is. Our son is my hero. He has given me the strength to endure things I never imagined as a parent. This has bonded my husband and me together in a way I never knew we needed. As much as I want to ask “Why him? Why us?” I won’t. It happened. It has been a struggle but we are all still here, we are all still fighting and we will take Harvey home. Not everyone is so lucky to leave this hospital with their baby in their arms.
