Ben!

Earlier this month Ben turned 5 years old. This is a big milestone that brought with it preparations for kindergarten, new responsibilities, new freedoms, and usually a big party. Unfortunately Mom was unable to put a party together this year so we will have to have a big bash next year. We celebrated with cupcakes, presents, and a start in karate.
Ben visited the doctor's office for his check-up a few days later and announced to everyone in the office he was Benjamin Jared Bjarnason, he is now 5, he was there for a check-up, and he did not want any shots! He was taken back to complete all the normal check-up procedures and failed the eye exam miserably. Who knew??? We then saw the doctor and after just a few minutes of chatting with Ben the doctor turned to me and said, "Do you have plans for when he comes home bored from school? He is way ahead of most kids I see and he is reading the magazines in the room. When did he start reading?" I told him he taught himself to read at age 2 and his jaw dropped. He then said good luck with that! I then laughed and said, "Well he's reading but apparently we missed that he was blind to everything more than 10 feet away." He said that happens all the time, (makes me feel a bit better). The nurse then came in and gave Ben 2 shots. (Charley can't believe there were only 2, she had 5, its amazing that they can combine them all now). We left and made an appointment with an optometrist the following day. Ben chose BYU blue glasses, he says because we like the Cougars! At least that is what he tells everyone.In the last month Ben's preschool has been very busy. They captured a leprechaun, visited the fire station, had grandparents day, and had a parent teacher conference among normal class time. At the conference the teacher told me that they were starting rhyming, reading, and spelling. She told me during the lessons Ben is not allowed to give an answer until all the other kids give up and then they will ask Ben for the answer. Ben loves that he is the "special helper" in that way. I'm amazed he can keep his mouth shut long enough for everyone to have a guess before blurting anything out!On a side note, the other day Ben was at the top of the stairs holding something in his hand. Sam started up the stairs and the next thing we hear is, "Hey why'd you throw that at me???" At which point Ben yells out, "Sorry, I thought you were Joseph!" Ronny and I had to bite our tongues from laughing and then called Ben in to talk about the situation. Ben and Joseph go at it all the time. Ben puts up with nothing Joseph dishes out and dishes just as much back to him. Its hilarious and frustrating at the same time. We love Ben so much and are so happy he is in our family. He prays for his family every night with sweet sincerity and has lately been asking the Lord to bless Aaron to be healthier than healthy. Happy Birthday Ben!

On a lighter and faster note.....

While all the craziness is going on with the anticipation of Aaron's arrival life still continues on for us. For the last two weeks Ronny and Joseph have been working on Joseph's pine wood derby car. The two of them researched different strategies and different designs and came up with this year's version.

We all gathered at the church last night for the boys to show off their cars and race them down the track. All the cars were weighed in and Joseph's came in right at 5 oz. There was even a professional photographer there to snap photos of each of the boys with their cars and document the racing.

There were 4 heats and the winner of each heat went to the finals. Joseph smoked his heat and the his semi final heat. Another boy did the same (the bishop's son). In the finals Joseph went down to the other boy 2-1. I was really proud of Joseph, you could tell he was disappointed he didn't win but went and congratulated the winner right after the race.

Ronny breathed a huge sigh of relief after Joseph won his first heat. You would think it was his car racing out there. Joseph was also given the "Most Unusual Design" award. Ironically when Joseph was awarded his trophy he dropped his car and one of the wheels broke off. Thank goodness it wasn't during the races! What will happen next year when both Joseph and Sam will race cars???

Sometimes Specialists can be such downers!

Disclaimer: This is a long one so plow through as best you can!


We had another ultrasound appointment today and of course a different specialist. After the ultrasound tech was done she put up the stats on the screen and Ronny and I both saw that Aaron has grown 4 days in the last 11 and gained 2 oz (roughly 63 grams). This although isn't ideal its certainly better than the last month so we were thrilled. Then the specialist came in and killed our buzz, bah! He showed us the graphs and the regression curves (sorry, math term) where Aaron is at compared to other babies. Obviously we are way below the normal curves and on most of the stats we are in the 0-1%. He then told us that we had a 0% chance of having a normal delivery and 0% at having a perfectly healthy baby and that the chances of having this baby make it were very low. Nothing new there. He then told us that we needed to make a decision on how we wanted to proceed with this pregnancy. It looks as if my placenta has at most a month left to grow this little guy but that he thinks I will likely deliver in the next two weeks. (In my head I told myself we could hold out as long as we need too!) I then told the doctor that we will do whatever we need to do to get this little guy here with the best stats we can and then the doctors would take over and we will deal with whatever happens then. He asked if this was a decision we made because of religious reasons and I said yes but I also feel like religious reasons aside, I am his mother and this is my son and I will do whatever I can to give him the best possible chance at life, that's my job!

At this point I am now being transfered to the specialists at the University of Utah. They can intubate babies as little as 300 grams and will take whatever baby comes at whatever age and do their best. We are at 223 grams as of now, we can get there. I'm still pulling for a full pound, we are half way there now! Knowing that they can take a child as small as this we also know that the odds of his survival long term is very low but we will take whatever percentages they throw out and focus on the positive. I am now waiting on a call from my doctor's office to find out when I see these new specialists. Hopefully in the next day or two. I will now start Non Stress Tests (NST) a few times a week up at the U so that when the doctor says its time they will send me straight to delivery and I will have an emergency c-section. (My other thought was that if the U could be helping me better than why am I not there already????!)

We then discussed my positive results of MTHFR. 5% of people are positive with one marker of MTHFR and less than 1% have two positive markers, guess which one I fall under. Yep that's right, 2 markers! See we can do terrible odds and still succeed. Ha! Then the doctor said that even though I have this disorder this is not what is causing the problems with my placenta and that he really doesn't know why what is happening is happening and that he can't tell me it won't happen again in future pregnancies. I told him I wasn't too concerned about future pregnancies, I was concerned about my current one. He thinks that I have another rare clotting problem that they just haven't tested for yet and that he recommends testing for those and that there are even more clotting disorders that I should test for but can't do until after I deliver. (Really, how many rare disorders can there be????) He also said that I will need to see a cardiologist 6-8 weeks after I deliver to check on my ticker. I looked at Ronny and said I have enough on my plate right now, we will worry about that at a later date! I also told this to my ob when he called me today and he agreed with both the specialist and me that yes it will need to happen but there are bigger problems that need to be addressed first!

So, this wagon train is moving and picking up speed. I told my doctor that we are ready for the good fight and that I have great team players on my side and we are all praying with earnest. He said he is one of those players and that although he is transferring my care to someone with more experience he still wants to be on the team. I will take all the players who want to join in, this little one is coming and we are ready!

Blood Results

My blood results have finally come back. I do not have the clotting disorder the last specialist thought, however I do have an enzyme disorder called MTHFR. This disorder does not allow me to process folic acid which becomes a real problem when having children. Our 4 children with us now are true miracles. I have now been put an a crazy high dose of folic acid in hopes that some of it will get through.

Ultrasounds have ruled out any apparent neural tube problems like spina bifida and sections of brain missing. This disorder can also cause problems with my heart. I will now be watched pretty closely for pre-eclampsia. So far things have been fine. They check my blood pressure and urine for signs of distress regularly. I am now seeing either the specialist or my normal OB weekly. My next ultrasound is scheduled for this coming Monday and I will have them either weekly or bi-weekly from now on.

Its Small World After All (especially inside our church!)

This last Sunday Ronny and I met with our sweet bishop. We knew we needed to update him on what was going on with our family and we wanted to ask permission to give this sweet baby a name and a blessing in the event we are fortunate to have a live birth. He appreciated our willingness to perform this ordinance for our son and actually told us we didn't need his permission. The church handbook specifically outlines that in a case similar to ours the patriarch of our family can perform the ordinance without assistance and without prior approval. (I actually knew this but felt that since we had the time to ask we should).

Our bishop counseled with us for quite some time and lifted our spirits. Towards the end of our time the bishop started to tell us of a great doctor he knew in the military who at one point was the head of obstetrics for all of the troops and their families in Europe. He mentioned that he is now head of obstetrics at a hospital in San Antonio, TX and that he will soon be retiring and it would be great if he came back to this area. I couldn't believe that this was a mere coincidence and asked him if his friend happened to be Dr. Fausett. He exclaimed, "You saw Bardett?" We laughed and said that was the specialist we saw last week and that we could not have asked for a better doctor. The bishop agreed with us and said you could go all across this country and people would know who this man is and would all say he is the best. He quietly said next, "Well now you have two bishops watching over you, you could not be in better hands, the Lord is truly watching over you". We couldn't agree more.

At Peace

The last month for us has been trying at best. With the disappointing news we received yesterday about Aaron's prognosis we have come to terms with what lies ahead of us. The hardest part for me is feeling him move inside me and knowing that I may not feel his physical presence for much longer. Our hope is not lost, yet we understand what reality is and the chance of his survival rests in the Lord's hands. We know miracles happen all around us and know that the children we have been blessed with are miracles unto themselves.

When the first specialist gave us his recommendations and opinions 3 weeks ago we were crushed and felt as if the weight of the world was on our shoulders. Today the news was different but not any better. This time however we have felt so much better. It would be easy to fall into the trap of blaming that first doctor for what he missed and refused to consider. We did make a formal complaint with the office and will leave it at that. What is is, no amount of anger and frustration will change that so we have let it go. We are grateful for the specialist we saw yesterday who gave us a better picture of what is going on and who just listened and took our concerns seriously. He was truly a blessing for us.

At dinner last night I broke the news to our kids. I wanted them to understand that although we pray for the baby to grow and be healthy, Heavenly Father gets to make the ultimate decision. Even though we pray for the baby to come he may not come whole as we want him to, and that its not that Heavenly Father hasn't answered our prayers, he just answers them in the best way for us and that may be giving us peace to know that baby Aaron is where he needs to be. All 4 of them looked at me and said, "We already know that Mom, don't you?". I couldn't believe it, what a lesson for me. Such simple faith and yet as an adult I struggle with that so much.

We are at peace with where things are. What will come will come and we will deal with what the Lord has in store for us buoyed by the prayers offered in our behalf and the knowledge that our Father in Heaven knows our hearts and will give us the comfort that we need. The doctor assured us that Aaron is in no pain which comforts us as well. We are doing what we can to prepare for each outcome and have put the rest of the burden back in the Lord's hands.

Keep Praying

We had another ultrasound today to check on the growth of our little one. In the last 3 weeks he has only grown the equivalent of 5-7 days. We had a different specialist this time who was great. He walked us through what he was finding, asked us about our history with my other pregnancies, and what his thoughts were. Aaron is now growing asymmetrically and is sending all his nutrition to his brain and heart and other essential organs while sacrificing growth in his limbs to continue to survive. I do have placental insufficiency and it has gotten significantly worse in the last 3 weeks. I once again have low fluid and there is a small amount of fluid around Aaron's heart, he also weighs less than 1/2 of what he should so there is no possibility of a successful delivery at this point. The causes for these problems are: I have an autoimmune disease, I and/or the baby have a clotting problem, my placenta has a tear in it and is bleeding into the amniotic fluid, or I have pre-eclampsia, or a combination of some of them. He believes I have had the same placental problems with all my kids and the fact that we have 4 beautiful children is reason to cheer and to continue to have hope.

His best guess is that both I and Aaron have the same clotting problem and that I also may have a small tear in my placenta. He thinks I had the same clotting problem with all the kids but that I did not pass on the gene to them so they were able to make it as long as they did. He thinks Aaron may have the same clotting issue which is causing the problem with his growth. If this is the case there is treatment but it may be too late. They could put me on blood thinners and hope more blood flow gets in, unfortunately because there is the question of a tear blood thinners could cause more problems. The doctor who knows the most about these issues is here in town and the doctor we saw today has consulted and published material on this clotting issue. He said he will do whatever he can to help us (even though he lives in San Antonio, TX). We have found out that the specialists at this practice all live somewhere else and travel around the country to different clinics to treat women with Maternal Fetal Medicine issues. So, we most likely will see someone different every time and that none of them will do the actual delivery when that time comes.

The doctor ordered a slew of blood tests to see what we can find and if there is anything that can be done. He told me I need to be "lazy" as much as possible while still maintaining order at home. (That is certainly easier said then done as the kids are off track at the moment). The more I lay down the chances for better blood flow increases although strict bed rest is not yet warranted. We should have the blood results back in the next 2-4 days. We wish the doctor 3 weeks ago would have ordered the same tests and took into account my previous placental problems. We may have had a better chance but it is what it is. There is no going back now. I have to return for another ultrasound in a week and to see my regular doctor between now and then. Please continue to pray for him to grow. That is our hope now.

We asked how soon they could or would deliver. For any chance of survival he needs to be at least 500 grams, at the moment he is weighing in at only 160 grams. If they can put me on the blood thinners he should be able to gain weight quicker. He told us that there is still hope although the margin is slim. He told us to prepare for a good fight but also to prepare for Aaron not making it. How on earth do you prepare for that???? The fight I'm ready for!

computer down

Our home computer died yesterday so until we get it fixed or replace it the blog will be on hold. Our ultrasound is tomorrow so we will pass on the results when we get a chance.

Final Results

The nurse (Carrie) from our specialists office called again today with our final results. (She and I have had great chats lately, mostly centered around good results and questions I have.) All chromosomes are normal and no viruses. My AFP is elevated but ultrasounds have ruled out any problems with this.

So much of me wants to call the specialist and tell him "I told you so!" and ask if we can finally have the discussion about what else could be causing the delay in Aaron's growth. I promise to be good though and wait for our next ultrasound in 2 weeks. Both Ronny and I have been doing extensive research online trying to piece things together. Its very interesting how many studies seem to contradict each other. We both feel like we have a better idea of what is going on and some answers to some issues I had in previous pregnancies with my boys. We found one study that seems to match this pregnancy pretty closely and they give a flow chart of how to proceed with treatment. Lots of ultrasounds and non-stress tests look to be in our future. It also said the magical day is 32 weeks and 3.5 pounds for a safe delivery. That certainly seems doable and only 11 weeks away.

Its funny how things that seem so trivial before seem to be so important now. With my last two kids I was out of my normal clothes and into my maternity clothes within a few short weeks of a positive pregnancy test. Now I look at those clothes and wonder if I'll ever get in them. I have yet to gain any weight with this pregnancy (even lost a few pounds). You would never catch me saying this any other time but really....I certainly eat enough to get that scale to go up yet nothing so far.