Tuesday, March 29, 2011

March 29, 2011 - 25 Days Old

I ran to the hospital after my morning class this morning and they had Aiden lying slightly on his side to try to get the collapsed portion of his lung to open up. With all of the tubes in him, plus all of the rolled up towels they had propping him up on his side, he looked so uncomfortable. He was sedated and probably had no idea what was going on, but I still felt bad for him. He was waking up a little bit, though, and he opened his eyes several times. It also looked like he smiled three or four times. Yes, I realize that they aren't real smiles, but I'll take what I can get. They were cute, whatever they were.

Tonight, I went to the hospital after my last class. They had Aiden lying flat on his back again. His nurse said that his belly looked better and wasn't quite as distended. She also said that the collapsed part of his lung had popped open again. I was really excited to hear that. The jet ventilator must be doing the trick. She said they will have to keep an eye on it for a while because when it collapses like that, it can happen again. He still has a lot of infiltrates in his lungs, so they will probably keep him on one ventilator or another for several more days. They ran a 48-hour test on a lung culture from him, though, it came back negative for any viral or bacterial infection. He's making progress. Hopefully today was a turning point and he will just continue to get better from here on out.

Sunday, March 27, 2011

March 27, 2011 - 23 Days Old

It was a busy day today with church and home teaching. Aiden's doctor called Amaraa this morning and updated her on his condition. The cultures they had run to test for pneumonia had come back negative. Because of that, they cut him back from four antibiotics to one. She said that his blood count had come in low, so they were going to give him a blood transfusion. They had put in the "pick" line catheter and the arterial line last night, so they have been able to use those lines for all the medications and blood draws.

I finished everything I had to do by around 4:00 PM and we headed over to the hospital to visit Aiden. It was a bit of a shock to see all the new lines in his little body. He has more tubes and lines in him now than he has ever had. They had started the blood transfusion just before we got there. The doctor had told the nurse to try starting him on feedings again, so she had pulled out the suction tube that was suctioning the air out of his belly to do that. As she was getting ready to start the feeding, she noticed that Aiden's belly was puffing up again. They did an x-ray and saw that the air in his tummy was back. They saw that his bladder was big and full and that it was pushing up on the bottom loop of the intestine, so they decided to catheterize him to drain his bladder so that the bladder muscle could rest and take the pressure off the intestines. They didn't expect that to solve the gas problem entirely, but they thought it might help. The neonatologist said that the problem is probably the result of an infection of some sort, but they are not sure what type of infection he has yet. They sent some cultures and blood to the lab, but the full results won't be in for a couple of days.

Amaraa wasn't feeling very well today, so we only stayed with Aiden for a couple of hours. As we were coming down in the elevator, there was a couple being discharged from the hospital with their new baby. It's so hard not to be jealous of those parents. We wish it could be us taking our healthy baby home with us. It is a miracle that Aiden made it at all, since Amaraa started bleeding at 10 weeks. We know we have been incredibly blessed. And we know that he's in the NICU because he is sick and needs to be in the NICU. But it sure doesn't make it much easier. It's hard to put those selfish desires to have him home with us aside and put reality into perspective.


The "pick" line
The arterial line

 

Saturday, March 26, 2011

March 26, 2011 - 22 Days Old

Yesterday, we went to the hospital in the morning and spent a couple of hours with Aiden. Not much had changed. His belly was still very full of air and they had put in a second IV in his little hand for the antibiotics they were giving him. They had put him on the oscillating ventilator that he was on after he was first born. This ventilator forces up to 600 little puffs of air per minute into his lungs to keep the air sacks in his lungs open. His belly was so distended that you could see the coils of his intestines bulging up under his skin. Amaraa hadn't been to visit for a couple of days because she had been coughing. When she had been to visit him last, Aiden was in the closed incubator with nothing but a nasal cannula and a feeding tube. It was hard for her to see him on the ventilator with IVs and monitor wires everywhere and she was pretty emotional.

At lunchtime, we went and had some Korean food. It had been so long since Amaraa and I had been out to eat together that a little lunch ended up feeling like a full-on date. After lunch, we headed back to the hospital. Aiden was sedated so that he can tolerate the breathing tube in his throat, so he was sleeping peacefully when we returned. We sat with him for a little while and then drove home.

Today, my parents called and said they were in town. Since Aiden was struggling, they decided to come up and be with us at the hospital. Aiden was better in some ways and worse in others. He had gotten rid of most of the air in his belly, but his breathing was worse. The latest x-rays of his lungs indicated that he might have pneumonia. The neonatologist said they needed to put a "pick" line (central line) catheter into him. The blood vessels in the arms are so small that they can collapse pretty quickly. The pick line will allow them to give him medications faster and easier without the risk of collapse. Dr. Cheatham also said they were going to put in an arterial line so they could draw blood more easily without having to poke Aiden's little foot every time. We sat with Aiden for a couple of hours. When they got ready to put the arterial line in, we decided to get out of their way and go home.

Jasmine and Skylar are still struggling with their sicknesses. Jasmine is still coughing and has a slight fever. Skylar now has an ear infection and has been in quite a bit of pain from that. All of the sickness is getting old. It would be really nice just to have one day when everyone in the family is well. For now, it looks like that's not in the cards.

Thursday, March 24, 2011

Setbacks - 20 Days Old

Today we had a few setbacks. This morning, Aiden's doctor called Amaraa and told her that they had taken Aiden off of the nasal cannula and put him back on the CPAP machine to force more pressure into his lungs. They watched him throughout the day today and he still wasn't able to keep the air sacks in his lungs open as well as he needed to. As the day progressed, it became more and more difficult for him to breathe. I got to the hospital at around 7:30 this evening and they had just intubated him and put him back on the ventilator. They brought the x-ray machine in and took an x-ray of his lungs. The respiratory specialist reviewed the x-rays with me and showed me why they had put him back on the ventilator. His belly was all distended because he had a lot of air in his intestines. The x-ray showed that they were blown up like a balloon. That puts pressure on the lungs and makes it so he can't breathe as well, but the forced air of the high-flow nasal cannula or the CPAP machine forces more air into the bowel, so each problem was aggravating the other. After they got the x-ray back, it appeared that there was some distention in the chest as well. The neonatologist was worried that there may be a hole in the intestine that was letting the air out into the chest cavity. It seemed that every doctor and nurse in the NICU began crowding around Aiden hurriedly getting blood, starting an IV in him, checking his carbon dioxide levels, and getting him ready for another x-ray to give them a better view of the intestines. It reminded me of when Amaraa was first rushed to the ICU after her c-section and everyone was crowded around her trying to get her bleeding under control. It was a nerve-wracking experience. The neonatologist and another doctor tried to comfort me and make sure I was alright as everyone rushed around doing their various jobs. I watched and waited, praying that the x-ray would come back OK. The x-rays came back and the neonatologist called me over to look at them with her. She said the bowel wasn't perforated and that the air was confined to the intestines and belly. What a relief!  She said that sometimes excess air in the bowel can indicate an infection, so she put him on an antibiotic. They put a tube into his stomach to suction out the excess air and are just going to watch him through the night and see how he does. She said he was stable and that I could feel comfortable about going home. Aiden's nurse came over and asked me if I would like her to help me find someone who could assist me in giving Aiden a blessing. I said I would. The doctor who had come over to comfort me earlier came over and told me he would be glad to assist. We closed the curtain and gave him a blessing. After the blessing, I sat with Aiden and held his hand. He was sleeping peacefully. He was tired after struggling to breathe today. The ventilator will do all the work for him tonight so he can rest. After a while, I decided to head home.

Tuesdays and Thursdays are my big days at school. I have classes from 8 AM to 8:30 PM with just a couple hours of break time in the morning. During part of my break today, I decided to go to BYU campus and sit in on a BYU Singers rehearsal. I miss singing with Singers so much. It was the only reason I was able to endure attending BYU. I try to sit in on at least one rehearsal a year because it is such an emotionally healing, stress-relieving experience to hear them. They sounded so great. They are about as close to perfection as it gets. Dr. Staheli is amazing. If you'd like to hear them, they are performing on Music and the Spoken Word with the Mormon Tabernacle Choir this coming Sunday at 9:30 AM. It's definitely worth watching and/or DVR-ing. They also have concerts on April 7th and 8th at BYU. Anyway, I didn't realize how much I would end up needing that stress-free hour today. I'm glad I went.

As I was talking to the neonatologist today, I told her that I couldn't believe how fast a preemie's condition can change from stable to extremely critical. Life can change in the blink of an eye. One thing I have learned through all of this is that you just have to make the most of every single day. I almost lost Amaraa in a day. You never know what is going to happen tomorrow. Pettiness, anger, jealousy, etc. are not worth wasting your time on because in the end, you're the only one it hurts. I'm not saying that I'm all of a sudden a perfect person. I still have a lot to work on. I just now realize what a waste of time negativity is. The first step in recovery is realizing you have a problem, right? Ha ha.

Wednesday, March 23, 2011

March 23, 2011 - 19 Days Old

Today was a crazy day. I ran around like a chicken with his head cut off most of the day. I won't bother with the minutia. I'll try to just hit the high points.

Amaraa got a phone call from the doctor this morning. She told her that they had increased Aiden's oxygen to 5 liters. She said his latest chest x-rays showed that his lungs were not as clear as they would like them to be. They were having problems keeping his oxygen saturation up where it needed to be at his current oxygen settings, so they needed to increase it. She told Amaraa that they were going to do a chest x-ray to check his lungs again later in the day, and that they were going to do an ultrasound of his heart. All of this information went together to freak Amaraa out. I was trying to catch up on some homework when she called me crying, saying that Aiden was not doing well. Each of the things the doctor had told her, separately, were not overly concerning, but together without a lot of explanation, they were terrifying for Amaraa. Since I've been more involved in the day to day medical stuff going on with Aiden, I didn't see any reason to be alarmed, but told her I would go to the hospital and talk to the doctor later on today. Amaraa was coughing all night last night and I think she is coming down with the same cough Skylar has now (does it ever end at our house???), so she can't visit Aiden until she is better. Anyway, I calmed her down a bit and told her I didn't think she needed to be overly worried about Aiden.

Amaraa had a follow-up doctor's appointment this afternoon. She is still in quite a bit of pain and it doesn't seem to be getting much better. Since her medication has been making her sick, she has been trying to do without the pain medication as much as she is able. Dr. Allen checked her out and said that she has an infection and he prescribed some antibiotics for her. He also changed her pain meds to one that shouldn't hurt her stomach as much. After the appointment, I dropped Amaraa off at home and went to pick up her prescriptions.

When I got home, I made some soup for dinner and then drove to the hospital to visit Aiden. He was sleeping peacefully in the incubator when I got there. I opened the little door on the side and put my finger in his hand. He gripped it tight and held on to it. He looked great. The nurse came in and told me that Aiden had been very gassy today and they had just done an x-ray to see if there was cause for concern. She said that I wouldn't be able to hold him until the Nurse Practitioner had a chance to read the x-rays. A few minutes later, the nurse came in and said that the NP had looked at the x-rays and didn't feel there was a cause for alarm. The nurse asked if I would like to hold Aiden skin-to-skin. I decided to do it. It was a bit awkward and embarrassing at first, but it turned out to be such a neat experience. He nestled into my chest and slept there for a while. Then he turned himself around and laid down in my arms. Occasionally, he opened his eyes and looked up at me. It was a special time. I held him for about 45 minutes and then decided to put him back in his bed. I talked to the nurse about the doctor's phone call to Amaraa this morning. She said that the oxygen level will fluctuate until finally they are able to taper it all the way down to zero. The increase showed that his lungs still aren't able to maintain sufficient oxygen saturation on their own yet, and today they had to increase the level to keep it where they needed to be. She said there was no reason to be worried. I asked her about the chest x-rays and she said they do chest x-rays on a regular basis to check the lungs. In preemies, they almost always show some stuff in the lungs. His are no exception. She said they would clear up as the lungs develop further and Aiden gets a little time under his belt. I asked her about the ultrasound of the heart that the doctor had mentioned. She said it was a routine ultrasound to see if the ductus arteriosis, a blood vessel that connects the pulmonary artery and the aorta that normally closes shortly after birth, had closed correctly. It was not connected to the chest x-ray or the oxygen increase. The nurse was actually surprised that Aiden was doing so well for his age and size. She said he is making good progress and things are going well. I felt much better about things and immediately called Amaraa to report what I had found out. She was relieved.

When I got home, I was happy to hear that Amaraa was feeling somewhat better. She had taken her new pain meds just before I went to see Aiden and it helped her a lot. She has really been suffering lately, so I'm glad we finally found something that works that won't hurt or upset her stomach.

Sunday, March 20, 2011

March 20, 2011 - 16 Days Old

It has been a few days since I last posted. I have been out of town for the last couple of days working, and yesterday I was throwing up all day. I guess I picked it up from my kids. Not fun.

Amaraa has been doing better. She is getting around on her own without having to use the walker as much. She's not challenging me to a foot race yet, but she's doing much better. She is still in a lot of pain and her pain medication hurts her stomach and makes her throw up, so she is trying to back off the meds as much as she can while still keeping her pain under control.

Aiden is doing great. When we went to see him Thursday, he was wearing clothes!  He had a set of preemie pajamas on. He finally got rid of his last IV line, so he will be wearing clothes from now on. Amaraa wasn't feeling very well Thursday, so I was able to hold Aiden for a change. What a treat for me!  When we asked about his weight, the nurse said that Aiden's bed scale had been malfunctioning, so they weighed him on a new scale. He came in at 3 lbs. 6 oz. All of his previous measurements had been under 3 lbs. They said they would use the new scale for all of his future measurements. Anyway, that made us feel good that he is back above his birth weight of 3 lbs.

We visited Aiden again today. His weight is up to 3 lbs. 8 oz. and he is still doing very well. They are feeding him about 8 oz. of milk per day and he is tolerating it very well. Amaraa and I were both able to hold him today and he was wide awake nearly the whole time. Prior to this visit, he has only opened his eyes occasionally and usually only halfway, one at a time. Today, he opened his eyes wide and was looking around the room. He checked out his mom and me and tried to take in this crazy world he was born into. Skylar wanted to go with us to see his little brother today. Unfortunately, the NICU won't let kids under 14 in during RSV season. That lasts until June, so Skylar and Jasmine will have to wait until Aiden gets home to meet him. Sky was really upset that he couldn't come with us. I hate the fact that they can't see him, but it's most important that we keep Aiden healthy. The neonatologist told me that if a child gets RSV twice before the age of two, it increases their risk of developing asthma to 50%. So, Sky and Jazzy will have to wait. They'll have plenty of time to get to know him once we get him home.

Just after we got home, Becky Worthington brought us dinner. It was so good. The Relief Society in our ward is bringing us meals for two weeks. They have already done so much for us. We appreciate it so much. I don't know what we would have done without the support, help, and prayers of our family and friends during this time.

Wednesday, March 16, 2011

March 16, 2011 - 12 Days Old

In my last entry, Jasmine had just started throwing up. She threw up several more times that night and Amaraa threw up in the morning. It looks like we're past the worst of it, though. It must have just been a 24-hour bug. Skylar had it a couple of days earlier.

The kids have been so happy to have their mom home again. Jasmine holds onto Amaraa's walker and "helps" her walk around the house. She doesn't leave Amaraa's side. Jasmine has probably suffered the most from Amaraa being in the hospital because Skylar was able to go to the hospital with me to visit more often than she was.

This morning, we went to the hospital to visit Aiden before Amaraa had to go for a blood test at the doctor's office. We weren't able to spend a lot of time with him, but Amaraa was able to hold him for a few minutes. When we got there, he was in an incubator. They said they had put him in the incubator because it was the closest thing they had to the womb. The nurse said he will grow better in there. He will be there until he is 1800 grams. He's now about 1280. He's still under his birth weight, but he is gaining. Amaraa held him for a few minutes before we had to go to her appointment. He could smell his mommy and was rooting a little bit. Amaraa gave him his binkie and he sucked on it for a while. He was sucking pretty well. In a couple of weeks, Amaraa will probably be able to start nursing him. For now, they just give him her milk through a feeding tube.

We went to the Physicians Plaza at the hospital for Amaraa's blood test. She has been on blood thinners to dissolve a clot she has in one of her ovaries. They had to test her blood thickness to see if the blood thinners were doing their job. The results were good. After the test, we drove to Skylar's school to pick him up. We had forgotten that it was "early out" day for him, so by the time we got there, he had been waiting for 45 minutes. Oops! Life has been crazy for us lately. Hopefully he will forgive us and won't be permanently scarred.

After picking Skylar up, Amaraa had another doctor's appointment with the OB she was seeing before we were transferred to the Regional Hospital. He had talked to one of Amaraa's doctors about all that had happened and was just happy to see that she was OK. He told her she was very lucky to be alive with all the blood she had lost and everything that had gone on. He took the adhesive strips off of her incision and said it was looking good.

We're planning another trip to see Aiden tomorrow. Things are looking up!

Monday, March 14, 2011

Home At Last! - 10 Days Old

Today was a big day for us. After 8 weeks in the hospital, I was finally able to bring Amaraa home. This morning, Dr. Anderson came in to check on Amaraa for the last time. He gave her some instructions and a pep talk. He told her that complete recovery will probably take about six months and to not get frustrated if she isn't running a marathon in a week. He told her to take it easy and let herself heal before she gets too rambunctious.

I had a Calculus test early this morning. I studied most of the night, only getting about three hours of sleep. After my test, I headed to the hospital. Amaraa didn't feel very well this morning. She got really weak and nauseated and threw up. The nurses had her stay a little longer so they could watch her and make sure everything was OK. I had forgotten to bring her clothes, so I drove home to get them. When I got home, Skylar and Jasmine were peering out through the front window, looking to see if I had brought Amaraa with me. They were disappointed when they realized it was only me. I grabbed Amaraa's clothes, ran to the store for some groceries, and started back toward the hospital. When I got there, Amaraa's nurses were ready to send her home. They had me sign some paperwork and gave us some final instructions.

Amaraa changed into her regular clothes and we went up to visit Aiden before we left. We were both able to hold him and he was doing very well. His nurse told us she was going to remove the last IV line from his naval later on in the day. That means no more IV feedings!  He has been doing so well with his regular feedings that they don't need the IV line anymore. He's doing better and better every day. He is such a cutie and he steals the hearts of all his nurses.

After we finished up at the NICU, we went back downstairs. Amaraa's favorite nurse, Annie, was there waiting for us to return so she could help me take Amaraa out to the car. Annie and Amaraa have become really close over the past week. Annie has worked extra days just so she could be Amaraa's nurse. We went downstairs and out to the car. It was beautiful outside. It had just rained and everything smelled clean. It was a bittersweet feeling for Amaraa to be leaving the hospital. She was so ready to get back home, but it was hard for her to leave the hospital without Aiden. She knows he is much better off there than with us for now, but she feels much further away from him.

We headed for home. On the way, we stopped to fill her prescriptions at the pharmacy. Before they could be filled, though, Amaraa became light-headed and weak and I had to take her home. I helped her out of the car and into our kitchen. She sat there for a while and ate a late lunch. She hadn't eaten since breakfast and that probably contributed to her weakness. The kids were so excited to have their mom back home. Jasmine kept going from Amaraa to me and back to Amaraa kissing and hugging us. She wanted to sit on Amaraa's lap all day.

I had another test this evening. After I went back to pick up Amaraa's medicine, I drove to campus to study for a while. Amaraa called and said that Skylar had broken out in hives. WHAT NEXT??? I wasn't really making much progress on my studying, so I just decided to go take my test. It was a disaster, but it's over. I went back down to the hospital to see Aiden before coming home. They had taken out his IV line and he was sleeping so cute. His nurses said he was doing really well. I stopped at the store on the way home and grabbed a few things I had forgotten earlier in the day.

When I got home, Skylar had fallen asleep. He was still swollen and had hives all over his body, but he was breathing OK, so I put him in bed. We put Jasmine in bed a little later. She was crying more than normal, so Amaraa's mom checked on her. She had thrown up all over her crib!!! I guess I found out the answer to, "what next?" We got everything cleaned up and she threw up on our bedroom floor. I've had about all I can take for one day. I hope she is done throwing up, though I have a feeling she's not. This could be another long night. Amaraa has a lot of medications she has to take. So far she is having a hard time staying on top of her pain, but hopefully she will catch on to her medication schedules and do better from now on. I'm exhausted. I hope to get some sleep before Jazzy throws up again. Wish me luck!

Sunday, March 13, 2011

March 13, 2011 - 9 Days Old

I haven't been able to post for the past few days because I have been out of town. On Friday before I left, I stopped by the hospital with Skylar. We went to Amaraa's room and she was so happy to see Sky. It had been more than a week since she saw him last and she missed him a lot. I left Skylar with Amaraa and went up to the NICU to visit Aiden. He was doing really well. They had decreased his oxygen to 2 liters and he was improving a lot. The respiratory specialist showed me his lung x-rays from that morning and his lungs had really cleared up since the last time I saw them.

I went back down to Amaraa's room and she told me that Dr. Anderson had been in early that morning and told her that she was doing really well. He said she should be able to go home pretty soon. She was really happy about that. After living at the hospital for the last eight weeks, she is ready to go home. She is getting up and moving a lot more and is able to make it back and forth to the bathroom on her own. After spending a few minutes with Amaraa, Skylar and I headed out of town.

On Saturday, Amaraa called me from the NICU and told me that she was there with Aiden. When babies are born premature or with low birthweight, doctors encourage moms and dads to hold the baby skin-to-skin. This close contact not only helps parents bond with their babies and vice versa, but it also stimulates the mother's body to produce the exact type of milk the baby needs. Any germs on the baby's skin are transferred to the mom's body, which produces antibodies for those germs and then transfers the antibodies back to the baby through the breastmilk.

Sky and I came back into town last night and stopped at the hospital on the way through. Amaraa had felt so good earlier in the day that she had told her nurse that she didn't want any pain medication. That decision caught up with her at about 8:00 PM. She started having some pretty severe pain again and called her nurse to get some meds. Unfortunately, it took some time for her medicine to kick in, so she suffered for a while. She was tired, so we left her alone so she could get some rest.

This morning, Amaraa called and said that Dr. Anderson had been in to talk to her. He said that if everything goes well today, they will probably be able to send her home tomorrow. I took a shower and headed to the hospital. While I was showering, Skylar threw up. "Great," I thought. I told him to take it easy today, hoped that it was just a fluke, and headed for the hospital. When I walked into Amaraa's hospital room, Amaraa was on the phone with her mom who was telling her that Sky had just thrown up again. Just to give some perspective, Sky has had two colds within the past week and a half. Now this just as Amaraa is getting ready to come home. If Amaraa or I get sick, we can't visit the baby, so that's about the worst thing that can happen right now.

Amaraa had waited for me so we could visit Aiden together, so as soon as she got off the phone, I loaded her in the wheelchair and we went to the NICU. Amaraa moved into a recliner Aiden's nurse had brought in for her and held Aiden skin-to-skin again. He had been fussing a little bit when we first got there, but as soon as he felt that closeness with his mommy, he calmed right down. Amaraa held him like that for about a half hour. 

After our time with Aiden, we went back to Amaraa's room. The ICU doctor came in and told Amaraa that her latest blood tests showed that her blood was a little bit thicker than they had wanted it to be. He decided to increase her coumadin and give her another blood test tomorrow to make sure they get it where it needs to be. If it's too thick, she will be at risk of blood clots, so they don't want to send her home until they get the coumadin dosage right. The good news is that he signed a discharge order for her for tomorrow, so unless the blood test comes back bad, we're a go for launch. Amaraa's mom called her and said that Skylar had thrown up again. I decided I had better go home and take care of Sky.

By the time I got home, Skylar was feeling much better. I gave him some Sprite and saltine crackers and he was good to go. I showed Skylar, Jasmine, and Amaraa's mom all of the pictures of Aiden I had taken today. I hung out with the kids for a while and then put them to bed. They can't wait until tomorrow. Hopefully they'll get their mom back again.

Thursday, March 10, 2011

March 10, 2011 - 6 Days Old

Wow, exactly one week ago, Amaraa had just finished her blood transfusion. I can't believe it has been a week since everything happened. It is exciting that both Amaraa and Aiden are doing so well now, though.

Yesterday when I arrived at the hospital, I went straight up to the NICU. I was surprised to see that Aiden had been taken off the ventilator and was now on a nasal canula. The nurse said that the problem with his lungs had not completely gone away, but that it was improving. Aiden decided that he had had enough of the breathing tube in his throat, so he pulled it out. They hadn't planned on taking it out so soon, but he did okay breathing on his own, so the left it out and gave him the nasal canula. They had also taken out the arterial line going into his naval because they didn't need it anymore. He's doing so well. I spent some time with him and then headed down to Amaraa's room.

Amaraa was doing better. Dr. Anderson had been in early in the morning and removed the staples from her incision. He put some glue on it instead. That should help with the pain a little bit. The physical therapist came in and helped Amaraa get up and walk a little bit. She is so weak that it didn't take much for her to become exhausted and start to shake. She's a fighter, though, and she powered through the pain and weakness to walk a few more steps. Watching her progress over the past several days has been amazing. She improves tenfold every day. In the afternoon, she was able to take a bath. Her nurse helped her out so much and she felt so much better after she got cleaned up. After spending the day with her, I headed up to the NICU to see Aiden one more time before going home. Aiden's nurse gave me an update on him and asked me if Amaraa had been able to hold him yet. I told her I didn't know we could hold him yet. I decided to let Amaraa hold him first when she made it up there the next time. That turned out to be this morning.

This morning as I was heading to the hospital, Amaraa called me on my cell phone and told me that she was in the NICU holding Aiden for the first time. I arrived at the hospital and went up to the NICU to meet her. She was tired, but it was so fun to see her holding Aiden. My mom and dad came up to see Amaraa and the baby and came into the NICU with us. I had asked my dad to help me give Aiden a blessing. The nurse pulled the curtain to give us some privacy. Amaraa held him as we gave him the blessing. I felt a strong impression that he would be alright. I was able to hold him for the first time after the blessing. He is so tiny. He kept opening his eyes and looking around at his grandma and grandpa and Amaraa and I. Amaraa was exhausted and weak, so I gave Aiden back to the nurse and we all went down to Amaraa's room. A little later on, she got up to go to the bathroom and was able to walk all the way into the bathroom and back. The nurses helped her, but up until now, she has only been able to take a couple of steps even with help. She's a tough girl. They finally removed her catheter. That should help her get around a little better. It will also force her to walk more as she has to get up to the bathroom. She is gradually losing all of her "equipment". It won't be long until she's back to her old self, better and wiser for what she has been through.

Tuesday, March 8, 2011

March 8, 2011 - 4 Days Old

Sorry for not posting yesterday, but when I got home, I fell right to sleep. Yesterday was a pretty good day. Amaraa was moved out of the ICU and into the Mother-Baby ward in the morning. They had initially planned to move her in her bed, but they moved her in a wheelchair instead. It was very painful for her, but the doctors said that the sooner she can start moving around, the sooner she will heal. She is very grateful to be out of the ICU and into a quiet, peaceful room again. Before she left the ICU, they gave her a shot of blood thinners in her belly. She will be on the blood thinners for a couple of months and they are going to teach her how to give herself the shots.

I went down to the hospital at around noon and went straight up to the NICU. I was a little surprised to see that Aiden was still on the ventilator. The nurse said that they had seen some cloudy spots on his one lung that indicated either a collapse or some excess fluid. She said they needed to get that cleared up before they would take him off the ventilator. Otherwise, he was doing well.

I went down to Amaraa's room. In the afternoon, the physical therapist came by to try to get Amaraa up and walking a bit. She was able to stand up with a walker, but was so weak that she wasn't able to take any steps. They laid her back down and she began to cough. She coughed up some thick, bloody stuff from her lungs -- the remaining fluid in her lungs from the blood transfusions and IVs. The nurses called the respiratory specialist in and she said that Amaraa would be coughing more and more of the fluid up as she becomes more mobile. I knew that between her last transfusion and the blood she was given on Friday, she had had at least twelve units of blood, but wasn't sure how much was given to her in surgery and in the ICU. When the respiratory specialist came in, the nurse told her that she had had 33 units of blood total Thursday and Friday. I couldn't believe it. That is her total blood volume more than twice over!

The lactation specialist had been in to talk to Amaraa before I got there. She brought in a breast pump and Amaraa was trying to pump every couple of hours. By about 6:00 PM, she was getting a little colostrum. The nurse took it up to the NICU and they said they would give it to Aiden at his next feeding. We were really excited that she was getting things started so quick because with our other two kids, it took a while for her milk to start coming in. She pumped one more time just before I left and got a lot more colostrum that time. I delivered it up to the NICU on my way out. Aiden's nurse told me they had given him all of the milk we had sent up so far and that Aiden had pooped for the first time. It may sound funny, but that's actually a big step.

This morning, Dr. Hill came to check on Amaraa. He was the ICU doctor that tried to get her bleeding under control when they first transferred her there after her c-section. He said, "Do you know that we had to give you 33 units of blood?" Amaraa said, "Thank you so much for saving my life." He said, "In your case, we really did save your life. You almost didn't make it. We put a large IV line into your leg that allowed us to put a large amount of blood and blood products into you in a very short amount of time. Without that, you would have died."

A little bit later, Dr. Anderson came in and checked Amaraa's drains. The left drain had been bothering her a lot and he took that out. He said it might hurt to take it out, but it had been hurting her so bad that all she felt was relief. He said, "I have something for you. Well, not really for you, but for Aiden." He pulled out a little bag with a burp cloth that his wife had made. It had a note that said, "Congratulations!! I have enjoyed taking care of you and your baby. Each time your baby spits up on this burp cloth, you can think of Dr. Anderson...err...ahh...anyway, congratulations! -Dr. Anderson." Amaraa was really touched by the gift. It's Aiden's first possession. Dr. Anderson has been such a wonderful doctor. We couldn't have asked for anyone better. We've been through so much together that he feels like a part of the family.

Amaraa was able to go up and see the baby today. It was very emotional for her. The nurse told me later that Aiden perked up when she came like as if he could smell his mommy. She was in a wheelchair rather than a bed this time, so she was at a better angle to see his face. They let her feed him with a syringe. He burped for her and kind of seemed to smile. It was so fun for her to see him and talk to the nurse about him. She feels very good about everything now.

Some friends came to visit this afternoon. With the weakness from all she has been through as well as exhaustion from trying to walk, Amaraa was pretty tired. They didn't stay long, but it was nice to see them. More friends came this evening and brought food for us. We have the best friends in the world.

I went to visit Aiden when I first arrived at the hospital today. He was lying on his belly. He looked so cute lying there. He is still on the ventilator, but his lungs are clearing up. The nurse had me take his temperature and feed him while I was there. He seems to be tolerating Amaraa's milk pretty well. He's doing very well.

Sunday, March 6, 2011

March 6, 2011 - 2 Days Old

Today is Sunday. I had planned on just attending sacrament meeting at the hospital, but Amaraa asked me to go to our ward and bear my testimony in fast and testimony meeting, and thank everyone who has been fasting and praying for us. We really feel like the fasting and prayers of our family and friends has been a key factor in the progress that has been made so far. Amaraa feels like it has saved her life.

After blubbering all over the pulpit in church, I headed down to the hospital. I went straight up to the NICU to check on Aiden. The first thing I noticed when I walked in was that his Dopamine pump had been shut off. Dopamine is one of the drugs they were giving him for his heart. I asked the nurse about it and she said they had weaned him of it this morning and that they were in the process of weaning him off the second heart medication.

I was able to touch Aiden and hold his hand for the first time today. I couldn't believe how small his little hands were. His whole hand was about the size of my thumbnail. He doesn't seem quite that small just looking at him. He grabbed onto my finger and held onto it for a while -- our first father-son bonding moment. The neonatologist came and talked to me when he returned from lunch and told me that Aiden's heart was looking much better. He did another ultrasound on the heart while I was there. Even to my untrained eye, it was easy to see that it had improved. Based on the ultrasound, he told the nurse to decrease the other heart medication to half, and to stop it altogether in an hour. He also said that they were weaning him off the ventilator and that they had decreased the oxygen to the lowest setting on the machine. He anticipated that they would pull the breathing tube out tonight or tomorrow.

I left the NICU and went to see Amaraa in the ICU. She looked great. They had pulled out the IV in her leg and Dr. Anderson had been in earlier to remove the dressing on her wound. That was very painful for Amaraa, but she was grateful to get it off because it was causing a lot of her pain. When I arrived, she asked me if I wanted to see her incision. I was expecting blood and gore, but it looked very good. I felt much better about things after I saw it. They even let her eat a little bit today. The nurse brought her a strawberry shake and it tasted really good to her. Last night she didn't sleep very well, so she was pretty tired today. She said that every time she closed her eyes, she would have crazy dreams that were brought on by the medication.

Shortly after I got there, the nurse came in and said that they were going to take Amaraa up to see the baby today. They were just going to roll the bed up to the NICU. At about 3:00 we got everything ready and headed up there. What a neat thing to watch as Amaraa saw Aiden in person for the first time! She cried her eyeballs out as she touched his little foot and held his hand. It was a special moment. She kept saying that she didn't think she would ever get to see him after all of the problems she had in pregnancy. She started to bleed at 10 weeks. Making it to 30 weeks was a miracle! The last several weeks she was just praying and hoping and living for him. All of a sudden, she woke up in the ICU and he wasn't in her belly anymore and she couldn't see him. It was a surreal and overwhelming experience to actually get to see him lying there, a healthy baby. She is excited for them to remove his breathing tube so that she can hold him. She was physically and emotionally exhausted when her visit was over.

We took her back to her room and she rested for a while. She keeps improving every day. Thank you all for your support and prayers.

Saturday, March 5, 2011

March 5, 2011 - 1 Day Old

To say that today was an easy day would be lying, but compared to yesterday, it was a piece of cake. The good news is that progress was made. This morning when I arrived at the hospital, I went straight up to the NICU to check on the baby. I knew I would be in the ICU with Amaraa all day, so I thought I should check on the baby before heading to the ICU. When I went into the NICU, the neonatologist was there with the baby. He was just getting ready to do an ultrasound on the heart. During the night, the cardiologist had looked at the heart and had seen that there were some issues. They were seeing some backflow of blood on one of the valves and the pressure within the heart was not what was needed for the valves to shut and seal correctly on each pump of the heart. The good news is that structurally, the heart looked good. They put him on some medicine that made the heart pump harder and said that the problems should resolve with time as the heart muscle strengthens. I watched as the neonatologist did the ultrasound and he pointed out the issues they were seeing. I took some quick photos for Amaraa and then headed down to the ICU.

Amaraa actually looked better than I had expected. She had the breathing tube in her throat and she was sedated, so I just held her hand and sat with her. Her face was still quite swollen, but she was making good progress in getting all of the excess fluid out of her system. The nurse and respiratory specialist said that she needed to get rid of about 8 liters of excess fluid before they felt comfortable removing the breathing tube, and she had already lost 4 liters of that. She was doing great. After I had been there for about an hour or so, they began to wean her off of the sedation and the breathing machine. The only problem was that as they decreased her sedation, the breathing tube became harder to tolerate and she started gagging. Otherwise, though, these were steps in the right direction. They would turn off the machine and let her try to breathe on her own for a period. She was doing really well and was progressing faster than they expected. As the sedation wore off and Amaraa started to wake up more, she started spelling words on the palm of my hand with her finger. Her hands were tied down and she couldn't see what she was doing, so it was difficult to read what she was writing. We got her a pencil and paper and that worked much better. She asked all kinds of questions, mainly about her surgeries, the baby, and all the stuff that was happening to her. Fortunately, she didn't remember much that had happened yesterday.

At around 12:30, the respiratory specialist said they would remove the breathing tube in about an hour. My mom had come up to spend the day with us at the hospital and we thought it would be a good time for us to go to lunch so we could be back for when the tube was removed and Amaraa was fully awake. We ran to lunch and were nearly done when the nurse called and said they were going to remove the tube. Amaraa had asked the nurse to call me before they did it. We finished eating and headed back to the hospital. When we got to Amaraa's room, the breathing tube was gone. She looked great. We were able to give her ice chips and a few sips of water.

In the afternoon, she started having pretty severe back pain. They put some pillows behind her back and adjusted her position in the bed. Adjusting her in the bed caused her a lot of pain. She had slipped down on the draw sheet so that only the top half of her body was on top of it, so as they pulled the draw sheet up, her top half moved and her bottom half wanted to stay where it was. It was very painful for her. On top of that, she was still having the terrible back pain. It felt like the pain was in her kidneys, so they ran some tests to check for infection and ordered an ultrasound of her kidneys. Because the epidural was just wearing off (they give emergency c-section patients a longer-lasting dose of epidural medication), they figured that the pain was just hitting her from that, but they also ordered a CT scan to check for internal bleeding. Amaraa was really nervous about the CT scan because they had to move her from her bed onto the CT scanner table and then back again. After the pain she had experienced when they moved her before, she didn't want to be moved at all. Because of all of the bleeding problems yesterday, I knew it was particularly important for her to have the scan, so I talked to her and convinced her to go through with it. She agreed as long as I was with her the whole time and promised I would make sure they were gentle with her.

This afternoon, I told her about all that had happened yesterday, including the fact that we had almost lost her a couple of times. I showed her pictures and videos of the baby I had taken yesterday and she was so happy that he was OK. I asked her what she wanted to name the baby. I thought she had earned the right to make that decision. :-) The name she chose is Aiden Temuujin Torgerson. That works for me.

We wheeled her down to radiology for the scan. She had some pain as we moved her over onto the scanning table, but we were very careful and made sure we caused as little pain as possible. She made it through the scan OK and we transferred her back onto the bed. We wheeled her back to her room and they got her ready for bed. The CT scan results came back and they showed there wasn't any internal bleeding. They did see some inflammation of the membranes around her kidneys and other organs due to all the bleeding she had yesterday. That was what was causing her severe back pain. Amaraa asked me to go up to the NICU and take some pictures and video of the baby and then bring them back and show them to her. He was still doing well -- about the same as this morning. I took the photos and video Amaraa had asked me to take and then, according to Mongolian tradition, I whispered the baby's new name in his ear three times. I headed back and showed the pictures and videos to Amaraa. She cried. They were able to get Amaraa's pain under control and she actually felt like sleeping. It was 10:00 PM, so I decided to leave and let her sleep.

I read her yesterday's blog post and she wanted me to make sure that I added a few things:
Just before Amaraa started bleeding yesterday, one of our good friends, Choka Walker, came to visit and brought Amaraa some good Mongolian food. She was just getting ready to eat it and was so excited because it was hot and looked so "beautiful". Just then, she felt a gush of blood and thought she would head to the bathroom to change her pad before digging into her lunch. The bleeding was so bad that it gushed out all over the floor of the bathroom and she had to call the nurse in. That was when Dr. Anderson ordered her c-section. Amaraa was so disappointed that she couldn't eat the beautiful food Choka had brought. I made a few other minor edits to yesterday's post, but that was the main thing Amaraa wanted me to add.

Another tiring day. I know the photo isn't very flattering, but this is the one Amaraa wanted me to post. The picture is of her before they removed the breathing tube.

Friday, March 4, 2011

Rough Day - 30 Weeks, 3 Days

Today has been a rough day. I'm going to keep this pretty short because I'm exhausted, but I'll try to cover the bases. This morning, Amaraa wasn't feeling well. She was swollen and achy from the blood transfusion yesterday. The doctor ordered some medicine to help the swelling go down. As soon as they started giving her the medicine, she felt a pop in her lower abdomen and felt a gush of blood (at least she thought it was blood). When she went to the bathroom and checked, it wasn't blood, but clear fluid. The neonatologist scheduled an ultrasound for later on in the day. A little bit later on, Amaraa had a large gush of blood. The nurse called the doctor and he said they needed to prep her for an emergency c-section.

The anesthesiologist and the nurse quickly got her ready and we went down to the operating room. During the c-section, Amaraa said that she felt weird and she started having trouble breathing. She passed out and they had to intubate her. They took me in to see the baby and watch what they were doing with him. It was hard because I was so worried about Amaraa, but it was so good to get to see the baby. After they cleaned the baby up and gave him some medicine to help the little sacks in his lungs stay open, they wheeled his little warming unit into the Newborn Intensive Care Unit. I followed and watched them as they worked on him. He weighed 3 lbs. and was 15 inches long. They put him on a ventilator and put some IVs into his little body. His vitals looked good and the neonatologist sent me back to Amaraa's room to wait for her to come back from surgery. I was so nervous for Amaraa that it was hard to enjoy the time with the baby. Luckily, one of the nurses came in and told me that she was OK and that she would be back to the room shortly.

I talked to the doctor and he told me Amaraa had lost more blood than they had hoped in the c-section. When you lose as much blood as she has lost over the past couple of days, you deplete the clotting agents in your blood. The plan was to watch her carefully and make sure she was clotting OK. When Amaraa finally came in, she was really groggy. They had to give her general anesthesia while she was intubated, so it took her a while to wake up enough to communicate. She was bleeding a lot and they gave her 4 more units of blood (remember, she had 4 units yesterday and the average adult only has 9 or 10 units of blood in their body). She didn't seem to be clotting very well, so after watching her for a while, they decided to take her down to the ICU.

When we got to the ICU, the ICU doctor explained that they were going to try everything they could to stop the bleeding, but if it didn't work, they might have to do a hysterectomy. They worked on her for about an hour and couldn't get on top of the bleeding, so the doctor said they would have to do a hysterectomy to "win". They had been giving her so much IV fluid, blood cells, and other blood products that some of that fluid was getting into her lungs and making it hard for her to breathe. Her abdomen was also filling with blood at the same time, which put a lot of upward pressure on her lungs. They put her on a CPAP machine to help her breathe, which helped her oxygen levels, but because of the fluid in her lungs, she felt like she was suffocating. I couldn't do anything but hold her hand and encourage her to keep taking deep breaths. It was so hard to watch her suffer like that.

They finally got everything ready and wheeled her down to the operating room. I waited with my parents in the waiting room. I was completely spent with all that had happened. I was so worried that I couldn't eat, and my stomach was in knots. To distract ourselves, we went upstairs to get the stuff out of Amaraa's room. Shortly after we got back to the waiting room, the nurse manager came in and told us that Amaraa had finally stabilized. They were finally getting her blood count back up to around a 23, but that she had been down around a 16 (that's after the 4 units of blood they gave her today. She was down around 10 before the blood). The surgery finished about an hour and a half later and the doctor came in and talked to us. He said that once they removed the uterus, they were able to get the bleeding stopped fairly quickly. He said that her lungs were still full of fluid and that she was intubated, so she would have to remain unconscious until they are able to get her breathing on her own. They took her back up to the ICU where she will stay for a couple of days.

Before we left the hospital tonight, we stopped by the NICU to see how the baby was doing. He was doing well and the nurse said he is right on target for where they expect him to be at this point. I feel so humbled by everyone's support, love and prayers. We were praying for 30 weeks and we made it to 30 weeks and three days. Even though today was really rough for both of us, we feel so blessed to have made it so far and that everything went as well as it did today.

Here We Go! - 30 Weeks, 3 Days

Amaraa started bleeding and losing fluid this morning. They are prepping her now for an emergency c-section. I'll post again when we're all done. Wish us luck!

Thursday, March 3, 2011

March 3, 2011 - 30 Weeks, 2 Days

Yesterday was such a rough day that I forgot to mention that we've passed thirty weeks!  Yay!  They have always told us that if we can make it to thirty weeks, everything will probably turn out OK. Yes, thirty-four weeks is better, with less than a 1% chance of any lifelong disability, but thirty weeks is a major benchmark that indicates good things.

Unfortunately, the news has not been great today. They did more blood work this morning and Amaraa's blood count has dropped to 24. That is dangerously low. It was at 27 when they gave her the blood transfusion before. She has been very weak today and even needs help getting up to the restroom. She did manage to make it through a shower today, but the whole time, she felt like she was going to pass out. The doctor ordered another blood transfusion for today. This time, he ordered four units!  That's double the amount she had last time. These transfusions are rough for her. Her chest feels heavy and it just makes her feel miserable. She's halfway through her third unit, so she only has a bag and a half to go.

Amaraa had the same nurse yesterday that was her nurse the night she started her latest heavy bleeding episode. Her name is Amanda and Amaraa really likes her. She is really attentive and nice. Anyway, the same night Amaraa started bleeding, her next-door neighbor started bleeding heavily as well. The nurse was running back and forth from Amaraa's room to the other girl's room all night. Amaraa's neighbor ended up delivering that night after that nurse went home. When the nurse came in today, she told Amaraa that she was sure she would come in and find that Amaraa had delivered and the other girl was still there.

When the doctor came in today, he told Amaraa that she had done a great job by getting the baby to 30 weeks. He also told her that if she has another bleeding episode as heavy as this last one has been however, they will have to "throw in the towel." It is just too risky to allow these episodes of heavy bleeding to continue. He said that the baby looks great and is doing really well, and that all signs point to him doing well if he has to be born early. We're obviously still hoping for at least 34 weeks, but we are just grateful to have made it this far. She started bleeding at 10 weeks, so it's hard to believe we have made it to 30 weeks. We prayed that we would make it to 30 weeks and we have been blessed with that. We're still praying for more, but we are ready to accept whatever comes our way. Thanks to everyone for your support and prayers. Our photo today is of Amaraa having her blood transfusion. Nadia Jackson visited today and brought these beautiful flowers that are on her table.

Wednesday, March 2, 2011

March 2, 2011 - 30 Weeks, 1 Day


Today has been another bloody day. Amaraa has been bleeding a lot more than normal and more than she has for a long time. They put the IV back in this morning and gave her some IV fluid to help with the pain she is having when she has contractions. She has been contracting a lot more than normal as well. The doctor said they will probably have to give her another blood transfusion. Right now her blood count is at 27, which was where it was when she had her last transfusion.

With all the loss of blood, she has been really tired and light-headed. Her nurse wouldn't let her shower today because she was afraid she might pass out. She tried to take a nap this afternoon, but after she had slept for a while, she heard people shouting and hitting on the wall. Not unusual in a pregnancy ward, you might say, but actually, things have been pretty quiet. Anyway, she woke up and looked out the window and two guys were swinging back and forth on ropes outside, washing windows. She was startled to say the least. Anyway, she took a video of the whole thing with her laptop.

Amaraa's time in the hospital is becoming emotionally hard on her. She really struggled yesterday. Her back was aching, she was having contractions, she was tired from her low blood count, and just felt awful. What can brighten the mood of a pregnant woman more than food? So, I asked her what I could go get for her. She was craving sushi, so I made a run to Shoga to get her some (the cooked variety, of course). After we ate our sushi, we watched the movie, "The Social Network". That helped her get her mind off of the misery of being in the hospital. Here's hoping for a better day tomorrow.