Reflection...

I’d like to reflect on the last post. I re-read it and think “Gosh I sound soooo incredibly sad.” My mom read it and seemed almost shocked. After reading it she said “Amazing how you can wear a beautiful smile, appear fine, but be so emotionally torn apart inside.” As I read back on the last post those posts were of course written when the emotions hit the hardest. That is of course when I chose to write. When I felt “okay” I didn’t feel the need to write, I didn’t think I had much to write about. I’d like anyone on a journey of grief to know that it is a roller coaster. Maybe life in general is a roller coaster. The last post was written about the down hills and dips. Within the past 5 weeks there have also been peaks. 

The first time I laughed after Alexander’s death I almost felt guilty. I thought “how can I possibly be laughing and enjoying myself?” After all, my baby just died. I reflected on that immediate thought pattern and decided from that moment on that I would give myself the freedom to feel what I was feeling and to not feel guilty. I’ve learned just as the physical release of tears is important, the physical release of laughter and feeling ‘normal’ is also extremely important. When my girlfriends came to Ocean City, we laughed a lot. I mean a lot, a lot… to the point of “Oh my gosh we need to stop laughing because it’s too much of an ab workout after my c-section!” 

I feel joy, happiness; I still sing in the car and dance with my toddler. I am hopeful for the future.  This last journey has blended with another journey and Jason will soon be opening his practice. I am so incredibly proud and excited for my hard working husband. These past 8 months were the hardest of our lives but there were joyful and perfect moments intermixed with our grief. Alexander’s existence was such a wonderful and beautiful thing. I miss him but I am so thankful for him and the time we had with him. 

For anyone who might also be dealing with a trail, please know there is hope. Feel what you need to feel, let it change you, let it help you grow as a person. Do not let it hurt you or make you fearful. Do not let it destroy you. I pray you have hope for the future. 

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11

Thank you

To be honest I did not really want a donation page. I still don’t like it. If we had a healthy baby, a baby that we got to keep, we would not have a WeCare page. This fact makes it hard for me to even visit the page, to see and think about all the wonderful, great people who donated. This experience has been devastating, overwhelming and humbling. All of these emotions do not take from the immense burden that has been lifted. We are beyond grateful and thankful. It is an amazing gift. As painful as this experience is, these is comfort and joy knowing God will take care of us, that people near and far, close friends, loving family and strangers will take care of us. I am forever humbled and grateful. Thank you to all who donated and lifted this burden. Thank you for taking care of us.

Also…thank you for the prayers, messages, cards, dinners, gifts, flowers. For the support, texts and emails, phone calls. 

Thank you to my sister for being a perfect Aunt to Alexander and for the love and support throughout this journey. Thank you to our family for being there for Alexander’s birthday, for singing happy birthday, for holding him so gently and having so much love for him, for supporting and loving us so much. 

Thank you to my girlfriends for caring so much for me, for listening so intently to all of my memories. It meant so much to share Alexander’s photo album with you. Thank you also for your sweet gifts and for helping me laugh, for giving me a respite from grief and for reminding me that day by day I will feel more like myself.

Thank you to the kind, gentle nurses and doctors who took care of us in the hospital, the OB in Naples who shared her story of loss, who prayed over me before I left Florida. Thank you to the amazing psychologist at CHOP who dramatically changed how we experienced this journey, the child life specialist at CHOP who left us with such special memories. Thank you to the photographers that donated their time and energy to give us some of the most special gifts of all. 

Above all thank you God for putting these people into our lives.

One Month Post Birthday

Dear Alexander,

You are a blessing. I miss you. I long to hold you. I so badly wanted to keep you. I am so sorry this had to happen. I love you more than words can express. You get to experience Heaven now. You are in a good, beautiful, joyful place. You get to feel joy and happiness that we will not feel for many years. You are with your heavenly Father, and for that I am thankful. You get to stay there for eternity and you will know nothing of pain or sorrow. You will not learn of tears or hurt. Sweet baby boy, we know these things all too well. We will miss you more than words can express, but one day I will get to experience heavenly joy and I will hold you again. We will be together again. I am latching onto this fact. It is the only way to face tomorrow. It is the only way to face my future.

October 29^th

I noticed that Ana stopped playing and was staring for a while at Alexander’s picture, which was sitting on a table in the living room. She then wanted to get his bunny. I was nervous what she wanted to do with it, but I let her go with Nana upstairs to get it. She brought it down and I asked her what she wanted to do with it. I was thinking she’d want to play with it which would be too hard to bear. She said she wanted to give it to Alexander and she gently laid the little bunny right in front of his picture. 

October 30^th 

Today I woke up and cried through breakfast. Ana was playing in the living room, looked up and asked “what’s wrong Mama?” I told her that I was very sad that I miss Alexander. She asked “what do you need, Mama?” I couldn’t answer because the only answer that came to mind was “I need my baby back.” Jason helped and told Ana that I could use a hug and a kiss. She ran over to try to help. She then said to Jason “Mama is so happy now?” In her little world, a simple kiss makes everything better. If only it were just that easy. It might not have made everything better or make me “so happy”, but Jason told her that her hug and kiss had definitely helped. 

October 31^st

The girls are here…it feels good to talk about Alexander. It helps validate who he was and to share the memories we have of him. If they hear these memories, more people can know him and understand who he was and how he fit into our family. It’s also very difficult because I miss him so much. I should not just be sharing his one photo album; I should be passing him around for friends to hold him. Then I stop and remember “should” is not a word I can use. It was never in God’s plan for that to happen. I just miss him so much. It’s been mentally exhausting today for so many people to be around; hard to try to stay “present” for them. I want to zone out, stop listening, sit and stare at a blank wall. On the other hand, it’s also very good to listen to the girls. Good to focus on something other than my broken heart. I thought writing would make me feel better. I don’t know it if did this time. Crying made me feel better. The physical release tonight made it a little easier to breath. 

November 5^th

Last night I was angry…I cried and cried. I would get myself to stop; I’d lie down and sob again. I needed this. I’m not sure why but I haven’t sobbed like this really since the hospital. Reality also hit that this is not something that I’ll get over. I will miss Alexander forever. I’ll always have a child, teenager, young adult that is missing from our family; a son, brother, nephew, grandchild that we will miss forever. 

I have not let my mind wonder what about what it would be like if he lived. How do I even picture that? Do I picture a healthy average sized baby? Do I picture a baby boy with dwarfism? Or do I picture a baby with Thanaphoric Dysplasia; a baby with a tracheotomy, wires, ventilator, future wheel chair, and millions of limitations? Unable to crawl, life his head, eat, dress independently, and stuck in that body; a perfect mind – trapped. No, I don’t think of this. Honestly this is the first time that I have since before he was born. All I think of is his soft, chubby cheeks. Perfect beautiful lips and cute button nose. I think of how warm he was at first. I think of the perfect 5 sounds we got to hear. I think of the weight of him on my chest and in my arms. I miss him but I don’t often think of what could have been in our future because that will not happen. Also it’s obvious that it is too confusing to think of our future because there are many paths to think about. A lot of times I just think of missing and wishing he was here to hold, lying on my chest, cuddled next to me in bed. There are no thoughts of wires or limitations. I thought last night ‘I want him back’ but even in my darkest and most devastating state I cannot get myself to agree that he is better off with me. My core believes that Heaven is the best place anyone could be. Yes, I’m hurting. Sometimes the pain and weight of reality can be so much, too much, but I still believe Alexander is in the best place. We all belong (ultimately) with our heavenly Father.

November 8^th

…God has left me with so much. Yes, Alexander had to leave me which hurts and is so horrible but God has also left me with much. Not only has He left me with my other family members, He has left me with hope for the future. I miss Alexander terribly. Grief is unimaginably difficult. The waves of changes, the ups and downs; it is very hard to keep up with the different emotions: hopeful, peaceful, devastated, angry, back to hopeful. The ever changing ride of emotions…I wish I could get off.

November 11^th

…I still don’t understand why all of this had to happen. I don’t think I will ever understand while I’m on this earth. I now have learned that I’m not invincible, not safe from devastation, from tragedy.  Today this makes me nervous for the future. I’m scared of something happening to Jason or Ana. It’s hard to trust…(God I’m sorry that I say that sentence). I know I am supposed to trust You. I literally prayed since early high school (on a priests recommendation – thank you Shanahan ) for my future husband and my future children. I prayed over and over for my babies to be healthy and You said no. Now I pray for Jason and Ana to be safe and I have no idea what Your answer will be. 

A new prayer…”God help me to trust in You, help me give my life to You for Your glory. Give me spiritual wisdom to help me day to day.” 

“Trust in the Lord with all your heart, do not lean on your own understanding. In all ways acknowledge Him, and He shall direct your path.” –Proverbs 3:5-6

God help me do this. 

“Fear not, for I am with you. I am your God. I will strengthen you. I will help you. I will uphold you with my righteous right hand.” –Isaiah 41:10

“For God gave us a spirit not of fear but of power, love and self-control.” -2 Timothy 1:7

November 14^th

I long to have a baby in my arms. After a pregnancy, countless appointments, ultrasounds, and a birth, and my arms are empty. The last couple days I’ve brought it up to Jason. I have such confusing feelings. I long for Alexander, but since I know that can’t happen I’m starting to obsess about my future. Future children, the future baby that I will be able to bring home. I feel it is way too soon to even think of our next baby, but I am and I do. 

“Be joyful in hope, patient in affliction, and faithful in prayer.” –Romans 12:12

November 15^th

God I need you. Oh God help me. This hurts so much.

I’ve been wonderfully distracted; Ocean City, Ana, my mom, staying busy, obsessing over my next baby and my future, watching Lost, reading Alice Bliss, friends, a few beers with Jason. They are all such great distractions from my horrific reality. My son…my precious baby boy is gone and tonight I feel the heaviness like no other. God I need your help.

“In this world you will have trouble but take heart, I have overcome the world.” John 16:23

November 16^th

How busy the days get full of the beautiful distractions. I have decided to make sure during nap time and when Ana goes to bed to speed time reminiscing; to look over Alexander’s pictures, read what I’ve written, and sit still to remember. I am not ready. Not ready to be distracted away from what has happened. I need this time to grieve so I can fully (as much as possible) heal and recover my shattered heart. If I don’t take the time now it may resurface later and it may be longer than I’d like. 

<3  

I am uncertain about what my future holds.

My certainty lies in the love I have for my baby. 

My certainty lies in the love God has for me.

10 Days Away

When I think of updating the blog, my first thought is that I have nothing to say. That's obviously not true; maybe the real feeling is there is so much buzzing around in my brain that it is too much to shuffle through. It’s too exhausting to piece together cohesive thoughts that would have enough meaning for people to read.

We met with 8 different people at our appointment: the ultrasound tech, nurse practitioner, OB, anesthesiologist, genetic counselor, social worker, chaplain and psychiatrist. Just writing all those titles is exhausting. Imagine meeting with that many people to discuss the day that you will forever say goodbye to your child. Overwhelming and exhausting doesn't quite cover it.

Most of the questions, answers and information were medical until we met with the psychologist. We then went step-by-step of what to expect for October 20th. I got to visualize what it might be like physically, mentally and emotionally. Exhausting as it is, I think mentally preparing for this is really beneficial. We went through all the details and wrote a birth plan that each person on the team will read prior to Alexander's birth. This way, the crazy amount of people that will be a part of this day will know what to do, where to be, and what is expected. We even found out that people on the birthing team can FaceTime from the OR to the waiting room so that our immediate family can witness Alexander's first moments of life and his baptism. I was on the fence about this until I realized that if Alexander passes away before we even get to my recovery room my family, and especially Ana, would not have seen him alive. This thought absolutely breaks my heart. Before Alexander passes I so badly want Ana to hold her little brother. As terrible as it is, I need to mentally prepare that this might not happen.

We are 10 days away from saying hello and goodbye to our son. Heartbroken lacks what I'm feeling. When I visualize heartbreak I see a cartoon heart with one jagged crack running down the middle. My heart has been crushed and broken into millions of pieces. Scattered on the floor. Possibly and hopefully in the next weeks, months and years to come my heart will be glued and taped together but some pieces will be too small to find, too small to figure out where they fit into the puzzle. There will be missing pieces of my heart that will forever be with Alexander. I will not be completely whole again until I go to him in heaven.

With all the preparation for his birthday I know that the day itself will be painful. Unimaginably painful...but also beautiful. I want to meet our son. I want the chance to hold him and see his chubby cheeks and perfect lips. I want the chance to kiss his head and see his perfect baby feet. I want to see if he will be born with hair! I do not want to face the time when his heart stops beating. I do not want to say goodbye. I never in my wildest dreams thought this could happen. As I go toward that day I try to remember that even in my darkest times I have asked "God, where are you?"  I always hear a whisper "I am right here."

I love Alexander more than words can express and I believe there is purpose for his existence. I've thought maybe the only purpose is so that I can spend eternity with him in heaven. I talked to Dena about what we thought babies would be like in heaven. When I get there I like to imagine that Alexander could change ages so that I can have a chance to watch him grow up a little. I think maybe for the first 5,000 years of eternity I'll just hold him, rock and sing to him. I think once I get to heaven I'll have a really beautiful voice.

Maybe his purpose is something less selfish, maybe something bigger than I can imagine. Maybe through this story of love and loss, faith and growth someone out there will be moved. May I dare say inspired? Changed? Maybe after Alexander's story they will now see beauty in their pain and love during their loss. Maybe God will show them purpose through their heartbreak, peace during the storms and strength in their weakest moments.

Good Days...Bad Days

Good days, bad days is an understatement.

Somedays I feel light. I can walk further, stand taller. My mind is clear and my heart is full of love. “It’s okay” echos in my mind, which I know is a whisper from God. My future is full of possibilities. I am physically pain free. I see absolute beauty in our circumstances. I am so thankful for him and full of love for who he is and how he has been a part of our lives. This is a blessing. I am excited to meet and hold my son. I am thrilled to celebrate his birthday and I look forward to October 20th. I am full of love and light. I am full of joy, and as painful as it is that I know we will only have a short amount of time together, I am joyful that Alexander will be in heaven with his heavenly father. I am filled with joy that Alexander gets to experience heaven and God and will be forever surrounded by love and light that is unfathomable to us here on earth. I am also comforted that he will never know of pain, tears, hurt and sorrow.

Somedays the weight of reality is unbearable. The weight of the reality hits me hard. It lands causing tangible knots in my shoulders. Sometimes it is hard to breath. My jaw is sore from what I can only imagine is from grinding my teeth the night before. Smiling seems foreign. Not always but sometimes these days are paired with a headache at the base of my skull. My heart is broken, my mind is foggy. Sometimes I don’t even realize I am in this state until that night or 3 days later. I don’t think many people would know that I feel this way. I dread my c-section date since I know that means the clock will start ticking with the time we have with our son. After this day, the terrifying reality hits that he will no longer be with us, no longer safe inside.

Light and heavy feelings can last for minutes, hours or days. I am scared to face Alexander’s death. I am scared that the heaviest feelings are yet to come. That these feelings will not last for days but weeks, maybe months, maybe years.

Support Team

Yesterday feels surreal. I wanted to write yesterday to provide everyone with an update but didn't feel ready to write. I don't feel ready right now. Writing more details of why we had to meet and what we had to discuss makes everything more real.

So many thoughts and feelings are swirling inside of my head and my heart.

Again, CHOP was amazingly supportive, caring, responsive and thorough.  

I had my fluid checked and it actually has dropped a little which I am so grateful for. I am so glad I don't need a reduction. My fluid is still above average but no need for a reduction yet! Hooray for not needing a long needle stuck into my abdomen!!

We met with the neonatologist, case worker, and psychologist. This team is experienced in dealing with cases just like ours where the baby is unlikely to survive long past birth. The neonatologist talked to us for a while about how things will run medically when Alexander is born. He assured us that palliative care is the right option given Alexander’s measurements. This is very comforting because the decision between palliative and intensive care feels like one that would be unbelievably difficult to make. He also explained what the birth will look like and what we can do to make Alexander more comfortable after he is born.

We then talked to the psychologist. She empowered us to make the decisions that feel best to us. She was very warm and kind and said she was in charge of helping our heads and hearts. :) I really really liked her and was happy to hear she will be meeting with us every week when are at CHOP and that she'll be present in the OR for Alexander's birth. She asked us how we are doing and complimented us on our current outlook and attitude towards what we are going through. She said that it usually takes her weeks or months to get couple to where we are now (able to talk about it, thinking through details and making decisions on what is best for our family.) For some reason it was very comforting to know that she is happy with our progress of dealing with this situation. Before she became and psychologist and started working at CHOP she used to be a doula. I absolutely love that and I'm glad she's here to support us.

After meeting with this team, we met with the child life specialist. This is the person who works directly with siblings, makes sure everything runs smoothly and helps us figure out detail of how to make our time with Alexander as special and meaningful as possible. She coordinates any keepsakes and has done many things in the past for families. Things we can do include making a mold of Alexander’s hands/feet, taking hand/foot prints, taking pictures, etc.

I could not feel better about being at CHOP, we are being so well taken care of.

To My Husband

My wonderful, thoughtful, supportive, loving husband, my rock, my everything. The only one I truly open up to, the only one that holds me when I cry. Thank you to the man who has gotten me through this, the one that has been there every step of the way, the perfect earthy father to Alexander. The one who loves him like no other. The one who talks to him and feels his kicks and rolls every chance that he gets. The one who reminds me of a God's grace and goodness, the one who prays with me at night, thanking God for Alexander. The one who takes care of me in so many different ways. I am so thankful for my husband, for his support and his amazing love of our little family.

Birthdays

Yesterday our doctors gave us Alexander's birthday, October 20th. As painful it is to have a specific date, it feels good to know. It is heartbreaking to think we only have 4 more weeks with our son.

Alexander’s birthday is a week after mine and 2 weeks after my dad's. The doctors had no idea but his birthday is also sandwiched between both of my Grandfathers which is also very special to me.

After his birthday, if you feel inclined to send a card, I would rather a birthday card for Alexander than a sympathy card for me. In my heart I'd rather celebrate his life rather than the grief we will encounter. Please feel free to write directly to our little boy and send him your love. Through this journey knowing that he is loved by so many has meant so much to me.

Alone

September 17th

So many prayers, so much support and I feel alone.

So many tears fallen for me, for Alexander, and I feel alone.  

Surrounded by family, friends, by toddler smiles and kisses and I feel alone.

I have reached out and women have reached out to me who have dealt with this type of loss, who have been in my shoes and I still feel alone.

Jason even doesn't know Alexander the way I know him, he doesn't feel his kicks and know his wiggles. This experience for Jason is completely different, and I am alone.

The word of God say that He is with us and I still feel alone.

I am alone and it is not just a feeling but a fact. I am Alexander's Mom and the only one who is hurting like this....

....and it is hurting so much.

I am praying a new prayer. I want and need to feel God’s presence, to be surrounded by His love and reminded of it throughout the day. With His presence I know I will feel comfort. I know eventually I will not feel alone.

CHOP appointment

"Never had there

been such eyes,

such a nose,

such wonderful

silly wiggly toes"

 

CHOP has an amazing team; supportive, caring, sensitive and oh so thorough. Today we got more confirmation and clarity of what we are dealing with. One of my concerns was that Jason and I would have to make the impossible decision of intensive interventions vs palliative (comfort) care. I have always felt, and still feel, that this decision is not mine to make. Ultimately, this is God's decision whether or not Alexander survives. Today I learned that this decision is not mine and I am so thankful. Our OB went into great detail about why this is a fatal form of dwarfism. 

 

The palliative care team, Jason, and I will meet next week to go through some of the more difficult questions. Since there are a couple of concerns, we are now aiming to "make it" to a c-section delivery around 35-36 weeks. Again, I am so thankful that this decision is not mine to make. 

 

One concern is that every week my amniotic fluid is increasing. Since Alexander's throat/esophagus are small, he is not swallowing the average amount of amniotic fluid, meaning enough fluid isn't going through his digestive track nor is it going into his lungs to help them develop. This in turn doesn't keep the fluid in balance and it starts to increase at an abnormal rate. The high-average level of amniotic fluid is 25cm of fluid, and I am now 31 weeks and at 33.5cm.  With this amount of fluid, my skin feels very tight and I have a tearing sensation and am tender to the touch BUT I can still breath, sleep, and of course, eat. They will reduce my fluid by TWO to THREE liters if I can't function. Let me tell yah, I was 42+ weeks with Ana and I am more uncomfortable now than I ever was with her. Very different feeling going on with our little Alex. Anyways, they will monitor fluid at least once per week from this point on. The only risk of having too much fluid is that it could put me into labor or my water could break. Ha! Basically I'm a water balloon that could pop... lovely. 

 

Another very sad and very real concern is that if we wait too long (38-40 weeks), there is risk of a still birth. Since his chest cavity is so tiny, it could start effecting the function of his heart. Our goal now is to meet our little boy alive and have the typical 45-90 minutes with him that most TD cases have. This is very important to me.