SG started coughing this weekend, and by Saturday she was wheezing pretty good. We had to pull out “Old Faithful” (the breathing machine) for the first time in over a year. She actually enjoyed it this time because Papa has a breathing machine too, except he wears his at night to sleep.
She BEGGED to sleep in it, but she didn’t win that argument. She was so proud of her mask, and asks everyday if she can do it again!
Our appointment yesterday was met with mixed emotions. I had been dreading going back to Shands, but I am very glad we did. Walking through those doors again, my heart sank as we passed the very bathroom that we had to stop at on the way out the last time. The same bathroom that Rob completely fell apart as he was processing the news we had just received. It was the worst moment of our lives, and it felt as if we were re-living it all over again.
As we walked into the doctor’s office, it was hard to keep back the tears. Oh the joy on the faces of the young mothers that sat there, yet Satan was doing everything he could to overcome what joy we had. Then, a lady that we knew passed by behind the doors, and waved us back. I had no idea she worked there, but she was going to be our tech for our appointment. This was a divine appointment set by God himself, that she would be with us. She lost her own daughter when she was 5 1/2 to cancer. She told us that she had been praying for us, and that she knew we had a hard road in front of us. But she also reminded us that God would be faithful to carry us through it because that is what He promises us. God never ceases to amaze me by his faithfulness to show up in the hardest of times. He reminds me that He is always in control, and He cares about even the least of the details.
As our baby appeared on the screen, she was kicking around like a ninja. We got some really cute pictures of her face and hands. We got to see a different doctor this time, which I was a little anxious about. But again, God blessed us with a very compassionate, kind man that was very informative and answered a lot of our questions.
She looked pretty much the same as last week, EXCEPT her heart is definitely in her chest cavity, though it is not covered by anything in the front. The consensus last week was that it was on the outside. It also looked perfectly healthy, with ALL FOUR CHAMBERS. God is GOOD!!! We even got to see a few of her ribs surrounding her heart. The doctor also told us that her lungs are perfectly formed, which before we were under the impression that they wouldn’t develop. Again, the little things!
I felt the urging over and over to ask and make sure we were definitely looking at a fatal diagnosis. “Are we sure there is nothing that can be done?”
He thought for a moment. He explained that the main issue is not that the organs aren’t there, or that they aren’t developed properly. Because they are all there, and perfectly developed. But that it would be really hard to close up the chest and abdomen once they put all of the organs back in place. She doesn’t have a diaphragm, so they would have to construct one. But he did offer this….
I go back in March. He will scan me again, then conference with his peers and pediatric surgeons to get their opinion on what could be done if anything. The good news is that we never even thought this was possible.
Though this would seem like great news, it is met with great anxiety. Will we know what implications will come with any surgeries should we decide to go that route? We do not want to put our daughter through anything that would prolong any pain or suffering. Our number one priority is to glorify God in all that we do, and we do not want to interfere with what He has planned for her life. So we are now desperately seeking guidance from the Lord as to what we should do. Please rejoice with us as we know that God is working miracles in the little things. But also pray for us as we seek what God would have us do in the life of our daughter.
Today, we finally get to go to Shands for our ultrasound. While we are super excited to see Faith again, I would be lying if I said there was no anxiety. However, God always knows when we need some encouragement, and today was no different. My dear friend, Christina, sent this to me this morning. It couldn’t have come at a better time:)
"Rejoice in the Lord always: and again I say, Rejoice." Phil 4:4
I figure if Paul thought it was important enough to write it twice we should listen to his command. Then I read the following about this verse in the study notes of my Bible:
"This command to rejoice at all times and in all circumstances is nothing less than a call to FAITH. For if the Christian believes that his life and ALL his circumstances are in the hands of a sovereign, wise and loving God who is always working to accomplish good for him, then he can indeed "rejoice always".
Thank you Christina for sending this to me. I have clung to that verse since I read it this morning.
Please pray for us today. Pray that we will REJOICE regardless of what the doctor tells us today. We know that God is at work in many ways, and HIS ways are GOOD!
Cade hasn’t been called “Medi-Cade” since he was 2. He got that nickname because he was so sick all of the time, that one of our friends coined the name just for him. Well, Cade thought 5 years was long enough for that name to be laid to rest, so he used it on Thursday.
I got a call from the school that he had taken a nasty fall in PE, and that he had a headache, was throwing up, and couldn’t remember anything that happened.
When I got to the school, we decided we better call the rescue to come check him out.
This was the ambulance that came to see him. Station 20 is the same station that responded to SG’s Trick-or-Treat fall.
They determined he probably had a concussion, so off to Shands we went. Bless his heart, they had him in a neck brace, and then gave him an iv (“RV”) in the ambulance. That was terrifying for him. But he was a trooper.
We arrived at Shands and they did a CT scan, and it showed no signs of bleeding, but he continued to throw up for several hours. He also had a terrible headache (Imagine that!)
He was miserable…and hungry. But they wouldn’t let him have anything to eat. My favorite line of the night was ,”These people are trying to kill me! They want me to starve to death!” That got a laugh:)
They did admit us for overnight observation, and the new set of nurses told him he could eat. But only one thing would do….CHEESE FRIES! Keep in mind it was after 9:00pm, and not to mention, pouring down rain. But, Momma went to Texas Roadhouse to get that baby some cheese fries.
Doesn’t he look much happier? After consuming 2 packs of pudding, cheese fries, and cheerios, he decided it was time to sleep.
The next day, Aunt Kiss brought us breakfast, then Aunt Amy came. Then Mrs. Kim came with a card and balloon from the whole class. That made his day.
We went back to school to get my car, and all of his classmates had made him individual cards too. He was so excited to tell them all that had happened, but was particularly proud to show them where his “RV” had been. I do believe he really enjoyed all of the attention. It did his little heart good:)
These posts are starting to get a little boring without pictures, and I apologize. I really need to invest in a camera of my own, so I am not depending on someone else to send pictures to me. I will see what I can do:)
We have had a great week! It started with a doctor’s appointment on Tuesday, and Faith had a good strong heartbeat. We have set the date of our c-section for May 11th. Wow! That will be here before you know it. While I was in there, I scheduled an ultrasound for Wednesday morning.
That afternoon, we met with the funeral home to make all of the arrangements. I have dreaded this day since November 15th, but knew we needed to be prepared in the event our Faith is called to Heaven. Rob and I were overwhelmed with the details, but also the thought of the cost. I prayed before we went in there that God would just show up, lift us up, and give us the strength to get through it. When our friend came in to talk to us, she shared with us that they were waiving all of their fees, and that we would only be responsible for minimal costs. Praise God! What a blessing. It just goes to show that in the middle of a terrible tragedy, He is still there. It’s as if He said to us, “Hang on! I’m right here. I have it all under control.” The rest of the appointment was so peaceful, and we really felt the comfort of Jesus right there with us.
Wednesday morning, I picked up Amy and went to my appointment. If you’ll remember, the last one was very hard. I didn’t share this with you then, but I can share with you now. As a symptom/side effect of this limb-body-wall complex (Amniotic Band Syndrome), the baby typically shows signs of scoliosis. Faith had a SEVERE case of it. She was folded almost completely in half, with her legs over her face.
However, yesterday, God showed us how he works, even in the smallest of details. I was prepared for the worst! But, when Faith showed her little face on that screen, her body had been straightened out. Her legs and feet were where they were supposed to be. What a blessing! We could see all of her beautiful perfect little face, and I just thanked God right then and there for being there with me. I am also excited to report that from the beginning, she has measured far behind where she should be. Yesterday, she was only measuring 1 week behind. While it does still appear that her diagnosis is the same, God has worked in some miraculous ways!!! Her stomach and bladder appeared to be normal this time, which was far different than the last. I was able to get a 4D picture of her face, and I will treasure that FOREVER! She looks just like SaraGrace:)
You know, we don’t know what our Savior has planned for her. But we are not giving up hope that He will heal her! In just 6 short weeks, our baby looks completely different, and in a great and miraculous way! But if it is not His will that she remain on this earth, we know beyond a shadow of a doubt that He is using her and her story to impact people for Him. What an honor to be a part of Faith’s story!!!
We will return to Shands today for a follow-up ultrasound from our original diagnosis. And if we are given the same fate as we were before, maybe the next Momma and Daddy who face this terrible situation will not be left to make uninformed decisions.
Our exciting day ended with Cade bringing home STRAIGHT A’s on his report card. He is such a little genius:) Thank you for your prayers for him. He has had a much better week, and I know it is because of the prayers being lifted on his behalf!
I would like to let you know that this Sunday, our church, as well as many others will be observing Sanctity of Human Life Sunday. This time will be a time to celebrate the miracle of precious life that our Creator has blessed us with. During our journey, we have learned so many statistics, but the one most devastating, is the number of babies that are terminated because we do not deem them to be perfect! Did you know that the majority of pregnancies that test positive for Downs Syndrome are terminated? That is astounding! I know that our Faith may not be perfect in the eyes of the world, but I know beyond a shadow of a doubt that she is perfect in the eyes of Jesus. She is just who He created her to be.
13 For you created my inmost being;
you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
15 My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.
But the wonderful thing about God is His unending love, mercy and forgiveness. For those who are living with the regret of decisions made in the past, please know that anything that is laid before Jesus is never unredeemed. Jesus Saves! Jesus Forgives! He can use you and your story to change the lives of others.
I hate to write so many heavy posts, but I do want to make sure that I remember as many details about our journey as I can. I know that there will come a day when Cade or SaraGrace will ask more questions as they have time to process, so I want to make sure I don’t forget.
These past two weeks have been heavy. Our goal for this month was to have all of the arrangements for Faith put together. We are still hoping and praying for a miracle, but if that is not God’s plan, we want to be as prepared as possible. Cade and SaraGrace have both had some tough days this past week. SG is really starting to understand what is going on, and that has been really hard as a Momma to help comfort her. Cade had some pretty rough days too, and when we sat him down to talk to him, he shared that he was “mad that his sister has to die.” He is really internalizing this, and we are praying hard that God will direct and guide us in what to say to him.
But, some sweetness has come from this as well. We are planning on taking a family vacation in the near future, and in the midst of the conversation, Cade piped in. He said, “Mommy, every year on Faith’s birthday, can we go do something fun to remember her?” That just melted my heart!!!! I asked him what he had in mind, but he said he would come up with some ideas.
Last night, during choir practice, Michael shared about how we sometimes become so self-contained, that we do not feel like we have to rely on God for anything. But then things come along, and we find that we have nothing else but Him; that we have to cry out to Him. Jesus loves it when we cry out to Him and give Him all of our burdens. I just want to encourage you to give EVERYTHING to Jesus. Not just your blessings and your thanks, but your burdens as well. Let Him bless you with the peace that passes all understanding. I am so thankful for all of the ways we have been able to see God at work-especially in the small details. He cares so much about the little details, that you have to know He cares about the big things too. I probably would be missing out on those things, if it weren’t for Faith. I just find myself falling more in love with Him, and longing for even more of a relationship.
It amazes me that He knows my name, my every thought, and as the songs says, He sees each tear that falls, and hears me when I call.
Please pray for us over the next few weeks, as we seek God’s will in the details of our Faith. We want Him to get the glory for all of the great things He has and will do!
Psalm 40: 1-3
1 I waited patiently for the LORD;
And He inclined to me,
And heard my cry.
2 He also brought me up out of a horrible pit,
Out of the miry clay,
And set my feet upon a rock,
And established my steps.
3 He has put a new song in my mouth—
Praise to our God;
Many will see it and fear,
And will trust in the LORD.
If you know anything about me, you know I have never eaten healthy in my life. My food preferences include crap, junk, and overly processed fatty and starchy foods. That being said, I have never had any issues with any of my insides.
But…..as luck would have it, on Christmas Eve, I started experiencing some pretty nasty pain in my right side, right under my rib cage that went up into my right shoulder. My sister, being the nurse that she is, looked up the symptoms, and we had all diagnosed it as a gall bladder attack. Granted, I had just consumed more prime rib and fried shrimp than any small army should be allowed, but what else is new?
My mom asked if I should go to the hospital, but I was not about to ruin Christmas morning for my kids!!! I went to sleep (if you want to call it that) and still had the pain. We left to go on vacation, but that sucker bothered me all week. It would literally take my breath away. Not to mention the TERRIBLE indigestion I had all week. But that may have had something to do with the what-should-be-illegal amounts of JUNK we consumed during the week.
When I got back to work on Monday, I got in to see the doctor. She said it sounded like the gall bladder to her too, but I would need an ultrasound. When I asked her what the treatment was, she kindly informed me that if there were stones, we would have to take it out. GREAT NEWS!!!
I went for the ultrasound the next day, and luckily God must have performed a great miracle on my gall bladder, because there wasn’t a thing wrong with it. I was more than thrilled to learn that indeed my pain was from a torn muscle, which came as a result of my 5 weeks of hacking up my lungs. I was convinced my gall bladder was messed up due to the one and a half boxes of Sudafed, and the one entire bottle of Benadryl I had used to treat my illness.
In all seriousness, I was indeed so thankful to not have to have surgery this week. God really took care of that! What a blessing!!! In the mean time, I will gladly take my Tylenol, and nurse my poor muscle back to health:)
Christmas was so much fun this year. I think partly because both kids were really excited. SG would turn on our Christmas tree everyday, and sing Rudolph, Jingle Bells and all of the other Christmas songs in her repertoire.
Our festivities began Christmas eve with prime rib, shrimp, and the fixings at my parents house, to celebrate Christmas with Nanny. After we ate, we exchanged gifts with her. It was a lot of fun!
We, along with Beas, Jah and Brinley, spent the night there. We just knew our kids would be up early, so we lectured Aunt Kiss and Uncle Jacob that they better be there by 7:00 am, because little ones just don’t wait!!! Wouldn’t you know, we had to PRY our kids out of bed. Once they got up, it was ON! We realized how truly blessed we all are. I thought Christmas morning would be tough, but God blessed us with peace and excitement as we watched our children enjoy all of their loot!
We left that day to go to the “Hun-tin House” for our vacation. It was so relaxing, especially when there is nothing to do but shoot animals and sit around and eat. And we did a lot more eatin’ than shootin’. I do love that all of our family enjoys to hunt. We all (including the kids) go together and have some good family fun. Things had been pretty slow at the beginning.
Tuesday we celebrated Rob’s 32nd birthday. My mom cooked his favorite, chicken and rice, and I got him a Carvel ice cream cake. It was heaven on earth I tell you!!!
Then, around 9:00 that night, my dad got the call. My sister, Christen/Kiss and her husband Jacob were up there with us, along with his 2 kids. The sheriff’s department called my dad to make sure no one was at their house, because it was up in flames. Of course, we were all devastated. What a year this had been!!! After we all spent time realizing the blessing that no one was home, we were going to pack up and come home. But they told us there was nothing we could do, so we needed to stay put!
They left the next morning, because they had to see it for themselves. We offered to go with them, but they wouldn’t let us. But, my mom was worried about them, because she knew it would be devastating when they saw it. Good ole’ Amy, my BFF was so kind to go and be there when they got there. Thank God for her. I really don’t know what my life would be like without her!
Here are the pictures she sent:
Jacob’s truck and her boat were under the new car port next to the house, and they were lost as well. But it is amazing how God shows up at times like this. We always question Him, asking “Where are you, Lord?” or “How can you let this happen?” But I can assure you that He is everywhere, even in the tragedies. The outpouring of love and support for them has been amazing. God has blessed them far beyond what anyone can imagine. They have a temporary place to live, and are working hard to put their lives back together. Please continue to pray for them.
On Wednesday, I was feeling kind of down, because I hadn’t felt Faith move in over a week. I don’t feel her very often, but just when I start to worry, Jesus lets me know that she is still there through a little kick!! I cherish each time I get to feel her move. Anyway, I was convinced she was gone, but that night I was laying in Rob’s lap and twisted a certain way. She didn’t like that very much because she kicked the snot out of me!! I was just so thankful for that little blessing.
The rest of the week was fairly laid back. We enjoyed each other as a family, and made memories that will last a lifetime!
I will definitely post some pictures as soon as I get them from Beas’ camera!
I hope that the new year brings you peace and blessings that come only from God. We never know what tomorrow holds, but we do know that He holds tomorrow!
