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. 

 

 

See you soon PA

I left my OBs office feeling so overwhelmed by the love that people have un-expectantly shown me. She prayed over me before I left today. I was just blown away. What an amazing person to be put into my life. 

Last week in small group, we discussed what the bible says about the relationship between a husband and wife. The bible says “wives submit to your husbands and husbands love your wives.” I’ve never had a problem with this verse since the pastor who married us explained that within this verse it means that the husband should the leader of the family. (Our pastor also said that when BIG decisions need to be made, it’s part of the husbands’ responsibility to make those decisions). Now obviously in our case, and how I think marriages should be, there is love and communication involved with all big decisions, and the husband (Jason) should naturally make an informed and loving decision for his family. I thought of this verse today… the bible says submit – fine, done!

Today our OB expressed that she thinks Jason and I should highly consider staying in PA until delivery. On Sept 14^th I am flying up with Ana for my appointment at CHOP. I was planning to come back down to FL for another 3-4 weeks.  My OB explained that my amniotic fluid is already high; if my water breaks in FL and I was stable I’d be able to transfer to Miami or Tampa. We also agreed that we would not do an amnio reduction in FL either (which is something common for Mamas with TD babies). Another thing to consider is that a lot of Mom's with TD babies end up delivering before 36-37 weeks. She said if Alexander has any chance, he needs to be surrounded by the best team and that team is not in Naples. I called Jason as soon as I was in the parking lot of my OBs office. I had my doubts of staying in PA from 31 weeks on but Jason said that he agrees my OB. I should stay and he will meet me there as soon as possible. He is now planning to come only a week after I head up to PA. He thinks this is the safest idea and that since we both really feel good about CHOP, it’s where I should be. I am tossing my doubts and objections out the window. The bible says submit – fine, done. 

See you soon Pennsylvania!! My friends and family up there, contact me soon so we can hang out : ) : ) : )

Revelation

Jason and I have been going to a small group at our church for a couple months. The couple that leads the group invited us over to dinner tonight. It was so nice to get together and to get to know them better. The wife of the couple told me that she’s been fervently praying for me and the response that came quickly to mind was that “it’s working.” Lately I have had an almost odd sense of peace, a peace that doesn’t make much sense to me considering our circumstances. She agreed that in the deepest trails sometimes it feels like there is a protective bubble around us. There is no other way to explain that this strength and peace comes directly from God. There has never been more of a time in my life that God is so plainly here me with. I’m not going to lie; I grew up with what I think are the normal wonderings and doubts about God.  Since high school and college my faith has grown and in each chapter of my life my relationship with God has grown deeper. Through this specific journey, the depth of that relationship has changed completely. His existence to me is now fact. There is not even a tiny bit of doubt of who He is and how He loves us. Someone telling me that God isn’t real right now would be like telling me the grass is purple. Everyday this journey surprises me; sometimes in absolute wonderful ways.

Exhausted

Such a hard week. I thought when we got a “pretty certain” that it is TD diagnosis I could rest with that idea and just let it settle in. NO!! It’s been so emotionally, physically, mentally, and spiritually exhausting. I feel like I have been hit with a bag of bricks. I’m so exhausted in all areas of my life. This past week has been much different than the first couple weeks of knowing that TD was probably what we were dealing with. During those weeks tears just came and came. This week, not as many tears as I thought; just pain and hurt and mentally a very dark place. And let me tell you, I’m a pretty sunshiny person. Being in a dark place was kind of scary. But alas, after 5 days I started to feel more like myself and I am here to tell you that once again I made it through.

Since the last appointment so many new questions have entered my mind. Some of my questions are basic hospital and procedural questions, but some… let’s just say are extremely difficult. I’ll let your mind wonder until I’m ready to address them. 

I feel so good about going to CHOP. I talked to the nurse coordinator for a long time today to get all of my questions answered. She was so wonderful and told me I had excellent questions.

After my detailed phone conversation, Ana and I ate lunch and she went down for a nap. Look at this picture that I snapped…new favorite for sure. It’s fuzzy and dark but it’s me rocking and singing to my two babies. Ana asleep with her hand perfectly placed on my belly. It can’t get more special than this.

I had one very difficult question that the nurse coordinator had to find out for me and call me back. Ana and I were playing and she called back to give the answer. It wasn’t quite the answer I wanted, I got off the phone and tears just instantly started rolling down my checks. Ana looks at me very concerned and asked “How are you feeling?” I looked at her and said “I’m very sad.” She kissed my cheek three times in a row then started using her blankie to wipe away my tears. Her actions, concern and words brought a small smile to my face and she started giggling saying “Are you so happy now?” What an amazing two year old I have. What would I do without her?

Sharing the News

Let me start with giving you some background information on Jason’s current training. The trainers have extremely high expectations, as they should. The trainees basically do not have a life while they’re here, which is also totally understandable. To continue training here and advancing it all has to do with how many patients you schedule to come in for an initial visit and how many people you convert into patients. It’s pretty serious stuff, so Jason and I have always thought that he should stay here as long as possible before delivery.

Jason and I sat down with the 3 ML trainers to give them the update on our little Alexander. We explained our initial plan of delivering in Philadelphia and that Ana and I would travel up weeks before Jason so that he could train as long as possible. The trainers basically said Jason staying was absolutely not necessary. They said that Jason is doing great and that right now we need be together as a family. Wow! No offense to these trainers but the overwhelming amount of support was not what either of us was expecting. We talked to them a little more in depth about Alexander’s prognosis and what we have been going through. I commented it that we wouldn’t be able to do it without our faith. The co-founder of ML responded very simply “believing in God and having faith is very different than putting it into action.” Wow, what a wonderful complement.