Tender Mercies

I have so much to blog about. Warning-- this is going to be LONG. Taylor isn't here to grammar check my post so please no judging. Haha! I don't care about proper grammar right now. 😁

     Wow! Seriously can Denver just catch a break? My poor baby has been through so much lately. As a parent you just wish you could take away all of your babies trials. Since I can't take away his trials I will just try and be the absolute best mother I can to our sweet Denver. 

       I am going to start from the beginning of last week--

      Monday (June 29th): Taylor and I always pray for Denver. We pray that we will be good parents to him. We pray that we can be guided by the spirit so that we will know how we can help him. We pray that his lungs will get stronger. We pray that he will be happy and healthy. We pray that he will breathe easy. We pray that he will start to eat better. You get the idea. We pray all the time. I woke up and told Taylor that something was wrong with Denver. Ever since Denver was in the NICU he has struggled with his eating. It's been so hard because how can something that seems so natural be so hard for him? Every time we tried to feed Denver he would gag, choke, or stop breathing. It was getting worse and his oxygen needs seemed to be going up. For MONTHS I have asked several different doctors to do a swallow study on Denver. They kept brushing me off or telling me it wasn't necessary because he didn't need one. It was so frustrating but how do you tell a doctor they're wrong? 

      Finally Monday morning I was done. I knew he needed a swally study because I knew in my heart something was wrong. Taylor told me to not be nice and to call up the doctor and demand a swallow study! Haha! I got brave and did it. I told them that I thought D was aspirating and I was scared and they finally listened! They scheduled a swallow study for him on Thursday. They also told us to stop feeding him by mouth and just feed him by his ng tube. The doctor also told us that we needed to call a pulmonologist(lung doctor) and make an appointment as soon as possible. He said that if I was right about D aspirating then his lungs could be compromised. 

       I called Primary Children's and asked to make a appointment for that week. They told me that there next available appointment wouldn't be until AUGUST. Say what? I was instantly mad. The doctor just told me that my babies lungs could be in trouble and you're telling me you can't see him until August? I told the lady that I would personally call D's GI specialist (also a doctor at primary's) and get him to make an appointment for me. Boy did her tune change! Haha! The next thing the lady said to me was, "how about tomorrow?" 

        Tuesday (June 30th): So many tender mercies happened this day. I haven't really talked about this before, but Denver has what they call Chronic Lung Diesease of Prematurity. Basically it's something D can outgrow if treated properly but it could lead to long term problems as well. That is the reason we stay in our house 24/7 and don't have visitors over. That is also the reason my hands look like prunes because I wash them 1000 times a day. If Denver gets any type of sickness even a little cold it could be very life threatening to him and his lungs.  

     Anyways.. We got to D's appointment and met the pulmonologist, Dr. Asfour. We told him all about D and we also told him how Denver has started to cough a lot lately. He prescribed Denver a inhaler. Have you ever heard of a baby on an inhaler? Poor thing. We have to do his inhaler treatments once in the morning and once at night. He is on albuterol & Qvar. Albuterol helps open up his lungs and Qvar is a steroid that helps reduce inflammation of the lungs. 

      The doctor left the room and the nurse came in to give us instructions on how to use the inhaler. While Tay was holding Denver he started to cough pretty hard. I took Denver and started to pat him on the back... He started throwing up very very violently! It came out of his nose and mouth. He couldn't breathe. He was gasping for air and choking on his vomit. It was on of the scariest moments of my life. His cannula was feeling up with throw up so he couldn't get any oxygen. The nurse ran to get something to suction his nose out. I looked at Tay and told him to get help. D's face was turning bright red and his eyes were watering and he literally couldn't breathe. The doctor came running in and took D from me. The doctor kept patting Denver's back trying to get him to breathe. I was using my shirt to wipe D's nose and mouth. I was trying to get his nose and mouth clear so he could breathe again. The doctor wanted to send us to the emergency room next door, but things started to settle down after a few minutes. The doctor was very concerned about Denver's lungs because he knew that he had definitely aspirated. 

        We were sent over to Radiology so that they could x-Ray D's lungs. While we were sitting in the waiting room Tay and I were both silent. I think we were just in shock and scared. Our poor Denver was struggling so hard. I remember saying a prayer in my head just asking Heavenly Father to help Denver be ok. I was scared. I was holding back my tears because I was sick of crying. 

        A guy that I had saw in the waiting room of the pulmonologist office started walking over to us. I noticed him staring at me when I was checking D in earlier. I figured he was just looking at me because we have so much equipment attached to D. We are like a walking circus so we get lots of stares ;). Anyways... He walked up to us and said, "Wow what a beautiful baby. What's his name?" We answered him and he then told us that that was him not too long ago. He pointed to his 11 year old daughter (who was playing with her brother a few feet away) and said she use to look just like your baby. We started talking to him and exchanging stories of Denver and his daughter. Though there was a huge difference in age there situation(s) were extremely similar. Almost identical. We ended up finding out that he was also LDS and had attended Byu too. He told us that he had felt inspired to come talk to us. He assured us that it would get better. He told us to follow the spirit. It was so so comforting. We ended up being called in so we had to tell him bye. 

     As we were driving home Taylor and I both started to cry. This is unusual for us.. Haha well not for me! I cry on a daily basis, but Taylor doesn't cry very often. We weren't crying because we were sad. We were crying because we were completely overcome with the spirit. What a tender mercy of the lord. We were having such a hard time and the Lord knew and he guided someone to come help us. I don't think that guy will ever realize just how much he helped Taylor and I that day. We needed some hope. We needed to know our baby was going to be ok. It was an answered pray. This just goes to show you to always follow the spirit.  Always follow spiritual promptings. The Lord will never leave you alone. What a tender mercy. 

      Shouldn't Tuesday be over? Hahah nope more doctors appointments! We also had D's  circumcision scheduled for later that day. Poor Denver... But we had to get it done and this was the only day they could get us in! They told Tay & I not to go in the room while he got it done because it was too hard on us. We told them that we weren't leaving D alone so the let us go.  Man oh man it was brutal. I hate how they have to strap his little arms and legs down. I sat up by his head and talked to him and tried to calm him down. They gave me cherry syrup and I dipped him binki in it and he was LOVING it. It was so cute. He was going to town chowing down on that bink. He was covered in syrup after it was over! He was so so sticky! Hahah! Another tender mercy... As we were packing up to leave. The receptionist came back in and told us that she refunded us the money for the procedure (our insurance didn't cover it). We were so confused. She told us that our pediatrician didn't want us to pay for it because he thinks we have already been through enough. It was such a sweet thing for him to do. Made our day! 

    Wednesday (July 1st): No doctors appointment today. Hallelujah 🙌

     Thursday (July 2nd): We finally had Denver's swallow study today! It was the most fascinating thing to see. I think Taylor recorded a little bit of the swallow study so I will try and get the video and post it soon. A speech therapist met us in the room and asked us questions about D before we started. They had two different types of liquids... Thin liquid (like breast milk) & a thick liquid (like nectar/gel). We told her that we think he is aspirating so she said she would try the thick liquid first. The liquid is mixed with something called barium (it's a special liquid that shows up on the x-Ray). They had us sit him in this little chair.. It was so cute.. He looked so big sitting up. There was an x-Ray machine right next to his head so they could see the liquid going down as he was swallowing. They turned the machine on and gave him the bottle and he started gulping it down... I was so surprised that he liked it and was drinking! He is such a picky little guy and that stuff looked like a bottle of chalk 😝. 

     The doctor and speech therapist were watching the x-Ray as D was drinking and they kept saying "oh wow" "did you see that penetration?"... Tay and I were so confused. We wanted to know what they were seeing! Finally after 10 minutes they said he was done. Basically they said that when he would swallow he would get up to the point RIGHT BEFORE aspirating. They didn't even attempt to do the thin liquid because they said he would of 100% aspirated on it. They told us before we left to not feed him by mouth at all because it could be very dangerous for him. 

      We left feeling relieved and overwhelmed... Well I know that's how I felt. I also felt mad at myself. I should have demanded this be done in the NICU. My advice to anyone who is reading this: ALWAYS always follow your motherly/fatherly instinct. The chances are you're probably right and if your not who cares? I learned a really valuable lesson after today. I will always be Denver's advocate. I don't care if the doctors don't agree.. They don't know my baby like I do! 

     Friday (July 3rd): Tay left this day. Worst day ever. I seriously cried all day. Taylor actually got this job offer to work for Key Bank back in November of 2014. We had been planning to move to Ohio for a long time. Denver was suppose to be born in May and then we would move in June. Hahaha...I laugh when I think about our plans because D changed everything.   While D was in the NICU we were still planning on moving in June.. The doctors said it shouldn't be a problem. Well as the date came closer we realized that Denver and I would have to stay behind for awhile. D was just getting worse with his health. I didn't want Tay to leave us but I knew it was in Denver's best interest for us to stay. 

 

       Skip all the way over to Monday (July 6th): We had D's follow up GI appointment. His doctor, Dr. Jackson, was really worried about him. Dr. Asfour (lung doc) called him over the weekend and told him that he was worried about D. Everyone is as worried including Tay and I. Dr. J advised us to get surgery scheduled for him asap! The doc wanted him to get a g-tube placed in his stomach because he won't be able to eat by mouth for awhile. He also wants him to get a surgery called nissen fundoplication. This surgery will make it where D can't throw up or reflux. The reason we would do this surgery is because every time he refluxes(which is does ALL the time) and throws up he aspirates on it. It's causing damage to his lungs and hence probably why he requires oxygen still. Our hope is that these two surgeries will fix his problems. There are drawbacks from the Nissen surgery but we have decided the pros outweigh the cons. 

      Thursday (July 9th): We (me & my mom) met with a surgeon at Primary Children's Hospital and talked about how the surgery would be preformed. The surgeon was very confident and knowledgeable which made me feel really good! We are waiting to hear back from the surgeon about what day we can schedule it for. Hopefully as soon as possible so Denver won't have to struggle much longer. I am happy and nervous for this surgery. I am happy that it should help and make life easier on all of us especially our little babe. I am so so scared for them to take him back to surgery. The will have to intubated him again (meaning they will put him on a ventilator during surgery). The surgery will take about 2 hours and they think he will be hospitalized for 3-5 days. 

    We are so grateful that Denver is here and he is alive. We never anticipated that he would struggle so much after leaving the NICU. I am so grateful for amazing doctors. I am also so grateful to live by such a wonderful children's hospital. I know D will bee in great hands. Please pray for our little D. 💙