Thursday July 14th – Made the decision to deliver.
Dylan, Addi and I went to Great Falls for our weekly checkup on Landon. The ultrasound revealed that he was no longer improving but getting worse. We found new fluid in his chest cavity, the level of amniotic fluid increased a lot and we saw right-side heart failure. With these new findings Dr. Key made the call that we needed to deliver within the next couple days. We decided to come to Missoula to give birth. With a long stay in the NICU in his future likely, we wanted to be in Missoula surrounded by our family and friends.
Dr. Key called Dr. Utter, a perinatologist in Missoula and they talked for a long time. Ronnie got our medical records together and we headed to Helena. We packed quickly and headed for Missoula. We went straight to Community Hospital. Papa met us there and picked up Addi. Within 15 minutes of being in the hospital Dr. Utter was doing an ultrasound. He came to the same conclusions as Dr. Key and agreed that delivery of our little man was the best decision.
I was admitted to the hospital and throughout the night they monitored Landon’s heart rate. They gave me more steroids to boost Landon’s lung development.
Friday July 15th – Landon’s Birth Day
First thing in the morning my wonderful nurse, Laurie, started prepping me for c-section. By 9 am I hugged and kissed Dylan, Emily, Jeff, Deaette, Mom and Jaci and walked into the OR. It was the most terrifying place I had ever been. I was so scared. Dylan had to wait to come until after I received the spinal block and was all hooked up on the operating table. There were 8 or 9 people buzzing around getting me ready and getting ready for Landon. It felt like I was abducted by aliens. All the bright lights, all the probing. Strangers doing things to all parts of my body. Once the spinal block kicked in, they draped the sheet and cut me open. Within 5 minutes Landon was out. He was born at 9:48 am. They laid him on my legs and drained some fluid from his abdomen. With some of the fluid gone they weighed him, 5 lbs. 6 oz and 17 inches long. He tried to cry after they removed the fluid. He made 4 or 5 little squeaks. Then the intibated him, worked on him for a bit in the OR. They wheeled him past me and I got a slight glimpse of him. I saw his little hand moving. He didn’t look as fragile as I was expecting. His head was grotesquely swollen as they said it would be. Then he was gone and we had no idea what was happening to him or how he was doing.
They finished stitching me up and took me to recovery. I saw a friendly face waiting for me, Aleta Miller. She came in to take care of me. I was able to relax a bit having her there.
Dylan went to be with Landon. He was away for a while and came back in tears. It was really hard seeing Landon so vulnerable and covered in tubing. It is unbearable to wrap our minds around what he has to go through in order to survive. It gets very overwhelming very quickly.
Around noon they were able to finally stabilize Landon. Dylan checked on him regularly and got updates. He initially was having issues with his blood. Something about his O2 and CO2 levels and the amount of acid in his blood. His heart was working at only 20 %. He has a machine breathing for him. They put in a chest tube to continually drain fluid from chest cavity.
At around 3:30 pm I got to see him. It was really hard seeing him so fragile. I felt so helpless.
All I could do was hold his little hand and hope that he could sense that I was near. He was heavily sedated and was not moving or responding, although he did grasp my finger.
He made it through his first 24 hours. Throughout the night, Dr. Chaundry and Landon’s nurses were constantly making tiny little changes in his fluids, meds ect to get everything right where he was most comfortable.
He has had several chest x-rays and blood drawn. His lungs are very small. Due to all the fluid in his abdomen there wasn’t much room for his lungs to grow. His liver on the other hand is huge. His liver was having to work overtime filtering all that extra fluid.
Papa took care of Addison this whole time. I talked to her before bed and she was very upset. Papa knew something was bothering her but he couldn’t get it out of her. She broke down on the phone and we learned why she was so upset. She said, “How is Landon feeling? Does he get to come home tomorrow?” When I told her no she broke down. She said, “I am not his big sister.” She was very upset that he has to stay in the hospital. She was feeling like she wasn’t his big sister unless he was home. Papa had the brilliant idea of letting Addi pick out something special for Addi to give Landon to keep in his bed. Brilliant Papa! Addi came back on Saturday and proudly gave her little brother a little pink bunny to keep near him. It made her feel a lot better. We told her that when Landon sees his little pink bunny he will know that his big sister loves him. Addi also got to see Landon open his eye and she held his hand.
Saturday July 16th – Day One
We had many visitors. It is wonderful having our family and friends here. I am so glad we decided to come to Missoula to have him. It was hard leaving Dr. Key, but I feel it was a good decision. Landon is in wonderful hands in the NICU.
Sara and Ellie got here late Saturday night. Papa, Sara and I went in to see Landon. We were just watching him, talking quietly. He opened one eye. We got a little excited and started talking to him. He was responding to our voices, but we were over stimulating him. When I would talk his little eye would move to my direction and when Papa talked from the other side of the bed his eye moved to Papa’s direction. He is very sensitive to noise and we really upset him. He heart rate increased and he starting flailing his arms and legs. The nurse had to pin him down to calm him down. It broke my heart. I couldn’t comfort him and talking to him upset him.
Sunday July 17th – Day Two
Landon had an uneventful night. BJ, Landon’s day nurse said it was uneventful, not boring, but eventful. Not entirely sure what that means. But he did not get worse. That is all I wait to hear. I let Dylan listen to all the medical jargon and translate to me.
By moving Landon into different positions they are able to use gravity to move the fluid. Some of the fluid had moved off of his forehead and he was able to get both of his eyes open. He even had a neck for a bit! He was a lot more calm this time. He does follow with his eyes. It is very sweet.
He had another echocardiogram this afternoon and his lung function took a huge, positive jump, from 35% to 70%! His lungs also expanded a little.
I was able to give Landon his first taste of breast milk. Using a Q-Tip I swabbed his mouth with breast milk. They will slowly introduce teeny tiny amounts of milk to get his system used to it.
I checked out of the hospital today. I am able to control the pain with Ibuprofen. I am actually feeling quite good. I can’t help but feeling guilty. My poor little man is lying on a table, likely in some pain, being probed and poked and scanned and bothered. I would give anything to take his place.
Saying goodbye to Landon and walking out of the hospital without him was the hardest thing I’ve ever done. I know he is receiving the best care possible. I just wish there was more I could do for him.
Eventually, his body will be start to regulate the fluid. Once his vessels are able to maintain the fluid and keep the fluid inside his vessels he will begin to pull all this extra fluid back into his vessels and pee it out.
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