Perfection... Why not us?

Update 3-26-18

Recently Ryan and I were asked to attend our regional March of Dimes 'Walk for America' kickoff meeting as guests to give our story about Mae and our journey thus far. We jumped at the opportunity to bring awareness toward her medical issues and to help create an environment of tolerance toward others who are perceived as 'different.' Even though Mae was not born premature, the March of Dimes also supports research for birth defects, which Mae has. Ryan led the discussion about Mae and did so marvelously. (He should be/could be a public speaker!) In a mere 15 minutes, he briefly explained our prenatal diagnosis, 'healthy' delivery, limited NICU stay, extended U of M hospital admission, and touched upon Agenesis of the Corpus Callosum, Turner's Syndrome, and TPN related to malabsorption.

Although all of these medical issues are hugely important aspects of our journey thus far and all have created the makeup of Mae, Ryan spent the most time shedding light on how our attitudes have changed drastically throughout everything we have encountered so far. In the beginning, nearly one year ago (on Good Friday) we found out about Mae's congenital brain defect. And, in an immensely confusing, painfully emotional filled single second, our entire world stopped spinning as our perfect little baby suddenly seemed not so perfect. As expected, and as you have learned, we felt a range of emotions from sadness, grief, anxiousness, anger, and uncertainty (to say the least)... Yet, despite all of these feelings, we most strongly questioned, 'Why us?!' Why did this happen to us? Why are we the ones that have to deal with this? Why did we have this diagnosis given to us?

Through prayer, self reflection, family support, caring friends, and the strength of our marriage, we 'quickly' shifted our thinking to, 'Why NOT us?!' Why shouldn't this happen to us? Why shouldn't we have to deal with this? Why shouldn't we have this diagnosis? As we all know, the world is not a perfect place, and despite all of her medical issues, Mae has become a perfect gift. Our precious little miracle baby has made (and will continue to make) us, our boys, our family, and our friends, stronger and more tolerant and accepting humans. She will make others more empathetic towards 'differences' and what is perceived to be 'normal.' She will have an unknown and far reaching impact on the many people that have crossed our paths from student nurses and doctors at U of M, to preschool students at church praying for 'baby Mae,' to parents that hug their children tighter because they are thankful that they are healthy, to strangers that see Mae's line and wonder what is wrong, to the countless people reading this blog that are sharing our journey with us.

In this very imperfect world, we know that one thing can be certain, the gift that we have been given from God, who seemed so imperfect at first, is in fact the complete opposite. Mae has been a blessing beyond anything we could have imagined and in her short seven months since birth, she has opened our eyes to a world that we really did not know existed, because, until her we only thought we knew what perfect meant. But, in reality, you must understand imperfection to truly know perfection.

Medically, Mae has remained stable over the last couple of weeks. She is becoming increasingly interested and aware of her surroundings, she is enthralled with her crazy and energetic brothers, she reaches out to be held, she holds her own bottle and spoon, and feels most proud when she is standing with us. Her hair is becoming longer and poofier and (although I didn't think this was possible) her smile is becoming more infectious and bright. Although we try to capture her positive energy in photos, the pictures just cannot do her true justice. She is perfect in every way.

Ephesians 4:2 Always be humble and gentle. Be patient with each other, making allowance for each other's faults because of your love.

Soaking it up...

Mae Update: 3-12-18 It is such a peculiar feeling to be in a good place but to feel worried that something is going to go wrong. Ryan and I are often asked how sweet Mae is doing and although things have been great for her lately, and we could not be more happy/excited, we are still nervous because it has been a long road to get to 'good' news. Recently, we were asked by one of our neighbors about Mae and, knowing everything that has happened, we gave him our positive news and he looked at us, smiled, took a deep breath, inhaled, and gave us some great advice, 'just soak it up!' Although simple, it is so true. Mae is doing so good, and has been doing so good, that we are really just trying to 'soak it up' while being cautiously guarded that things may not always go this smooth. We are so thankful for everyone who: asks how we are doing, says specific and intentional prayers, sends cards, makes meals, takes time out of their day to better ours, and who show genuine caring for our family. We could not be more fortunate to have such amazing support.

At church yesterday we were greeted after the service by people who were sitting behind us and know 'our story.' They said they could barely concentrate on what Pastor was saying because all they were focused on was how amazingly attentive Mae is to her brothers, Ryan, and I. How her smile is so infectious that it radiates throughout her entire body. How her bright blue eyes can literally light up a room and how her squeals and jabbering (during the sermon, nonetheless) are the best sounds that you could possibly imagine. There is so much good in this little girl that it is so easy to forget there is anything wrong. She is truly a precious miracle and a gift from God.

Mae has been making great strides in development the last couple of weeks. She is starting to sit up independently, albeit for 2-3 seconds, but we're making progress! She is eating meats regularly and doing quite well with her spoon and feeding, we have let her practice self-feeding and seems to enjoy trying. She is reaching farther for toys and is starting to put her arms out to be held by familiar faces. We are still patiently waiting to hear her first giggle and laugh and know that it will happen when it is meant to be. Most likely toward Will or Luke who adore her every movement and fall more in love with her each day.

On a medical note, Mae's appointment at U of M last week went very well. The CHIRP team is satisfied with her weight gain and her blood tests appear to be stable. Thank God! The best news is that her TPN cycle will be reduced calorically by 10% and also there will be a reduction in time from 12 hours to 10 hours! This is AMAZING as it will provide her body more time to recover and work without the corrosiveness of the TPN. (Again, we are thankful for the TPN, but, we will be SO thankful when we, hopefully, do not have to rely on it.) Starting this Thursday, when her delivery arrives, she will be hooked up from 8:00PM to 6:00AM. We are praying that she will be able to maintain and gain weight with the upcoming changes. She will continue her normal feeding schedule with her specialized formula and homemade meats. Prayers specifically for continued growth and development are very much appreciated and needed.

"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God." Philippians 4:6

Blessed and Fortunate

March 1- Mae is continuing to make gains with relation to her eating and also her development. We have found that she does not prefer store bought baby food meat (our dog Idol likes it though!) And as a result, Ryan has been preparing and pureeing her meats daily. She has been introduced to ground venison, ground beef, and ground turkey. Her favorite, so far, is venison and she devours it! Ryan is pretty happy about this- he’s already thinking ahead and looking at booking an extended hunting trip this fall to make sure he gets a deer for his little girl! ;) With regard to her development, Mae is starting to sit up, reach farther for toys, grab at faces, make more purposeful noises (indicating a desire to start talking/communicating with us), and standing with support. She is simply remarkable!

Mae was evaluated by our local school district today (speech therapist, occupational therapist, and physical therapist) and it appears that things are progressing as expected and at an acceptable rate. With that being said, there is quite a range of acceptability at her age of only six months- meaning, she is slightly delayed in some areas but is certainly excelling in others. We will follow up with the school district in three-six months but will continue to receive services from Early On to keep her growth and development monitored.  

Reading on the internet and watching the news the past couple of weeks has really put life into perspective with how great our family has it and how lucky we are. Don’t get me wrong, our daily routine certainly looks much different than many families and we definitely have challenges with Mae, but, we are truly so fortunate. We recently read an article about a little girl who is allergic to water, including her own tears! Could you imagine a baby allergic to her own precious tears? Or the parent who has to take their child to chemotherapy for cancer treatments, or the child who cannot eat anything while on TPN and cries because they still feel hunger, and so many more… Things for us could be so much worse. We know that God is good and there is a Greater purpose for this journey that we are on.

We know that we will have challenges and that things may become more difficult for us but right now we are ‘soaking up’ the good and thanking God for the miracle that Mae is. We’re blessed to be her parents and we’re blessed to have two healthy little boys who adore her more and more each day.

Psalms 28:7 The Lord is my strength and my shield; My heart trusts in Him, and I am helped; Therefore my heart exults, And with my song I shall thank Him.