Friday, January 3, 2014

Look for the Silver Linings

After hearing about Eli's fungal infection I was a little bit in shock. How could his health change so quickly? I was just holding and snuggling him last night and he seemed so calm and content. I was emotional and overwhelmed by the news. On top of that, my parents (who had been here all week; they drove all the way from Michigan, and we're so grateful that they came!) were leaving this morning so my dad could be back in time for meetings on Monday. I received a priesthood blessing from my dad and felt some comfort, but was still overcome with worry. I spent the next hour laying in bed, almost feeling numb and wondering how and why this was happening to us. I wished more than anything they could put Eli back inside of me where he would be safe. My heart ached for this little boy. I honestly didn't think I could take anymore bad news.

Then we got another phone call from the neonatologist. During all of the testing to find out the origination of the fungal infection, the doctor noticed something strange in an X-ray of Eli's abdomen. There was a pocket of "free air" outside of the bowel. Not good. She had already contacted a surgeon because she suspected that there was a hole in the bowel that would need to be fixed—immediately. She asked us to come to the hospital as soon as we could. Jason and I looked at each other, speechless. I felt like I had just been hit with a ton of bricks. It seems like this sweet little boy who has been fighting so hard can not catch a break.

After spending a few minutes with Eli, the neonatologist came to speak with us. She laid so much information on us; it was completely overwhelming. She said Eli had tolerated the spinal tap really well and they had performed an ultrasound of his kidneys. Both procedures did not have conclusive results yet. Another interesting comment the doctor made was that even though Eli was definitely fighting an infection, he had no manifestations in his behavior of being sick. He was still an active baby and his vitals were excellent. The neo doctor said the surgeon was making a call at another hospital, but would be coming by in a few hours to evaluate Eli and perform exploratory surgery to find the source of the free air.

In the NICU wing they have a room for parents to use for a night before they take their babies home so they can be near nurses and doctors in case they have questions or worries. The NICU staff was kind enough to let us stay (and try to relax) in that room while we waited to speak with the surgeon, anesthesiologist, and neonatologist. After 2 hours, the neonatologist told us that Eli had pulled out his ET tube and had to be re-intubated. I have to say, I can't blame him for wanting to pull something out—I would want to! He has so many tubes and wires all around him. Luckily, he was stable during the whole re-intubation process and there was no problem. She also informed us that the spinal tap they took earlier came back with preliminary results as being negative and the ultrasound of his kidneys was clear of infection also. We definitely needed some good news to hold on to! She informed us that the surgeon would be at the hospital within an hour and would talk with us then.

We went to see Eli before all of the operating team arrived. They would be doing the procedure right there in his NICU bed so they would need us to leave earlier so they could prep the room for surgery. Everyone left the room and Jason took the opportunity to give Eli a blessing. Eli looked so peaceful and content when we left him in his little isolette. He even opened his eyes and looked right at Jason and me with big, innocent eyes almost as if he were trying to tell us, "I'm still fighting!" We have the cutest baby ever. 


Before surgery

We spoke with the anesthesiologist who listed all of the medication he would be using to sedate Eli. With these little babies they also give them a paralytic so they don't move during the procedure. After signing our consent for anesthesia, the surgeon came in and spoke with us. He seemed very confident that they would be able to find the problem and fix it. Jason and I knew Eli was in good hands. As we were leaving Jason turned to me and said, "I have a feeling that there are people in that room that we can't see." I thought, that's so true. My sweet Aunt Marilyn just left us a few weeks ago, my Grandma passed away just over a year ago, Jason's Grandpa passed away a few years ago, and I know they were there comforting our little guy. We could feel the love and support of family alive and deceased. We went back to our little room, prayed and waited. The surgeon told us that it could be anywhere from 15 minutes to an hour and a half depending on what they found.

After surgery - he's still under anesthesia and was paralyzed so the ventilator was doing all of the breathing for him.
We waited for about 30 minutes before the doctors came back to speak with us. They found a teeny perforation in his intestine—only 3mm was removed. To ensure healing, they placed the intestine on the outside into an ostomy bag. When Eli is about 4.5 pounds, they will do another surgery to reconnect the intestine. It will probably be at least 8 weeks until that happens. For the next little while they are going to stop feeding him so he can heal and just focus on breathing and fighting the infection. They will continue to give him nutrition through his IV fluids (TPN). When he does get to eat again, he should be able to absorb a lot of nutrition from my milk because the ostomy bag is lower down in the intestine.

After being at the hospital for about 8 hours, we went home feeling glad it was all over and hopeful for Eli to make a full recovery. We immediately felt gratitude and said another prayer thanking God for all the miracles we saw today. Among all of the chaos, I tried to look for those silver linings. I had to find the small blessings that have happened so far. If Eli didn't have the fungal infection, the doctors would have never done an X-ray and the bowel perforation would not have been found until it was much more serious. I have truly learned that the Lord works in mysterious ways. We only expected to stay here in Dallas for the Fall semester during our internships, but we're happy we're here. We are also so blessed to have such supportive friends and family. It has been such a blessing living with Jason's parents; they are so kind and supportive. I knew this before, but this experience has reaffirmed to me that everything happens for a reason. Heavenly Father is always mindful of our circumstances and wants the best for us.

The first day we visited Eli in the NICU, the neonatologist told us that the next few months would be a roller coaster. When he said that, Jason and I both thought to ourselves, "yeah, yeah, not for us; Eli will be in and out of there in a few months and be just fine." One week and two days later, I can say it really has been one of the craziest roller coasters we've ever been on. We still have faith that Eli is going to be "just fine," but we hope that today was the biggest, scariest loop the roller coaster has to offer. If not, I think my hair is going to be as gray as my dad's by the time this baby comes home!

2 comments:

  1. Gracias por compartir esta experiencia de Dios, tan fuerte, tan llena de VIDA, con tanta incertidumbre pero llena de la prescencia de Dios. Ustedes tienen una mision grande en esta vida, esa es la razon por la que viven lo que viven, las lecciones que estan recibiendo no las podrian haber recibido de otra forma y hay mucho que tienen para dar a los demas y para ayudar a mas personas.....hay personas que estan pasando por lo mismo que ustedes pasan pero ellos no tienen FE, ni amigos, ni familia...estan solos...yo conozco a familias asi en el hospital...se que ustedes van a poder a ayudar a papas que pasan por lo que ahora ustedes estan pasando...solo viviendo una experiencia tan fuerte como la que viven pueden ser testigos del AMOR de Dios. Animo!!!...es verdad que la montana rusa por la que pasan no es facil, a ratos sentiran que ya no pueden mas...pero ustedes son una familia de "guerreros", Dios los ha ungido para llevar buenas nuevas, para consolar a los pobres, a los enfermos, a los que sufren, a los que estan solos....Hay mucha gente en mi parroquia y amigos en otros lados que esta orando por ustedes...seguimos en contacto...Animo!!! Fuerte abrazo y todo nuestro amor.

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  2. Beautiful journal entry Emily! Thanks for sharing your testimony of faith and love. Your little family is gaining strength in ways that we would never have imagined when we were celebrating at the baby shower. I feel confident that Eli is in wonderful hands as you have said. He is in our daily prayers as well as you and your family. Take good care! Love, Michelle and family

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