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We brought Simon home last Friday. He is 8 days old already! Time has been going quite fast since we have been home. It has been going really well too! Simon is a laid back, sweet, sweet baby. He has been really sleepy and so cuddly.

Lillie was so happy to have her baby brother home. She thinks she needs the pillow under her arm to hold him. She tried to hold him without it and she thought her "arm was about to fall off."

Three brothers! They are getting lots of time together in the morning while Lillie is at school.

Titus likes to sit with Simon on our bed.

The boys thought it was so funny to see Simon without his clothes on. But Titus wanted me to put his clothes back on him before he held him because he "didn't want to feel his diaper." Ha!

More brother time!

We went to his one week check up today and he seems to be doing really well so far! He had lost a little weight in the hospital and hadn't quite gained his birth weight back but it was just an ounce or two off-so pretty good!

Test Results

These are a couple of pictures of Simon getting ready for his ultrasound. He wasn't so sure what to think about it =)

We had a sonogram done of Simon's abdomen on Thursday afternoon around 2:00pm. Then a few hours later the surgeon said she would like a CT scan done, with contrast fluids. They put an IV in his head, which he actually did not even cry for. They gave him a little pacifier to suck on and the nurse really knew what she was doing, and it didn't seem to hurt him at all! But we had to leave it in all the way until it was time to go home, just in case the doctors would order more tests that required an IV. He cried more trying to get the tape off than he did sticking a needle in his head!

About 6:00pm a CT technician came to the room to give us a baby bottle of water with some other stuff in it that would help to show his stomach and bowels. And told us she would be back at 7:30pm to get us and Simon and go down to CT. They had me in a wheelchair carrying Simon and Matt came too.

Simon got the CT scan done and it was a really short test. He was only lying on the bed thing for about 10-15 minutes total and that wasn't doing the scan the whole time. So we were thankful that it was short! And again, he did great, not one peep out of him!

We spent a second night at the hospital and were hoping that it wouldn't take too long for the surgeon to look at the scans and let us know what was going on. But again, we had to wait all morning and into the afternoon for anything. 

The surgeon came up to our room around maybe 2:00pm and sat down and told us that, indeed it was a neuroblastoma tumor. She thought by the sonogram that was probably what it was but was still hedging just a little and said to herself "These parents need an absolute definitive diagnosis" so that is why she went ahead and ordered the CT scan. She said doesn't like to do CT scans of newborns if at all possible but felt like she needed to in order to know for sure and get a better picture of it and where it was.

It was only about 3cm in size-so it actually showed up a bit bigger by looking at it through me and into Simon. And it had good borders, it wasn't invading any other organs or seeming to cause any harm or damage to Simon at this time. We praise God that he did not need surgery immediately!

With it being a relatively small tumor, the course of action is very very minimal at this point. We are to set up an appointment with the pediatric oncologist for next week. So I am sure we will be thinking of questions to ask him.

And the surgeons office will be calling us to set up monthly sonograms on Simon to monitor the tumor. We will also be checking his urine for the catecholamines-I think monthly as well. If the tumor grows for 2-3 consecutive months or has any unusual changes that seem concerning, then we will talk about removing it. Also, if the catecholamines in his urine start to increase then that would be another reason to start talking about having it removed sooner rather than later. 

(Catecholamines are certain hormones that the adrenal glands produce. Back at the very first specialist appointment-she described them as the fight or flight hormones)

She told us that in Japan, neuroblastoma is very rampant and that all newborns are tested over there for it.  That is where she is getting their treatment plan from and how they know some of these facts/statistics. She told us that, these smaller neuroblastoma tumors, will often go away on their own. Up to 80% of the time over in Japan, they go away without any treatment.

She feels that surgery right now is a higher risk than the risk of the tumor growing/spreading. She said that she and the pediatric oncologist were in complete agreement as to the treatment plan. She said that even if this was her own child, these are the steps she would be taking. She assured us that if it was causing any problems, that they would be down in the OR right that afternoon getting it out.

Also, we think we understood her, that if it did not go away, even if it did not grow/change, that once he was older-closer to a year, then they would do surgery and remove it. 

We may call St. Jude down in Tennessee-the leader in children's cancer treatment and research-and see what they have to say as well-if this is the plan they would go with also. But right now, we feel confident that we are in good hands and are trusting God to guide us.

We were able to get started right away with our dismissal papers after the surgeon left and were able to come home last night to our own beds and be together as a family again! So nice. Simon is a complete sweetheart and so far seems very mellow. Lots of squeaking and little grunts but not too much crying. Daddy even rocked him out in the living room for a couple hours during the night so Mommy could get a little sleep without his little squeaks around =) But I love those little newborn sounds right now! So very sweet! And his big brothers and sister love him to pieces and haven't stopped asking to hold him. Lillie is just watching over him so well!

Thank you all for all the prayers and all the encouraging comments. They mean so much to us! All the verses posted helped us and encouraged us so much and just seeing how much everyone cares is amazing. We are so thankful for all our family and friends and our church and even strangers who are praying for our family!

-I will probably do a post about his birth soon but just wanted to get out an update of the test results.

Sneak Peek

Just a quick little update and sneak preview of our little guy. These 3D sono pictures were taken at 37 weeks. She said they don't usually get a good 3D of the face but a pocket of fluid just happened to be in just the right spot! These are the first 3D pictures we have ever had of any of our kids and it is just amazing! This first picture here she labeled where he has a big toe underneath his nose and his hand by his face as well. He almost, almost put his toe in his mouth while we were looking but then he just didn't quite do it. But that would have been so funny!

I have one more sonogram scheduled early this week then Baby is scheduled to be here soon! Which we are very excited for and yet also nervous. We will be glad to get some questions answered after he is born! We are trusting God, that he will place the right doctors in our path and give them the wisdom that they need to make the right choices for our baby! And that we will have a peace about the course of action they choose to take. Or not have a peace about it, if it is not the right thing. Sometimes we just have to let go and trust God to guide us, instead of trying to manipulate things to go the way we think they should. Not my will Lord, but yours be done. Sometimes it is hard to not be in the drivers seat.

 Still just more of the same as far any changes in the mass. Still don't know for sure what it is exactly. It is growing along with the baby but not totally sure if it is growing more than the baby. If that makes any sense. The sono tech, said she thought that it was not growing at a rate faster than what the baby is growing at. But I don't really know! The last measurement last week showed that the mass was about 3.6cm. (which would be 2 cm bigger than the very first time it was seen) The specialist still doesn't think it is behaving like a bleed and she really does not think that it looks like a cyst. So we will try and get it figured out after he is born when they can get a clearer picture!

We are excited to meet him and to show him off to everyone! Looks like he has got some chubby chubby cheeks on him! And his lips are just so cute! Thank you everyone for praying for our baby and our family!

First Day

Lilie and Titus on their first day of school! They were so excited to have school finally start!

Showing how old they are! First I told them to hold up what grade they are in. So Lillie help up a 2 and then Titus couldn't figure out how to show a K for kindergarten. So we just did ages! 

Titus and his cousin are both in Kindergarten but not in the same class. The were bummed but I'm sure it will work out fine! And they will have all the other school years to be together!

Zethan came along to see his sister off in the morning. He brought along his "poker" with cheerios on the little prongs. I didn't even notice it until we were in the gym waiting! Funny guy! And he was wearing shorts and cowboy boots...

Lillie all ready to go!

Then we came back home and waited for it to be noon to take Titus to his class. All morning long I heard, "Is it lunch time yet, is it lunch time yet?"

And finally it was time to go. Titus looks a little grumpy because I was trying to get his picture by himself but a certain little brother wouldn't get out of the way!

Putting his stuff away from his backpack. He was so big! He didn't act nervous or scared or anything! Mommy was a little sad to see him and his sister growing up so fast! This is the first year that Lillie will be going full day. 

They have both just had an awesome time these first couple of days. They were even sad that the weekend came so soon! I can already tell that they are going to have a great year! 

Family Day

We went up to Salina for a fun family day last weekend. They were having their county fair and the city waterpark was right across the street! Matt had gone up early in the day to help a friend haul a load of cattle to the sale barn and then the kids and I went a little later and looked around the fair while we waited for the waterpark to open.

The kids thought these mini horses were the cutest thing ever!! Lillie wanted to show her Daddy as soon as we met up with him!

When the park opened we headed on in to swim!! Zethan used to be so so scared of most things and swimming on his own was one of them. But this summer he has conquered his fear and was quite the little swimmer with his life jacket on!

Lillie also was getting quite brave and tried all the big slides except for one. 

Matt took came down a few slides too! Just after this picture above was taken, his tube caught the water and flipped him over backward! Haha!

Zethan and his daddy. They are pretty good buds.

And then Titus and his cousin Everet are best buds as well! Everet was so cute with his goggles on. He kept them on the entire time we were there!

Some more swimming! The waterpark was just perfect for our family! It had a lazy river that went around the middle of the park and you could get off at different spots. It has a mini wave pool that was just the right size! And a big family slide that all the kids could slide down together at the same time. Since it wasn't a huge place, we didn't feel like it was hard to keep track of the kids. If one of them got ahead in the lazy river, we knew we could catch up quickly! And it was cheap too! Only $3.50 for kids and $5.50 for adults! 

A few Questions Answered

We had a meeting with a different surgeon and it went much better. We felt a lot more hopeful and peaceful about things when we left her office than the last time we left the surgeon's office.

We still do not have a definite answer on what this thing is that is inside our baby. But right now she said the first step it to just wait until he is born to say conclusively what it is. He will have a sonogram on himself after he is born-within that first day. She said that he will be checked for all his vitals and they'll check his breathing and make sure all those normal things check out and get him cleaned up, have his first bath, hopefully get a feeding in and some cuddles. Then they will take him down for a sonogram and that should tell them exactly where and what it is. After she takes a look at the pictures she will have a consultation with us and let us know what the next steps will be. If for some reason they are still not sure what it is after the sonogram then they will order a CT scan. Also, after he is born they will be taking a urine sample to check it for catecholamines, which are present in 95% of patients with a neuroblastoma. Or if for some reason this thing has grown tremendously and is very large then they would do a biopsy on it right away.

If they conclude that it is neuroblastoma and it is not too big of a tumor (more than 3-5cm) then most likely the course of action will be minimal. With first just watching and checking on it with sonograms and urine samples. She said that in a lot of cases a neuroblastoma tumor diagnosed in utero will actually go away on its own within 6-8 months or even a year. If it appears to be growing and/or the catecholamines in the urine are increasing then we can talk again about what needs to happen. Possibly chemotherapy and surgery to remove it. If it does turn out to be neuroblastoma then an oncologist will also be brought on board to help with the treatment plan. (If it is neuroblastoma and we don't feel comfortable with the plan of action they are taking then we may discuss having his treatment elsewhere but I think we will cross that bridge, when and if we find out it is cancer)

She said that if it is an adrenal bleed or a cyst then they actually don't do anything. That those things will resolve on their own and there is no need for surgery. Of course there were even a few more differentials of what it could be, but it seems like a bleed, a cyst or a neuroblastoma tumor are the three things that they seem to think it will end up being. She said that an adrenal bleed is much more common than a neuroblastoma. But whatever it ends up being, they have dealt with it before and they should be able to take care of it. Of course there are always a few crazy cases but most likely it will be fine.

As long as the sonogram shows that there is nothing majorly wrong or something that needs taken care of right away, we should be able to bring him home in the same time frame as normal! That is very good news for this mama to hear! Of course we still know that it is possible that it will show something that needs taken care of immediately but we are praying that it is something that will not be serious!!

Also, I asked if giving birth could cause any problems with whatever this is, like rupturing it or bothering it or whatever and she said that it would not be a problem.

Also, we are not quite sure why the specialist seemed so sure that it is neuroblastoma and that he will have surgery when no one else seems quite as sure. She even recommended that we tour the NICU in case he needs to be there for awhile after surgery. But maybe she was just covering her bases and making sure everything was lined up for worse case scenario. But both surgeons seemed like it probably wasn't going to be a big deal and they both seemed like they weren't quite sure why we were there in their office since we don't even know for sure what it is. It's just that one surgeon was much nicer about it than the other.

I have another sonogram tomorrow at the specialist's office and then an ob appointment right after, so again we will see if it is changing or growing. I will be 37 weeks tomorrow so he should be good to come anytime! Of course I have never been early before so we are counting on this one being no different =)

Thank you all so so much for all the prayers and everything else you have done for us! People from church have made us meals for those days when we are busy with appointments and even a certain someone came and did my dishes and cleaned up the house while I was gone today =) And others have helped out by babysitting. Thank you!! We still have many more appointments ahead of us it seems like, but for now we are happy with the report from today!! 

For a day that started out not so great with Titus getting Kindergarten shots and Lillie getting started on antibiotics for an infection that started- who knows how- in her toe and had red streaks going up her foot and ankle. We are in good spirits. And we praise Jesus for his protection and Him giving us a peace that passes all understanding.  

Last night and this morning I was actually quite overwhelmed and exhausted and nervous about meeting with a surgeon again and I was worried about Lillie's foot with the red streaks and then the doctor being very concerned as well about the redness and saying the infection could get into her blood stream and be very serious. When we got back from our first appointments this morning for Lillie and Titus, I just crashed until it was time to leave again for the surgeon appointment. But now as I am writing this, I feel much much better and I can only say that it is because of our Savior's amazing grace and how He cares for us and how He has used different people in our lives to encourage us on this journey. So thank you again to everyone who has encouraged us by praying and cooking and cleaning and everything else!!

Latest Craft Creations

I have several different areas of "crafting" that I like to do. Sewing. Crocheting. Jewelry making. Paper crafts. But the desire to do each of them kind of comes and goes. I just finished up a bunch of sewing and my crafting mood is starting to swing back around to crocheting.

I decided I wanted to try my hand at making some stuffed animals. I got a book with some patterns and have found some fun free ones online too. 

I started out with making a cow. I had thought maybe it would be one for the new baby but as soon as I was finished with it and Zethan got a hold of it and I saw how much he loved it, I told him he could keep it!

Then Titus found a pattern he wanted me to use for his. He wanted a dolphin! They are very inexpensive crafts to make but take time! Titus kept asking, "Are you done yet? Are you done yet?"....

He was very happy with the end result though!

And miss Lillie Loo wanted a kitten. (When she just brought it to me to take a picture of it, she said the eye and the whiskers needed redone-they played with them on the trampoline last night).

The kitten's name is Melody and Lillie picked out the colors for it =) 

I thought with the new baby coming it would be fun for them to have something special and new here just for themselves. I have been making a lot of baby things so it was fun to make something for the little munchkins too! Something to make them feel special too!

And of course she wanted to pose with her kitty. Crazy, unbrushed hair and all =)

36 weeks

I got a call from the specialist office this morning that they wanted me to come into their office for another sonogram so they could compare it to the first sonogram that they did two weeks ago. That way they could compare it better since it would be the same technician, same equipment.

The sonogram today seemed to show about the same thing as the one on Monday as far as I could tell. But the specialist said that the changes did not seem to be anything to be concerned about. They weren't bad changes or necessarily good changes.

She thought that maybe there was a bleed into the mass.

I asked her if what it looked like now changed her opinion of what she thought it was (Neuroblastoma, with a the slight chance of being a cyst or something else).

She said that she would need to do more research on whether a bleed would be more consistent with a cyst or with neuroblastoma. It is so rare to even find a mass here that I guess she wasn't confident in saying much else. As my sister said, you know it is rare when even the specialist has to so research.

But since everything checked out okay with the baby and he wasn't in distress or anything, then we are still just waiting and watching it.

She did want me to begin coming to her office for the sonograms from now on so we can avoid this situation again where the other office sees a change and then I end up having to come in to her office anyway to check on things.  (Some of the images that got sent over from the other office looked concerning but in viewing the sonogram today, she concluded that it was just the way the picture was taken.) So I will continue my ob care with my regular ob but then have the sonograms at the specialist office. It is more driving and more time consuming this way- but I am happy to do it to make sure we keep a good eye on our baby!

Also, we did get an appointment scheduled for next week with the other pediatric surgeon. The sonogram technician and the specialist were both very apologetic about having to deal with that! So far they have been so so kind to us!! In fact, the specialist wasn't even scheduled to talk with me after the sonogram today but she came out and talked to me to reassure us!

We have quite a few questions for the surgeon and hopefully she can answer some of them. I know that it is still another 4 weeks before my due date so we may have more info as to what this thing is by the time he is born but we would at least like to be somewhat prepared for the different scenarios and for what the first step will be after he is born to get it figured out.

After my appointment today I got to go to Target and get a few things I needed to have on hand for when the baby comes. Yesterday I got the cradle out of the basement and made a new cover for the bumper pad and a new sheet for it. We don't know how long he will need to stay in the hospital-if at all-when he is born but I feel good about having things come together to be ready for when he is home!!