Expectations

Well friends, it has been two weeks and two appointments since my last post. With summer quickly approaching and everything going on in our lives time is just flying by! Not to mention I haven’t had my laptop at home recently. It actually belongs to “work” and I have to occasionally bring it in and hook it up to the network. That being said, there are some networking conflicts and it is currently in the shop :) The only other computer is in Rocco’s room, and since I usually blog after he goes to sleep, that just wouldn’t work out!

So today I am 33 weeks and 3 days. I cannot believe we only have about 6 ½ weeks to go! This pregnancy has absolutely flown by! And has been so different (and not because of Lincoln’s diagnosis)! With Rocco I was reading all kinds of blogs and looking at BabyCenter online EVERY single day. I couldn’t tell you if I have even gone to that website more than three times this pregnancy. At this point, I feel like an old pro! Ha!

So this week’s appointment was just a basic prenatal check with no special treatment. I have short ultrasounds every week from this point on to gauge blood flow through the cord, heart rate, amniotic fluid volume, and if Lincoln is practicing his breathing. He has passed this test with flying colors for the last two weeks! Praise the Lord! Some of the techs will spend more time looking at other things and showing us pictures of our sweet boy as well. I want to say a special thank you to Gina for taking that time with us yesterday. We were able to see that Lincoln has at least one eye that is functioning! It is so strange to see the lens of the eye on an ultrasound machine. This was very reassuring as I had resigned myself to the fact that he may not have eyes at all. Praise God he has at least one! I feel confident that there are two there, but due to the placement of the baby and the placenta, it was impossible to get a good view of the other side because of shadows from the facial bones. However, seeing the eye was a definite thing of celebration! We were also able to see some of his “boy parts”, which we hadn’t ever seen before, AND she told us that he has hair. And it looks like quite a bit! We knew that Rocco had hair before birth because I was a little neurotic about finding out about it. I wanted him to have hair at birth! With Rocco we could see a small “halo” of hair, but Lincoln had a patch on the back of his head that looks more like a duck-tail (much more than Rocco had), so I have hope that maybe he has my hair! :)

Last week’s appointment was a little more informative, as we had a full growth checkup. The previous week Lincoln was measuring quite small for his gestational age, so they had wanted us to get another scan in two weeks. Lincoln actually gained almost an entire pound in two weeks’ time, which is what an average baby will grow in that time period (at this point typically half a pound a week). This was great to hear as the bigger and stronger he is at birth the better! He actually went up to the 17^th percentile and weighed in at 3 pounds and 11 ounces. If we stay on this track for the next six weeks, he will be a 6-7 pound baby! (I actually just looked back at Rocco’s 32 week gestation appointment, and he weighed 4 pounds 10 ounces at that time, just for comparison’s sake. I know that a 6-7 pound baby is actually average sized, but after Rocco that just seems so small!) Six or seven pounds would actually be a great weight for him though, as a lot of trisomy babies are born with much smaller birth weights. Overall, the last two appointments have shown promising scans, so we are still praying for miracles!

Now here is the hard part…my emotions have started getting the best of me lately. This past weekend my back started hurting and I started thinking I might be having labor pains. Although I think it was just exhaustion and a sore back from carrying around 30 extra pounds of baby AND 30 pounds of Rocco, it still gave me a small moment of panic. I am not ready. Lincoln doesn’t have the perfect hospital outfit. I have nothing prepared. I started to get anxious, and unfortunately, when it starts up it tends to hang around. I know that this is all in God’s control, but every so often that feeling of nerves creeps into my stomach and embeds itself there. I am so ready to meet my little man, but I am SO not ready for him to come. As long as he remains in my tummy then he is safe and sound. I am not afraid of the birthing process itself. I almost did not get an epidural with Rocco because I dilated so fast, so I am not afraid of the unknown of the pain….I am terrified of the outcome of what will happen after Lincoln is born. How long will I have with him? Will I even hear him cry? Will he be one of the 2.5 out of 100 that survive birth and live to see their first birthday? Tommy and I just want what is best for him. Always. Even if maybe that is not what we think is the best. We never want him to suffer. It is so hard to reconcile his activity and positive ultrasound results with the reality that he is sick. It is incomprehensible to me most days. Maybe that is a good thing, because although I have hope from my Father, I also get additional hope from my active little boy!

We had a special guest pastor at church this weekend because our pastor is on vacation. And our “special guest” was our youth leader, Jesse Holden, who does a phenomenal job. I know he never thinks that his sermons are up to par, but he touched me with his words this week. Thanks Jesse :) I realized that in the past few weeks I have been more in tune with preparing myself for the possibilities of a negative outcome than I have been for keeping up my hope for a miracle. As Lincoln’s mother and a believer, Jesse reminded me that it is my job to EXPECT a miracle. Believers are called to expect miracles and the grace of God, and I think I had pushed that to the back of my mind. I know that God will take care of Lincoln whatever happens, and that He can heal my baby if that is His plan, but I haven’t been Expecting. If Lincoln’s mommy isn’t even going to expect, then who will? So, I am hanging on to my faith in miracles and am EXPECTING one. May God receive all of the glory for His perfect creation!

On this same note, I want to take a minute to also say that God’s goodness to me, or Tommy, or any of us, is not measured by whether or not Lincoln is healed on this earth. Lincoln will be fully healed one day, whether God decides to reach down His hand and heal his little body on earth or if his healing will come when he passes through the glorious gates of Heaven. God is good all of the time, and even if my wish and prayer for Lincoln to be healed on earth is not granted, that doesn’t mean that God doesn’t love me, or that God is punishing me, or that He is a cruel God. He has a plan. I can’t see it, but He does. Lincoln has already touched more lives on this earth than I ever have in 29 years. His story is already an inspiration and a hope for others. And I will PRAISE GOD no matter what happens. Please don’t hinge your faith in our loving Heavenly Father on whether or not Lincoln lives a day, a week, a year, or 7 years. God has Lincoln’s best interests in mind. He has my best interests in mind. And He has a plan. And I am trusting it. I pray that your heart will be open to trust the same.

Please continue to pray for Lincoln, and for me, and for our family. I always ask for special prayers for Lincoln, but this week I am humbling myself to ask for your special prayers for me. Even in the trusting and the knowledge of God’s love, my mother’s heart is breaking. Tears are very near the surface these days. Please pray for His sustaining grace to help me through these next few weeks. And please pray for peace and calm in the midst of the storm. Please also continue to pray the same for Tommy, as I know his tender heart needs special care, too.  

Thank you for your faithfulness to our family. We love you all.

EXPECTING MIRACLES,

Lindsey

P.S. The link below is to a song that has really spoken to me in the past few weeks. It is Laura Story’s “Blessings”, and it is so touching and beautiful. Listen to it and take in the lyrics…

A Blessing to this Mother

Not sure where to start today. But how about a great big "Happy Mother's Day!" I'll have more to say about that later, but let me go ahead and give you what you really want...the update on Lincoln's 30 week doctor's appointment. Yes, it has been a whole week ago and I am just now getting to sit down and do this, so I apologize for the tardiness. Sometimes, life just seems to get in the way :)

Lincoln's checkup went relatively well. I will go ahead and tell you that it has been my favorite visit yet. For the first time this pregnancy, we were able to get a 3D/4D glance into my womb and see Lincoln's sweet baby face. This was such an incredible moment. I don't remember getting so emotional seeing Rocco's ultrasound, but this time I was a mess. Lincoln is SO beautiful! He looks so happy and peaceful, and he is absolutely PERFECT to me. I couldn't help the tears that began to flow as I looked on such a beautiful blessing. It was such a touching moment for me, and I just couldn't help but keep telling the ultrasound tech, and the nurse, and the doctor, and anyone else who would listen (!) just how perfect and beautiful he is.  Also, part of my early pregnancy dream was confirmed. Lincoln looks JUST LIKE Rocco (and in turn, Tommy!) did on his 3D ultrasound. Like father, like two sons! I am still holding out for a head full of dark hair :)  Lincoln also had his little hand up on his head and refused to move it. This is a definite Rocco trait, as he constantly has his hands in his hair, and especially when he is sleepy. It is amazing to see the similarities between my two boys even at this stage. What a joyful early Mother's Day gift!

As for the rest of the ultrasound, the findings were relatively the same as they have been. The cerebellum still measures 2.5 to 3 weeks behind (still, 2.5 is a little better than previously!). As Lincoln grows, they are able to tell that there is a definite enlargement of one side of the heart. A stenosis (blockage) is still expected to be present somewhere in the heart, but is way too small to be visible on ultrasound. I think that this heart issue has become the most pressing matter overall. All of Lincoln's other organs appear to be developing normally. His weight/size has also become a little stunted in the last month. He only gained exactly one pound in a month, which is less than most other babies would. He weighed in at a whopping 2 lbs. 13 oz. and was in the 10th percentile. He is now labeled as "small for gestational age", but not yet as "growth restricted". The flow of blood from his cord is still excellent, so this is not a condition of him not receiving the proper nutrition, but rather is a symptom of his diagnosis. I am suspicious (and I believe the doctors are as well) that the lack of growth might have something to do with the heart issue. We go back a week from tomorrow for additional monitoring, so I am hoping and praying that he will pick up the speed and pack on the pounds :)  I remember with Rocco I was terrified of him being too big as he was consistently in the 90th percentile, so it is a little strange to be at the opposite end of the spectrum. One question that I thought to ask about was Linc's eyes. I have read several blogs of trisomy mothers that have noted that their children had no eyes or had severe eye deformities. Linc's face looked "normal" to me, but the ultrasound tech noted that she couldn't see everything that she needed to (possibly from all of the shadows on the ultrasound), but that his little eyes don't look exactly perfect. I only mention this as an added prayer for his little body, as in the overall scheme of things it matters not to me whether his eyes will open and close, but only if he draws breath and survives. After next week's appointment (which is an astounding and unbelievable 32 weeks gestation), we will start our weekly treks to the doctor. We have ultrasounds at every appointment from here on out. Last week, a biophysical profile (bpp) was done to measure vitals such as blood flow in the cord, amount of amniotic fluid, visibility of baby's breathing practices, etc. Lincoln's score was an 8/8, so we were very pleased with that. We could clearly see his breathing practice and were overjoyed!

This last appointment was very emotional for me. It is so hard to go into the doctor's office and see women who are there because of the poor choices that they make regarding their own health and the health of their babies, and not because of circumstances that are beyond their control. I continue to see pregnant women walk in holding nothing in their hands but a pack of cigarettes, or see others who are clearly flying pretty high on something. It breaks my heart and makes me want to scream!  I cannot even imagine what the health care professionals of this office have to see on a daily basis and the burden that they carry as a result. Let me take this moment to give a huge shout out to the Fort Sanders Perinatal Center, and Drs. Roussis and Stephens. I have been beyond blessed by the care and love shown to me by the staff, and I could never thank them enough for their compassion and empathy. As we met with the nurse I shared with her some of my feelings and she was quick to agree. She mentioned how another family had recently been in and had suffered a great loss, and how she cannot comprehend why some families that seem to "have it all together, clearly want their child and do everything in their power to help them, and do all of the right things" seem to be the ones that always suffer the great losses (not that any family ever should, but it is hard to understand how people can abuse children and still have no pregnancy complications). I, however, felt like I knew some of the answer. First of all, we do not know God's plans, which is why we cannot fathom why things like this happen. But second, because these special babies need the best possible chances to survive and thrive, they deserve all of the love and care (and probably more) that a fully healthy child does. And I think God picks special families for that, although I can't imagine why we were chosen as special. I read a statistic this week on CNN that 92% of children diagnosed as Down's Syndrome are aborted. Maybe we are considered special because of our belief in life from conception, and our choice to let God be in control of Lincoln's life in all capacities. I just don't know the answers or many of the questions, except that God is always right. And His name is worthy to be praised. God is good...all the time.

This leads me to my Mother's Day "sermon" that I felt led to share today at church. Let me say that before Lincoln, I never would have felt comfortable sharing my feelings and my walk of faith with others on such a public platform. I never felt like I had a testimony that was strong enough, or powerful enough, or that wasn't plain old ordinary. I know that is not true, but that was the devil trying to fill my head with insecurities and keep me from fulfilling God's true purposes for me. I was never afraid to stand up and make an announcement, or to ask for help with the Mission Committee (I am not shy!), but I just wasn't personal. My journey with Lincoln has drastically changed that! One of the things that God has revealed to me throughout this pregnancy is that there are others who need to hear my story and can benefit from it. And my only job is to just share. How His grace, and His mercy, and His love are sufficient for me. Seems easy enough, but something I wouldn't have been comfortable doing before. God definitely works in mysterious ways :) One of Lincoln's many blessings to me has been to see how his story is already changing lives and hearts. I am so blessed when people tell me little things about something I have shared that have made a difference to them. And it is not me that makes the difference, but He that is in me, and the story of faith that He is weaving through Lincoln. So today I shared a few words about mothers:

"Mother's Day has been bittersweet for me this year. I have two sons. One who is playing in the nursery, and one who is due to be born on July 16th. And my sweet son Lincoln has been diagnosed by the medical community as having a condition that is "incompatible with life",  or trisomy 13. Therefore, I am not sure if I will have another Mother's Day with him. I am not sure if he will ever run up to me and tell me that he loves me and say "Happy Mother's Day, Mom", so today is precious to me. Thankfully, our hope is not in medical professionals, but our hope is in Jesus Christ. We pray for God's will for Lincoln, but we are also human and that is hard, because we want our child to live. If you have a child, please hug them a little tighter today. Tell them how much you love them and how special they are. And please don't take for granted your time together. We are not guaranteed another day, and I might not even be around to tell my own mother Happy Mother's Day next year, so make sure that you make the most of each moment. Even when your son is scratching your face, or climbing on something that he shouldn't be on, take a deep breath and thank God for your children. And love them."

"For those of you that have lost your mothers, I would ask you to share my special perspective today. My husband and I have lost four children who never saw the light of this world, but who see clearly the glory of Heaven. I like to think that all of the mother's that have gone on before us are there to take care of the sweet babies that have gone too soon. I know that there are mother's up there rocking my babies for me right now, until the day when I will be called home and can hold them in my own arms. I am thankful for those mothers, and I am thankful that the ones that they left behind here on this earth are willing to share the blessing of their mothers with my own little ones."

"Finally, for those of you who are suffering from infertility, or for those who are single and think there is no hope for you to have children, I have been there. Before Rocco, we suffered from infertility for several years. I know that there are no words to say on this day to offer you comfort or that will make it better. But I pray with you."

"Please remember our family, and remember baby Lincoln. He could make his entrance into this world tomorrow or in another 9 weeks...we just don't know. But we pray that there will be breath in his little lungs, and no matter how long he is destined to be with us, we will love and cherish him unconditionally."

After typing all of this it almost sounds to me like I am trying to "toot my own horn", so to speak. Please know that is not my intention, but only to share my journey and what God continues to reveal to me through this pregnancy. It is my heart's only desire that someone might be helped from the words on these pages (not my words, but words that He has written on my heart), and that someone might come to know Him throughout this mess that is my writing. I thank you all for letting me open my heart and share a piece of myself with you. May God continue to bless each of you, and for all of the moms....a Happy Mother's Day :)