“I've discovered that sometimes God wants us to live inside of the questions. Sometimes he wants us to linger in the waiting, hoping, praying. In fact, sometimes it's right in the middle of our darkness, in the middle of our crisis, in the middle of our Plan B struggles that God speaks most clearly.” –Pete Wilson, Plan B: What Do You Do When God Doesn’t Show Up The Way You Thought He Would?
I bought this book when I was pregnant with River. We’d been through A LOT the 3 years before (high risk pregnancy, being diagnosed with 2 more autoimmune diseases -for a total of 3-, open heart surgery for Matt, Matt losing his job and being without a full time with benefits position for 18 months, financial troubles, etc) so I thought we’d been through our Plan B. I thought we were on the other side of it. I had no clue where we were headed. I’ll be honest: I still haven’t finished the book. River was born and I learned God had a whole other Plan B for me and my family and I’m still trying to wrap my head around that.
(Disclaimer: I didn’t blog about this in real time, I didn’t facebook it, and other than with very close family and friends we didn’t talk about it. That was just our decision and it’s still one I feel was the right thing for us. It wasn’t easy and we didn’t have the full support of family and friends at times… they wanted to share everything, but we never had peace about that. We knew God was calling us to wait on Him, to be still, and to trust in Him for His timing. I knew that people were praying for us even without knowing all the details and I knew –and know- that God moved. He had the details after all. In times of crisis yes, you do want people praying… but what I didn’t want? I didn’t want my son becoming the dinner table gossip. If you weren’t going to be lifting him up in prayer then quite frankly I didn’t want you talking about him or us. I believe there is power of life and death in the tongue (Proverbs 18:21) and while my sweet boy’s life hung in the balance I only wanted edifying, encouraging, LIFE spoken over him.)
When God tells you to be still you do it… and two days after our son was born and Dr’s were telling us he’d had a brain bleed while in the womb God told me to be still. He wasn’t done with River. He’s still not, but He’s made it clear He is ready for me to be the vessel in sharing parts of this story and to bring glory to His name. River’s story is already written and God knows what that entails, but I do not. I don’t know what the future holds for my sweet boy, but I know who holds it.
Back to the beginning… despite my high risk pregnancy I never for a second was worried about the health of River until the finals weeks of our pregnancy. (At the end I did become concerned as he started failing almost all of our BPP's which would lead to being admitted for observation, but without fail I'd be discharged within 24 hours and we'd start the whole process over again.) Because of my high risk pregnancy I’d had a targeted ultrasound (basically an hour and a half long ultrasound where Dr’s look at the heart, lungs, brain, stomach, everything for potential problems) at 20 weeks which showed a perfectly healthy baby. We were thankful, but not surprised. We’d already had one healthy, beautiful baby with no issues. I don’t know if I was just naive or if God was protecting my heart by not allowing me to think of any other outcome other than a healthy baby. All I know is I was not prepared… that’s probably a blessing in disguise. After all if I had known there would have been nothing I could do about it. It would have been just months of fretting and blaming myself, months of tears, months of worry, months of stolen peace.
I think I was still in a haze of pain meds and shock over an emergency c-section and having River in the NICU when we were told about the bleed. I don’t remember who told us, I don’t remember much at all about that conversation…other than being scared. That conversation just seemed to be the starting point for millions of more that scared us. The bad news kept piling up and it got harder and harder. It didn’t stop at Day 2 when we learned about the bleed (by way of routine ultrasound). On Day 4 River was struggling to breathe (even though he’d been extubated days before and doing great on room air) and spitting up blood. He was re-intubated for bad blood gases and tests were ran- we were told he’d had a pulmonary hemorrhage. (Days later one of R’s neonatologists hypothesized he hadn’t had a pulmonary hemorrhage, but rather a clot from his brain had broken off and caused the distress and blood in the lungs, but we’ll never know.) He was given blood and plasma and started on antibiotics in case of infection. In the NICU you learn to be thankful for stable. You stop caring about progress and good reports and start praying for stable days where nothing happens… even the good days wear you out because you’re waiting for the other shoe to drop. We had a couple days of stable and felt comfortable enough to sleep at home instead of the hospital. Our first night home (Day 7) the phone rang at 1 AM. River’s sats were dropping even though he was still on the vent, his blood sugar had shot way up (a sign of stress in infants), his hematocrit and platelets had dropped. He was transfused platelets. They switched him to a different vent, an oscillator. Imagine a jack hammer and you’ll understand what an oscillator is. It makes the same noise as it literally shakes your child. It’s heartbreaking. Dr’s weren’t sure what was going on- maybe he’d had another bleed, maybe a clot had broken off, maybe a seizure. When some tests came back and his CO2 was through the roof (it was 180 during the episode during the night) we learned that most his vent had gotten clogged. They weren’t suctioning his vent because of the pulmonary hemorrhage so his C02 went sky high and likely caused his body to go into distress. On Day 9 he was able to be weaned off the oscillator and back onto a regular vent. On Day 10 he was extubated. On Day 11 despite great blood gases and high sat’ing River kept having moments of dropping his sats, holding his breath, gasping, etc. They ran labs which were mostly normal aside from his calcium and sodium being low. They adjusted the meds and he stopped de-sat’ing. On Day 12 we had a stable day. On Day 13 River stopped breathing. Multiple times. I will never forget holding him in a rocking chair as I watched him very simply stop taking breaths and go blue. I will never forget standing behind the nurses as they bagged him. The doctors were baffled. One minute he’d be high sat’ing and the next he wasn’t breathing as we watched his sat’s and heart rate plummet. One of our sweet resident’s came to talk to me. He said they weren’t sure if they should place him back on the vent considering he was high sat’ing most of the time. I asked him to please reintubate and they did. They ran labs and once again calcium and sodium were low. They adjusted his iv med’s to straighten this out and in less than 24 hours we were back off the vent and stable. It seems his body had a metabolic reaction to his calcium being low. Calcium causes our muscles to contract and when River’s got low his muscles (lungs) stopped contracting. Through all these ups and downs the news of the brain bleed had slipped to the wayside. We simply had too many other scary things happening from one moment to the next to even think about the bleed. All we’d been told was the damage was done and at discharge we’d be set up with a pediatric neurologist who would follow River.
My sweet River on a bad day at UAB
On July 30th we left the NICU and went downtown to eat dinner. When we arrived back in the room our nurse (one of our favorites, Amanda) was trying to calling me. She looked heartbroken and my heart sank. I don’t know who started the conversation, but we learned we were being transferred to the local Children’s Hospital for neurosurgery observation. Over the last couple of days River had started to exhibit some symptoms of increased pressure in his brain from his brain bleed (clinical term being IVH- intraventricular hemorrhage). His eyes were drooping, he was irritable, and his head circumference had suddenly shot up after weeks of being stable. When these things start happening it usually means the person needs to have surgery to have a shunt placed. UAB doesn’t do pediatric neurosurgery, so we had to go to Children’s to simply be evaluated. I cried and cried. The RNICU at UAB had become our home and more importantly we had hand-picked our care team and I completely trusted them with my son’s life. There were a few of them who I knew had come to love my sweet boy and we loved them right back. We did not want to, but we had no choice- we had to go where River could get the help he needed.
River a couple of weeks into our stay at Children's Hospital
We transferred to Children’s July 31. (I was blessed that one of my wonderful friends works there in the NICU and I was able to have some peace of mind because of her and a few other nurses we came to know and love.) “Wait and see” become our motto at Children’s. Once River was assessed by his neurosurgeon (who we are grateful we have not needed his services, but also love him!) we felt better as he let us know River was not an emergent case and at this point our game plan was to “wait and see”. We established a plan of twice weekly head ultrasounds and twice daily tracking of his head circumference. I spent most of my days texting my close friends and family, “Head circ up. Ultrasound the same. Keep praying.” Or, “Stable head circ, ultrasound same. Keep praying.” While we were grateful River wasn’t requiring surgery we were exhausted not knowing what was coming.
River was now having stable days and even making progress. We’d had no scary episodes since a few days before we left UAB and we fell into a predictable pattern at Children’s- except for feeding which was a nightmare. While at UAB he’d been on and off the vent so much he’d not had a lot of chances at bottle feeding, but when he did River had done great. Once we got to Children’s he wanted nothing to do with his bottles and most of his feeds were given through the NG tube down his nose. He started refluxing and projectile throwing up feeds and meds. We started working with Occupational Therapy. We very slowly worked up to taking an ounce by mouth during day feeds, but he seemed to stall out at an ounce and rarely did more than that. Doctors began encouraging us to think about having a g tube placed. Let me interrupt here by saying we have another child and she was 3 years old at the time… I told my mom one day that I had never questioned any decision I made for Briley. I’d never felt unsure, but with River…from the moment he was born I felt unsure. I had no clue what was best for my son and that was very hard to stomach. We weighed the pro’s and con’s of a g tube. Agreeing to the g tube meant we could come home from the hospital and work on bottle feeding at home. We’d be away from the risk of infection, we’d be together as a family, we’d be HOME (after 8 weeks in the NICU and living in a hotel this was rather appealing). I was struggling with the thought that if we agreed to the g tube did that mean we were giving up on River and not giving him a chance. Some well meaning people made me feel like we were giving up God by agreeing to the g tube. We prayed about it. We talked about it as a couple. Over and over. It was and remains one of the hardest decisions I've ever made. We told the doctors we’d like to give it a week and see what kind of progress River made with bottle feeding. If it was a lot of progress we would continue to work on feeds in the hospital. If not we would set a date for g tube surgery. 10 days later he had made no progress. On August 25th he had surgery to have a g tube placed and for a fundoplication (a procedure where surgeons wrapped part of his stomach around his sphincter to control reflux). We began to learn the in’s and out’s of his g tube and prepared to go home. We experienced some mild set back’s (bleeding around the g tube site, brady’s during bottle feeds), but we finally brought River home on September 8th, 2011 (exactly 8 weeks old).
Heading HOME!!!
Where we’re at now is a whole other post in itself. I would like to say that God moved mightily and we’ve seen no issues stem from the brain bleed River experienced in utero, but that is only half true. We HAVE seen God move mightily… he spared my son’s life and he is here, on this Earth, with our family and for that I will give Him eternal thanks. Unfortunately though River does have damage from his bleed and that has led to a lot of developmental delay. Like I said… another day, another post.
So there it is… 13 months later (on God’s timeline, not mine) my sweet boy’s story… but just the beginning. I don’t presume to know the plan God has for River, but I know it’s big. When River was in the NICU I would stand over him and pray many, many things, but always that he would one day “stand, walk, talk, and proclaim the works of Jesus” in his life. I believe that with my whole heart and I hope if you’ve made it this far and read this short novel ;) you would be encouraged to only speak encouragement over and about River. We welcome any question’s you might have, but do understand that at the heart of this it is intensely personal and there are some things that we choose to keep confidential because we feel it best for River and best for our family. “Wait and see” still remains the mantra for life with River. He is on his own timeline and he’ll do things when he does them… it’s just our job to believe he WILL do these things and to work with him on these things.
Thank you for all the love and support our family and friends (that have known all this) have shown us. There were many days when a text from one of my best friend's, a card from my mom, or just a hug and someone to cry with were the only things that got me through the day. I have seen the love you have for my son (and I get it... he's pretty impossible not to love ;) and it means everything to us. Please keep praying for him, for us, for Briley. We love ya'll!
Posts
