We found out during Corrie’s 20 week appointment that Brooklyn had a heart defect. This was difficult news and started us down a tough road. Over the course of Corrie’s pregnancy, we had regular appointments with her OBGYN (Dr. Grogono), perinatal specialist (Dr. Harstad), and pediatric cardiologist (Dr. Finnigan). We saw small victories and set backs as things progressed, but one thing stayed consistent – she had a Ventricular Septal Defect (VSD or a ‘hole in her heart’). The plan after she was born was to have the cardiologists perform an Echocardiogram directly on her chest to get a better view of her heart sometime during her first 24 hours. She would likely need open heart surgery sometime during her first 6 weeks to 6 months. Our last appointment (11/13/12) with Dr. Harstad revealed elevated levels of amniotic fluid, so Dr. Grogono made the call during our appointment with her later that afternoon to immediately admit Corrie to the hospital and induce the next morning. We were about to meet our first child!
November 14, 2013
Corrie labored like the unbelievably strong woman she is for close to 9 hours. She got very close (almost 9cm) before having to have an emergency c-section because Brooklyn’s heart rate dropped off. This was an incredibly dramatic experience. Our OB later told us that she had to make multiple decisions that would each save 30 seconds to several minutes. This resulted in our beautiful Brooklyn being born at 5:16pm, 9 minutes after they made the decision to have the c-section. She was 37 weeks, 3 days. Adam was the first to find out the gender because Corrie had to go under general anesthetic. We had waited to find out the gender and we were confident the baby was a boy, so Brooklyn was definitely a HUGE surprise when Adam told Corrie in her recovery room a couple hours after delivery! Due to her size (4lbs. 5oz.), Brooklyn was immediately taken to the NICU for close monitoring.
November 15, 2013
Corrie wasn’t able to meet Brooklyn until after midnight that first night because she was recovering from surgery. I was able to show her pictures on my phone, but that first meeting in the NICU was beautiful. After piecing together a couple hours of sleep that first night, Corrie and I met with Dr. Lloyd, the neonatologist who had been taking care of Brooklyn in the NICU overnight. We didn’t expect to meet with him so early in the morning, but he came down to Corrie’s room to let us know Brooklyn had stopped breathing several times throughout the night. We were shocked, didn’t know what to think, and scared. We knew she had a heart defect but our expectation was that she would be fine for several weeks or months before needing surgery. These breathing issues were unexpected and a complete surprise. Dr. Lloyd told us that they had started some tests overnight and would continue running tests throughout the day to find out what was causing her to stop breathing.
We were able to see Brooklyn several times throughout the day as they continued to run tests. She eventually was intubated (breathing tube) to help her out. They ran an EEG scan (brain scan) late in the day that revealed she was having seizures, and the seizures were ‘presenting’ themselves in these breathing problems. We learned infant seizures don’t always show up in the normal shaking we associate them with in adults. The neurologist at Dell Children’s Hospital requested an emergency transfer of Brooklyn to Dell from Seton. So, Brooklyn and I said bye to Corrie and family and headed across town to Dell. This was incredibly difficult for us. We hated being separated from each other.
November 16, 2013
This was a very difficult day because Corrie was still recovery from her major surgery at Seton while Adam was at Dell Children’s Hospital with Brooklyn. Adam’s day was filled with 5 hours of meetings with multiple doctors, specialists, nurses, geneticists, etc. As he tried to digest all of the information he was receiving, Adam received some particularly difficult news from a neonatologist. The doctor informed Adam that there was a 50/50 chance that Brooklyn had the life limiting chromosomal deficiency, Trisomy 18. Brooklyn’s current condition, physical features, etc. were atypical, so Adam still had a lot of hope that she didn’t have Trisomy 18. Adam decided to wait to tell Corrie this devastating information because he knew that Corrie would want to abandon her recovery and be with our girl.
November 17, 2013
Adam left Dell Children’s for a surprise visit to see Corrie at Seton. Corrie was definitely surprised and excited to see him, but this quickly changed when he delivered the potential devastating diagnosis. Corrie, Adam, Corrie’s mom, sister-in-law, and best friend were in the room and immediately began pleading with God to heal Brooklyn. As Adam expected, Corrie immediately wanted to be discharged and hold Brooklyn at Dell Children’s. Thankfully, she had healed very quickly and the doctors released her to go be with Brooklyn. Corrie had only been able to hold Brooklyn for seconds, literally, while she was still at Seton because Brooklyn was having some complications. This reunion at Dell was so important and a blessing because Corrie was able to hold Brooklyn for several hours!
November 18, 2013
Once Corrie got to Dell we started settling in. We had a room to sleep in every night and our hands were always clean after having to ‘scrub in’ 100 times each day. Ok, maybe only 10 times each day. The doctors and nurses were trying to keep her comfortable and help her progress along while we waited for more answers from pending tests. Brooklyn was extubated (breathing tube removed) and nourishment and meds that were being given through an IV switched to a feeding tube. They also stopped the EEG scan and determined the anti-seizure meds were working great…she hadn’t had a seizure since she was at Seton! Corrie and I lived in the NICU and got to know a lot about how she was being taken care of. The NICU staff also became part of our family…they really are amazing people.
This is how life looked until one of the big test results came back the day before Thanksgiving, 11/21/12.
November 21, 2013
Corrie and I took a break to grab dinner in the hospital cafeteria. We returned to Brooklyn’s room to find that one of the nurses had put Brooklyn in a cute outfit and set up her room for a photo shoot! Today was her 1 week birthday and this meant so much to us!
After the photo shoot, the head neonatologist, Dr. Hodges, came in to our room with test results. 100 out of 100 cells revealed that Brooklyn had 3, instead of 2, #18 chromosomes…she had Trisomy 18. The news we didn’t want had arrived and we were crushed. The complications that come with Trisomy 18 meant that Brooklyn didn’t have much longer to live. The doctors’ consensus was that there was a low probability that she would survive past her 2nd week birthday. Corrie and I spent a long time crying and holding our daughter knowing that we would likely only have 1 more week with her. 50% of babies with Trisomy 18 aren’t born and 50% of those that are born don’t make it passed the first couple weeks. Since she had already beaten the odds, we prayed for her to continue fighting and messing up the statistics.
While delivering the news of her diagnosis, Dr. Hodges informed us that we would need to make some difficult decisions. Adam couldn’t sleep that night, so he asked the nurses to page Dr. Hodges so he could talk with him. From 1:30am – 3:30am, Adam & Dr. Hodges discussed these questions. The decision we had to make was regarding Brooklyn’s care. The two options were Intensive Care or Comfort (Palliative) Care. Intensive Care meant that the doctors would do everything medically available to them to keep Brooklyn alive. This meant intubation, extubation, CPA (potentially breaking her ribs), heavy medications, etc. Palliative Care meant that Brooklyn’s care would be designed to keep her comfortable. This meant that she would only receive medical interventions that kept her comfortable – oxygen, morphine (helps with pain & cuts off the communication with the brain that says you’re having trouble breathing), Lorazepam (calms patient and helps slow down seizures), etc. He informed Adam that there was no ‘right’ decision and they both presented Corrie and him with terrible decisions. Wisely, he told Adam to only discuss the options with Corrie and the Lord. This was a decision for us to make on our own.
November 22-23, 2013
The next couple days had us celebrating Thanksgiving (11/22) in the NICU and lots of prayer and discussion about how we were going to proceed with Brooklyn’s care. One of our biggest prayers was that God would unify us, interdependently, around this decision. The last thing we wanted was to be divided and have to walk this out even further. Thankfully, the Lord unified us after 36 hours of intense prayer and discussion to go with Palliative Care. I firmly believe that this decision is extremely personal and unique to each situation. Personally, we felt that because of Brooklyn’s diagnosis of “Full Trisomy 18” (there are variations of Trisomy 18 that have seen children living longer, etc.), we wanted her life to be as comfortable as possible. We felt that Intensive Care would give us the opportunity to tell people many years from now that “We did everything possible”. This seemed more about our comfort and pride at the expense of Brooklyn’s pain and discomfort. Ultimately, Brooklyn’s comfort was way more important to us.
November 24th – December 6th, 2013
Corrie and I were extremely anxious 24/7 as Brooklyn approached her 2nd week birthday. Thankfully, she beat the odds, again, and we continued to get more time with her. We were so grateful and began celebrating each day we had with her because they were each a gift. We continued to spend every day and night with her at Dell Children’s and began to see that she wasn’t declining…awesome! The doctors and nurses started to tell us that we could possibly take her home if things stayed the same. We were nervous about taking her home and assuming all of her care outside of the comfort of having a trained professional footsteps away. We prayed and trained. We learned everything we needed to know about her meds, oxygen, feeding, medical equipment, and even had to insert her feeding tube on our own. We took the leap and took her home on December 6th!
December 7th – March 12th, 2013
We settled in after a BIG adjustment to caring for her full-time at home. We had a routine where Brooklyn would get “gravity fed” through a syringe into her feeding tube and receive medications every 3 hours, around the clock. Brooklyn had weekly visits from her hospice nurse and visits to her pediatrician’s, Dr. Caldwell, office. Our time was difficult, changed every day, but we continued to celebrate each day. Our little family got to go to a Christmas Eve service, on walks, and a couple meals at restaurants. Most of those things slowed down to limit her exposure to people who could potentially give her RSV, the flu, or some other virus that would send her into a rapid decline.
Our time with her at home was incredible and where we created our sweetest memories.
March 13, 2013
Brooklyn started declining a couple days leading up to March 13th. We saw more labored breathing and her color begin to change. We called the on-call nurse at 3:30am on March 13th because we thought she was close to passing away. We held her closely, prayed, and begged for more time with her. The nurse arrived and Brooklyn stabilized. Adam hadn’t slept at all since since his shift started at 9pm, so he finally got to sleep at 6am. At 8am, Corrie woke him up and said she had called the hospice nurse again because Brooklyn was declining.
Brooklyn Olivia Hull went to be with Jesus later than morning. She lived 118 beautiful days.
Corrie and Adam continue to miss Brooklyn every day and long for the day they will get to see her again in Heaven. They continue to process their journey through the pain and joy on this blog. Their hope is that Brooklyn’s legacy will continue and that God uses their family’s story to draw them and others closer to Him.