About four weeks ago now Robin went to her OB/GYN for a regular visit. She was 28 weeks into the pregnancy and her belly was measuring 32 centimeters, which is a little big for that number of weeks but not particularly out of the ordinary. Two weeks later however, she was measuring 38 centimeters. She had gained 6 centimeters in only two weeks and she was miserable. At only 30 weeks, she was measuring about as big as she had been when she was full term with Rachel. She was suffering because her belly was so big that she could not do anything without becoming completely worn out. Her days consisted of doing the bare minimum to maintain some semblance of order, i.e., get the kids up and ready for school, feed the kids, make sure they don't die, etc. And after each task she would have to lay down and rest for anywhere from 20 minutes to an hour or more just to recuperate.
At her 30-week visit, the doctor expressed significant concern about the rapid growth of her belly and wanted her to schedule an ultrasound within a week to see what the problem was. Up to that point in the pregnancy there had been no signs of the baby being particularly stressed. And he always was extremely active, kicking and punching and swimming around at what seemed like all hours of the day and night. At 20 weeks she had had an amniocentisis (a procedure whereby the doctor inserts a long needle through the abdomen and uterine wall to withdraw a small sample of amniotic fluid) in order to determine whether the baby might have down syndrome but that came back negative. And none of the ultrasounds to that point had revealed anything disconcerting about the baby.
So we were able to schedule an ultrasound for last Friday, April 25. We came to the new IHC hospital in Murray (where our OB/GYN practices) and the doctors performing the ultrasound measured an extreme amount of amniotic fluid and also saw that the baby had what they referred to as pleural effusions and a little bit of scalp edema. They suggested that Robin have a procedure called an amnio reduction in which they insert a needle into the uterus and drain as much amniotic fluid as possible. At that time Robin decided to wait to see if she could go a little bit longer before having the procedure, on the theory that the baby needed as much time in the belly as possible to continue to develop. The doctors mentioned that the pleural effusion, which is an accumulation of fluid in the pleural cavity between the lungs and the chest, was most likely having the effect of impairing the growth of the baby's lungs. So we were understandably concerned.
We went home and googled "pleural effusion" to try to understand a little better what was happening with the baby. What we were able to understand was not particularly alarming, but very encouraging either. Our research suggested that, like the doctors had mentioned, the primary result of a pleural effusion is the impairment of lung development, but that it is usually treatable either intrauterine or after the baby is born by inserting a chest tube and draining the fluid. In the course of our research we also came across a related condition called "hydrops", which appeared to be much more serious as it presented not only with accumulation of fluid in the pleural cavity but also generally throughout the other organs and body. We noticed that this condition appeared to have a much higher fatality rate, any where from 30% to 50% to 70% or more depending on the causes of the hydropic condition. At that point we were grateful that we were only dealing with a pleural effusion and not with a general hydropic condition.
Later in the day on Friday we determined that Robin was simply too miserable and that we should try to get the amnio reduction as soon as possible. We called and were told to come in on Monday morning.
So last weekend we went into full "shut-down-Robin" mode, wherein she lay down as much as possible and I tried to take over and do as much as possible with the kids and around the house. We had a fairly normal Saturday; I took the boys to their soccer game, did a number of loads of laundry, did some yard work (but not enough), general cleaning up around the house, fed the kids, moved some furniture around between the kids rooms, gained a new appreciation for Robin, prepared Robin's sharing-time lesson for Primary on Sunday (which she graciously volunteered me to do in her place), etc. It was a fairly busy day. On Sunday, Robin stayed home from church and pretty much lay down all day other than getting the kids ready for church. I went early to rehearse the ward choir, came back and got the kids, took the kids to church, directed the choir in a sacrament meeting number, and taught sharing-time in Primary.
Robin was so miserable by that point. The only thing that really kept her sanity going was the thought that she was going to get a lot of that excess fluid drained on Monday morning.
MONDAY, APRIL 25
On Monday we came back to the hospital for the amnio reduction. Because the new hospital happened to be missing one small connector tube, the doctor was forced to manually pull out the amniotic fluid with a syringe rather than with a vacuum container. The procedure ended up lasting about an hour, during which time Robin started having contractions based on the fact that the needle had penetrated the uterus. After the procedure, the doctor was able to get a much clearer picture on the ultrasound of how the baby was doing (prior to that time, the excess fluid served to partially obcure the image). The ultrasound at that point revealed that the baby not only had the pleural effusion but had hydrops as well.This was the first of several scary moments to come. What did this mean exactly? What could we do? The doctor wanted to immediately admit Robin and administer steriods intended to help kick start the baby's organs, mainly the lungs. In addition to the uncertainty about the baby, Robin continued to have fairly strong labor contractions. They wheeled robin down to a triage room in the Women and Infants section of the hospital where they gave her the first steriod shot and hooked her up to some monitors - one to monitor the baby's heart rate and one to measure the strength and frequency of her contractions.
We were told that the steriods required 48 hours to fully kick in and help the baby. But our ability to wait that long was complicated by the fact that early in the afternoon the baby started showing signs of distress with each contraction. Fortunately it didn't last terribly long, but if that situation had continued or had returned, the doctors would have wanted to take the baby out as soon as possible, whether the steriods had kicked in or not.
Over the next two days Robin had to do everything possible to keep the baby in. It seemed like every couple of hours something would happen to cause concern. Robin would have to change positions frequently not only for her own comfort (which was in very short supply), but also to reduce the occasional stress on the baby. That afternoon they started Robin on a progressively stronger series of drugs intended to suppress the contractions. At some point that night they put her on oxygen in order to help the baby out as much as possible.
TUESDAY, APRIL 29
At 5:30 in the morning on Tuesday Robin's water broke, so we knew that we were in the hospital for good, until the baby came. We still needed to get to Wednesday afternoon in order to give the baby the best chance to survive. Tuesday was another long day of major discomfort for Robin. The baby seemed to somewhat stabilize at some point during the day, as his heart rate was fairly strong and variable (a good thing apparently) throughout the rest of the day and night.
The nurse that helped us out that night by providing for us a packet of information about hydrops. The information was not good. It is a condition that could be caused by any number of causes, and at times no cause is ever diagnosed. The doctors had already performed several tests to determine if it was being caused by an immune system issue, some kind of virus, heart issues, anemia, or other main causes, but they ruled out all of those. Ironically, it seemed that if would have been a good thing if they had been able to say definitively that his heart was bad, because at that point they would know the cause and how to treat it.
Tuesday was simply a long, hard day of just trying to get Robin comfortable and trying to keep the baby inside. Robin's parents arrived from Hurricane that day and spent the next two days with us. My parents had been watching all five of our other children since Monday. And my siblings Ryan and Amanda and her husband Tony came to visit often to help cheer us up. Throughout the week our neighborhood friends have provided great service in caring for our other children while we were at the hospital.
WEDNESDAY, APRIL 30
Jacob's birthday. The doctors scheduled a c-section at 4:30 that afternoon. So our whole focus that day was making it that far while maintaining the baby's vital signs. Another long day of Robin being extremely uncomfortable. She was so tired by that point because she had not had any good sleep. Each night was constantly interrupted by contractions and nurses checking on Robin's vital signs every hour. By Wednesday she was so ready to be done.
The doctors had started administering magnesium sulfate, a muscle relaxant, to help suppress her contractions. As a result she was really weak and could not do anything without help; she could barely even hold up her arms. But somehow we made it through to 4:30. It was especially comforting to Robin to have her parents there. Her dad helped out by rubbing the stiffness out of Robin's neck; she basically had to be on her back or rolled over to either side during a period of more than 48 hours. He was a tremendous help.
Prior to the surgery we decided on a name for the baby. We liked the name Jacob for a first name and Davis, after my mother's maiden name, as a middle name.
They came to get Robin at about 4:15 to take her back to the operating room. The set-up was nice; they had a sliding window in the wall of the operating room that led directly into the newborn intensive care room where a whole team of doctors and nurses would be waiting to take Jacob immediately and begin working with him.
Prior to the surgery, Robin's mom tracked down the anesthesiologist and gave him a talking to. She made sure that he was aware that in her first pregnancy Robin had had a spinal tap whose effects went too high and caused her to stop breathing. She made sure that the doctor knew exactly which size of needle to use and not to place it too high in Robin's spine. The doctor was very appreciative, watched things very carefully, and as a result no complications arose.
I was able to be in the OR with Robin during the whole surgery. They put Robin on the table and the anesthesiologist administered the spinal tap. Everything after that was great for Robin because the pain was finally gone. The surgery went off without a hitch. The doctors were very impressed with Robin's uterus and the lack of scarring from the previous 3 c-sections. I always knew Robin was a tough cookie.
They got little Jacob out and immediately handed him through the window to the NICU. From my vantage point I only saw a little bundle of blankets handed through. I stayed with Robin the whole time and was not allowed to go back to NICU to watch the initial proceedings with the baby. They finished up with Robin and we wheeled her back to her room. At that point we began the waiting game to see when we could hear about baby Jacob.
After about an hour one of the nurses brought back some pictures of him. His head was all swollen and puffy and round like a balloon. We could see from the pictures that he had been intubated and had a breathing tube in his mouth along with various other tubes and wires coming out of various places. We were told that he initially showed some signs of distress, but that they were able to put him on a powerful drug called Fentanyl that put him to sleep and ensured that he would not feel any pain. The doctors had immediately inserted chest tubes on both of his sides in order to drain off the fluid that had been accumulating in his body. The said that they initially drained off a large amount of fluid.They moved Robin up to the 3rd floor that night to a room in the maternal ward. I was able to go down later that night to be with him. The NICU was in the same building but down on the main floor. Each baby in the NICU had his or her own little room with dedicated equipment and a personal nurse. Little Jacob was hooked up to more monitors and equipment than I had ever seen connected to a baby so small. He was laying flat on his back and he was completely out. In addition to the breathing tube he had by that point 3 chest tubes in one side and 2 in the other, a blood pressure monitor on one hand, a central venous line connected through his umbilical cord, and IVs in both feet. Later on they would insert a catheter to help with the urinary function. He was still looking fairly puffy but not as bloated as at first; he was looking more like himself. The nurses had put a cute little sign above his bed with "Jacob" on it.
The main issue for Jacob was his breathing. The ventilator was helping him to breath by providing a constant flow of very high pressure air into his lungs. The pressure forced his lungs to stay inflated while also forcing air in and out to essentially breath for him. Without the ventilator he would not survive.
I stayed with him for a little while, but eventually went back up to be with Robin and to get some sleep.
THURSDAY, MAY 1
At about 1:30 in the morning one of the neonatologists came up to our room and informed us that things were not looking good. Jacob was not responding very well to the ventilator and his blood oxygen levels were getting dangerously low. They were going to switch him over to a different type of ventilator called a jet ventilator, but that if it didn't work then that would be it for little Jacob. I immediately called my dad, Robin's dad, and our bishop to come to the hospital and help me administer blessings to Jacob.
We got Robin down there in a wheelchair and did not have to wait long for the others to arrive. I was a real blessing that Robin's surgery had gone so well so that she would be able to come down to see Jacob so soon. My dad was the first to arrive and he and I proceeded to anoint Jacob with consecrated oil and to give him a blessing. In the blessing I gave him the name of Jacob Davis Tenney. The bishop and Robin's dad arrived after that and the bishop gave him a beautiful blessing in which he informed Jacob that he had come down to a good family strong in the Gospel, that he would be able to feel his parent's love and be comforted, and that he would be able to fulfill his mission here on the earth.
Simultaneously the doctors were able to switch Jacob over to the jet ventilator and his blood oxygen levels almost immediately responded by coming back up. What a relief. There were still several issues the doctor's were dealing with, but at least he would stay breathing for awhile longer.The next main issue with Jacob was that his lungs and body were not properly processing the oxygen; he was not able to expel the byproduct of carbon dioxide that was building up in his system. Normally the doctors would have liked to have seen his CO2 numbers in the 45 to 55 range, but he was initially measuring in the 14o range. This became the main focus over the next period of time.
We were able to get back to Robin's room and get a couple more hours of sleep. My mom came and stayed with Jacob while we slept, but I relieved her at 6:00am so that she could go back home and get our kids ready for school. Throughout this whole experience we were so blessed to have family and good neighborhood friends that stepped right in with our other children and allowed Robin and I to be at the hospital and focus solely on Jacob. Robin's parents were to take all 5 of our kids down to Hurricane that afternoon for the weekend.Before they went down, we brought all of the kids to the hospital to see Robin and to have a chance to see Jacob. The hospital's social worker was extremely helpful and had suggested that the 4 older kids be given a chance to see him before they left just in case something were to happen to him while they were gone. It was so nice for Robin to be able to see our children at that time. They brought happiness and energy to an otherwise bleak setting.
We explained to them that Jacob was sick and needed a lot of machines to help him right now, and then we took them down 2 at a time to see him. Katie and Rachel went first, and they talked about how little he was and how cute he was. They were curious about all of the monitors and machines. Ethan and Parker were also very curious and counted the number of machines in the room (they're big on counting things these days). I explained to the kids about the tubes and machines that were helping him.
The kids said goodbye to mommy and I helped get them loaded into the Excursion. They were off and on their way and we could focus solely on being with Jacob now.
My sister Amanda and her husband stopped by that night and we were able to take them back to see the baby. At that point the doctors and nurses were extremely concerned because the CO2 levels had remained way too high for way too long. The situation was toxic for little Jacob, and if it didn't change he would not have long to live. Tony helped me to give Jacob a blessing in which I specifically blessed him that his body would begin to correct itself and get rid of the carbon dioxide. Following the blessing his CO2 levels began to come down. Tony and Amanda accompanied Robin back to her room and I stayed with Jacob until they drew the next blood sample and tested the blood gas levels. The result came back for the first time with his CO2 levels in the okay range. Finally, some good news. We went to sleep that night feeling a little better about things.
FRIDAY, MAY 2
Friday morning we received a call from the NICU telling us that Jacob had had a very rough night. His blood pressure kept dropping and coming back up, and his CO2 levels had not stayed down. While his oxygen levels were still okay, it seemed that everything else was regressing and the jet ventilator was no longer an option for keeping him breathing. His lungs simply could not sustain the constant high pressure required to keep them inflated. The pressure kept causing little tears or holes in his lungs through which the air would leak out into cavities in his body. So in addition to continuing to drain fluid out of his body the doctors were identifying air pockets and needing to drain those as well. We went down to be with Jacob for as long as we could. Robin's legs and feet were swelling as a result of the surgery and she could not stand or sit in the wheelchair for very long at a time.
The doctors decided to switch Jacob back to the original ventilator on the chance that doing something different might help some how. They were really close to being at the end of their options. They had tried so many different things without seeing much if any progress. Throughout the whole experience the doctors and nurses were doing their absolute best, were very professional and caring as well.
We were able to be there that morning for the doctors' rounds concerning Jacob. Lots of medical jargon and numbers were reported, of which I was only able to understand a little, but I understood the gist of things. And at the end they explained things to Robin and I in plain english. Things were not looking good. Despite having 6 chest tubes they did not appear to be properly draining the fluid or air that were still accumulating. And an echo cardiogram revealed that Jacob's heart was pushing blood out at a higher pressure than they would like, indicating either that he simply did not have sufficient vessels in his pulmonary system through which the blood could flow or that the many of the vessels that were there were too constricted to allow blood to flow through. They decided to try a new medication that would possibly help to open up whatever blood vessels were present.
That afternoon at 3:00 the neonatologist came to meet with us together with my parents and Ryan and Kristin who had all come to be with us that day. He explained that they had run out of options and that Jacob simply did not have sufficient lung development to sustain life. He would not make it. We immediately went to be with him and to say our goodbyes.
Jacob slowly declined over the next 3 hours. His blood oxygen level went down to the 40s, then the 30s, and then into the 20s. His blood pressure started to slowly go down as well as his heart rate. The nurses arranged for us to be able to hold him from that point forward, which we previously had been unable to do. They lifted the tubes and let us sit by his bedside and cradle him. Robin and I took turns. We watched him slowly dwindle.
The machines were still keeping him alive, but it would only have been a matter of time. At about 6:00 that evening we decided that it was time. We wanted to see what he looked like without the breathing tube in his mouth. The doctor removed his breathing tube and we were able to hold him and see him as he slowly left us. His little body would occasionally try to take a breath, but the capacity was not there; it was not even a real breath, it was more like a little sigh. He looked so peaceful. It was finally his time to go.
During these last moments a volunteer photographer came and took some beautiful professional pictures of Jacob and of us holding him. We are very grateful for the service that was rendered.
Following his passing, the nurses did a wonderful service by cleaning up baby Jacob and dressing him in cute little clothes and wrapping him in a warm blankets. He had a cute little hat and knitted booties. We were able to go back and hold him again like this, without all of the tubes and
needles and machines. Just quiet for a few last moments with our baby. Even now as I think about it I cry; that is the way we were supposed to be able to hold him every day; to watch him get bigger, to change his poopy diapers, to comfort him when crying, to have sleepless nights. We don't get that opportunity now.It was so hard to say goodbye to this little spirit that we never really got to know. He showed such fight and perseverance in lasting as long as he did. This was not the result that we had envisioned. Things were supposed to work out, but they did not. We were very emotional. Tears flowed freely.
We alternate between having faith that this is the Lord's will, but then not understanding why this had to happen. We think about the lost opportunities to care for him; we feel cheated of his association here in this life, both for us and for his siblings. Our family does not feel complete without him here. We know the Lord could have healed him, but it was not in His plans for Jacob. We do not understand right now why this had to be part of the plan, but we have faith that the Lord knows what He is doing. Our views are so limited right now. All we can do is trust in the Lord's infinite wisdom and try to be at peace. It is hard. It will get better, but right now it is hard.
Right now we need to follow the admonition of the ancient prophet who said: "Believe in God; believe that he is, and that he created all things, both in heaven and in earth; believe that he has all wisdom, and all power, both in heaven and in earth; believe that man doth not comprehend all the things which the Lord can comprehend." (Mosiah 4:9)
We take comfort in the following words of a previous leader of our church, President Joseph F. Smith: "when the mother is deprived of the pleasure and joy of rearing her babe to manhood or to womanhood in this life, through the hand of death, that privilege will be renewed to her hereafter, and she will enjoy it to a fuller fruition than it would be possible for her to do here. When she does it there, it will be with the certain knowledge that the results will be without failure; whereas here, the results are unknown until after we have passed the test."
This is something that we look forward to with anxiousness. We now have a child that is waiting for us on the other side of the veil. It is up to us to live worthily to be with him in the eternities, to have that opportunity to raise him following our resurrection.
SATURDAY, MAY 3
This day was spent mostly in making necessary arrangements and attending to details to hold a funeral service on Monday, May 5 for little Jacob. My parents graciously have allowed us the use of a burial plot they own at a local cemetery. Our families all rallied to our aid. My brother Michael and his wife Natalie drove up from Arizona and have provided wonderful service, as have Amanda, Tony, Ryan, and Kristin.
Robin's mom and her sister Leesa brought our other children up from southern Utah to the hospital without telling them what had happened to Jacob, at our request. We wanted to be the ones to break it to them. They arrived in the afternoon and we explained to them what had happened. They let out an audible gasp and started crying. We were able to hold them and try to comfort them. We explained to them about the beauty of the Gospel plan and the fact that we can still be a family together forever if we live righteously. The nurses graciously brought Jacob's little body up to Robin's room and wrapped him in warm blankets. We gave the kids an 
opportunity to hold him one last time. Rachel was sad that we would never find out what color eyes he had or what his favorite color was. The kids had been so excited throughout the pregnancy to have a new baby brother. They prayed for him in all of their prayers, including meal-time prayers. But like most children they are very resilient and are already asking if mommy is going to have another baby soon. We will make sure to talk to them about how they are feeling going forward and to be here for them. We want to validate their feelings and answer any questions they might have.
Now we are preparing for tomorrow's activities. Family viewing, public viewing, then funeral. Burial at the cemetery and family luncheon back at the chapel. Then what? not sure. Hold our children ever closer, strive to teach them about God and life and eternal families. Be with them as much as we can. Treasure life and each moment with our children.
