"Below you'll find a series of stories about Ammon, our little miracle boy, around the time of his birth. We still have friends and family that chance upon these posts and are amazed, just like we constantly are, about all things Ammon. These posts are only the beginning, please click on the "Ammon" label for additional inspiring stories about this precious kid."
We received a call from the doctor on Christmas Eve that Ammon was ready to come home. We were so excited and shocked. I thought he had a few more weeks but all he had to do was drink a 2oz bottle. He surprised everyone and did it last week. He has made huge progress as far as eating and breathing over the last week. Brian and I spent the night at the hospital on Monday in the bonding room. It is like a trial night right across the hall from the NICU. Everything went well and Ammon has been great this whole week at home. He is still on oxygen, so we have a heart rate and respitory rate monitor. They took out his feeding tube and i have started to try to nurse him. It's hard work for him, just like everything else has been, so i am confident he will eventually get the hang of it. Overall he is a great baby already on a 2month old schedule, but similar development to a newborn. He is now 4lbs 12oz and 18in long. Our cute little miracle is home.
Saturday, December 31, 2005
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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