Sunday's Message

I forgot to mention on my last post that Andy got to share a little bit about our God journey at church on Sunday. I did not get to go to church because I stayed home with sick babies, God knew he was supposed to share and not me. If anyone would like to hear what Andy shared, we have a link to our church (Bethany Alliance Church) on the right hand side column. Messages get uploaded every Sunday, so you can listen to November 25th.

Thanksgiving

It has been a while since I last updated our blog. Sorry for those of you who have been checking it hoping to learn more about what has been going on with Nichole and our family.

Two weeks ago, at Nichole's 6 week check-up with her cardiologist, thay did an EKG scan. Everything with her heart looks great, and the doctor said that he could hardly hear her heart murmur, which means that the small hole she has, is closing up very nicely. God is good, and He continues to take care of our little baby girl!

Nichole's blood count also continues to improve, so we are hoping to be done with mediacations this week. This, however, means two more times being poked. We were supposed to have that done this week, but Ellie has been really sick with a sinus infection and is now on her second antibiotic (but this one is working!). Right now we are praying Nichole does not get sick, since Andy and I seem to be fighting this bug as well. It is already Wednesday and we might not make it to the hospital until Friday to get her blood drawn.

So as life was getting in more of a routine, sickness happened, and it has been crazy at the Stumbo house.

The week after Nichole was born, Andy and I were talking, and as I was crying I said, "Well, God does not give us more than we can handle, right?" I had the answer in my head, "No, He does not." And then Andy said, "I think sometimes He does, because it is then, and only then, that we completely trust and relay on God." "But what about that Bible verse?" I asked confused. "That Bible verse is taken out of context because it is refering to temptation, not to the different paths tha the Lord takes us through." Wow! I didn't know that, being married to a pastor does pay off.

I always thought of it as the Christian cliche we all have heard, God will not give me more than I can handle, but here I was, sitting on our bed, realizing that maybe Nichole's condition and health issues were more than I could handle, but also knowing that God intends all He brings to my life for good, and that now, I could experience what it means to trust in Him with all that I have. I think back to when I felt God asking, "Do you trust me?" "Yes Lord, I do." and then with a smile, and with more love than I ever will know He said, "I will teach you how to trust me." And He is doing just that. I think I was getting too comfortable again, getting in my routine, having things figured out. I needed God to remind me that I need to depend on Him, and to trust in Him with evrything that I have. It has been a hard week with Ellie being so sick, I am feeling like I am about to get rally sick, and I worry about Nichole getting sick. It has been days of trying to hold two girls ALL day long and a lot of crying because Ellie's throat hurts whenever she eats, coughs, swallows, or mommy has to feed or change Nichole. It has been draining, and I have found myself thinking, "I don't know if I can handle this." Oh, but when I give myself in complete trust to the Lord, knowing He can do it, then I don't have to hope that I will pull through this sickness time, I know I will, because He is leading, and He takes care of us, oh how He does." And when we are weak, He is strong. "For He who began a good work in you will carry it on to completion until the day of Christ Jesus." I am honored that the Lord takes the time to work in me! In me! There was never before a time when I felt God's steady and loving work in my life like these last few months. "All I want is to know Him" and to know Him more and more deeply. What an amazing journey He has taken me through, it is the adventure of a lifetime.

And as if that was not enough, my friend Tina from MOPS called me today saying two of my other friends from MOPS want to bring us a meal. Just today I told Andy I had a dream that someone had left us meatballs on our porch. I actually looked outside the window a few times. God knew I needed that, and He uses people that are dear to us to show more and more of His love. Thanksgiving time, where do I beging to count my blessings?

Our beautiful family.

Happy Thanksgiving!

We spent Thanksgiving with my dad and sisters up in Minnesota. (Unfortunatelly Ellie got sick that night). But we did have a wonderful and meaningful time with them.

Always daddy's little princess.

Nichole is 5 Weeks Old!

Time flies by! I cannot believe that Nichole is already five weeks old. Life with a second child is finally becoming more "normal" since we are getting in more of a routine.

Well, first things first. Nichole got her blood checked on Wednesday. As of today (Friday). I had not heard from the doctor in Mayo so I called. They told me they had not received the results from Charles City, so we called her doctor in town thinking maybe they got sent to him instead. Well, they did, and we know that her numbers continue to go down (which is good). I called the Charles City lab and the lady that works there said that she personally had sent the repot to Mayo on Wednesday, so I suppose it is a waiting game for us from their end. We are just happy that Nichole is doing better.

I have been doing some research on the internet about Down syndrome. As a mom, I better be an expert on my daughter, right? I came across a poem by Erma Bombeck. I thought she was just a regular mom witha child with Downs, but then Andy mentioned she was actually a well known writer (I suppose she was not big enough to be known in Mexican literature). This is just the end of her poem, it is God speaking to an angel...

"There is a woman that I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will never consider a 'step' ordinary. When her child says 'momma' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her child, she will see it as few people see my creations.

I will permit her to see clearly the things I see---ignorance, cruelty, prejudice---and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

I realize some of what she wrote was in a time when people with Downs were not welcome or included in society. Things have changed, but I have already experienced some of the ignorance that she mentioned. I was once of of them! But what an honor to be that woman, and what a strength to know that God will be with me every minute of every day for as long as I stay by His side.

Nichole is alrady teaching us that we really do not know what to expect. She is our "low muscle tone" baby, but she can roll over! She did at 19 days, and on her month birthday she started doing it regularly. She can lift her head and body even better that Ellie could at her age. Wow, so little, and yet she has already taught us so much.
Our beautiful girls. Ellie continues to be a great big sister. She asks people if they want to see her baby sister. She hugs and kisses her all the time. Yesterday at the library a little girl tried to touch Nichole (more like pull on her). Ellie looked at her and shook her finger, "No, no." What a great sister.
This is Ellie's friend "Pam." We have no idea where she got the name from other than one of her Sunday School teachers is Pam, but we never heard her say her name before (sorry Pam, but she must really like you)
She gets kissed by mommy all the time. Ellie is now old enough that she can say "No kisses mommy." So I better enjoy kissing Nichole until she can say that. Luckily for me, it might take a little longer that it did with Ellie :)

Praise God!

Our two little girls.

I used to think Ellie was my baby, and now every time I look at her she seems so big! It is hard to imagine she was as small as Nichole.

These are all pictures from the time that we stayed in Mayo.

Proud aunties, Alex and Luise.
My mom loves her new baby girl, she is a proud grandma and a life saver! She came and picked up Ellie while we had to be in Rochester. Between her and my sisters Ellie had a wonderful time and Andy and I were confident that she was not going to be missing us!

Yesterday we took Nichole back to Mayo to meet with the GI doctor. It turned out to be a crazy day. As of Friday, there was nothing scheduled for her to have her blood drawn and check her numbers, I explained to a lady on the phone that it would be pointless for us to be there at 4:00 PM for our appointment if the doctor did not have her lab results. All she was able to tell us is that if we had to do lab work, we needed to be there 3 hours before our appointment, so as we were planning for 1:00 PM, we got a phone call that morning saying we had an appointment at 10:00 AM! We explained we lived 1 1/2 hours away, and we did not make it until 12:00 PM :)

(If you know me at all, you won't be surprised) :)

Nichole slept through her blood being drawn! meanwhile I was standing outside the lab room thinking maybe the rooms were soundproof! I realized they were not as I heard Andy talking to the nurses. At 4:00 PM when we met with Dr. Freeze (who was also her doctor during her hospital stay) she said her numbers looked beautiful! Praise the Lord!

She said most likely she just had an immature liver, and it took a little longer for things to go through. So now we are weanning her off her 2 medications. he will be done with one this week, and hopefully done for good in the next two to three weeks.

The Lord is good. So many answered prayers, and so much love shown to us during these last 4 weeks. We are blessed, and His blessings continue to pour down.

Great is His faithfulness.

Back Home!

Well, we were wrong - we said that we would for sure be at Mayo for one more night, but after we posted the doctor came in and asked if we wanted to go home (silly question) and then moved the blood test from evening to afternoon. The test came back with the level being the same and so they will have us come back in a week to check her and see where she is at. We were able to leave the hospital around 5:00 and headed up to Minneapolis to pick up Ellie. We stayed there for the night and came home today. We are praying that her bilirubin level has dropped significantly by the time we see them again so that they are not concerned about additional problems with her liver and do a biopsy. We would also love for her not to be on medication. But, it is great to be home - thanks for praying!

Liver Biopsy?

Hello All - the results from the blood test showed that her level hadn't really gone down or up which means that they are leaning towards doing a liver biopsy. They are planning to draw her blood again tonight and see where her level is at. At this point, if it hasn't gone up dramatically, then we will go home and they will give the medications some time to work. After a week or so, they would then determine if biopsy is necessary. So, for sure one more night - maybe more. We will let you know if anything changes!

HIDA Results

The doctor just told us that the gall bladder is working just fine - which means they have completely ruled out biliary artresia! That is good news because artresia meant surgery for sure and at some point in her life most likely a liver transplant. They are still not sure why her bilirubin levels are high, but are going to check her levels again to see where she is at. If the levels have gone up, they will most likely do a liver biopsy on Monday. If the levels have gone down, they will most likely send us home and put her on a few medications to help the level continue to drop. We are feeling pretty positive right now that the level has dropped because Nichole is finally gaining some weight and we think her color is looking better. Pray with us that we will be able to come home soon and that Nichole will be healthy. Thanks for all your prayers and support over this past week!