Wednesday, September 5, 2012

Update on life!!

OH my goodness! I feel like I begin every blog post with "I don't know where to start" but seriously how can so much happen in 24 short hours!?!!

It seems like God has done nothing, but answer our prayers since our jeep "blew up", which was our radiator by the way, and not an explosion at all. I had no idea when I asked for prayer in my last post that God would use that very request to meet our needs through the people that would read my heart.

Almost as soon as I hit the post button I began getting texts and messages from people. Some close friends and some strangers. Some offered to bring us meals, some simply brought tears to my eyes by sharing how Landon's story has touched their lives. I was struck by God's perfect timing when a new friend told me that her husband may be able to fix our jeep. Last night Ryan and I stood back speechless as a friend from my small group hauled bags of groceries up to our apartment and filled our fridge and freezer. After she left we just stared at each other in disbelief at what had just happened. Ryan pulled me into a hug and told me, "see, we're going to be ok." :) Then he made himself a peanut butter and jelly sandwich out of the loaf of bread our friend had just brought. I have been making bread for us for the past couple months so it was a real treat for Ryan to have "sliced" bread. If any of you have mastered slicing homemade bread you need to let me know because we just can't get it right. It either comes out too thin and in a crumbly mess or we saw a piece as wide as a brick. "look at how perfectly sliced these are Natalie! It's like the magical bread fairy cut them!"

This morning I was going about my day trying to get things done before Landon's appointment, when our door bell rang. I buzzed them in, but no one came up so I grabbed Landon and hurried down, thinking it was our friend to work on the jeep. It was just the mailman. He wanted me to sign for a package (at least I assumed it was for a package), he left without handing me a box so I felt pretty silly just standing there. I went back upstairs, set Landon down to play and sat on the floor beside him to read the mail. Junk, bill, more junk, then I saw a letter with a bright orange sticker on it. I figured this is what I had to sign for. I opened it and shortly after tears were streaming (I mean streaming) down my face. It was like the wind had just been knocked out of me. In it was a check for $700. There was a sticky note attached to it saying that it was from a "sister in Christ" who had stumbled upon my blog because of mutual acquaintances of ours. It said that she had been blessed by our faithfulness to the God we serve, that she's praying for us and that she hopes the check helps a little (A LITTLE!!!). I was flabbergasted  (is that really a real word)! I just sat there on the floor thanking God over and over again for his faithfulness. For providing for us in every way. Telling him through tears that I just can't believe He loves us this much. I was SO blown away. I texted Ryan and told him he would never believe what just happened!! I told him and he texted me back saying that he was speechless. With this check and the bit we have left in our emergency fund we can pay our medical bills this month which is such a miracle.

If you are reading this my mystery sister in Christ, I cannot express the gratitude my heart feels. We will never be able to repay you, but please know that we will never forget what you have done for us. We will share this story with our children and our grandchildren someday as an example of what the church is meant to be. The hands and feet of Christ. We prayed for provision and God used you, and all of you (you know who you are :) to show us that He loves us and will always take care of us. These past couple days we have seen the church. It was not affiliated with a certain denomination. It didn't meet us inside of a building. It came to our house after dark to deliver groceries, it used words of encouragement to push us along. It used it's God given abilities to look at our broken down vehicle, it offered meals, and just a listening ear. We witnessed the church working the way that God designed and let me tell you, it is a beautiful thing.

I wasn't even through  balling my eyes out when I realized we needed to leave for Landon's appointment with Fernandez. We got there, checked in, went up to heart and lung, checked in again, waited, then went back for his echo. It was long, but it went well. Landon didn't cry even though he was now well overdue for a nap. We walked to Fernandez's office where he was weighed and measured. 16Ib 6 oz and 26 inches long!! I loved the nurse we had for his EKG today. She was SO good with him and gentle when she pulled off all the stickers :) Then came the man we were wanting to see.

Fernandez told me that his echo looks great. He said the the RV even looks a little bigger then last time! "It is truly amazing what you have been able to do with him (like it was me...pshshshsh)." Having a baby with pulmonary artresia is not easy, but you guys are just doing wonderfully. It is really just unbelievable what his heart has done." My eyes were tearing up as he was saying all of this and then he asked me how I was doing since I was obviously emotional. I told him that we are doing great, that we are just so happy that he's doing good. That everything is just because of a lot of love and prayers. Then he went on to tell me that because Landon's rv has been growing they have a very hard decision to make because they do not know if he will be ok if they leave the shunt in and let it close on its own or if they should still do the Glen. He said that although the rv is a nice size they have no way of knowing if his pulmonary circulation will be adequate. He will need to go to University of MN next month and have a heart catheterization done. They will go up through his leg into his heart and inflate a balloon in his shunt. This will stop the blood flow. They will then monitor his sats to see how his body reacts to not having the shunt anymore. Fernandez said that if he tolerates it well and his sats stay stable then they may choose to close the shunt or leave it in and allow it to close on it's own as his heart grows. If he does not tolerate it and his blood flow is not adequate and his sats drop then they will deflate the balloon right away and we will have to make plans for the Glen surgery. He said there is really no way of knowing until they get him in the cath lab. "Landon is a very unique case now because of his heart growth. I am very interested in seeing what they will decide to do." I was just trying to take all of this in. We have been praying for growth for so long and God has been answering our prayers, now we are in a good, but complicated position. We want Landon to be fine and not need the Glen but choosing not to do it may cause problems for him later in life, but it is a risky surgery and performing it will make part of his rv unusable. Pray for wisdom for us and for Landon's cardiologists. October is going to be a very crazy month for us. Fernandez was going to send a letter (he must of meant email, who sends letters anymore?) to Landon's cardiologist at Amplatz. Landon has one last echo and check with Fernandez on the 3rd (his 6 month birthday) and then we will be heading down to U of M for his heart cath. I'm looking forward to knowing some dates so I can feel like we know whats going on finally.

I asked Fernandez why Landon has suddenly become so tired all the time and he said his sats are good so he thinks that it's probably just because he is eating more and eating is hard work for him. He's also more active and he's around the age when babies go through a growth spurt. He also told me that his color changes are normal for him because of his shunt and his circulation right now.

I asked him if after this next trip to Minneapolis and Landon has his cath or whatever else he needs done, if it will be safe for us to take him to church with us? Fernandez got that concerned look on his face (which has become way to familiar) that he gets right before he crushes any tiny hope I have that we can do something out in public. He explained to me that with flu season coming up he really doesn't want Landon out hardly at all. Starting next month through April Landon will have to go in and get a shot to prevent RSV (respiratory syncytial virus) infections. So we shouldn't take him to church for a year? "I wouldn't." I love Fernandez and I take everything he says to heart, but you better believe I'm getting a second opinion on this matter when we go to Amplatz. We will be careful. We will sit in the back. We wont let anyone hold Landon. We'll leave as soon or even before church is over. I will physically sanitize the entire row we sit in before we bring him in. We will purchase a literal bubble on ebay and keep Landon inside until we get home. Ok now I'm getting a little silly, but come on!! I cannot wait until my baby is a year old to bring him to church! Every Sunday my heart aches when I see the numerous other families with their tiny babies and I had to leave mine at home :(  Fernandez explained to me that a simple viral infection could be "lethal" for Landon. Lethal, there's a word you don't hear everyday. I really can't think of a better word to evoke an emotional response in a mother. Well played Fernandez, point taken. But I'm still asking someone else in Minneapolis.

So that was our appointment. Overall, it was awesome news. I left with answers and a better understanding of what the near future will look like for us.

The rest of this month is pretty uneventful. Landon has another appointment to get his head looked at to see if he qualifies for a helmet. When we went last time the man told us that Landon's head really isn't that bad. He said what insurance looks for is the flattening on the sides of the head because that is what will shift the eyes and ears and most of Landon's flattening is on the back. He wanted to wait a month to measure him for a helmet so his head will grow a little more, that way there is less of a chance of him outgrowing it before he gets the best results. The appointment for that is on the 20th so hopefully nothing blog worthy will happen until then so I can get ahead in school since Oct. is looking like a busy month.

I can't tell you guys how much it means to us that you care enough to continue to read about our family. We love each of you and pray that God blesses you and meets you wherever you are at in your journey with Him.


Anonymous said...

I am so glad you got some good news at your appointment. What a strong littel guy you have! I will continue to keep you in my prayers! I would love for Landon to receive my Heart Hug Care Package. Just let me know how I can get it to you. I can drop it off at your door step, or whatever works for you!
May God continue to bless you and your family!
Heart Hugs
Kristi Lafrenz

Daniel and Rachel said...

I'm so excited to see how God is providing for you! You will be able to tell Landon when he's older that when God sends a trial or asks him to do a hard thing that he can go thru it bravely, because you KNOW God provides exactly what you need, exactly when you need it! God is writing an amazing story of love, hope, strength, trust, and the GOODNESS of God with Landon's life!! I wish we lived closer...I'd love to be able to bring you a meal or watch Landon so you could get out with Ryan once in awhile....well, I trust God has put other friends in your life to do those things. :)

Hannah said...

Natalie, Watching our God work through your family has been such a blessing to me! Watching the way he has provided for you, loved you, and done the impossible for you, has been so exiting, encouraging and inspiring to follow! Thank you for being such a good steward of your trials, and sharing the joy of His blessings with all of us out here in cyberspace! May God continue to show himself strong on your behalf!!

The K. Family said...

I don't have a lot of time to read and comment but when I read your blog I want to shout, PTL! I love seeing God work!!! Still can't wait to see Landon!