Thursday, November 22, 2007

So Thankful

So thankful for so many things... Thankful for the wonderful family that surround us on this day... for the help, the food, the fun, the laughter, the competitiveness, and the love. Thankful for the gift of friends and those that love us. Thankful for the worldly possessions. Thankful for the heavenly blessings. Thankful for the sweet little boy playing outside in his new little vest, football gloves and cute hat. Thankful for the tiny child kicking inside me and waking me at night. Thankful for their daddy and my husband that loves and takes care of his family. Most of all, thankful for the Lord and for beautiful, unexpected surprises that remind us that we are indeed a family of four, that Maddox is here and is enjoying his first Thanksgiving.

It's funny... I didn't think once today that Maddox probably won't be here at this time next year. And yet, I couldn't help but think how different it is with a diagnosis such as ours looming overhead... everything changes. I don't think about Maddox's 1st Thanksgiving for the 2008 year when he would be here; instead, we think about and celebrate his 1st Thanksgiving in the present, in 2007 when he IS here, alive and well inside me. That's not how it normally goes, but then again, so many things aren't right now. Processing it all is very different, and although strange... somehow, strangely, not yet too hard. True thankfulness is all that filled me today, and although the ugly beast of competitiveness reared its head briefly, I hope that all that I am reflected how thankful I am in the Lord for the bountiful blessings he has poured out upon us.

We have so much to be awestruck by, so much to stand in amazement for, so many graces for which to be in complete wonder. Thank you Christ Jesus for your love, your perfection, your presence, your sacrifice, and your restoration of life. We are TRULY THANKFUL!

"Be joyful always; pray continually; give THANKS in all circumstances, for this is God's will for you in Christ Jesus." 1 Thessalonians 5:16-18

Friday, November 16, 2007

25 Weeks... With Hope

Thank you so much for all of the prayers for yesterday's doctors appointment! We are so incredibly thankful and we know that the Lord heard each one as we were able to spend a great deal of time with Dr. Rowe and his staff as they assessed Maddox's condition.

Overall, the appointment went well... However, not all of the news we received was great. Maddox has fallen behind again since the last time we visited their office at 18 weeks when we initially received his diagnosis. At that point he was 8 days behind, now he is 17 to 18 days behind in growth. They also found many concerning abnormalities with his heart that they simply couldn't pinpoint at 18 weeks due to his size. I don't remember many of the issues they mentioned yesterday, but I know that most vessels and arteries were either smaller or larger than they should be... nothing seemed to be the correct size. His heart rate was 143, but I think that is a little misleading after they explained that his heart isn't beating regularly and that the pericardium (the outer sac around the heart) has excess fluid, essentially indicating that his heart is working overtime and is getting stressed. They also noted that there is probably a hole in his heart, but they couldn't be certain based on the images they were getting at the time. In addition, due mostly to the spina bifida, the fluid build-up in his head continues to get worse(hydrocephalus).

I will say that his heart condition has now become my biggest concern, which before was the spina bifida complication. Both of the genetic counselors we have spoken with have indicated that heart conditions, and ultimately heart failure, are the cause of most babies not making it to term. And although I can't say by any stretch of the imagination that we are happy with the news that we received, because Dr. Rowe spent so much time, energy and effort to explain Maddox's entire condition in detail, we both feel much more confident in the direction we are heading. He was a picture of straight forwardness, with compassion; concern, with gentleness; optimism, with reality. For many of the issues he mentioned that weren't promising, he mentioned something that was right and good and "normal". They noted that he doesn't have the "rocker bottom feet" that many T18 babies have, he is able to open his hands fairly well, and he has a "beautiful face"! (I know that every mother, regardless of her child's worldly appearance, believes that her baby has a beautiful face, and although many babies with T18 have cleft lips/palates, we are appreciative that that is one less issue we are facing.) Dr. Rowe was wonderful about giving us the good with the bad, the possibilities with the reality.

So where are we right now? We know that Maddox weighs 1lb 2oz, my amniotic fluid level is within normal ranges and he is still very active. We know that we have decisions to make in the next few weeks regarding the rest of our care and our medical team. We know that there is a strong possibility that we could still go to an appointment and not get a heartbeat... BUT we also know that the Lord has BIG plans for us and we want to put this situation entirely in His hands. Although the news was not good and Maddox's condition seems to be worsening, we are okay with where we are and the decisions we have made up to this point. We trust that the God of Creation, the Prince of Peace, the Giver of Life knows us intimately and that He will prepare us, sustain us, and fulfill His promises to us throughout the rest of this journey and beyond. "For I know the plans I have for you," declares the Lord, "plans to proper you and not to harm you, plans to give you a hope and a future." Jeremiah 29:11.

I must also mention, for the record, that although I don't know if He necessarily gave this to us, He did allow for it to happen, as he did for Job in the Old Testament... Whether this is to build up our character, to show Satan that we will not let him overtake us, to demonstrate to the Lord that we are true followers of Christ and we will be faithful, to strengthen our testimony, to work on my patience, to prove that He can perform miracles... whatever it might be, it's an all or nothing game and I am all in! I am all in to love my children. I am all in to love my family. And most importantly, I am all in to love my God that strengthens and sustains me each and every day.

The Patience of Job~ Women's Devotional Bible
"... Everyone suffers- the righteous and the unrighteous- including Job, who "was blameless and upright; he feared God and shunned evil" (Job 1:1). For some reason God chose to use Job as an example of patience in the midst of great suffering.
When something tragic happens, we often scramble to figure out why. Did I sin? Did they sin?... But not all suffering is the direct result of sin. Paul's thorn in the flesh was not given to him because he was such a sinner, but because God wanted him to understand something important about suffering. God said, "My grace is sufficient for you, for my power is make perfect in weakness" (2 Corinthians 12:9).
The simple truth is that God is not constrained to tell us why bad things happen to us. But he will let us know how to walk through them... with patience and hope. Yes, Job had some questions he wanted God to answer. But despite his questions, Job could still faithfully proclaim, "Though he slay me, yet will I hope in him" Job 13:15. ...Can the same be said of you?"

Tuesday, November 13, 2007

Before I was a Mom...

This is something from my MOPS meeting last evening and Dusty and I have laughed about how unbelievably true this is... parenting is the hardest job, yet definitely the most rewarding!! We both wanted to share this with you tonight as it made our hearts glad and full of thanks.

A Word of Encouragement:

Before I was a Mom-
I never tripped over toys or forgot words to a lullaby. I didn't worry whether or not my plants were poisonous. I never thought about immunizations.
Before I was a Mom-
I had never been puked on. Pooped on. Chewed on. I had complete control of my mind and my thoughts. I slept all night.
Before I was a Mom-
I never held down a screaming child so doctors could do tests. Or give shots. I never looked into teary eyes and cried. I never got gloriously happy over a simple grin. I never sat up late hours at night watching a baby sleep.
Before I was a Mom-
I never held a sleeping baby just because I didn't want to put him down. I never felt my heart break into a million pieces when I couldn't stop the hurt. I never knew that something so small could affect my life so much. I never knew that I could love someone so much. I never knew I would love being a Mom.
Before I was a Mom-
I didn't know the feeling of having my heart outside my body. I didn't know how special it could feel to feed a hungry baby. I didn't know that bond between a mother and her child. I didn't know that something so small could make me feel so important and happy.
Before I was a Mom-
I had never gotten up in the middle of the night every 10 minutes to make sure all was okay. I had never known the warmth, the joy, the love, the heartache, the wonderment or the satisfaction of being a Mom.
I didn't know I was capable of feeling so much, before I was a Mom.

Monday, November 12, 2007

Clarity of Heaven

A peace has started to invade my heart... something that I have been praying for and sure that it would come... just not knowing how long it would take. Sure the tears resurge as I begin talking with friends about my boys, as I talk with Dusty about our future, or as I listen to my two-year-old say "baby Maddox" and touch my tummy... but the peace is definitely coming.

I would like to say that I have been super consistent about my devotional time and my methods of prayer and study, but that wouldn't be the truth~ what I can say is that there is a certain level of comfort in the consistency of the inconsistency... my 50 Days of Heaven devotional for a few days, then a few devotionals here and there in my Women's Bible about hope, help, longing and loss, then come a few days of simple prayers and just loving my family. I am a person of plan, action, and follow-through, and yet, with my husband's constant help, this journey we are taking with the Lord has helped me to slow down a bit. Does my mind still race with questions that range from tomorrow's playgroup lunch to how we will make through this next year?? Definitely!... but again that peace that I am praying for, and so many of you are praying for us, is coming.

I have come to realize through various experiences in my life that I should leave any and all expectations at the door... things in life tend to progress much more smoothly and I am rarely disappointed when I have no set determination of what outcome to expect. Two examples: I chose to study abroad my entire senior year of high school in Chile, a million miles from anyone or anything familiar, yet simply praying and trusting the Lord that he would place me with the right family. (I truly believe in that instance that it was easier not to have expectations, maybe because I didn't even have the capacity to know how it could be...) Although it was a difficult year being away from my family and learning a new language, a new culture, and adapting to a new family, it was one of the most wonderful experiences of my life. I was so blessed to be placed with a family that valued me, my beliefs, my interests, and truly treated me like I was a part of the family. I know that year was not happenstance and it was so amazing that I went back in college for a semester to study at the university and live with my family again. Now in complete contrast to my first example, let's look at the doctors appointment last week in which I had definitive expectations for what we were going to see, hear and know. I went in fully expecting something that wasn't within a 100 miles of what I had imagined. You heard the frustration, the disappointment, the feelings of helplessness... And yet through my devotions, prayer time, talking to friends and family, and lots of music, I feel a greater sense of peace because I don't have set expectations for our time with Maddox. Instead, I know with complete certainty that regardless of the time we spend together on Earth, we will again be together when I leave this Earth or when our Savior returns, whichever comes first. Praise the Lord that I will know where my sweet baby can be found once he's gone... in the arms of Christ!

I loved reading Day 12 in the 50 Days in Heaven devotional, as it gave me reassurance and a better understanding of Heaven, and has ensured me that all we are doing for Maddox (and Deacon) is of utmost importance. The author talks about our memories on Earth and says this..."For those now in Heaven, the records of life on Earth still exist. Malachi 3:16 says there's a "scroll of remembrance" that even now is being written in Heaven concerning those living on Earth. Clearly, Heaven is a place for remembering, not forgetting. Memory is a basic element of personality. If we are truly ourselves in Heaven, there must be continuity of memory from Earth to Heaven. We will not be different people, but the same people marvelously relocated and transformed. Heaven will cleanse us, but it will not revise or extinguish our origins or history. Undoubtedly, we will remember God's works of grace in our lives that comforted, assured, sustained, and empowered us to live for him."

Later Mr. Alcorn talks about the brief interruption of relationships when someone goes to be with the Lord and states, "Questions about our loved ones remembering us or possibly praying for us are rooted in our desire to be assured that our relationship with them continues even though we can't see them. But of that we can be certain. Though we naturally grieve the death of loved ones, we know that if they are believers, we will one day be reunited. As the apostle Paul writes, "We want you to know what will happen to the believers who have died so you will not grieve like people who have no hope. For since we believe that Jesus died and was raised to life again, we also believe that when Jesus returns, God will bring back with him the believers who have died" (1 Thessalonians 4:13-14). Their parting is not the end of our relationship with them, only an interruption. We have not "lost" them, because we know where they are. They are experiencing the joy of Christ's presence in a place so wonderful that Christ called it paradise." Talk about peace!

Well, I want to be sure and thank you again for all of the prayers and support coming our way! We would ask that you also pray for our friends we have met online that are walking this same road or have recently lost their little ones. I would have never guessed how the Lord would work through the internet to bring families like ours together to be of support and prayer! Our personal prayer for this week is that we find out what we are facing with Maddox, specifically related to his heart, at our doctor's appointment on Thursday. This is with the wonderful physician who first diagnosed us and who we have much confidence in... Oh, and a piece of good news~ his office has been helping us find a group of neonatologists in the Med Center who would be willing to help us through the rest of the pregnancy and they called today to say that they found an office that is fantastic. We'll get more of that info on Thursday as well, so we'll keep you updated.

"Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid." John 14:27

Tuesday, November 6, 2007

A Clearly Answered Prayer

As I stated in the beginning, when I decided to do this blog, my main purpose was to keep everyone updated with information on Maddox's condition, as well as how we are doing. And honestly, as I sit here, I feel rather unsure of where to begin... I fear that my frustration will overwhelm my words and I won't be able to clearly communicate the continued hope we have in this situation, through the Lord. ... I guess I'll give it a try...

We have had two doctor's appointments in the last week, the first with our OB last Thursday, and the second yesterday at a perinatologist office near the Medical Center. Thursday went fine. Due to some bleeding that day and the previous couple, they worked me in for an ultrasound to ensure that there wasn't a placental tear. Thankfully they didn't find anything that would be cause for concern and said that Maddox was about 13-14 oz. That was good news as well, as he continues to be about 2 weeks behind on growth, but is not falling farther behind. I have to admit that I did leave the office that day feeling down (the day I just cried) and wondering what exactly it is that we are doing, and what specifically we are hoping for in all of this?! Unfortunately, I put a lot of stock in the appointment we were anticipating on Monday and probably discounted my own physician, who I have completely trusted and relied upon up until this point. Big mistake (as she did not recommend this specialist to us)! The only positive thing I really can even say about the appointment yesterday is that I kept praying beforehand that the Lord would show us clearly if this perinatologist was the one we should go with to manage our care from here forward~ He definitely gave us a resounding NO.

You are probably wondering what could have possibly made the appointment so terrible and really, as I think back to sitting in the office with her yesterday, it probably wasn't as bad as I'm remembering. But then again, everything that she said and insinuated didn't hit me until we left. Basically what it boiled down to was the way in which every question was approached, every answer was given, and the complete lack of empathy, concern, compassion, or hope. And please don't misunderstand... we are not expecting to bring home a perfectly healthy child... if God permits that I will be screaming from the rooftops, but we don't have unrealistic expectations for the future that Maddox faces. However, when someone repeatedly says to you, as you are asking questions about the possible plan for delivery or tests after birth, "if you make it that far"... it is completely frustrating and honestly a little infuriating. There were many other things that were disappointing about the appointment including her overall lack of thoroughness, her telling us that she wouldn't use any monitors during delivery because he probably wouldn't make it through, she wouldn't consider a C-section unless my life or well-being was in jeopardy, that if he did make it past delivery that we would definitely not be able to find anyone (pediatric neurosurgeon, pediatric heart surgeon) that would operate on him, and quite honestly she recommended that, if we make it that far, we just wrap him up and enjoy the little time we have with him before he passes. Noted. So then you can imagine how well that went over with Maddox's daddy...

Now if any of you have spent some time looking at websites, grief pages, tributes, etc. to babies that have died of Trisomy 18, you know that everything I just wrote up there that was "disappointing" to us is somewhat, well, standard. No one really gives any of these babies much of a chance at life and from what I can gather, they are written off immediately upon diagnosis. So then many of those things she said, in a uncaring manner of course, are "normal." Well, then are we expecting too much? Are we pushing the envelope? Are we looking for answers that aren't there? Are we being completely unrealistic about our expectations for the rest of this pregnancy and possible delivery??! Are we looking for a medical intervention that can't be provided? ... Plain and simple, I just don't think so. We basically feel like no one is even willing to give Maddox, what Dusty calls, a "fighting chance."

So this is where we are currently... we know that it is a one in a million, okay one in a billion, chance that Maddox will have a lot of time with us here on this earth... but all we are asking for is someone to tell us... "I will not rule out the possibility of performing a surgery (or whatever) on Maddox in the rare event that he is much better than expected upon delivery." We aren't asking for promises, nothing written in blood on a dotted line, or sealed with their medical licence that they will perform a miracle for our child... just simply an indication that if God allows a miracle and he can make it longer than anyone expected, we have someone willing to help us out! We just feel that in a Medical Center as large and as renowned as the one here in Houston, surely we can find someone to be our advocate. Obviously we don't know how far we will make it and if this fight on his behalf is even warranted... but if he makes it, even through delivery, won't it all have been worth it to have a plan in place. Surely it isn't too much to ask for someone to say "it's a possibility and I'll be there to help you through it!"

So as the frustration is very apparent, let me say that there were still some good things that came from yesterday, and many things to be thankful for. It was very clear, as we prayed, that this perinatologist is not one we will continue to see or seek counsel from in the future. We were told that Maddox's spina bifida isn't "that bad", and that he is up to one pound exactly... all good new for us! We know without a doubt that the Lord is continuing to work in this situation, even through the frustration, and that he will place us in the right hands for the rest of our care. We are thankful for the wonderful medical team that has helped us this far: Dr. McCloskey, Dr. Rowe, Beverly, and Sallie. We are thankful for the time that we have had and hopefully will still have with Maddox as he thrives in-utero. And we are also thankful for the support, phone calls, prayers, emails, comments and cards from so many people loving us and praying for us. The Lord's mighty hand has been upon us through the love and care from so many of you!... Thank you immensely!

Please continue to pray for us... specifically that the Lord will place the right medical staff around us that will encourage the possiblity of life for Maddox, and will honor and respect our wishes in the event that difficult decisions would need to be made upon his arrival.

Last note, I received this verse from a friend and it was of great encouragement to me... It reminds me that when I ask why we are going through all of this and if it is worth it, our Savior promises that it is. John 9: 1-3 "As he went along, he saw a man blind from birth. His disciples asked him, Rabbi who sinned, this man or his parents, that he was born blind? Neither this man nor his parents sinned, said Jesus, but this happened so that the work of GOD might be displayed in his life."

Thursday, November 1, 2007

Roller Coaster

Today has been a roller coaster of emotions. I have cried a lot today... it doesn't seem for any particular reason except that the minute I talked about Maddox this morning, it was over. I cried when I saw the my OB, I cried on my way home from the doctor, I cried as I picked up Deacon, I cried as I heard several songs on the radio... I cried and cried and cried. Honestly, sometimes I wonder how it will be possible to continue like this for the next 17 weeks. How can I make it through all of the questions and uncertainty? And then as quickly as I think that, I am reminded of a verse that I have prayed so many times I could recite it in my sleep. "Seek first the kingdom of God and His righteousness, and all of these things will be given to you as well. Therefore, do not worry about tomorrow, for tomorrow will take care of itself. Each day has enough trouble of its own." Matthew 6:33-34 And that is just it... Live for this moment, be present in today... whatever today holds.

It's as a wonderful speaker, Pam Thompson, said at our MOPS meeting a few months back about being a "Yes Mom" and being present at home- This is the DAY, this is the MOMENT, that the Lord has made; I WILL rejoice and be glad in it. (italicized addition- Psalm 118:24) And so after more than half the day of being angry, sad and just wanting to crawl back to bed, I remembered that each minute of my day is precious when I am focusing on what matters- today, the here and now. And then suddenly this evening, for each song that made me cry on the radio (yep, still crying tonight!), I was overwhelmed with joy in hearing my husband and son play together. For each thought of the future that briefly overtook my mind, I laughed out loud with thankfulness as Deacon continued to scream with delight "faster daddy... more wind!", as we drove home from dinner with all of the windows down in the car. And for each little movement I felt from Maddox inside me as if to say "don't forget about me, I'm part of the family too!", I wholeheartedly enjoyed the playtime and being silly with Dusty, Deacon and Maddox before bed. ...For each moment of pain, there is one of sheer glory that follows so quickly behind it. Both are beautiful, authentic and meaningful... it just depends which ones I choose to focus on. Is it easier sometimes to be sad, sometimes inconsolable, and let the tears fall? Without a doubt. But that can also keep me from seeing God's true grace in my life and keep me from staying focused "on the shore."

Let me briefly explain. I am doing a devotional called 50 Days of Heaven (Randy Alcorn)... I figured what better way to be prepared to let my son go than to have a more full understanding of where he will be going. Here is the excerpt from the book that really made me consider my daily focus:

In 1952, Florence Chadwick stepped into the waters of the Pacific Ocean off Catalina Island, California, determined to swim to the mainland. An experienced swimmer, she had already been the first woman to swim the English Channel both ways.

The weather that day was foggy and chilly; Florence could hardly see the boats accompanying her. Still, she swam steadily for fifteen hours. When she begged to be taken out of the water along the way, her mother, in a boat alongside, told her that she was close and that she could make it. Finally, physically and emotionally exhausted, Florence stopped swimming and was pulled out. It wasn't until she was aboard the boat that she discovered the shore was less than half a mile away. At a news conference the next day, she said, "All I could see was the fog... I think if I could have seen the shore, I would have made it."

As you face discouragement, difficulty or fatigue, or as you are surrounded by the fog of uncertain circumstances, are you thinking "If only I could see the shore, I could make it?"

So this is my prayer for us currently~ Lord, let me not be focused on or be distracted by the fog that surrounds us. Help me to constantly remain focused on you, our shore. Please guide us in these uncertain waters and let our eyes not fall from you. I know that you are there in the hurt, the pain, the struggles and the fear, so comfort us as you have promised to those that trust in your name.
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