Busy season has hit our family full on for the past week and a half, and it will continue for the next two months. There is usually a partial sense of exhilaration and accomplishment associated with the start of busy season, and those feelings are there this time as well. However, certain circumstances at work are making this season especially trying. In light of that I wanted to write a few things about my family and other things that always seem to lift me up. I’m not the type of person that gets sad or frustrated when my family is doing fun activities while I’m working my way through seemingly endless issues late into the night (I realize that it is not always fun and games at home either; Summer always works much harder than I ever do at my job). I actually feel a lot better knowing that Summer and the boys are having fun together, experiencing joy, and are just plain happy. So here are a few stories that brought a smile to me recently and revived memories of so many good times from before.
The weekend before busy season started Summer and I wanted to make it to the Temple to recharge the best way we know how. That Saturday morning Summer went for a run at the community center and Coleson eagerly went with her. Coleson might have run about a mile before heading down to the basketball courts to watch some kids from our neighborhood play on one of the community teams. He sat next to KyAnn, who is a wonderful woman that lives down the street from us. When Summer came down after her run, KyAnn asked her when we would be dropping the boys off. Perplexed, Summer asked her what she meant. KyAnn replied, “Coleson told me you and Brian were going to the Temple and he asked if he and Ammon could come over to our home and have us watch and play with them. He’s got it all set up; so again, what time are you dropping the boys off.” Yup, Coleson set it all up, not much gets past this kid. That night we dropped the boys off at KyAnn’s house and they had a great time playing with everyone. KyAnn has a little girl that is about 3 ½ years old, Shayla. Shayla loves to play with Coleson, and when she was in nursery at church she would always talk to Ammon. She recently received a new baby girl doll. Apparently, she likes Ammon so much that she named her baby doll Ammon. KyAnn tried to explain that her doll was a girl and Ammon is a boy name, but that didn’t matter to her; the little doll that she loves to play with would be named Ammon, case closed. When we picked the boys up that night they were both so happy and had had a wonderful time. We were there for over 20 minutes just watching Coleson and Shayla run around the house, with no awareness that it was well past bedtime. As we left that night I was reminded of the goodness of the people that we are able to associate with on a daily basis, and this night also reminded me of the specific goodness this family has shown us in the past. Here’s the specific experience this whole night reminded me of.
About a week and a half after Ammon was born over two years ago, Summer and I were at home when a knock came at the door (we received a lot of welcome knocks on the door after Ammon was born). KyAnn also has three teenage daughters named Jill, Carrie, and Paige; and they were standing there on our doorstep. One of them handed me a thick envelope and simply said something to the effect of, “hope all is well, we’ll see you later.” Before I could really say anything more than thanks they were off the porch and heading home. I assumed the envelope contained birth congratulations or a get well soon card for Summer (it would still be quite some time before Summer would be able to do anything physical or quickly). I gave the envelope to Summer and we opened it together on the couch. There were no cards, but instead several pieces of paper, a couple of receipts, and two cards that looked like they were from Flying J (a gas station chain). We were confused to say the least. We quickly read the first page and it essentially said the following: “We heard about Ammon and understand that he will probably be in the hospital for some time, so we wanted to do something to make it easier. After thinking about it for a while, we thought it might be helpful if we could get you some gas cards to pay for the fuel in your cars as you drive back and forth to the hospital. We put together a short letter and passed it around the neighborhood explaining what we wanted to do and if together we might be able to purchase some gas cards. We gave a short deadline and people have been dropping off money at our house non-stop for the past few days. We were actually quite surprised about the incredible response and how much was donated, it far exceeded our expectations. You’ll find in the envelope two gas cards, one for each car. Each gas card contains well over $200 (around $500 all together). Thank you for letting us serve you and be part of this miracle.” It was signed by these three wonderful girls. Summer and I were obviously beside ourselves. I kept looking at the receipts and turning the gas cards over and over in my hands. It took us a half an hour to regain our composure before we could walk down to their house and somehow tell them thank you. I remember KyAnn stressing to us on that day that these girls came up with the idea, drafted the letter, purchased the gas cards, and everything else all on their own. They just couldn’t get over the response from so many people and had no idea it would be this big so quickly.
At the time I’d thought this was miracle enough, we had already been so greatly blessed, but here’s the interesting end to this story. For over two months Summer traveled daily, sometimes two or three times a day, to be with Ammon at the hospital. The drive was a little over a half hour each way from our home (when I drove to the hospital after work it was still about a half hour past our home). On the day after Christmas when we were going to the hospital to pick up Ammon and bring him home, the tank was empty and we stopped for gas. Almost without thinking at this point I slid the gas card into the reader and pumped the gas. I stood there in the cold brisk wind, pumping the gas, and eagerly thinking of being with Ammon. The receipt printed out and I noticed that the funds on the card had been depleted. I stared in stunned silence at the receipt and again just turned that gas card over and over in my hand. The card had perfectly paid for all the fuel that was required, right up until the last tank, for the last drive, for the last time we would have to travel to see Ammon instead of just being with him at home. I’ve thought many times since how interesting that was, and it is interesting isn’t it. Miracles many times have a way of making us think, and stand back in awe, even those miracles that involve three special young women, a neighborhood of good people, and a couple of gas cards.
Showing posts with label miracle. Show all posts
Showing posts with label miracle. Show all posts
Thursday, January 24, 2008
Monday, June 5, 2006
UDSF BBQ...
Saturday we went to the Utah Down Syndrome Foundation (UDSF) Davis County chapter BBQ. This is our first big event getting together with other families that have children with Down syndrome, and we were all excited and a little nervous. The nervousness, at least for myself, was centered primarily around not knowing anyone at the event, and slightly less so by not knowing what to expect. I felt like everyone would be friendly and cordial, but I was kind of worried of being the new "friend" among people that are already best friends. I was also concerned about Coleson's perception of the whole event, would he have fun, would he make friends, would he want to come again?
After some driving around we finally found the pavilion at the park and immediately we could tell this would be something special. There were balloons on every table, tied to plastic beach buckets with little shovels and several bottles of bubbles inside. The grass next to the pavilion was covered with inflatable watermelon size basketballs, golf balls, and baseballs, that were the perfect size for a little kid to kick or catch. A card table was set upon the grass with two girls sitting there doing a variety of face paints. Once we got our nametags on Coleson immediately ran over to girls and got a green crescent moon painted on one cheek (before the night was done, Coleson had a blue ladybug painted on the other cheek). A bubble machine was blowing bubbles across the play area, and two large buckets filled with bubble solution were set up so you could dip children's clothing hangers in them and then run around screaming while creating "monster" bubbles.
From the moment we arrived people started saying hi to us and introducing themselves. It was nice to put a face to some of the names that I heard before. Instant friends were almost an understatement with some of these people. One lady, Janet, came running up to Summer and neither could believe that the other was really there. Janet and Summer used to do aerobics together several times a week before Ammon was born. Janet and her husband live in our stake and have four beautiful girls and Aaron, a 9-month "big" baby boy that is right around 19 pounds (Aaron also has Down syndrome). Apparently, about two months before Ammon was born, Janet was one week short of being full term and gave birth to Aaron. Both Summer and Janet had heard from friends that "someone" else in the stake had recently given birth to a child with Down syndrome, but both were obviously very surprised they would actually know who the other person was. Now I don't know if you have picked up on an interesting little fact yet, but Aaron's names is, well Aaron (and Aaron's middle name is Ammon). In the scriptures, Aaron and Ammon were brothers that were incredibly valiant and powerful instruments used to bring thousands to a knowledge of the Savior. Thinking back on the experiences we've already had with Ammon concerning who he is and his time before he came to our family, I can't help but be reminded of the special little person he is, and the special big person he once was.
The night was a complete success in so many ways, and I just wanted to share two more of those with you. First, Coleson had a blast, he was an excited kid at a carnival. About half way through the night a smiling clown showed up (a very friendly, very round, fun looking clown, not the other type that some people get scared of). The clown wasn't into the whole juggling pins or spraying cold water from a fake flower, he was all about the subtle jokes and making balloon stuff, which in my opinion is the best kind of clown. Coleson and a bunch of the other kids received balloon swords, which were an instant hit, literally. The kids were whacking each other as hard as they could and just loving it. Coleson got into a sword fight with several other kids, two of whom were at least 9 or 10, and this is when we fully realized that Coleson will probably be just fine, if not much more than just fine, in the whole Down syndrome world. Summer noted that for once there were kids much older than Coleson, who Coleson was trying to play with and they were gladly playing back with him. Coleson could have cared less if the two had Down syndrome, he was just ecstatic to have older kids actually wanting to play with him. Coleson grudgingly left the event when it was all over with two balloons, two face paintings, an alien balloon figure, a shovel and bucket filled with two bottles of bubbles, and a big smile on his face. It seems like we've had a lot more perfect nights since Ammon joined our family.
Second, I wanted to tell you a little more about Aaron. It was awesome to talk with Janet about just a few of the experiences her family has had with Aaron. Aaron recently had open heart surgery, but you wouldn't know from looking at him (about 50% of children with Down's syndrome have heart problems severe enough that it eventually requires surgery, sometimes several surgeries). The scar down the center of his chest is a thin red line that almost looks like a scratch. The surgery was a success and he healed very quickly afterwards. You could tell this is only one of the many miracles that Aaron and his family have already experienced. Summer and I got talking last night while going to sleep and another interesting thought came to mind. You all know that Ammon came to us quite early, and one of the many things he came with were three little holes in his heart of varying degrees. You'll also remember that over four months after his birth we went to his cardiologist who performed extensive procedures and noted the following: two of the holes had completely disappeared and the third hole had become so small that surgery probably wouldn't ever be required. I can't help but wonder with retrospective view, knowing what we know now, that part of the reason why Ammon came so early was so the Lord could perform his miracles on Ammon's heart before his heart had the chance to develop more fully. Maybe if Ammon had gone full term, an additional two months of development would have occurred on Ammon's heart that might have been the wrong kind of development, and he could have ended up with three holes that were not so little. Then I think of all the prayers offered on Ammon's behalf regarding so many things, including his heart, and the Lord the whole time giving the comfort that Ammon's heart would be just fine; He knew long before we knew, and all He has asked of us is to trust in Him. It has been said that the Lord works in mysterious ways, and I've come to understand that some of those mysterious ways are really various miracles that eventually get us to the same result. I'm filled with joy everytime I think of the miracles that Ammon has been blessed with, and I'm filled with peace by simply trusting in the Lord, even when trusting feels hard and we don't always know the end at the beginning. Our family will gladly take the daily trials along with the daily miracles, knowing that the Lord knows us and He works from an eternal perspective. And with the knowledge that our family is truly an eternal family, with intense charity for each other, this perspective is just fine with me.
After some driving around we finally found the pavilion at the park and immediately we could tell this would be something special. There were balloons on every table, tied to plastic beach buckets with little shovels and several bottles of bubbles inside. The grass next to the pavilion was covered with inflatable watermelon size basketballs, golf balls, and baseballs, that were the perfect size for a little kid to kick or catch. A card table was set upon the grass with two girls sitting there doing a variety of face paints. Once we got our nametags on Coleson immediately ran over to girls and got a green crescent moon painted on one cheek (before the night was done, Coleson had a blue ladybug painted on the other cheek). A bubble machine was blowing bubbles across the play area, and two large buckets filled with bubble solution were set up so you could dip children's clothing hangers in them and then run around screaming while creating "monster" bubbles.
From the moment we arrived people started saying hi to us and introducing themselves. It was nice to put a face to some of the names that I heard before. Instant friends were almost an understatement with some of these people. One lady, Janet, came running up to Summer and neither could believe that the other was really there. Janet and Summer used to do aerobics together several times a week before Ammon was born. Janet and her husband live in our stake and have four beautiful girls and Aaron, a 9-month "big" baby boy that is right around 19 pounds (Aaron also has Down syndrome). Apparently, about two months before Ammon was born, Janet was one week short of being full term and gave birth to Aaron. Both Summer and Janet had heard from friends that "someone" else in the stake had recently given birth to a child with Down syndrome, but both were obviously very surprised they would actually know who the other person was. Now I don't know if you have picked up on an interesting little fact yet, but Aaron's names is, well Aaron (and Aaron's middle name is Ammon). In the scriptures, Aaron and Ammon were brothers that were incredibly valiant and powerful instruments used to bring thousands to a knowledge of the Savior. Thinking back on the experiences we've already had with Ammon concerning who he is and his time before he came to our family, I can't help but be reminded of the special little person he is, and the special big person he once was.
The night was a complete success in so many ways, and I just wanted to share two more of those with you. First, Coleson had a blast, he was an excited kid at a carnival. About half way through the night a smiling clown showed up (a very friendly, very round, fun looking clown, not the other type that some people get scared of). The clown wasn't into the whole juggling pins or spraying cold water from a fake flower, he was all about the subtle jokes and making balloon stuff, which in my opinion is the best kind of clown. Coleson and a bunch of the other kids received balloon swords, which were an instant hit, literally. The kids were whacking each other as hard as they could and just loving it. Coleson got into a sword fight with several other kids, two of whom were at least 9 or 10, and this is when we fully realized that Coleson will probably be just fine, if not much more than just fine, in the whole Down syndrome world. Summer noted that for once there were kids much older than Coleson, who Coleson was trying to play with and they were gladly playing back with him. Coleson could have cared less if the two had Down syndrome, he was just ecstatic to have older kids actually wanting to play with him. Coleson grudgingly left the event when it was all over with two balloons, two face paintings, an alien balloon figure, a shovel and bucket filled with two bottles of bubbles, and a big smile on his face. It seems like we've had a lot more perfect nights since Ammon joined our family.
Second, I wanted to tell you a little more about Aaron. It was awesome to talk with Janet about just a few of the experiences her family has had with Aaron. Aaron recently had open heart surgery, but you wouldn't know from looking at him (about 50% of children with Down's syndrome have heart problems severe enough that it eventually requires surgery, sometimes several surgeries). The scar down the center of his chest is a thin red line that almost looks like a scratch. The surgery was a success and he healed very quickly afterwards. You could tell this is only one of the many miracles that Aaron and his family have already experienced. Summer and I got talking last night while going to sleep and another interesting thought came to mind. You all know that Ammon came to us quite early, and one of the many things he came with were three little holes in his heart of varying degrees. You'll also remember that over four months after his birth we went to his cardiologist who performed extensive procedures and noted the following: two of the holes had completely disappeared and the third hole had become so small that surgery probably wouldn't ever be required. I can't help but wonder with retrospective view, knowing what we know now, that part of the reason why Ammon came so early was so the Lord could perform his miracles on Ammon's heart before his heart had the chance to develop more fully. Maybe if Ammon had gone full term, an additional two months of development would have occurred on Ammon's heart that might have been the wrong kind of development, and he could have ended up with three holes that were not so little. Then I think of all the prayers offered on Ammon's behalf regarding so many things, including his heart, and the Lord the whole time giving the comfort that Ammon's heart would be just fine; He knew long before we knew, and all He has asked of us is to trust in Him. It has been said that the Lord works in mysterious ways, and I've come to understand that some of those mysterious ways are really various miracles that eventually get us to the same result. I'm filled with joy everytime I think of the miracles that Ammon has been blessed with, and I'm filled with peace by simply trusting in the Lord, even when trusting feels hard and we don't always know the end at the beginning. Our family will gladly take the daily trials along with the daily miracles, knowing that the Lord knows us and He works from an eternal perspective. And with the knowledge that our family is truly an eternal family, with intense charity for each other, this perspective is just fine with me.
Thursday, April 6, 2006
Hearing More Good News!
Today, Summer and Ammon went to the audiologist to have another hearing test performed on Ammon. Ammon has had three hearing tests since he was born, and each test has resulted in a "failed" score, for both ears. Today's test was more in depth than the prior tests (an ABR), and was essentially meant to determine the type of hearing devices that Ammon would need to hear properly. Summer said that Dr. Harward was a very nice and very experienced individual, and apparently he was one of the forerunners on working with infants and their hearing. After performing the test, Dr. Harward informed us that Ammon had successfully passed the test and his hearing was perfectly normal. Our whole family is so ecstatic that Ammon can hear. We've had our assumptions, he always loved to hear Summer's voice and will readily smile and "coo" when she is talking to him.
Despite some of the future unknowns that Ammon will still experience, we are so grateful for the blessings that he has received and the challenges that are being conquered. For example, three weeks ago we brought Ammon to Dr. Day, Ammon's cardiologist, for another heart checkup. When Ammon was born he had three holes in his heart and some difficulty in getting oxygen into his blood. Dr. Day performed chest x-rays, an EKG, and an echocardiogram during the two hour visit. The results of these tests showed that two of the holes had completely dissappeared, and the third hole has significantly reduced in size. There was still some thickness around his pulmonary artery, which results in Ammon having his oxygen on for several more months. But again, we were simply humbled and in awe at the good things that have happened with Ammon. Ammon came into this world as a miracle in so many ways, and I suppose he figures that he's got to maintain the "Miracle Boy" aura. Again, thank you everyone for your faith and prayers, He is listening, and answering.
Love, Brian and Summer
Despite some of the future unknowns that Ammon will still experience, we are so grateful for the blessings that he has received and the challenges that are being conquered. For example, three weeks ago we brought Ammon to Dr. Day, Ammon's cardiologist, for another heart checkup. When Ammon was born he had three holes in his heart and some difficulty in getting oxygen into his blood. Dr. Day performed chest x-rays, an EKG, and an echocardiogram during the two hour visit. The results of these tests showed that two of the holes had completely dissappeared, and the third hole has significantly reduced in size. There was still some thickness around his pulmonary artery, which results in Ammon having his oxygen on for several more months. But again, we were simply humbled and in awe at the good things that have happened with Ammon. Ammon came into this world as a miracle in so many ways, and I suppose he figures that he's got to maintain the "Miracle Boy" aura. Again, thank you everyone for your faith and prayers, He is listening, and answering.
Love, Brian and Summer
Thursday, December 15, 2005
Ammon's Stories...
Story of Ammon's Birth
This posting is much longer than we intended it to be, so the whole story is not here. This posting is a portion of some of the many things that happened right around Ammon's birth, told mostly from my point of view. So please forgive me if I've messed up some of the details, but I think in total my "research" is pretty solid.
So here’s the story from several points of view.
On Tuesday, October 18, Summer went to her obstetrician appointment for the normal pregnancy checkup. At this point Summer was about 2 ½ months from her due date and most everything seemed to be moving along fine. Summer and I had felt a little concerned that she hadn't felt much movement with the baby over the past few days, but there were little bits of movement that kept us thinking everything was okay. During the appointment the obstetrician noted that the baby seemed small and did not appear to be at the normal growth rate for this stage of the pregnancy. The doctor was concerned enough to schedule an appointment with a specialist at the Ogden Regional Medical Center on Thursday, in which the specialist was to perform a thorough one hour ultra sound to identify any potential issues.
Summer called me in Santa Ana, CA (I was out of town on business for all of this), and let me know the results of her obstetrician appointment. We were a little concerned, but no one, including the obstetrician, expressed any concerns that this would become an immediate issue or that I would need to fly home before Friday. On Wednesday, Summer became a little more nervous and some good friends in our neighborhood (Kendria) came over to see her and spend the night with her. Two of our friends (Mark and Steve) gave her a priesthood blessing and part of the blessing ensured Summer that no issues would go undiscovered during her appointments on Thursday. Little did we know at that time how inspired that blessing was, and that the Lord would ensure that not even the tiniest heartbeat would go unnoticed.
At the wise request of Summer's Mom, Debbie, Summer brought a friend with her to her doctor appointments on Thursday (Lisa). At the specialist appointment several issues were discovered with our little boy. Apparently he had some fluid around his heart and stomach that was causing some concern. Additionally, for whatever reason he hadn't been receiving nourishment from the placenta and it had been this way for approximately three weeks. Finally, blood was not flowing properly within the baby's heart, which was causing some other immediate health issues. The doctor indicated that each of these items as separate issues was not an immediate concern. Essentially, on their own it appeared the issues could be dealt with medically and the pregnancy could continue forward. However, all together these issues presented a serious problem for our little boy and the doctor recommended that a C-section be performed within the next 24 to 48 hours. The process was set in motion for the surgery to be schedule and performed.
Summer called me with the news and I was completely floored, it was about 1:30 pacific time. I started cleaning up my computer stuff while she was still on the phone and after hanging up I told my coworkers that I was leaving immediately. I guess my hands were shaking as I started cleaning stuff up, because my coworkers just jumped in and put the rest of it away. My friend drove me to the hotel to pick up my suitcase and then to the airport (Dan Rinehart). He also called ahead to the airport to make new flight reservations. At the airport I had uneasy familiar memories from when Coleson was born. I was out of town then as well and barely made it home with only two hours to spare before the actual birth occurred. Summer, without a single complaint and more courage than I'll ever muster, had essentially done the whole first labor process all alone, and I was about to fail her again.
While I was waiting for my flight I was calling everyone and giving them the limited information I had. I know I freaked a few of my friends out because I left them these choppy emotional messages that really didn't give many details (unfortunately I didn't have many details to give). My flight was at 3:00 pacific time and I had about twenty or thirty minutes to wait before boarding and flying home. I had walked almost to the end of the terminal and there was no one else around. I got a call from Summer's phone, and was surprised to hear Lisa’s voice instead of Summer's (I actually thought at first that it was the doctor or nurse I was speaking to). She was breathing really hard, and I understood, "going to the O.R.," and "C-section is being performed now!" "What did you just say?" I asked her. She repeated herself, and I quickly asked her why she was breathing so hard. She indicated that she was trying to keep up with the doctors and nurses her were currently running to O.R. while pushing Summer. "What do you mean running, what's happening...what's wrong?" Out of breath she repeated again, "I don't know, other than they are performing the C-section immediately." We talked a few seconds more and then she had to go to try and put on her scrubs in time. She said she would call me as soon as she knew anything more. We hung up, and I realized that I had not been there again, but this time I missed everything. Even worse, much worse, I didn't know if our little boy or my beautiful Summer were okay. I looked at the time. It would be at least two hours before I would find out anything else. The flight home was exhausting and unbearable, the details of many of the scenarios being played out in my mind are I hope at some point more forgettable. However, a measure of peace did come on this flight (prayers are sometimes answered in the very moment of need). One promise that was clearly brought to my heart, and for which I became so grateful for during this flight was the knowledge that my family will be together forever, no matter the immediate circumstances.
Backing up a bit, Summer attended her appointment and they discovered each of the items noted above. A C-section was being scheduled to be performed, and Summer was going to be transported by ambulance to St. Mark's Hospital down in Salt Lake City. Apparently, there was a baby heart specialist at that hospital that the doctors thought might be needed due to the fluid around our little boy's heart. The calls had been made and the ambulance was on its way. One of the nurses that we will never forget, Sherry, came over to put a baby heart monitor on Summer while she waited for the ambulance. Sherry was told that it was not necessary since the ambulance would be there within three minutes. She responded, "That's okay, I'm here’s anyways, let's just hook it up," and she did (there's more to this part of the story as well, Sherry came and talked to us several times over the next few days to share with us the distinct impressions she had to put on the baby monitor, she just had to hook it up (she describes these impressions as little angels whispering over her shoulder); remember, as promised during the blessing, nothing was to be left undiscovered). When she hooked it up she noticed that the baby's heartbeat was approximately 110 beats per minutes, which is on the low end of the normal range. No immediate concerns. Within the next minute our little boy's heart rate dropped to approximately 90 beats per minute, which instantly caused concern among all the professionals present. The monitor became the sole point of attention. (In my mind I always picture the professionals gathering around Summer and the monitor; no one is breathing, there is complete silence in the room, and everyone is wishing the heart rate would miraculously increase, just like in the movies. In the reality of the moment, there was no time for even this brief pause). Suddenly, his heart rate dropped to a mere 45 to 50 beats per minutes and did not show any signs of improving. In those three minutes, our little baby's condition became more than critical, his life was rapidly slipping away; another few minutes, literally, and our little boy would leave us before ever arriving. Summer and Lisa described the doctors' and nurses' actions as becoming almost frantic, with a life-saving decision being made that an emergency C-section must be performed immediately to save our little boy's life.
The professionals had already placed Summer on a gurney to wheel her to the operating room, which was located quite some distance from where they were currently at within the hospital. My initial impression when I hear the term “wheel” is a significant understatement of the sprint that was actually occurring. Everyone was running and pushing, not jogging, as hard as possible. Lisa, being several months pregnant herself, was having a hard time keeping up. It was at this point that Summer speed dialed my number and handed the phone behind her to Lisa to try to explain the current situation to me (this clearly explains Lisa's lack of breath and lack of information as to what exactly was going on).
The group actually ran past the EMTs from the ambulance that had arrived to pick up Summer for her transport to the other hospital. One of the professionals shouted to the EMTs, "This is your transport, standby and we'll let you know if we still need you to transport the baby." Summer described numerous people appearing as they raced down the halls of the hospital offering their services to the doctors and nurses already pushing Summer along (sort of like, "I'm Doctor So-and-so, how can I help?!"). Some of the nurses lightly joked, while out of breath themselves, that this was definitely their workout for the day. Summer noted that as more people joined the "push and run" they moved faster as faster, it was a full sprint at the end. By the time they finally reached the operating room the team of professionals had swelled to well over 15 people, all scrambling to prepare for the operation. Usually there is even minimal preparation time before a major surgery is about to occur, even with ambulance emergency deliveries, but in this instance the professionals performing the surgery did not yet even know Summer's name or even indicate what exactly they were about to perform. Some items were actually being knocked over in the room in their haste to prepare for and perform the operation. All they had time to obtain was a verbal approval from Summer that an emergency C-section could be performed to try to save our baby's life. Summer was given a general anesthetic, quickly fell asleep, and the operation began (Summer later indicated that she almost felt like telling everyone to "just take a breather" and "everything would be okay." This clearly emphasizes the fact that events had progressed so quickly that she didn't even have a chance to fully grasp the gravity of the entire situation; but even more so than this, Summer had received a blessing that everything would be okay. Not only did she believe this, but she knew it to be true).
Dr. Marriott was the individual that performed the operation, and he came and talked to us several times over the next few days to relay his understanding and feelings of the whole event (which is really rather unique for this type of doctor). During our first visit subsequent to the surgery, he initially apologized to Summer for not even knowing her name or introducing himself before the surgery began. He indicated that under less time-constraining circumstances, when a C-section is performed an appointment is made, there is time spent before hand explaining the procedure to be performed, becoming acquainted between the doctor and the patient, etc. He indicated that it was fortunate that he was actually at the hospital at the time when our baby's heart rate plummeted, and was able to perform the surgery immediately. If Summer’s appointment had been on any other day but that Thursday, he would not have been as easily accessible, or even at the hospital. Finally, he indicated that this was the most stressful and traumatic surgery he had ever performed. We had no idea! Imagine hearing this from a doctor that has performed hundreds, if not thousands of these operations so far in his career. Perhaps this is why he was concerned enough to make several visits, this was actually an event, out of the countless others, that he would remember. I feel confident that he fully realized that he was a key part of the miracle. Despite the admission of the stressful surgery, he further indicated that the surgery itself went absolutely perfect in every way (he essentially said the positive side of the whole operation is that Summer received an exceptionally tight tummy tuck; not that she’s ever needed one). Each visit he asked about our little boy and was pleased to hear that he was stable and constantly improving. It seemed that in these extreme critical situations he was aware that the results were usually not this positive. (On a side note, we came to learn later that an emergency C-section is much more traumatic on the body than a normal C-section. Summer had a long painful haul in front of her, and it would be many months before she could pick Coleson up. Around six months after the surgery Coleson was running around and fell and Summer instinctively picked him up. As the realization hit that she was holding Coleson, they both almost cried and just held each other tight (for a two year old, this day had been a long time coming and Coleson didn't want to let go)).
My mother-in-law, Debbie, came from California on Tuesday and the first thing she wanted to do was go see Ammon at the NICU (Ammon Everett Cheney is our little boy's name, there’s a story there too). Debbie had just finished her radiation therapy during the last part of September, and had received approval on Saturday to travel out to Utah. On Monday she also went for her heart checkup and everything appeared to be working fine (one of her cancer medicines is prone to cause heart problems). On our way to the NICU we usually walk past the nurses’ desk to say hi to some of our new friends. I noticed that Sherry was there and whispered to Debbie, "That's Sherry, she's the one that saved our little boy." Sherry was busy with something and hadn't looked up yet. Summer and I had kept on walking, but Debbie had stopped right there. "I have to tell her Thank You," Debbie said quietly with tears welling up in her eyes. Sherry eventually saw us and came over. It turned into a rather unique and emotional moment for everyone, that I hadn't entirely expected. Debbie gave Sherry a big hug and told her thank you so much for saving our little boy. Sherry expressed again her feelings on the whole event and the inspirations she felt to hook up the monitor. She also told us that a meeting had been held at the hospital, and due to the circumstances surrounding Ammon's birth a new policy had been implemented. It now became a requirement that all expectant mothers be hooked up to a heart monitor, even if they are simply awaiting transfer to another hospital by ambulance. Up to this point our "little miracle" had already been changing lives for so many people, now he was also saving lives.
On this same visit, Coleson was also with us and he and I played outside the NICU while Summer and Debbie went in to see Ammon (due primarily to the time of year and potential sickness, young children are not allowed in the NICU; unfortunately, this included Coleson and there are no exceptions even for family). It was during one of Ammon's feeding times so the visit lasted a little longer than usual. When Summer came out, I went in to sit with Debbie and Ammon a little longer. While I was washing my hands I could hear Coleson outside crying uncontrollably. My heart went out to him and I left the NICU to see if I could comfort him. He wanted to come into the NICU so badly to see his baby brother. In his eyes everyone could see his brother except for him, and he didn't understand why. I asked Summer to go back into the NICU and I would stay with Coleson. I picked him up and asked him if we could go get some lemonade (the hospital has a fountain drink machine available to all patients and guests; one of Coleson’s favorite things to do at the hospital is to go get a cup of lemonade). On our way down the hall he turned and earnestly said to me with tears still in his eyes, "Daddy, I promise I won't touch Ammon…I promise I'll just look." I gave him a big hug, told him I loved him, and said again quietly, "let's go get some lemonade." What do you say to such an honest statement from a little boy who understands so much around him, but cannot understand why he can't just see his little brother.
Based upon this experience we have tried our best to not bring Coleson to the hospital for extended periods of time. Some amazing things have come about with this decision. So many people in our neighborhood have asked repeatedly what they can do to help, and watching Coleson for several hours each day was one of our greatest needs. The response from our friends, family, and neighbors has been incredible. There literally became a long waiting list of numerous families that have asked for the opportunity to watch Coleson (people have even changed their own schedules on a last minute's notice so they could have the opportunity to watch him). The large majority of these tending times have been very positive experiences for Coleson. Everyone has given him an additional measure of the love and attention that he needs during this time. So often Coleson has been reminded by all of these wonderful people that he is still very special and very much loved.
A little over three weeks after Ammon's birth, Summer and I became concerned that the daily babysitting sessions might be wearing on Coleson. After a particularly difficult day for Summer and Coleson, especially on the part of Coleson, Summer had to attend an evening youth activity at the church that would essentially consist of having to sit still for approximately an hour. I was unavailable to watch Coleson and asked Summer to take him to one of his favorite families (earlier in the day Summer called me and had said that Coleson almost dejectedly asked, "who's house do I go to today?"). I called after the event was over and learned that Summer had decided to take Coleson with her. Apparently, once they had arrived at the activity, Summer sat down next to Kendria (one of Coleson’s favorite people), and Coleson climbed right up on her lap and sat there for nearly an hour. She held him tight the whole time, and Coleson's whole countenance and attitude had changed. He was all smiles and happy. Everyone at the activity made it a point to come say hi to Coleson and give him a hug. At one point, he accidentally let go of a balloon he had and it popped on the ceiling. Everyone turned startled and looked at Coleson, and then started smiling and clapping. Coleson's smile covered his whole face. Summer said that Coleson felt so special and important, this whole night was another answer to yet another prayer.
Ryan (Summer's brother) did this next posting for us shortly after Ammon's birth (he was still baby Cheney then).
Summer and Brian are proud to present the newest addition to their family.
The new baby boy came on October 20th about 3:30 in the afternoon. Due to some health concerns, the doctors decided to do an emergency C-section... 2 months before the due date.
The surgery went perfect, the baby is fine and Summer is doing great.
Weight: about 2.7 pound (when it came out)
Length: about 16 inches
Name: haven't decided yet...came a little too early. (any suggestions??)(I vote for "Mini-Coleson")
The baby will stay in the hospital for the remaining 2 months to make sure that it gets all the nutrition that it needs. We are all so happy and glad that the process went smoothly!
Enjoy the pictures!(you can click on them for a larger view)
Ammon's Name
I am trying this out before I go home because I want everyone to know our baby's name is Ammon Everett Cheney. Ammon (from scriptures we were reading one night in the hospital about Alma and Ammon rejoicing over their success and we were rejoicing over our blessings with the baby and how he has to be so strong physically and spiritually; thanks for President Hinckley's challenge). Everett (means strong and we just liked it). Today I came home from the hospital and am slowly walking around. I got to change Ammon's diaper today with the nurse's help and hold him last night (I'm only allowed to hold him so rarely and for short periods of time). It was so exciting. He is doing so good. His blood is still low on the clotting factors but everything else is getting up to normal levels. Thanks for all the prayers and support! I will try to post updates, remember I am not to internet savy. Summer
Ammon is Six Weeks Old
Ammon is doing well. He is at 3lbs 10oz. He is still on oxygen, but down to 30%. He passed his eye test. Sometimes when premies are on oxygen for long periods of time, the blood cells on the back of their eyes stop spreading across and the retna detaches which causes blindness. His blood cells are growing all across, so he is good. He is drinking out of a bottle about 2-3 times a day. He drinks up to 1oz, but it is usually less. On Friday I got to try to feed him the bottle. It takes all his energy and the hard part for him is swallowing. He drank 7cc and then he was wiped out and stopped breathing so then it was time to let the nurse take over. He recovered breathing just fine. I was so proud of him. I also got to change his diaper for the second time. We are so grateful for everyone's prayers. Our neighbors have been a tremendous help in watching Coleson everyday for us. We have been grately blessed.
Coleson and Ammon's Story
Our little boy has had some unique challenges already in his life, and some of those challenges will probably continue with him for his entire life. On the night of Ammon's birth, Dr. Berger came and talked to us about some of the challenges Ammon was currently experiencing, most all were health oriented, most all were curable. As he went down the list, I remember thinking that each issue appeared short term in nature, with no life long consequences. Ammon was our miracle boy; I had no doubt that a miracle so great would not be allowed to disappear within such a short time after its occurrence.
I don't know if it was the way Dr. Berger was presenting it to us, or if I was still partially in the mind set of when I was flying home on the plane, but after he would finish describing one issue I knew there would be another to come. I felt like he was prepping us, I couldn't take my eyes off him (at least I had the luxury of actually seeing Dr. Berger, Summer was still unable to open her eyes and was listening quietly). He concluded telling us about all of the health issues. "There are medicines and procedures for each," he said, "he'll be just fine by the time he leaves the hospital." There was a brief pause. Though the room was full of family, yet it was completely quiet and I saw no one but Summer and the doctor. "There is one more concern I have," said Dr. Burger. He proceeded to describe to us some of the unique characteristics of our little miracle boy. He had strong assumptions that Ammon had Down syndrome.
I can't exactly describe how I felt at this point, but I know how I didn't feel. Despite the intense swings in emotion and stress I had felt this day, when I listened to Dr. Berger's assessment I definitely didn't feel worse.
Some of my friends have told me the familiar story of why Ammon and other children with Down syndrome or other similar disabilities come to Earth with those conditions. They have expressed that Ammon was one of the brave and courageous individuals that not only actively participated in the pre-existent war in Heaven, but he was one of the ones that literally drove Lucifer and his followers out of the gate. Feeling the spirit of Ammon and the bravery he's shown so far in his life, the story appears completely plausible and fitting. However, there is another story told to me by Summer that is more than just comforting or possible, I know it to be real and true.
Summer and I were sitting with Ammon in the NICU about a week and a half after he was born. Dr. Mohan called to speak with us and I talked with her on the phone. It was a similar conversation to the one we had on Ammon's birthday with Dr. Berger. Things were improving in Ammon's overall health condition and were expected to continue to do so. Then she paused just like Dr. Berger did and proceeded to tell me that the chromosome test had returned and the test results were conclusive. Ammon was positively diagnosed with Down syndrome. I thanked her for all of her hardwork and support on Ammon's behalf and then hung up. I told Summer the results of the chromosome tests and that our little boy did in fact have Down syndrome. She started to cry.
Contrary to the tears of sadness that many would suspect, these were tears of joy and marvel at the flash of understanding that unfolded so clearly before her eyes. Summer would have me emphasize that this was not a vision, a revelation, or a dream, but rather a feeling and an understanding wherein she understood the following. She immediately had an image of Coleson and Ammon in the preexistence with Coleson's arm around Ammon,(I always picture them being somewhere in their late teens, standing by themselves looking over the vastness of God's creations). They were the best of friends, they were brothers. They had just learned to some extent the condition that Ammon would be in when he would come to join our family. Ammon would come a little early, and it would take a miracle to ensure he would stay. Mingled with great anticipation, I suspect there were also some concerns in both of their minds about their upcoming mortal experiences. Then in a moment of brotherly love and resolution, Coleson turns to Ammon and quietly says, "I'll go first." He emotionally continues, "I'll be your big brother, and I will prepare the way for you...I will take care of you." The thought ends and we are left to ponder on the incredible significance of the whole event.
I've always felt that Coleson was a good boy, but I never understood as fully as I do now how good he really was, and is expected to be. I always get a little emotional when I think of this experience. Whenever I'm feeling a little down, stressed out, or upset with someone I think of this experience and am filled with feelings of love, forgiveness, and gratitude. Then I always remember the scriptural story of Another. There was Another who loved each of us with such intensity and purity that the Father chose Him to fulfill the great Plan and be a Savior to us all. And now I can more easily picture a private comforting moment that He spent with each of us, in which He would tenderly and quietly say, "I'll be your big Brother, and I will prepare the way for you...I will take care of you."
This posting is much longer than we intended it to be, so the whole story is not here. This posting is a portion of some of the many things that happened right around Ammon's birth, told mostly from my point of view. So please forgive me if I've messed up some of the details, but I think in total my "research" is pretty solid.
So here’s the story from several points of view.
On Tuesday, October 18, Summer went to her obstetrician appointment for the normal pregnancy checkup. At this point Summer was about 2 ½ months from her due date and most everything seemed to be moving along fine. Summer and I had felt a little concerned that she hadn't felt much movement with the baby over the past few days, but there were little bits of movement that kept us thinking everything was okay. During the appointment the obstetrician noted that the baby seemed small and did not appear to be at the normal growth rate for this stage of the pregnancy. The doctor was concerned enough to schedule an appointment with a specialist at the Ogden Regional Medical Center on Thursday, in which the specialist was to perform a thorough one hour ultra sound to identify any potential issues.
Summer called me in Santa Ana, CA (I was out of town on business for all of this), and let me know the results of her obstetrician appointment. We were a little concerned, but no one, including the obstetrician, expressed any concerns that this would become an immediate issue or that I would need to fly home before Friday. On Wednesday, Summer became a little more nervous and some good friends in our neighborhood (Kendria) came over to see her and spend the night with her. Two of our friends (Mark and Steve) gave her a priesthood blessing and part of the blessing ensured Summer that no issues would go undiscovered during her appointments on Thursday. Little did we know at that time how inspired that blessing was, and that the Lord would ensure that not even the tiniest heartbeat would go unnoticed.
At the wise request of Summer's Mom, Debbie, Summer brought a friend with her to her doctor appointments on Thursday (Lisa). At the specialist appointment several issues were discovered with our little boy. Apparently he had some fluid around his heart and stomach that was causing some concern. Additionally, for whatever reason he hadn't been receiving nourishment from the placenta and it had been this way for approximately three weeks. Finally, blood was not flowing properly within the baby's heart, which was causing some other immediate health issues. The doctor indicated that each of these items as separate issues was not an immediate concern. Essentially, on their own it appeared the issues could be dealt with medically and the pregnancy could continue forward. However, all together these issues presented a serious problem for our little boy and the doctor recommended that a C-section be performed within the next 24 to 48 hours. The process was set in motion for the surgery to be schedule and performed.
Summer called me with the news and I was completely floored, it was about 1:30 pacific time. I started cleaning up my computer stuff while she was still on the phone and after hanging up I told my coworkers that I was leaving immediately. I guess my hands were shaking as I started cleaning stuff up, because my coworkers just jumped in and put the rest of it away. My friend drove me to the hotel to pick up my suitcase and then to the airport (Dan Rinehart). He also called ahead to the airport to make new flight reservations. At the airport I had uneasy familiar memories from when Coleson was born. I was out of town then as well and barely made it home with only two hours to spare before the actual birth occurred. Summer, without a single complaint and more courage than I'll ever muster, had essentially done the whole first labor process all alone, and I was about to fail her again.
While I was waiting for my flight I was calling everyone and giving them the limited information I had. I know I freaked a few of my friends out because I left them these choppy emotional messages that really didn't give many details (unfortunately I didn't have many details to give). My flight was at 3:00 pacific time and I had about twenty or thirty minutes to wait before boarding and flying home. I had walked almost to the end of the terminal and there was no one else around. I got a call from Summer's phone, and was surprised to hear Lisa’s voice instead of Summer's (I actually thought at first that it was the doctor or nurse I was speaking to). She was breathing really hard, and I understood, "going to the O.R.," and "C-section is being performed now!" "What did you just say?" I asked her. She repeated herself, and I quickly asked her why she was breathing so hard. She indicated that she was trying to keep up with the doctors and nurses her were currently running to O.R. while pushing Summer. "What do you mean running, what's happening...what's wrong?" Out of breath she repeated again, "I don't know, other than they are performing the C-section immediately." We talked a few seconds more and then she had to go to try and put on her scrubs in time. She said she would call me as soon as she knew anything more. We hung up, and I realized that I had not been there again, but this time I missed everything. Even worse, much worse, I didn't know if our little boy or my beautiful Summer were okay. I looked at the time. It would be at least two hours before I would find out anything else. The flight home was exhausting and unbearable, the details of many of the scenarios being played out in my mind are I hope at some point more forgettable. However, a measure of peace did come on this flight (prayers are sometimes answered in the very moment of need). One promise that was clearly brought to my heart, and for which I became so grateful for during this flight was the knowledge that my family will be together forever, no matter the immediate circumstances.
Backing up a bit, Summer attended her appointment and they discovered each of the items noted above. A C-section was being scheduled to be performed, and Summer was going to be transported by ambulance to St. Mark's Hospital down in Salt Lake City. Apparently, there was a baby heart specialist at that hospital that the doctors thought might be needed due to the fluid around our little boy's heart. The calls had been made and the ambulance was on its way. One of the nurses that we will never forget, Sherry, came over to put a baby heart monitor on Summer while she waited for the ambulance. Sherry was told that it was not necessary since the ambulance would be there within three minutes. She responded, "That's okay, I'm here’s anyways, let's just hook it up," and she did (there's more to this part of the story as well, Sherry came and talked to us several times over the next few days to share with us the distinct impressions she had to put on the baby monitor, she just had to hook it up (she describes these impressions as little angels whispering over her shoulder); remember, as promised during the blessing, nothing was to be left undiscovered). When she hooked it up she noticed that the baby's heartbeat was approximately 110 beats per minutes, which is on the low end of the normal range. No immediate concerns. Within the next minute our little boy's heart rate dropped to approximately 90 beats per minute, which instantly caused concern among all the professionals present. The monitor became the sole point of attention. (In my mind I always picture the professionals gathering around Summer and the monitor; no one is breathing, there is complete silence in the room, and everyone is wishing the heart rate would miraculously increase, just like in the movies. In the reality of the moment, there was no time for even this brief pause). Suddenly, his heart rate dropped to a mere 45 to 50 beats per minutes and did not show any signs of improving. In those three minutes, our little baby's condition became more than critical, his life was rapidly slipping away; another few minutes, literally, and our little boy would leave us before ever arriving. Summer and Lisa described the doctors' and nurses' actions as becoming almost frantic, with a life-saving decision being made that an emergency C-section must be performed immediately to save our little boy's life.
The professionals had already placed Summer on a gurney to wheel her to the operating room, which was located quite some distance from where they were currently at within the hospital. My initial impression when I hear the term “wheel” is a significant understatement of the sprint that was actually occurring. Everyone was running and pushing, not jogging, as hard as possible. Lisa, being several months pregnant herself, was having a hard time keeping up. It was at this point that Summer speed dialed my number and handed the phone behind her to Lisa to try to explain the current situation to me (this clearly explains Lisa's lack of breath and lack of information as to what exactly was going on).
The group actually ran past the EMTs from the ambulance that had arrived to pick up Summer for her transport to the other hospital. One of the professionals shouted to the EMTs, "This is your transport, standby and we'll let you know if we still need you to transport the baby." Summer described numerous people appearing as they raced down the halls of the hospital offering their services to the doctors and nurses already pushing Summer along (sort of like, "I'm Doctor So-and-so, how can I help?!"). Some of the nurses lightly joked, while out of breath themselves, that this was definitely their workout for the day. Summer noted that as more people joined the "push and run" they moved faster as faster, it was a full sprint at the end. By the time they finally reached the operating room the team of professionals had swelled to well over 15 people, all scrambling to prepare for the operation. Usually there is even minimal preparation time before a major surgery is about to occur, even with ambulance emergency deliveries, but in this instance the professionals performing the surgery did not yet even know Summer's name or even indicate what exactly they were about to perform. Some items were actually being knocked over in the room in their haste to prepare for and perform the operation. All they had time to obtain was a verbal approval from Summer that an emergency C-section could be performed to try to save our baby's life. Summer was given a general anesthetic, quickly fell asleep, and the operation began (Summer later indicated that she almost felt like telling everyone to "just take a breather" and "everything would be okay." This clearly emphasizes the fact that events had progressed so quickly that she didn't even have a chance to fully grasp the gravity of the entire situation; but even more so than this, Summer had received a blessing that everything would be okay. Not only did she believe this, but she knew it to be true).
Dr. Marriott was the individual that performed the operation, and he came and talked to us several times over the next few days to relay his understanding and feelings of the whole event (which is really rather unique for this type of doctor). During our first visit subsequent to the surgery, he initially apologized to Summer for not even knowing her name or introducing himself before the surgery began. He indicated that under less time-constraining circumstances, when a C-section is performed an appointment is made, there is time spent before hand explaining the procedure to be performed, becoming acquainted between the doctor and the patient, etc. He indicated that it was fortunate that he was actually at the hospital at the time when our baby's heart rate plummeted, and was able to perform the surgery immediately. If Summer’s appointment had been on any other day but that Thursday, he would not have been as easily accessible, or even at the hospital. Finally, he indicated that this was the most stressful and traumatic surgery he had ever performed. We had no idea! Imagine hearing this from a doctor that has performed hundreds, if not thousands of these operations so far in his career. Perhaps this is why he was concerned enough to make several visits, this was actually an event, out of the countless others, that he would remember. I feel confident that he fully realized that he was a key part of the miracle. Despite the admission of the stressful surgery, he further indicated that the surgery itself went absolutely perfect in every way (he essentially said the positive side of the whole operation is that Summer received an exceptionally tight tummy tuck; not that she’s ever needed one). Each visit he asked about our little boy and was pleased to hear that he was stable and constantly improving. It seemed that in these extreme critical situations he was aware that the results were usually not this positive. (On a side note, we came to learn later that an emergency C-section is much more traumatic on the body than a normal C-section. Summer had a long painful haul in front of her, and it would be many months before she could pick Coleson up. Around six months after the surgery Coleson was running around and fell and Summer instinctively picked him up. As the realization hit that she was holding Coleson, they both almost cried and just held each other tight (for a two year old, this day had been a long time coming and Coleson didn't want to let go)).
My mother-in-law, Debbie, came from California on Tuesday and the first thing she wanted to do was go see Ammon at the NICU (Ammon Everett Cheney is our little boy's name, there’s a story there too). Debbie had just finished her radiation therapy during the last part of September, and had received approval on Saturday to travel out to Utah. On Monday she also went for her heart checkup and everything appeared to be working fine (one of her cancer medicines is prone to cause heart problems). On our way to the NICU we usually walk past the nurses’ desk to say hi to some of our new friends. I noticed that Sherry was there and whispered to Debbie, "That's Sherry, she's the one that saved our little boy." Sherry was busy with something and hadn't looked up yet. Summer and I had kept on walking, but Debbie had stopped right there. "I have to tell her Thank You," Debbie said quietly with tears welling up in her eyes. Sherry eventually saw us and came over. It turned into a rather unique and emotional moment for everyone, that I hadn't entirely expected. Debbie gave Sherry a big hug and told her thank you so much for saving our little boy. Sherry expressed again her feelings on the whole event and the inspirations she felt to hook up the monitor. She also told us that a meeting had been held at the hospital, and due to the circumstances surrounding Ammon's birth a new policy had been implemented. It now became a requirement that all expectant mothers be hooked up to a heart monitor, even if they are simply awaiting transfer to another hospital by ambulance. Up to this point our "little miracle" had already been changing lives for so many people, now he was also saving lives.
On this same visit, Coleson was also with us and he and I played outside the NICU while Summer and Debbie went in to see Ammon (due primarily to the time of year and potential sickness, young children are not allowed in the NICU; unfortunately, this included Coleson and there are no exceptions even for family). It was during one of Ammon's feeding times so the visit lasted a little longer than usual. When Summer came out, I went in to sit with Debbie and Ammon a little longer. While I was washing my hands I could hear Coleson outside crying uncontrollably. My heart went out to him and I left the NICU to see if I could comfort him. He wanted to come into the NICU so badly to see his baby brother. In his eyes everyone could see his brother except for him, and he didn't understand why. I asked Summer to go back into the NICU and I would stay with Coleson. I picked him up and asked him if we could go get some lemonade (the hospital has a fountain drink machine available to all patients and guests; one of Coleson’s favorite things to do at the hospital is to go get a cup of lemonade). On our way down the hall he turned and earnestly said to me with tears still in his eyes, "Daddy, I promise I won't touch Ammon…I promise I'll just look." I gave him a big hug, told him I loved him, and said again quietly, "let's go get some lemonade." What do you say to such an honest statement from a little boy who understands so much around him, but cannot understand why he can't just see his little brother.
Based upon this experience we have tried our best to not bring Coleson to the hospital for extended periods of time. Some amazing things have come about with this decision. So many people in our neighborhood have asked repeatedly what they can do to help, and watching Coleson for several hours each day was one of our greatest needs. The response from our friends, family, and neighbors has been incredible. There literally became a long waiting list of numerous families that have asked for the opportunity to watch Coleson (people have even changed their own schedules on a last minute's notice so they could have the opportunity to watch him). The large majority of these tending times have been very positive experiences for Coleson. Everyone has given him an additional measure of the love and attention that he needs during this time. So often Coleson has been reminded by all of these wonderful people that he is still very special and very much loved.
A little over three weeks after Ammon's birth, Summer and I became concerned that the daily babysitting sessions might be wearing on Coleson. After a particularly difficult day for Summer and Coleson, especially on the part of Coleson, Summer had to attend an evening youth activity at the church that would essentially consist of having to sit still for approximately an hour. I was unavailable to watch Coleson and asked Summer to take him to one of his favorite families (earlier in the day Summer called me and had said that Coleson almost dejectedly asked, "who's house do I go to today?"). I called after the event was over and learned that Summer had decided to take Coleson with her. Apparently, once they had arrived at the activity, Summer sat down next to Kendria (one of Coleson’s favorite people), and Coleson climbed right up on her lap and sat there for nearly an hour. She held him tight the whole time, and Coleson's whole countenance and attitude had changed. He was all smiles and happy. Everyone at the activity made it a point to come say hi to Coleson and give him a hug. At one point, he accidentally let go of a balloon he had and it popped on the ceiling. Everyone turned startled and looked at Coleson, and then started smiling and clapping. Coleson's smile covered his whole face. Summer said that Coleson felt so special and important, this whole night was another answer to yet another prayer.
Ryan (Summer's brother) did this next posting for us shortly after Ammon's birth (he was still baby Cheney then).
Summer and Brian are proud to present the newest addition to their family.
The new baby boy came on October 20th about 3:30 in the afternoon. Due to some health concerns, the doctors decided to do an emergency C-section... 2 months before the due date.
The surgery went perfect, the baby is fine and Summer is doing great.
Weight: about 2.7 pound (when it came out)
Length: about 16 inches
Name: haven't decided yet...came a little too early. (any suggestions??)(I vote for "Mini-Coleson")
The baby will stay in the hospital for the remaining 2 months to make sure that it gets all the nutrition that it needs. We are all so happy and glad that the process went smoothly!
Enjoy the pictures!(you can click on them for a larger view)
Ammon's Name
I am trying this out before I go home because I want everyone to know our baby's name is Ammon Everett Cheney. Ammon (from scriptures we were reading one night in the hospital about Alma and Ammon rejoicing over their success and we were rejoicing over our blessings with the baby and how he has to be so strong physically and spiritually; thanks for President Hinckley's challenge). Everett (means strong and we just liked it). Today I came home from the hospital and am slowly walking around. I got to change Ammon's diaper today with the nurse's help and hold him last night (I'm only allowed to hold him so rarely and for short periods of time). It was so exciting. He is doing so good. His blood is still low on the clotting factors but everything else is getting up to normal levels. Thanks for all the prayers and support! I will try to post updates, remember I am not to internet savy. Summer
Ammon is Six Weeks Old
Ammon is doing well. He is at 3lbs 10oz. He is still on oxygen, but down to 30%. He passed his eye test. Sometimes when premies are on oxygen for long periods of time, the blood cells on the back of their eyes stop spreading across and the retna detaches which causes blindness. His blood cells are growing all across, so he is good. He is drinking out of a bottle about 2-3 times a day. He drinks up to 1oz, but it is usually less. On Friday I got to try to feed him the bottle. It takes all his energy and the hard part for him is swallowing. He drank 7cc and then he was wiped out and stopped breathing so then it was time to let the nurse take over. He recovered breathing just fine. I was so proud of him. I also got to change his diaper for the second time. We are so grateful for everyone's prayers. Our neighbors have been a tremendous help in watching Coleson everyday for us. We have been grately blessed.
Coleson and Ammon's Story
Our little boy has had some unique challenges already in his life, and some of those challenges will probably continue with him for his entire life. On the night of Ammon's birth, Dr. Berger came and talked to us about some of the challenges Ammon was currently experiencing, most all were health oriented, most all were curable. As he went down the list, I remember thinking that each issue appeared short term in nature, with no life long consequences. Ammon was our miracle boy; I had no doubt that a miracle so great would not be allowed to disappear within such a short time after its occurrence.
I don't know if it was the way Dr. Berger was presenting it to us, or if I was still partially in the mind set of when I was flying home on the plane, but after he would finish describing one issue I knew there would be another to come. I felt like he was prepping us, I couldn't take my eyes off him (at least I had the luxury of actually seeing Dr. Berger, Summer was still unable to open her eyes and was listening quietly). He concluded telling us about all of the health issues. "There are medicines and procedures for each," he said, "he'll be just fine by the time he leaves the hospital." There was a brief pause. Though the room was full of family, yet it was completely quiet and I saw no one but Summer and the doctor. "There is one more concern I have," said Dr. Burger. He proceeded to describe to us some of the unique characteristics of our little miracle boy. He had strong assumptions that Ammon had Down syndrome.
I can't exactly describe how I felt at this point, but I know how I didn't feel. Despite the intense swings in emotion and stress I had felt this day, when I listened to Dr. Berger's assessment I definitely didn't feel worse.
Some of my friends have told me the familiar story of why Ammon and other children with Down syndrome or other similar disabilities come to Earth with those conditions. They have expressed that Ammon was one of the brave and courageous individuals that not only actively participated in the pre-existent war in Heaven, but he was one of the ones that literally drove Lucifer and his followers out of the gate. Feeling the spirit of Ammon and the bravery he's shown so far in his life, the story appears completely plausible and fitting. However, there is another story told to me by Summer that is more than just comforting or possible, I know it to be real and true.
Summer and I were sitting with Ammon in the NICU about a week and a half after he was born. Dr. Mohan called to speak with us and I talked with her on the phone. It was a similar conversation to the one we had on Ammon's birthday with Dr. Berger. Things were improving in Ammon's overall health condition and were expected to continue to do so. Then she paused just like Dr. Berger did and proceeded to tell me that the chromosome test had returned and the test results were conclusive. Ammon was positively diagnosed with Down syndrome. I thanked her for all of her hardwork and support on Ammon's behalf and then hung up. I told Summer the results of the chromosome tests and that our little boy did in fact have Down syndrome. She started to cry.
Contrary to the tears of sadness that many would suspect, these were tears of joy and marvel at the flash of understanding that unfolded so clearly before her eyes. Summer would have me emphasize that this was not a vision, a revelation, or a dream, but rather a feeling and an understanding wherein she understood the following. She immediately had an image of Coleson and Ammon in the preexistence with Coleson's arm around Ammon,(I always picture them being somewhere in their late teens, standing by themselves looking over the vastness of God's creations). They were the best of friends, they were brothers. They had just learned to some extent the condition that Ammon would be in when he would come to join our family. Ammon would come a little early, and it would take a miracle to ensure he would stay. Mingled with great anticipation, I suspect there were also some concerns in both of their minds about their upcoming mortal experiences. Then in a moment of brotherly love and resolution, Coleson turns to Ammon and quietly says, "I'll go first." He emotionally continues, "I'll be your big brother, and I will prepare the way for you...I will take care of you." The thought ends and we are left to ponder on the incredible significance of the whole event.
I've always felt that Coleson was a good boy, but I never understood as fully as I do now how good he really was, and is expected to be. I always get a little emotional when I think of this experience. Whenever I'm feeling a little down, stressed out, or upset with someone I think of this experience and am filled with feelings of love, forgiveness, and gratitude. Then I always remember the scriptural story of Another. There was Another who loved each of us with such intensity and purity that the Father chose Him to fulfill the great Plan and be a Savior to us all. And now I can more easily picture a private comforting moment that He spent with each of us, in which He would tenderly and quietly say, "I'll be your big Brother, and I will prepare the way for you...I will take care of you."
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