Week 9 - Heading North

Up, down, up, down.... I don't know how much more my heart can take.
I talked to the CHOP nurse coordinator hoping to hear some good news, after all Alexander's chest grew a lot! However, the talk wasn't as hopeful as I thought it might be. I asked if she has the list of differentials that we got from our specialist and she did. I asked if, after looking at the ultrasounds, they agree that we are dealing with one of those differentials. She said yes. I told her specifically that we were thinking that we might be dealing with TD and asked if they thought so too. She said yes, but obviously they can't determine that until they do further testing. I told her how confused we were since his chest has grown and she didn't really respond. She was wonderful and had a kind, calm, sincere voice. I could probably cry talking to her over the phone about what I ate for lunch.

I now have an appointment on September 15th at Children's Hospital of Philadelphia. In one day I will have a fetal echo, fetal ultrasound, meet with a maternal fetal medicine specialist, genetic councilor and medical doctor. Unfortunately, at this time we don't think Jason will join me on this trip. He'll need a good amount of time off after delivery, so it doesn't make sense for us to pay for an extra flight and for him to take the time off. This is obviously not the ideal situation, but my mom will be by my side for the day. :)

At this point, I am so confused at where we should deliver. My mom said we don't need to make the decision now and I completely agree; but let's be serious, I'm over 6 months pregnant! We have to at least talk about the options. I can see a lot of pros with being at CHOP no matter the results of our future tests and measurements.

Logistically, if Alexander has TD, I'm not sure if it makes sense to travel for delivery. CHOP and my OB both said they wouldn't want me flying past 35 weeks, meaning I'd be away from Jason for 4-5 weeks before delivery. Augh! Not sure if I want to do that, even if it means being at CHOP. On the other hand if we have to deal with tragedy, I want to know that the doctors, nurses and staff will be there and that they will know how to support us. CHOP has a grief councilor and they are obviously well equipped to handle situations like this. With that being said, if Alexander has any chance of survival, without a doubt we will be at CHOP.

Week 8 - Change in Plans

I had an appointment with my OB. I told her what a cosmic joke it is that there are no skeletal dysplasia specialists in the entire state of Florida, but that I grew up, and am moving back 45 minutes from, CHOP (the number 1 neonatal hospital in the nation). Without hesitation, she said “Go there, deliver there!” Our other options at this point would be to drive over 2 hours to either Tampa or Miami. The only way our OB would still deliver is if Alexander did not have a chance of survival. Philadelphia now sounds like the obvious choice. The latest my OB wants me to fly is 35 weeks, so I could fly up with Ana in October. Jason could meet us there prior to the C-section. If Alexander needed the NICU, I could stay with my parents and drive to Philadelphia each day. As soon as we are ready we can all fly back down to Florida to finish Jason’s training.

Yesterday I had my records and ultrasound pictures sent to CHOP. Once the nurse coordinator and MD review my records, they’ll call me to discuss their opinions and to probably set up at appointment. Heading in this direction feels right. At this point, I feel really good about this option.

Week 7 - The News

We dreaded this appointment. We both didn’t want to go. Silent tears ran down my checks during the ultrasound, so sure that his chest would not measure big enough. However, Alexander surprised us - his chest grew and it grew a lot! Is it too good to be true?

[Enter confused, doubtful, shocked]

He is now 1.5 pounds and his chest circumference went from the 5^th percentile to the 25^th percentile. This news was unexpected and for some reason we are now filled with more uncertainties, fears and worries. I also now feel guilt for not just praising God for this miracle. We are obviously thrilled at this news but filled with different questions. Could his chest stop growing? Will he need the NICU? Where do we deliver? If his chest is growing why do I already have above average amniotic fluid? His limbs are still more than 10 weeks behind, will they be functional? His legs and arms are bowed; will he eventually need a wheelchair?

“Lord only knows” is a very literal saying. Our doctors are not able to give us any more information. Questions and possible limitations aside, I am holding onto hope, holding onto the love I have for our little boy. Do I dare picture us at home, rocking him to sleep? Do I dare picture him and Ana playing together years from now?

Is having too much hope dangerous or is it what gets us through the day?

Week 4 – To my sweet Alexander

My sweet, little Alexander, I love you so much. I am so sorry that this is happening to you and I so wish and long to be able to change this. I want the chance to sing to you and rock you and watch you grow up. I want to watch you roll on the living room floor with Jason and to hear your toddler giggles. I want Ana to sing you the ABCs and to kiss you and hold your hand. I’m so sorry that it may not happen. It feels incredibly unfair.

…I miss him already. I can’t believe I only (might) have 3 more months with our little man.

Week 4 – My Long OB Visit

I had an appointment with our OB today. We talked for a long time, so long that I felt horrible when I heard the next Mom waiting with a toddler and realized that she must have been the same Mom that came in before me.

I asked our OB if she’s ever dealt with anything like this. She said “no, she’s dealt with rare but not this uniquely rare.” HA! Dear Alexander, did you hear that? WE are a uniquely rare couple, the two of us. Ha, you are kicking as I type. You kick so much!! You are so big now (only 24 weeks) that I can see my stomach move up and down with each kick. Anyways – a couple of take aways from my appointment…

She said if Alexander’s chest drops to the 1^st-2^nd  percentile she could still deliver him since we would not be doing intensive care. If it is up in the 10th percentile, she would recommend we go to St. Petersburg Hospital in Tampa, which is the closest children’s hospital at 2.5 hours away.

She is honestly the sweetest OB, both caring and responsive, and she can relate because she has actually experienced a similar loss. She carried a son full term and he lived for 10 days. She regretted not bonding with him more while he was here on earth; a small reminder to appreciate all the kicks, jabs and rolls. To “spend time with him” sounds silly since he is with me 24x7, but I’m really going to focus on him throughout the day and send my love to him. She told me to show him the world as much as I can since I might not have much time with him when he is born. I haven’t been able to say that out loud. That’s just the saddest thing I’ve ever heard. At first I thought that we wouldn’t have the chance to travel but I can “show” him the beach, library and playground. Those are his big sisters favorite places anyways. I also remembered that he has been to Hawaii and now lives in beautiful Florida. He is so well traveled.

She also let me know that she is praying for us, and that we have really been on her heart. It’s hard to believe it’s only been three weeks since we found out this news! WOW how my life has changed. [Seriously he is kicking my ovaries right now]…

I told our OB that I thought our specialist might be holding back differentials from us and that she didn’t give us the list until I basically asked for it. Our OB said that as a Doctor it’s a fine line to inform the patient without alarming them too much. She said that all people process and accept information differently.

My OB’s nurse said that I can always make an appointment to come in to talk. Why do I feel like she is now my psychologist and not my OB? : ) 

My OB checked Alexander’s heart and was excited to tell me that all is well. She also talked directly to him and said hi to him and a couple of really cute things - I absolutely loved it.

Tonight is a sad night; just loving my little boy that might not be here long enough. 

Week 3 – To Amnio or Not to Amnio?

We had our 2nd appointment with our specialist and we also met a genetic councilor. We completed a fetal echo which looked at all areas of Alexander’s heart and found that there are no heart defects and it was working properly. We also were given a list of possible diagnoses. After hearing these diagnoses, we thought maybe an amniocentesis was appropriate at this time. An amnio could possible give a definitive answer as to what Alexander had. They gave us hope; then we went home. I looked up the 5-6 differentials and found that frankly, they all suck. There was not one that had a great outcome, and no matter what differential, most babies die shortly after birth. It took us a couple days but we decided there is no point in an amnio because I didn’t want to risk a miscarriage. In the end, if Alexander’s chest grew he had a chance of survival; if it didn’t, he did not.

For the most part, my high anxiety was gone. I’m wondering if it was because I was assuming that they would diagnose TD. Maybe it was just the realization that this could very well be fatal. As much as it hurts, I think I am closer to accepting that Alexander might only be with us here on earth for a couple of hours.

In the past 3 weeks I have felt more emotions on a higher level than I ever thought possible. I have felt confusion, doubts, fears, anger, overwhelming despair and high levels of anxiety. I have felt hope, acceptance and loss, steadfast love for our baby boy and strong love from our God. God has been with us from the very start and will always remind me of His word and His promise.

Every day I feel what I need to feel. I give myself time to release the emotions; to let myself cry, to let it hurt, and then I move on. 

Week 2 - Don’t Google Alone

Jason and I agreed to ‘not google alone.’ We didn’t look into anything until the next day when we typed in some of our baby’s ultrasound findings. The results we found were heart breaking. The findings seemed to be typical of a type of dwarfism called Thanatophoric Dysplasia (TD) which has a prevalence of 1 in 90,000 births. Narrow chest, small ribs, underdeveloped lungs, normal trunk length, wide-spaced eyes, bell shaped torso and bowed long bones. Babies born with TD1 usually die shortly after birth due to respiratory insufficiency.

Almost every symptom of our ultrasound report was neatly categorized under the most heart breaking form of dwarfism.

My hope was crushed into a million pieces. This was the worst week (so far) of my life.

Week 2 - Concerns & Hope

We had to wait one week until we had an appointment with the specialist. This is when we would hear that our baby would be short statured but healthy. This was our hope.

Our OB recommended that we might want to find out the gender of our baby. She explained that it might help with conversations that we will need to have in the future and that it may make it easier to connect with our baby. I wondered what type of conversations she was insinuating.

We took her advice and now looked forward to this ultrasound; not to just find out what was ‘wrong’ with our baby, but also to find out if there would be bows or trucks in our future. Within the first 20 seconds, the ultrasound technician informed us we were having a boy!!! I couldn’t believe it. I was so sure that we were having another girl. I thought “finally a boy for our family which is full of girl cousins, nieces and granddaughters.” Finally someone for my Dad to fish with! The tech then informed us that his legs and arms were indeed short. She also found that the femurs and humerus bones were bowed. I racked my brain to try to remember if that was typical of achondroplasia. I worried slightly about limitations but assumed this was typical of dwarfism. She noted that the basic heart functions looked good but the heart was either measuring big or the chest cavity was small. She noted that his little eyes seemed wider apart than “what she’d like to see.” This meant nothing to me; surely the eyes being further apart did not change their function. She said that the brain and spinal cord looked great which was a big relief since babies with dwarfism could be born with hydrocephalous (fluid surrounding the brain).  She also pointed out that his torso was bell-shaped which she said was typical of a child with dwarfism. Truly, nothing she said was alarming. We were thrilled that we had a boy! She left the room and gave us amazing ultrasound pictures that we looked at while we waited for the doctor. I could not help but stare at the sonogram images and think our son is so cute.

When the doctor came in she wanted a couple more views on the ultrasound. Again, I lay back so I could get more aqua blue gel squirted on my belly. She looked for 30 seconds, shut the machine off once again, and took us to her consultation room. This is what we learned. Our original plan for a vaginal birth after caesarian (VBAC) with our OB and hospital would not be a possibility any longer. Surprisingly, the VBAC I so badly wanted now meant very little to me.

The specialist then explained that our sweet baby boy’s chest was measuring very small. So small, in fact, that she was concerned about lung development. If his tiny chest cavity did not start growing wider, there would literally not be enough room for his lungs to grow. This meant that our baby could be born with insufficient lung tissue to survive out of the womb.  She said we would have to come back in 1-2 weeks to measure his chest cavity again. She never mentioned a potential diagnosis and did not rule any out. She left us with the idea that time will tell. We left her office with hope that at the next ultrasound his chest will measure wider.

We chose to name our sweet baby boy Alexander James. His first name after my witty, warm-hearted grandfather that I so admired; James after one of my favorite books of the bible and the book we were studying when I first found out I was pregnant.

[Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing. James 1:2-8]
 

Week 1 - Fear to Acceptance

Jason and I went for our routine 20 week ultrasound.  I lay on the table while Jason tried to keep Ana occupied. Throughout the exam, the ultrasound technician clicked and measured and told us when not to look so we wouldn’t spoil the surprise of our baby’s gender. She pointed out our baby’s legs, hands, heart, 10 fingers, 10 toes: check, check, check. We were thrilled and happy as could be.

After the ultrasound, we waited for our OB and tried to keep Ana occupied. Our doctor came into the room and asked how I was. I responded as normal, “I feel great!" This pregnancy has been an absolute breeze. No morning sickness, no headaches and I’ve been fully energized and motivated to work out throughout the week. Our OB tactfully informed us that the measurements on our ultrasound we not as she would like. Specifically, she said that our baby’s limbs were measuring small. When I asked what this meant, she said that our baby most likely had a form of dwarfism. I shook my head and I asked if the baby’s limbs could start growing and catch up with where they should be. She showed us a paper that had a couple of numbers on it and explained that there was a ‘significant deviation’ from normal. Our baby’s head was measuring 1 month ahead of its torso and its limbs were a month behind. Completely blindsided by this news, we left the office with a referral to a specialist. Throughout the next week I grieved over the image of our perfect child; of our seamlessly normal life. Stronger feelings entered my mind as I thought of acceptance, future teasing and limitations that our baby would face. I began to research dwarfism the day after we got the news, but the first couple of days I found very little online. Finally, I found the website for Little People of America, which gave great information and parent support. I also found fantastic blogs written by moms of average height who have beautiful little children with dwarfism. The pictures of these families and the stories that surrounded them filled me with love and a new vision for our future. All of a sudden, height was not important at all and I quickly accepted what was ahead. I learned that the most common form of dwarfism is call achondroplasia and occurs in 1 out of 40,000 births. I couldn’t help but think of other disorders and how autism effects 1 in every 60 children, down syndrome is 1 in 650 children, and dwarfism, so extremely rare and off our radar, is now what we are learning about. It gave me so much hope that only very rare conditions of dwarfism were also pared with intellectual disabilities. I imagined our child: happy, heathy and smart; just shorter than the rest. It was a lot to wrap our heads around but I honestly think we were adjusting well. Now we were just hoping for a diagnosis of a healthy baby with achondroplasia.

First Post - Perspective

A story about love, loss, faith & growth.

There is a longer story here if you wish to read it. In short, our sweet baby has been diagnosed with a form of dwarfism.  His chest is small and the specialists we have seen say it may be fatal. This means that I could carry to term and our sweet baby could live only a few hours outside the womb or could live a long, independent life with some limitations. 

I have learned about steadfast,

unconditional love.

 

I have learned about a pain

I didn’t know existed;

pain that leaves you wounded,

empty & gasping for air.

 

I have learned about a deep longing

for something that I have no control over.

 

I am uncertain about what the future holds.

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

My certainty lies in the love that God has for me.

I believe in miracles. I pray and ask for this little ones chest to grow.

I also know and understand that God’s answer might be no.

I choose not to be angry with my God. I don’t know why I was chosen but God has a plan and I will continue to praise him through this uncertainty.