April 26, 2011 - 52 Days Old

Sky and Jazzy with their Easter baskets

I hope everyone had a fun Easter. After church on Sunday, we colored some eggs and had an Easter egg hunt for Skylar and Jasmine. They loved it! The Easter Bunny brought them both Easter baskets that they found in the morning and they had a lot of fun with our Easter activities. This is the first Easter where Jasmine understood what was happening. She ran around the yard, competing with Sky for eggs and candy. Sky only found two more eggs and a little more candy than her. After they had found everything, we sat down and pigged out on Easter candy. It was really fun.



Holding my little guy



After our Easter egg hunt, Amaraa and I drove to the hospital to visit Aiden. He was still doing really well. Amaraa let me be the one to hold him. I really look forward to holding my little guy. Amaraa had been in quite a bit of pain Sunday, so she decided to take one of her prescription pain pills before we went to the hospital. She hasn't been taking pain meds for several weeks because over-the-counter medicines have been taking care of her pain. She became really nauseated and started throwing up while we were at the hospital. She did her best, but eventually we had to leave. As soon as we got home, she took her anti-nausea meds and was fine after that, but the poor girl was sure miserable for a while.

Yesterday was a busy day. We finally made it to the hospital in the afternoon and Aiden was still doing well. They increased his feedings to 21 mL on Sunday, but he still had a bit of undigested food in his stomach yesterday, so they held him at 21 mL. We had Skylar and Jasmine with us, so we had to just take turns watching the kids while the other one went in to see Aiden.

Aiden is still doing well today. We just visited him. They are weaning him off of the pressure on the ventilator (it's now at 9) and the neonatologist increased his feedings to 24 mL every 3 hours. His tummy is still looking good and his residual amounts (the undigested food) are less today. The doctor said that once they can get his oxygen down consistently below 40% and his ventilator pressure down to 7, they will extubate him and try him on the nasal cannula again. It's almost unbelievable that he's doing so well. He has been sick for so long. The little guy's definitely a fighter.

It finally hit Amaraa today that we have three kids. With Aiden in the hospital, it almost seems like we live two separate lives -- one with Aiden at the hospital, and one with Skylar and Jasmine at home. It's difficult to put those two lives together sometimes. We feel so blessed to have three beautiful, wonderful kids. Our family feels complete. I am so excited for the day we can take a healthy Aiden home and merge these two lives of ours for good.

April 23, 2011 - 49 Days Old

Aiden has continued to improve since I last posted. He is still on the regular ventilator, but his lungs are improving. On Monday, Amaraa was able to hold him for the first time in over a month. It was a special experience for Amaraa as they were able to bond again. She had been sick for about a week before Aiden got really sick and Aiden has been sick for nearly a month, so it was a long time coming. I'm so glad he's getting better. He wasn't doing quite as well as he was doing last Sunday, but I expected a bit of a setback since he had made such a vast improvement Sunday. When we visited him on Tuesday, it was my turn. It was so fun to hold him again. He weighed about double what he did the last time I held him -- the day before he got sick. I could have sat there and held him for hours. Tuesday was our third consecutive day of good news about his condition and it seemed that he had finally turned the corner.

On Wednesday, I went to Price to work. On the way through Provo, I stopped to see Aiden. He was still doing really well. His oxygen was at 30% and his PEEP (pressure) setting was at 11. The doctor said that when his PEEP gets down to around 7-8, they can try to take him off the ventilator. Later that night, they tried him without the ventilator, but he didn't tolerate it well, so they put him back on. I was in Price until Saturday, so I had to just get updates over the phone from Amaraa and Aiden's doctors and nurses. I missed that little guy so much! I couldn't wait to come back home so I could see him again. He continued to do well through the week and Amaraa was able to visit him with the generosity of some wonderful friends that arranged to take her to the hospital and watch Sky and Jasmine. Amaraa had our car, but since she hasn't driven on the freeway since her car accident last January, she didn't dare drive herself. This morning, though, she decided she was brave enough to try. She did just fine, but she said she was "white-knuckling it" the whole way.

This afternoon, I rolled back into town and stopped at the hospital on my way home. I swabbed his mouth, changed his diaper and helped the nurse get his temperature and stats. It was so good to see him again. He was awake the entire time I was there. Usually we are lucky to see him with one eye half open, but today, he was wide awake. What a special little guy! Amaraa had a "girls night out" with some of her friends, so I had to be home to watch the kids, so I didn't spend a lot of time with Aiden, but I was there for half an hour or so. I can't wait to go back down there tomorrow. We are planning to color Easter eggs and have an Easter egg hunt for Sky and Jazzy after church, and then we will head down. Things are looking better for our little guy!  He's now up to 18 mL of milk every three hours and seems to be tolerating it pretty well. If he continues to do well, they will increase his feedings 3 mL every 12 hours until he is at full feedings. Exciting!

April 17, 2011 - 43 Days Old

Better news today. Aiden decided he didn't like the breathing tube anymore, so he decided to pull it out. They had been weaning him down on his oxygen support, so they decided they would change him to a new ventilator when they re-intubated him. He did really well on the new ventilator (a ventilator he didn't tolerate well at all previously) and by the time we got to the hospital at around 4:00 PM, they had him down at only 24%! The best news, though, was that on the new ventilator, he could be held. They wanted to watch him for a while before they would let us hold him, so he probably won't be ready until tomorrow, but we were really excited.

They had started feeding him two days ago and his tummy was still looking OK today, so they decided to increase his feedings
from 1 mL to 2 mL. Hopefully he will continue to tolerate the feedings and they will be able to increase them even more soon. It would be such a blessing to get him better and get this nightmare behind us.

We drove to Price to visit my parents after we left the hospital. We spent a few hours there and then drove back. It was good for the kids to be able to see their grandparents and cousins.

April 16, 2011 - 42 Days Old

Well, it hasn't exactly been the vast improvement we were hoping for a couple of days ago, but Aiden is making some slow progress. They have been able to turn his oxygen settings down the past few days, so that has been a step in the right direction. His lungs are looking a little better on the x-rays, too. He still has a lot of junk in his lungs, but they are improving.

His tummy was doing better, so they decided to start some small feedings yesterday to "prime" the bowel. So far, things are still looking good. His tummy isn't filling with air yet, so we're still crossing our fingers that everything will work right this time and he will be able to start regular feedings. The poor little guy has been through enough.

The doctor said that they haven't been able to detect a fungus in Aiden's cultures, but she said that doesn't necessarily mean he doesn't have a fungal infection. What they do know is that he started to turn a corner when they started giving him the antifungal medication. They are planning to keep him on the meds for a while even if they don't detect a fungal infection.

I'd like to write more, but I'm struggling to keep my eyes open. I'll write more tomorrow.

April 14, 2011 - 40 Days Old

Today we finally heard a bit of encouraging news. After several days of high-level support on the breathing machine, they were finally able to turn Aiden's support levels down today. This morning when we got to the hospital, they had turned the pressure down and his oxygen level was at 40%. For the past several days they haven't been able to get him down any lower than 95%, so this is very good news.

On Tuesday, we found out Aiden has pneumonia, and yesterday, the neonatologist told us that it has damaged his lungs pretty severely. They have also been checking for a possible fungal infection. They haven't been able to grow any fungus on the cultureyet , but they have been giving him antifungal medication just in case, and it seems to be helping. The neonatologist that was on today told us that he seems to have turned a corner just after they started giving him the antifungal meds. They had seen a mass in Aiden's heart that they thought was a fungus, but they called the cardiologist in to do a secondary echocardiogram and it wasn't there anymore.

Aiden's tummy is looking better too. They have been suctioning out the gas in his bowel through an Anderson tube. That has prevented his bowel from blowing up with air like it was doing before. Yesterday, they turned the suction off and just let it drain with gravity. That worked well enough that they removed the Anderson tube this morning and just put in a regular feeding tube, which is smaller than the Anderson. While he is not being fed, the gas in his belly can drain out through the tube. They are going to watch him for a little while to see how he tolerates the smaller tube. If he does well and the gas doesn't build up again, they will begin feedings again.

So, today was the first good news day for quite a while. The doctors and nurses all seem to think Aiden has turned a corner. I think it may be a little early to say that yet, but I can't tell you how much we hope that is the case.

Sick Little Guy - 36 Days Old

Today was a stressful day. When we called the nurse this morning to get an update on Aiden, she said that he had had a really rough night. His right lung had almost completely collapsed and they were having problems keeping his oxygen saturation up where it needed to be. They tried him on three different ventilators and finally settled on one that seemed to be doing the job. Even on the new ventilator, they had to keep his oxygen level at 100%. The nurse said they were planning to do an echocardiogram to look at his heart.

Doing the echocardiogram

We decided to skip our stake conference and head to the hospital as soon as we could get ready. When we arrived at the hospital, we saw three ventilators, one of which Aiden was hooked to, sitting at his bedside. He looked swollen again. He was still on 100% oxygen, but was sleeping fairly peacefully. The nurse said that he has pneumonia and they were thinking he may have a fungal infection, so they had started him on an antifungal antibiotic. After we had been there for a while, the head NICU physician, Dr. Minton, came in to do the echocardiogram. As he and Dr. Gerday, the neonatologist, looked at the screen, they could see a mass at the opening of the inferior vena cava. They said it was either fungal growth or a mass of fibrin, the mesh structure in blood that aids in clotting. The mass should clear out if they can get the fungal infection under control.

Machines, machines, and more machines

Aiden still has the Anderson tube in his belly to suction out the excess air. I asked the doctor if he thought the fungal infection is contributing to the problems with his bowel and he said he didn't think so. Still, if they can get the respiratory problems resolved, they will be able to concentrate on the bowel issue. As we were getting ready to leave, they decided to change Aiden back to the oscillating ventilator. To to that, they had to change his breathing tube. It was really difficult for Amaraa to watch and she left crying. When they finished intubating him and got him positioned normally in bed, we decided to leave. We called and talked to the nurse this evening and Aiden was still on 100% oxygen, but his oxygen saturation was in the high 80s (that's good) and he was doing much better overall than last night.

After we got back from the hospital, we watched "Tangled" with Skylar and Jasmine. It is the first time any of us have seen it. What a cool movie! I slept through most of it, so the kids wanted to watch it again after I woke up from my nap. It was fun to spend some time with Sky and Jazzy. It always seems like we can never spend enough time at the hospital with Aiden and we can never spend enough time with Sky and Jazzy at home.

Here We Go Again - 35 Days Old

Well, we thought things were improving with Aiden. They seemed to be progressively getting better over the past few days, but when I got to the hospital this morning, the nurse said he had really had a rough night. His respiratory problems were starting to reappear, and his bowel was filling up with air again. To stabilize him, they stopped his feedings and turned the pressure on the ventilator way up. They were able to wean him back off of those high settings a little bit throughout the day today, but even then, they had to keep them pretty high. The neonatologist told me that they now think the respiratory problems are being caused by the bowel problem. He had called the pediatric surgeon at Primary Children's Hospital for a consult and was waiting for him to look at Aiden's latest x-rays and call back with his thoughts. He also ordered a gastrograph, where they inject contrast dye into his colon and large intestine. This allows them to see the structure of the bowel better. He thought there was a real possibility that the pediatric surgeon would call before the study and tell them not to do the gastrograph and just transport him to Primary Children's Hospital for possible surgery. I called Amaraa and told her that she had better get herself ready so that we would be prepared if they decided to transfer him up to PCH.

I went and picked Skylar up from school and went home. Amaraa and I decided to run some errands as we waited for a call from the hospital. The gastrograph was scheduled for 3:00 PM and I wanted to be at the hospital for that. We ran our errands and were surprised that we did not receive any calls from the hospital. We headed home and picked Skylar and Jasmine up and then drove to the hospital. The kids couldn't go into the NICU, so Amaraa and I took turns tending kids in the waiting room while the other one of us went in with Aiden. Amaraa wanted me to go in first because she was a bit uncomfortable with the gastrograph. When I went in, they had already started the gastrograph. They had Aiden lying on a table within a special x-ray machine. They had two large monitors set up where they were watching the x-ray images in real time. I was standing next to the neonatologist and when they were finished, the pediatric radiologist came over to us to give us a report. He said that he didn't see any structural problems, constrictions or perforations in the lower bowel. The neonatologist explained to me that with this test, the radiologist can only see up to the valve between the large and small intestines. She did say, though, that not seeing a problem in the lower part of the bowel is very encouraging because it is in the lower bowel that they see the majority of constrictive and structural problems. They are going to let him rest for a few days and then do a similar study on the top section of the bowel.

We still don't know what's wrong with Aiden. The neonatologist said that it could just be that he was born early and his bowel hasn't fully developed yet. Even though we aren't any closer to figuring out what the problem is, at least we are ruling out some of the things that it isn't. One thing is for sure, though: Aiden is a pretty uncomfortable little guy, and that's hard to watch. I wish they could just figure out what is causing the problem and get it solved so we could work toward getting him healthy and getting him home.

April 7, 2011 - 34 Days Old

It has been a while since I posted, so I'll give a quick update on what has been happening. Sunday was another nice day of General Conference. It was nice to be able to spend time at home with my family and listen to the words of our church leadership. Following the afternoon session, Amaraa and I went to the hospital to visit Aiden. His lungs were still looking good and his tummy was a little better than it was on Saturday. Not much had changed, but positive steps, even small ones, are always welcome.



Happy 1-month birthday, Aiden!

Aiden turned one month old on Monday!  It's exciting that he has a little more time under his belt, but it's still frustrating that we still don't know what is causing his bowel problems. The good news is that they took the Anderson tube (the tube going down into his belly that they used to suction out the gas) out in the morning and put a smaller tube into his stomach that they will use for feedings when he is ready for that. It is encouraging that they removed the Anderson tube because it is an indication that the doctors and nurses feel like he has made a significant improvement. My parents came up to visit and we all spent an hour or so with Aiden.

On Tuesday, I wasn't able to visit Aiden until fairly late in the evening. Not much had changed with him. He had had a pretty quiet day. They did start some small feedings in the afternoon. They were planning on watching him closely to see how his bowel responded.I spent about a half hour with him and then headed home.

Yesterday was Amaraa's birthday. We spent most of the day going to doctor's appointments, but we did manage to go out to dinner as a family to celebrate. We had to go to the hospital so the doctor could test Amaraa's blood thickness. She has to do that weekly while she is taking the coumadin (blood thinner) to treat the blood clot she had in her ovary. Following that appointment, we went to the NICU to visit Aiden. His bowel still looked OK after the first feedings. His lungs were about the same as they have been the past few days -- still a bit cloudy, but no big collapsed areas. We spent a couple of hours with him and then went to our second doctor's appointment of the day -- the follow-up appointment with our OB/GYN. He said she was doing really well and didn't need to come in for another appointment until it's time for her annual exam. We have a follow-up appointment with her surgeon on the 13th and then she will be done. After our appointment, we went shopping for Amaraa's birthday gift. Yes, I know it sounds tacky, but I didn't forget to get her a gift. On the contrary, because I was getting her a new phone, I asked her days earlier if she trusted me or if she wanted to go shopping with me. I'm not a shlub. Well, maybe I am, but not in that way. It took forever, but when we finally got done, we went to pick up the kids and Amaraa's mom, and then went out to eat together. We had a fun time.



On sedation, it's rare to catch him with his eyes open.

Today, I went to see Aiden after my morning class. His lungs were still looking about the same, but his tummy had started to fill up with air again. The doctor was there doing his rounds when I got there, and he talked to me about his plans. They are going to keep looking at the x-rays and watch them closely. If it continues to fill up with air, they are going to stop his feedings and do a contrast enema. When they do a contrast enema, they inject contrast dye into his bowel. This allows them to see the structure of the bowel better and they will be able to see if there are any blockages, twists or other structural problems. We are obviously hoping that he will be able to get rid of the air on his own and they won't have to do the contrast enema, but if that's what it takes to get him better, we're OK with it. He was sleeping on his tummy this morning. The nurse said he is much happier on his tummy. He has fewer swings with his oxygen saturation and pressure levels, and he sleeps very peacefully. He looked so cute sleeping there. I can't wait until they can get these problems sorted out and get him better so we can bring him home. Initially, they tell you to expect that the baby will be in the NICU until his original due date (May 18th), but with all of these problems, he will probably be there longer than that. Getting Aiden healthy is all that matters, but we can't wait to have him home with us. No matter how many hours you are able to spend in the NICU, it never seems like enough.

April 2, 2011 - 29 Days Old

Today, Aiden is showing some signs of improvement. His lungs are still looking good. The x-rays of his lungs are still pretty cloudy with infiltrates, but there are no major collapsed areas as there were before. They have been turning down the support levels on the breathing machine and he seems to be tolerating the reduced help pretty well. His tummy looks a little better, too. There's still a lot of air in there, but his belly girth measurements have been slowly decreasing for the past two days. That's encouraging. They turned off the suction through the Anderson tube, the tube running down into his bowel trying to drain off the excess air. It is now only draining by gravity. When they have tried that before, his tummy immediately blew up again, but it seems to be working OK so far this time. I went out of town for work yesterday and visited Aiden tonight as I was on my way home. I got there just after the nurses bathed him. I was able to lift him up as they changed his linens and took his weight. He has been very swollen and puffy over the past few days from all of the fluids they have been giving him, but some of that swelling is coming down. I don't know if they gave him lasix or if he is just getting rid of it on his own, but his weight was 2092 grams on Thursday, 2085 yesterday, and 1992 (4.5 lbs.) tonight. I never thought I would be happy that my preemie was losing weight, but in Aiden's case, that's a good thing right now.

Today was the start of April General Conference. The morning session this morning was just what we needed. Every talk seemed to have been written just for us. Elder Kent Richards, Elder Quentin Cook, and President Henry Eyring gave talks that were particularly timely and meaningful to me. Elder Richards, a retired surgeon, spoke about pain and shared the story of a 13 year-old girl and an experience she had following a serious surgery. His words were very comforting to both Amaraa and I. As Elder Cook spoke about the women of the church and President Eyring spoke about service and caring for those in need, I couldn't help but think of all of the wonderful Relief Society sisters in our ward that have been so thoughtful and kind to us throughout the past several months. One of many examples of this happened on Friday as I was getting ready to go out of town. I checked the mail and found an envelope with Amaraa's name on it. Inside was a card from a sister in our ward. She shared a favorite scripture and wrote words of comfort and encouragement. Amaraa had been having a particularly difficult time emotionally and the card was just what she needed. This sister knew that Aiden had been struggling, but did not know that Amaraa was having such a hard time. She was simply prompted by the Spirit and she listened to that prompting. I can't begin to express how grateful I am to her and all of the other people who have been so supportive and thoughtful. We feel so blessed to have the friends and the family that we have.

April 1, 2011 - 28 Days Old

The past couple of days have been crazy. I had started March 29th's post, but hadn't finished it, so I just took what I had written and posted it a few minutes ago. I'll try to fill in the blanks a little bit in this post.

This week has been a tough one. Aiden has been struggling. It seems like whenever he takes one step forward, he takes two steps back. He is still on the same equipment he was on before. The jet ventilator seems to be helping, although it's really too early to say for sure. Today, his lungs are looking much better. There is a significant improvement on his x-rays even since yesterday. We're hoping the lung issue is hitting a plateau and has turned a corner. The bowel issue is another issue entirely, though. The doctors don't know what's causing the excess air in his bowel. All of his labs are coming back negative for infection and inflammation. They have tested him for all the viruses they can test for, and those labs are coming back negative as well. The neonatologist told me today that his labs aren't coming back good; they're not coming back great; they're coming back "perfect". He said that he doesn't use the word "perfect" with parents, but Aiden's test are coming back "perfect". That's great news, but it makes diagnosing his problem very difficult. His blood count has been low, so they have had to give him two blood transfusions, the last of which was done yesterday. They are still giving him antibiotics with the thought that there may be some underlying infection there that just isn't showing up in the tests. The doctors are frustrated that they can't give us a definitive diagnosis. We're frustrated too, but all we can do is watch and wait. He's still a very sick little boy.

On Wednesday, Amaraa had to go down to the hospital for a blood test. After the test, we went to visit Aiden. She hadn't been to visit him for a few days because she has had a cold. When we got there, they had him all draped up and two nurses with masks and gowns on were working on him. The nurse practitioner said that his pick line site had become irritated, so they were putting another one in. It was really hard for Amaraa to see that. We left and decided to come back later. Amaraa cried the whole way home. This has been incredibly difficult for both of us and she had finally reached her limit.

Jazzy and Sky have suffered through all of this as well. It seems like I am always either at school or work or the hospital. Amaraa hasn't been able to be very involved with the kids because she has been mostly confined to bed. The kids have both been sick and it has been hard on them. I took them to the doctor on Monday and they both had ear infections. I took Skylar and my parents to a Jazz game on Monday night. The game was horrible, but we had a good time. It was nice to be able to spend some time with Skylar. He needed it and so did I.