Tuesday, May 31, 2011

Feed Me!

Yesterday afternoon I arrived right at 2:00 in time for his afternoon "cares". Aaron's doctor came right over and asked if I had spoken to the nurse practitioner yet. I told him I had just gotten there. He then told me they had decided in rounds yesterday to start giving Aaron Vitamin D and Omega 3. They then decided that it would be better if I actually gave it to him through his feedings. I told him I was happy to do whatever I needed and he gave me the doses of the vitamins I would need to take. This is a no brainer, tell me what to do and I'll get it done.

After he left Aaron's nurse asked how long I was planning on staying. I told her I could stay as long as they needed me to. She then asked if I would like to hold him, I said of course and asked if they were changing the linens again. She said no, they were changing the entire bed out and that I could hold him on my chest. I noticed she had brought a rocking chair in and I asked if that was for me. She said she knew I would be coming and waited to change the bed out until I had arrived. I was sooooo excited and cried a few tears. I finally got to really hold my son! It was wonderful. I held him for almost an hour and a half and it was the sweetest feeling. Aaron talked to me during our time together. He would squeak and I would look down to see if he was crying, nope just talking. I wish I could record it, its the cutest thing.

The nurses told me he had been upset all morning and that they could actually hear him fussing across the room. His nurse tried to settle him and even gave him his anti-anxiety meds but that didn't work either. She finally realized the boy was hungry. Unfortunately he was still 40 minutes from his next dose. Last Friday they finally restarted his feeds at 1 ml every 6 hours. Then they moved to 2 ml every 6 hours. Then to 2 ml every 3 hours., and yesterday he was upped to 3 ml every 3 hrs., and today he will get 4ml every 3 hrs. He likes to eat! We hope this means he will start to grow and gain weight. Ronny asked last night what the most he will get at one time. They will increase him to 7.5 ml every 3 hours 1 ml a day. As his weight increases they will up his max amount. Today Aaron will have another echo to make sure his pulmonary hypertension has resolved. The cardiac specialist will then weigh in on what to do with the PDA. We should know sometime tonight what has been decided.

As I was holding Aaron I noticed that several nurses, doctors, and staff would come in the room and walk right to his bed. He is in the very corner and at the end of the room. They would walk past several other babies straight to us. They would all say, "I just came to check on our peanut." Aaron's story has spread in the NICU and all who come in contact with him immediately fall for him. He is well cared for and looked after. Many of them call him "my baby". We love to see so many take an interest in him and feel of his spirit. He couldn't be in better hands!

Sunday, May 29, 2011

Sunday May 29th Update

I went up to see Aaron for a couple hours yesterday. I was there for rounds Friday morning as well when Sam was down at Primary Children's. Aaron has been moved back to his high flow machine. He is continuing with the nitrous oxide that is mixed with the oxygen from the high flow machine. He is being weaned off the nitrous oxide and should finish with that on Monday or Tuesday. His stats look great and his oxygen saturation is down to 24 or 26%. He was given another blood transfusion Friday and looks so much better. The doctor approved Aaron to resume his feedings 1 ml every 6 hours on Friday and he was increased to 2 mls every 6 hours yesterday. He seems to really like this and is digesting things great and continuing to have poopy diapers. His weight is coming back up and he is back to 390 grams as of yesterday and hopefully will be higher today.

Aaron has been taken off his steroids and will be weaned from his caffeine shots sometime this week. His only pumps are administering TPN and fat emulsions (both are fat and nutrient related). He has also been changed from versed to adavan for his anxiety. He seems to do much better on the adavan, he has also been weaned down from a dose every 3 hours to every 6 or as needed. He really doesn't seem to need it unless labs, x-rays, or tests are ordered, he really doesn't like to be messed with. (Can't blame him there!) He will have another echo done on Tuesday by the Cardiologist from Primary Children's. The doctors and nurses at both hospitals seemed to know about Sam's surgery and Aaron's stay in the NICU. When they walked in the room at both hospitals they would ask about the other child and how they were doing. I don't know how the word got out but we were grateful for their concern and encouragement. Aaron's doctor told me I needed to get more sleep, I agreed and asked him if he could tell me when to do that. He couldn't give me an answer and just hugged me. He is not the kind of guy that you would think would show that kind of affection, but it was greatly appreciated!

Sam is doing good. His pain isn't as great as it was the day he came home. We both went to Sacrament Meeting today and then came home. He still walks hunched over and gets up and down very slowly. He is restricted from any contact sports (karate) and from swimming for the next two weeks. No one is happy about that. Our pool opened this weekend and we were hoping to go swimming while they're off track. (Reminds me of last summer with Joseph's finger!)

When we arrived at the hospital with Sam last Thursday he was quite the trooper. Uncle Mike came to help assist Ronny in giving him a blessing. (Thanks Uncle Mike!!!) He had an IV put in and blood drawn. Those results came back muddled as his white cell counts were normal but other results indicated an infection. A ct scan was ordered and again the results were a bit odd. No sign of infection but his appendix was twice the size it should be. The surgeons were called and asked for a consult. They took one look at it and said it needed to come out. We signed the paperwork and headed to the OR. During all the wait time between tests and consults Sam was getting extremely tired. When Sam gets tired he has a harder time controlling his ADHD. I have never been so grateful for his hyperness as I was that night. As Sam became more hyper he was less likely to notice the pain. He also kept us all laughing which lightened the situation. Its a good thing too because if I wasn't laughing with him I would have been crying and that was the last thing I wanted to do in front of Sam. After surgery we met him in recovery and he had the nurse there rolling. The surgeon came to talk to Ronny and I and told us the surgery went well and they discovered the infection had just started in on his appendix. He was diagnosed with stage 1 appendicitis. They normally don't get them this early which requires longer stays in the hospital. We are so grateful to have caught his early.

We made it to his hospital room right about 1:30 am. Ronny gave him a kiss and went home as he had to work that day. Sam asked for a popsicle which he devoured. After that we turned off the lights and went to sleep. At least he did. The chair bed wasn't the most comfortable and my incision made it even worse! In the morning Sam was pleasantly surprised to find out he could order whatever food he wanted whenever he wanted! After cereal for breakfast he ordered a soft pretzel and a strawberry milkshake. His eyes were much bigger than his stomach but he enjoyed what he could eat. He also had a male nurse which he thought was awesome! (The teenage girl next door may not have thought so though.)

He was discharged at 1:30 in the afternoon and the two of us headed home. Ronny and I are very thankful that his mom (Stephanie) was there to hold down the fort at home and take care of the other kids. This allowed both of us to be there for Sam and for each other. We could do with a bit less excitement and more sleep I think.

Friday, May 27, 2011

Sam heads in for surgery!

Yesterday after running around all day with doctor's appointments, orthodontist appointments, and other errands, Sam came and told us he was not feeling well. He was running a high fever and his belly hurt. We called the doctor, headed in, and then were sent immediately to Primary Children's Medical Center. After blood work and a ct scan Sam was diagnosed with an enlarged appendix and Stage 1 appendicitis. His appendix was removed laproscopically just after midnight. Because we caught it early he had antibiotics through his IV for 12 hours following surgery and then he was discharged. He is hurting but doing well. (The details really bring the humor out but for now this will have to do).

I did run up to see Aaron during surgery (the two hospitals are connected by a bridge) and again this morning. He is doing well. He's back on his high-flow machine and back on his feeds. Lots to update but it will have to wait until both Sam and I get some sleep. Exhausted just doesn't seem to cover how I feel at the moment.

Wednesday, May 25, 2011

Another Setback

Today I dropped off the kids and Nana at the zoo and headed over to the hospital. When I arrived I noticed several people standing around Aaron's bed. I asked what was going on. I then looked up at the computer monitor and noticed Aaron's heart rate was on the low side and he was having a hard time keeping his O2 stats up. I looked at the nurse and she said he was having another "episode" and that he had been having them all night. His oxygen had been maxed out at 100%. The nurse practitioner came in and told me they were going to change his breathing machine to a c-pap machine that would give him more help with a higher pressure. She said that sometimes after they extubate these little ones and then put them on the high-flow machines they do well at first and then slowly start to loose the power to keep going. She thinks Aaron just doesn't have the muscle mass to continue to do everything on his own. The c-pap machine will give him the help he needs and if he does well enough they will put him back on the high flow machine later. His stats looked much better after changing machines. He then had an x-ray which set him off again but I was able to calm him down. Then he had an echo. He did not like that! He fought the tech every minute but he was able to complete the test. Right after the was completed the nurse and I jumped in to clean him off, change his diaper, and settle him down. We were able to calm him down fairly quickly. Today I heard my little one cry, he cried quite a bit. I wanted to just hold him close to me and I used all that I had to keep myself from reaching in and taking him out of that bed and holding him close. I'm so glad he calmed down quickly after that echo or else I may not have been able to stop myself from doing just that.

The results of this x-ray show that his pic-line may have been pulled back during one of the tests or one of the episodes he was experiencing. This may have to be reinserted. His echo is another matter. This indicated that Aaron has pulmonary hyper-tension. He was treated with nitrous oxide and his stats seemed to stabilize immediately tonight. It also showed that the PDA that was diagnosed earlier has come time to be addressed. The preliminary notes show that it is moderate to large in size. The pediatric cardiologist at Primary Children's is going to look at the echo tomorrow morning and recommend medication or heart surgery to close the gap in his heart. We will know sometime tomorrow afternoon what has been determined.

Keep praying.

Tuesday, May 24, 2011

I have a diagnosis!

First things first, Aaron! Ronny and Stephanie (Nana) went up to see Aaron last night, I wasn't feeling too well so I stayed home. Stephanie has pictures on her camera so I will have to download those for you later. Aaron was doing great and pretty much had an easy day yesterday. He did have a head ultrasound and the results came back normal, no bleeds. With two normal ultrasounds the next one will not be done for another month. I went up to see him this morning. When I arrived everyone seemed to be a little on edge and he was having another x-ray done. I asked what was going on and the nurse practitioner said Aaron didn't seem to be himself this morning. I looked up at the monitor and noticed his heart rate was on the low side. I asked what his O2 stats were at and they said they had to up him to 60%. That is high for him. They checked his stomach and saw he had not digested his last two feedings and his temperature seemed to be really low. I sat down and just talked to him. Shortly after, his heart rate came back up and they had to start lowering his oxygen level. His temperature also came back up to normal. They did give him his anti anxiety medication but he seemed to settle down before that had a chance to kick in. The NP commented that he just needed me to settle him, that was bitter sweet for me. I know it helps but the times I can't get there to help they have to medicate him, that I don't like so much.

I was there for Rounds and met his "team": neonatologist, nurse practitioner, respiratory therapist, pharmacist, and nurse. There was one other person there but I don't know what job they had. They started throwing out all kinds of numbers and letters that I'm sure stood for important things. Afterwards the neonatologist and nurse practitioner came over and explained a few things. His glucose, blood pressure, blood gas, triglycerides, and a host of other important levels were all great! I think the term they used was "you couldn't ask for more perfect numbers". His platelets are low but they will let them go a little longer before they do another transfusion. They are going to up his fat emulsion to 1.0 up from .6 (yes they are pumping fat into his veins!). They are going to lower his breathing pressure on the high flow machine from 2 liters down to 1.5 liters and see if that helps with whatever was going on today. The x-ray came back looking good. The neonatologist ordered another EKG for tomorrow because he is still concerned that his heart is rather big for his size. We'll have the results sometime tomorrow.

On to my news. My specialist emailed me today with the pathology report on my placenta. It seems that I have something called Chronic Histiocytic Intervillositis (CIUE). Its difficult to describe but I will do my best. It looks like histocytic cells form and cause severe inflammation in the placenta causing lesions. These lesions then get covered up by fibrin deposits. To quote my doctor, "It's not well understood and we don't know what causes it." She sent us an abstract to a study done in France, I think, where over the course of 9 years they studied 69 pregnancies with this diagnosis. 69 in 9 years, can we say RARE! Surprise, not really. I sent her some questions I had and will see what she can find out.

Monday, May 23, 2011

One Week!

This is my hand over Aaron calming him down. Usually when I come in and talk to him he will wake up and "help" with his lines. I let him move and stretch for a few minutes and then do my best to calm him down so he doesn't have to have more medication to be sedated. The less sedation the better. Other than when he is weighed, this is as much as we get to touch him at one time.
See below: Aaron is "helping" with his breathing tube. Not really helping though, that tube is rather important and needs to stay there buddy! Notice the size of that diaper, the size of the smallest diaper is about half a graham cracker and it was big on him. This one is about half the size of a newborn diaper you can get at the store. They had to put him in this bigger diaper because he pees like crazy. We noticed when we changed his diaper the nurses had even stuffed gauze down the front hoping that would help with the tidal wave that seems to come. When they weighed this diaper it came in at 17 grams. When your entire weight is barely over 400 grams you can see that this is a significant amount he's peeing off! He's also pooping, which tells us his digestive system and bowel system are up and running! I know its crazy to hear me get so excited about my boy's diapers but that's what you get today. :)
Above: The tube taped to his hand is his pic-line, this line is used to give him his medications. He also has a peripheral line in his leg where they will draw and administer transfusions. Usually they would put a double pic-line in but Aaron is too small for that so this is what they had to do. They put these new lines in and took out his umbilical lines as those lines are prone to more infections. An infection now would be devastating so we are all for less germs!
One week ago today! That's right 1 week, Wonder Boy continues his fight and we are cheering him on! (This is one of my favorite pictures of him right after he was born, check out that hat, I need to track it down up there, it has to be so small!)

So the big news from yesterday..... did you notice the large respirator taped to his nose in this last picture???? Now go back and look at the upper pictures. That's right no respirator!!! Yesterday at 2:00 Aaron was extubated from his respirator and oxygen lines were put in. Aaron is breathing 100% on his own! The machine he is on now is called a high flow machine and will monitor his breathing pattern and give him a dose of oxygen anytime it registers that his breathe wasn't big enough, just fills in the gaps so to speak. It does not move his chest up and down or inflate his lungs, its just a support. We had not expected this to happen for a few more weeks so we are somewhat in shock as to how well he is doing. They do have the respirator right next to his isolette just in case they need it again. Hopefully not!

On Saturday the doctors also decided it was time for Aaron to start "eating" and started him on 1 ml of breast milk every 6 hours through his feeding tube. His stomach is checked before each feeding to make sure the last had been digested. So far he eats like a champ and everything is going through which leads to those poopy diapers I was talking about earlier. Last night we were there when he was fed and his little eyebrows raised up as if stay say, yum! He also calmed right down after it went through and went to sleep. He is doing so well with this that they are going to double his intake today. 1 ml every 3 hours. Aaron also grew 1 centimeter this last week coming in today at 25 cm long. I know 1 cm sounds so little but we cheer for each 1 we get. He is scheduled for his next nuero ultrasound Monday morning. They are mainly checking for bleeds in his brain. If all comes back normal he won't have another one for a month. We should get the preliminary results sometime tonight and the final ones in a day or two.

We are able to visit and call his nurse at any time day or night. We try to call every morning for an update, just after his "cares" at 3, and before we go to bed at night. At least one of us also visits him each day. He has his own nurse assigned to him so someone is there with him at all hours of the day. We wish one of us could be there with him day and night but that just isn't reality, for now this is enough.

Keeping Busy

The crazy thing about this tower is that only half our blocks were used in its construction! These are the blocks that Dad and Papa made for Christmas one year. They seem to still be getting plenty of use!
Forts and block towers seem to be the Sunday activities for our big kids. Mom and Dad even consented to a camp-out in the fort. The upstairs sure was quiet last night when they were down in the basement! I'm sure they didn't fall asleep until the wee hours but the fact that they are off track right now allowed that to happen. Hopefully a few naps will be in store for this afternoon.

Saturday, May 21, 2011

Sat. May 21st Update

Ronny and I headed up to the "Hill" to visit Aaron tonight. We arrived just before "cares" so we were able to chat with the nurse practitioner and meet tonight's nurse. The nurse had a nursing student there training and told us that Aaron is such a unique case they feel like he is a good baby to train new recruits on. Really they just go over all his stats and monitors and explain all the lines he has in. It was actually interesting to listen to her train as we felt like we were learning and "training" too.

We were a little late then getting started and then after we changed his diaper and took his temperature the all too familiar knock at the window came. This means a new arrival is about to come in and everyone gets kicked out in preparation to stabilize the new infant.

Here's the good stuff though.... While I was sitting there waiting to change his diaper I noticed that two of Aaron's umbilical lines were gone and two pic-lines were now there. One in his leg and one in his arm. I also noticed that his feeding tube that usually just lies next to his head to allow air out of his stomach was hanging on the side of the isolette with milk in it! I leaned over and asked if they had started to feed him and they said they had just started that afternoon. So we were told yesterday the pic-lines wouldn't go in until Sunday and that they for sure wouldn't start feeding him until next week! Apparently he's doing well enough to move forward on both. Here's the really crazy news though... the neonatologist on today is considering taking Aaron off his respirator as early as tomorrow morning. We were stunned and asked if he was really ready. I think there is going to be a bit more discussion on that decision, at least we hope so. Part of me is saying "whoa, too much too fast, slow down" and the other part of me is cheering his progress on. This roller coaster seems to be picking up a lot of speed lately!!!

Thursday, May 19, 2011

Aaron Update Thurs, May 19th

Ups and downs today.

Ups: Aaron is off all his blood pressure medication. He gained 20 grams in one day. He had his first poopy diaper (Ronny was there for that one!). He is taking more glucose which means he is using it to grow and they need to keep up on it. The swelling in his upper body seemed to go down today.

Downs: The NNP approached Ronny today with our first setback. I haven't had a chance to really go through it yet with him as he had to rush off today so he'll feel me in more tonight. Aaron seems to be having a hard time making new blood. His bone marrow seems to be falling short in replacing the blood that is taken for lab work each day. They mentioned it to me in passing yesterday but didn't seem to be concerned but if they approached Ronny today to discuss it, it seems to be more so today. He is getting blood transfusions for the time being to replace the blood but his body needs to pick up and make it on its own here at some point.

I'll go in tonight and see what else I can find out but that is the news for now.

Wednesday, May 18, 2011

Aaron pics

Some of you have been asking for a picture to give you an idea of how really small Aaron is. So here you go. This is the picture of the half second pause right after he was delivered and right before he was handed through the window to the NICU.

Here he is from today. Aaron's skin had a bit more thickness to it. I wasn't able to see straight into his abdomen like I could on previous days.

The light shining on Aaron is very bright and keeping him warm. The NICU isn't kept as dark as this pic makes it seem.

Aaron is doing well.

I know everyone is wanting to hear about Aaron (me included!). I was able to see him for about 1/2 hour yesterday when my Mom came. I still have to have someone to take me over in a wheelchair so I'm at the mercy of the staff or someone who can visit who is able to take me in. Ronny has been able to go over more and even change his diaper yesterday and has talked with the nurses more so I'll let him send his own updates when he gets a chance. I talked to his nurse then and she said he is doing really well. He had an EKG on his heart that showed a small amount of fluid just behind his heart. They were surprised at how little fluid there was and that so far they are not concerned about what he does have. They also did an ultrasound on his brain to check for fluid and other problems but everything looked normal. He does have something called PDA that most premies have and some newborns have but at this point they are not too concerned about it and if it becomes an issue later they will address it then. He does have a small whole in his heart but again they are not yet concerned and will watch it. Because of his size they only like to touch him every 6 hours to do their tests and change his diapers and linens. If we call ahead we can find out when that is scheduled and they allow us to help with that. I called his nurse last night to check on him. He had been fidgety she said so she gave him something to calm him but it dropped his blood pressure so they had to up his dopamine a little but that he was stable once again. The nurse told Ronny that this is going to be a critical week for Aaron. How he does this week should give us an idea of how things will play out. He has made it through his first day and we are absolutely thrilled. Aaron is not the smallest baby they have had but they said he is close to it so we know we have lots of hurdles to overcome here. He is a fighter, given that said we know that his life still remains in the Lord's hands and we are cautiously optimistic about the road ahead for him and our family.

Ronny and I tried to prepare for all of this as best we could but now we are seeing that in that prep work we are still so far behind. The staff here have been great and are really helping but things like realizing that I would need to be pumping here and what things I would need just didn't make the list in packing for the hospital last week so now we are doing our best to play catch up. I think part of it also was somewhat not knowing the outcome of Aaron's arrival and not wanting to over prepare for things that would be hard. Does that make any sense?

Its early Wed. morning and I am up feeling as if a freight train hit me in the gut. I don't know if its because I was still on all the pre-eclampsia meds or still hyped up on adrenaline with all that has happened but now I am feeling this c-section for the first time. Ahhhh! This is my first and my last but any advice from all you seasoned pros out there who could give me some hints and suggestions on how to get through this easier and better I would greatly appreciate it. I had cut my meds in half yesterday because I felt good and am now feeling the foolishness in that decision and asked for the full dose again. I wasn't allowed to walk yesterday but today it looks like I have work to do there and hopefully it means I can get over to the NICU more today. I'm on a floor where there are no babies so the nurses are a bit more hands off. I had my nurse come in last night and told her I feel like I don't know what I'm doing and had her write down for me what I should be doing and what I should expect to feel. That is on a white board in front of me now so that is helpful. With Aaron not here with me I feel like I need to be in the NICU more but I am also trying to figure out my bowel system once again so I can't go over unless I have that under control and again unless I have a nurse who can take me. I'm torn with wanting to be there, being miserable here, and worrying about my big kids and husband at home. its just so much to take in. I can feel my meds kicking in so I will sign off. Thank you all for your wonderful support and your prayers and continued prayers in Aaron's behalf. They have made all the difference.

All my love

Tuesday, May 17, 2011

baby Aaron pic

Aaron Thomas Bjarnason

Aaron Thomas Bjarnason was born Monday May 16th, 2011 at 3:02 p.m. He weighs approximately 14 oz and has blond peach fuzz hair. After two unsuccessful attempts at a vaginal delivery Aaron was having none of it, he flipped himself around into a breach position as if to demand a c-section. Once this happened things moved pretty fast.

Once Aaron was out he was immediately handed through a window into the NICU where they were unsuccessful in their first two attempts to intubate him. They had given up and were about to bring him back to us when he started to breathe on his own. They then tried again and were successful getting a tube down. They then moved him over for an x-ray to make sure the tube was in its proper position and little Aaron knocked out the tube completely. He then started to cry and they noticed he had normal O2 levels on his own. They waited to let his lungs get a good workout and then reinserted the tube. He has been on very low oxygen levels ever since and has been moved off of one ventilator to another that allows his lungs to do most of the work. He was causing so much fuss and trying to pull his tube out that they finally had to sedate him.

I was able to see him for only a minute before they transferred me to recovery but Ronny has been able to touch him and gave him a name and a blessing there in the NICU. He again went into see him late last night. The neonatologist has evaluated Aaron at being only 28 weeks gestational age. This is a wonder as he should be 31 weeeks. Nothing about this little boy is "normal" it seems and he has everyone guessing. I had some problems getting my blood pressure to stabilize (really high then really low) and so I have not been allowed to even sit up on my own yet. This morning the nurses are going to try to get me in a wheelchair so that I can go and see my little one.

We are overcome with emotions of gratitude for our Heavenly Father who has blessed us with this beautiful child. The miracles we have witnessed have been endless and we continue to hope and pray for more each day.

Saturday, May 14, 2011

Delivery is Imminent

So our hopeful quick trip up to University Hospital for monitoring turned out to not be such a quick trip after all. My blood pressure looked good but several labs were ordered to make sure all was still well. Unfortunately this time around we were not so lucky. Blood and urine results came back positive for pre-eclampsia. The results in a normal woman 31 weeks pregnant with a larger baby with the same results would be in the mild to moderate range. Unfortunately with all my other issues going on (low fluid, abnormally small baby, placental insufficiency, mirror syndrome, etc....) I was immediately moved into the severe category.

This new diagnosis then brought in a move to labor and delivery, an IV and pump, a team of doctors and nurses, a quick ultrasound, and the Delivery Plan. Because I'm severe its no longer safe for me to continue growing Aaron much longer. Things have now been set in motion to deliver in 48 hours. In the ultrasound Aaron came in at 417 grams, our first weight milestone. I was then given steroids to help his little lungs and then put on magnesium sulfate to keep my blood pressure in order. I signed a consent to do a c-section and for the NICU to take our little one. At this time Aaron is looking good and his heart is going strong. As long as his heart stays good and my vitals and labs continue to be stable we may have a vaginal delivery and avoid the c-section. If all goes well Aaron will be delivered sometime on Monday and hopefully not sooner.

We met with the NICU doctors a little while ago and they walked us through what will most likely happen in the first few days. I think they expected us to be more overwhelmed. We smiled, asked a few questions here and there, told them as soon as it was possible Ronny would like to give him a blessing, and told them we were ready for a good long fight but that we would take things as they come one thing at a time.

Forward we go!

Bedrest What's that?

Since leaving the hospital last Monday things have not exactly been restful and relaxing. (Not too surprising at my house).

Tuesday started well enough with a decent doctor's apt. Later on we realized that Ronny's Mom was missing out an another family event so we spent a few hours searching for flights to allow her to get there. Sam mentioned he didn't feel well at scripture time. We didn't think too much of it and put the kids to bed. A few hours later I realized that Sam had shared this little gem of a bug with me. I then spent the next several hours loosing all the contents of my stomach.

Halfway through Wednesday I started to feel better and was able to eat some solid food at dinner. After dinner Ronny took the kids off to karate and I took Ronny's Mom to the airport.

Thursday started off slowly and then sped up when I received a phone call from the boys school informing me Sam was in the nurses office. I loaded Ben into the car and we headed over. We found Sam holding a swollen pinky in an ice pack trying not to cry. I looked it over and tried to assess if it was broken. The swelling and his cries of pain pretty much prevented that, so we checked him out and headed over to the instacare. The x-rays showed no break but each of the three joints were sprained. A splint was applied and advil was given and back to school Sam went.

Friday was spent at another doctor's appointment and a visit from a good friend. That night the stomach bug seemed to hit me again. This time however, instead of keeping my bp in normal range it seemed to jump up high one minute and go down low the next. This morning I was still feeling a little off so we called to hospital and called in my Mom and headed up. We had hoped for a quick visit and hopefully return home. Then the real fun began....

Tuesday, May 10, 2011

Freedom! (At least for now)!

Yesterday my doctor came in to see me and asked if I wanted to go home. I was shocked! So apparently every morning the specialty group gets together and goes over all their patients and the question lately on my case has been whether or not they should send me home. I was told that normally they do not allow someone like me to go home even with the good bp reads I was having because they don't trust the patient to come back when it gets bad again. They all agreed that I was a responsible patient who would return. (I had to promise a few times over that I would). I think the other factor was that I came in on my own in the middle of the night when it was bad the first time and wasn't sent in by a doctor. My discharge paperwork also requires that I will take my blood pressure at home regularly and that I now have 2 doctor appointments each week and its officially on paperwork that I am on bedrest. The other big factor in sending me home was that they asked how long Ronny's Mom was going to stay. I told them at least a few more days at which point they said ok, you have help at home, you are responsible, and you'll be seen biweekly by your regular ob so we are willing to let you go. I didn't argue!

I called Ronny at work and he came to get me. I think had he been there he would have argued with the doctor. He's worried, I know he feels more comfortable with me in the hospital being monitored than at home with the kids. I think my biggest hurdle in coming home will be convincing Ronny I can chill even when chaos ensues. I did remind him that we were saving tons of money is gas with me home as opposed to him driving up everyday. (That only helped a little).

The hardest part for me is when the kids just fall back into the routine with me here and come to me with all their problems and me having to send them to Nana or Dad to fix them. Its unnatural and I'm still working on it. For now I am home and we are moving forward. Forward we go, I think that is our new motto!

Sunday, May 08, 2011

May 7th Update

Saturday was a little bittersweet for me. My doctor came to see me the night before and we talked about being able to go home. She told me that my blood pressure reads were looking really good and that she was comfortable with me being a good patient with help at home and knew that I would come right back if I had any problems with my blood pressure or any other ailment. We chatted for about an hour and in the process of our talks the nurse came in to take my vitals and my blood pressure had spiked again. Just when my hopes were up for being able to go home they ended right there. I was disappointed but at the same time I sure didn't want to go home just to turn right around and come back so it was a little bittersweet. She seemed more upset about telling me I had to stay then I really felt though. I want to be safe, we have come so far. The last thing I want to do is be foolish and mess up the good things going for us right now. I am now officially 30 weeks! Big milestone, yet we have so much work to do.

She stayed for a while longer and asked me about my family. I told her about my kids and how Ronny and I met, but then I felt really impressed to talk to her about why our family was special and why Aaron is so important to us. I asked how familiar she was with the LDS faith. I told her how important our family was and that our family was eternal. We talked about what it meant to be sealed in the temple and how whatever happens with the end of this pregnancy, Aaron is a Child of God and that he is our son and that whether we are given the chance here on earth to raise him or would have to wait until after we die, we would still have that opportunity as long as we were faithful to our covenants we made when we were sealed in the temple. It was such a great conversation and the spirit was really strong. She told me that she loves to see Ronny and I when we have appointments because she knows that we are in this together and that we are making decisions with all the information in mind and that she knows we take them seriously and that we pray about them as well. She said although she feels like she gives us bad news every time we see her but she always feels happier after she leaves us. She also said that she wants nothing more than to come to a big party on Aaron's first birthday!

In the end I'm sad that I am not home with my family but I'm glad I was here for that conversation. She has always been supportive of our decisions even when we disagree. Now though she knows the background of why and how we are making our decisions. That means a great deal to me.

Thursday, May 05, 2011

May 5th Update

Today I met with my specialist as well as another high-risk specialist. (I liked mine so much more!) She is happy to see that my blood pressure is looking good and thinks that the bedrest is helping it to stay down and that she recommends that I be downgraded to a regular room where I will be monitored every 4 hours as opposed to every hour. (Sounds good to me, only a couple middle of the night wakeup checks as opposed to what I've been doing.) She recommends that I still deliver but understands my decision and respects it. My blood and urine tests have all come back negative for pre-eclampsia so they are sticking to the Mirror Syndrome diagnosis for now. Given that, they won't consider releasing me until I deliver and asked if I understood that I could be here for a long time. I told her the longer I am here the better chances Aaron has and will do what I can for him. She was concerned about the stress it would cause our family and our children especially not having Mom at home. I told her we had great family and friends who are stepping in to help out and we will do our best to maintain peace at home and help our children through this crazy time. Its good to know that she is thinking about the big picture, not just me and the baby but the rest of our family.

We also talked about Aaron and what we want to do once he meets the 400 gram threshold. To put things in perspective, a normal baby with normal fluid and no hydrops would have a small chance at survival at 400 grams but significantly better at 500 grams. So our little guy has two strikes against him already. The one good thing about Aaron's prognosis is that I am almost 30 weeks along. Although he is measuring significantly behind in growth, he is helped by the fact that his brain and heart and other organs have the added benefit of maturity. Does that offset the other mitigating factors? The answer is, they just don't know how much it helps but it does help some. So she and I talked about what we wanted to see happen and what a good decision would be once we met the 400 gram threshold. I told her that if it were up to me alone I would say lets get to 400 grams and re-evaluate where we are. If my health continues to be stable and he continues to show signs that he still has fight in him then lets set a new goal of 500 grams. If we reach that and things still look ok we shoot for 600 grams and so forth. The concern with this is that we are running out of time for him to grow and for my placenta to still function. If we get to the 400 gram mark and we see that he is struggling then we will decide if the NICU is the right place for him and if doing the "classic c-section" is better than doing an induction. I asked when the next ultrasound would be and she said 3 weeks. That seems like an eternity but if we can get to 3 weeks, hopefully we will have better options ahead of us. One day at a time, really thats the plan.

I also asked about visitors in the new room and we are told I can have visitors during visitor hours. I asked about my kids and were told that the only children allowed to visit are my own and that in order for them to come we have to show proof of immunization against measles. I told her no problem there, it will be nice to see them and give them hugs. I've been doing my best to facilitate daily routines from here over the phone and so far the kids seem to be back to a normal routine. This of course will all change when they go off track in two weeks but we'll figure that out when the time comes. Ronny is doing his best to juggle everything. He is torn between feeling like he needs to be here, at home with the kids, and at work. He is doing so much and I pray he has the endurance to keep it up. He is one amazing husband and father and I am lucky to have him!

Tuesday, May 03, 2011


Last night my blood pressure spiked and I was admitted into University Hospital. I have now been diagnosed with Mirror Syndrome. In the short version my heart is now mirroring the same problems as the baby's. I stabilized quickly however and was monitored every 15 minutes. I am now monitored every 30 minutes so I am improving. They are concerned not only for my blood pressure but for swelling around my heart and brain like Aaron's. I don't seem to be retaining any fluid as of yet and am doing good to drink lots of water in combination with my IV. I was told I am now a permanent resident however and will stay until Aaron is delivered. We had an ultrasound done this morning and Aaron has made his greatest progress in the last 2 weeks and is now 335 grams. Our specialist then came into to see us and told us she is now more concerned for my health than the baby's. She wants to deliver immediately knowing Aaron would not survive and told us that although I am stable for now that could change at any minute and I could go down hill fast. We told her to give us a few minutes to talk about things and then decided that as long as I am stable we will continue. We have prayed about this and heard opinions from a few doctors now but we feel comfortable in our decision. We have asked for someone to come and assist us with a blessing and are waiting for them now. We are so close and feel we need to give him just a bit more time but also understand that my health has to come first and have told the doctors that if anything changes we will deliver then.

My specialist is not very happy with our decision but she respects that we have not made it without thought, reservation, and prayer. For now she is consenting to let us continue. In our ultrasound we discovered that Aaron's hydrops had not increased in severity and possibly became better. We attribute that to the walks I have been taking. I am not yet convinced I have the mirror syndrome they suggest, I feel more like I over did it the last few days and hope to convince the doctors of this as well with good blood pressure reads. Time will tell. We hope Aaron continues in his progress and gains these grams quickly. We are indeed in need of more prayers for myself as much as for Aaron. I know the Lord is watching over us, I can feel the peace he brings. Ronny is sleeping, something I have yet to do with all these monitors alarms and tubes. They have now unhooked me from most of them and we hope to be transferred to a permanent room this afternoon.

All our love,
Denise and Ronny