Grace

If I could have a lifetime wish,
a dream that would come true
I'd pray to God with all my heart
for yesterday and you.
A thousand words can't bring you back.
I know because I've tried.
And neither can a million tears;
I know because I've cried
You left behind my broken heart
and happy memories too.
I never wanted memories,
I only wanted you.

I discovered this poem and decided to post it, because it perfectly describes what I've been through these past 2 weeks. It amazes me how much I have changed since that moment I discovered our sweet Bernadette had passed. In an instant, I recognized our mortality, our lack of immunity against suffering and tragedy. It is only by the grace of God and many words of wisdom from other moms who have walked this road that I have gained hope that I will survive this, that our daughter is indeed in heaven, being held and loved by Our Mother and her Son. Without grace, I honestly don't know how I would find the energy to get up in the morning, let alone experience joy again.

So, hopefully I will someday learn to accept that I may never know why Bernadette had to die. I may never realize what graces have been poured forth into our family and into those touched by her short life on earth and in heaven. I don't think I'm there yet, but I am relieved that I am able to pray again, even if it's simple utterances of His name while I lie awake at night in darkness and sorrow.

I don't really know the point of my blog at this point. My original intention was to both educate other moms whose children have been diagnosed with cloacal exstrophy, as well as to keep family and friends updated on our situation. But obviously, things didn't go as planned. Hopefully, I will be able to continue sharing my thoughts as I grieve and heal from our loss. Maybe moms who experience stillbirth can learn from my experience...I know that much of my healing occurs from talking to others who have lived through such a tragedy.

Our Baby Girl

We have a daughter in heaven - her name is Bernadette Marie.

I think we always knew deep down that it was a girl, even though there are many more boys than girls diagnosed with cloacal exstrophy. We got some of the test results back. Nothing is finalized, but her cause of death doesn't seem to be due to a chromosomal defect. I was shocked by my reaction - I wanted it to be chromosomal because that would mean her body just wasn't compatible with life - in my mind, I was beginning to accept that. I don't know how I'm going to handle it if I find out that it was something that just happened, that if she was delivered but a day earlier, she would be here with us right now.

It will take some time for the autopsy report to be finalized, but I guess I have to prepare my heart for the distinct possibility that we may never know why she died. Please pray that we may find some closure in all of this. Thank you,

Michele

Funeral Arrangements

We scheduled the funeral for Saturday, November 3 at 2:00pm. A small reception will follow at our house. If you would like directions, please email me at michele.b.weber@gmail.com.

Edited to add:
Now that everything is finalized, I wanted to make sure y'all knew that the funeral is of course open to everyone. We will have a private burial at the cemetery immediately following the Mass, but we plan to head to the house right afterwards. Everyone is welcome to come, and like I said, you can either email me for directions or follow someone else to our house. It's about 5 minutes from the church.

A Bittersweet Goodbye

Well, we made it home. I didn't think it was possible to hurt any more than I already did, but yet sitting there in the room she was to share with Jack, with her picture in my hand, I couldn't shake the sadness or emptiness I felt. Our little baby was supposed to be in that back seat on that long trip home, staring and babbling to her big brother, Jack. It was supposed to be January, and we were supposed to have gone through weeks in the hospital to help her heal and live a normal life. It's not supposed to be October, the infant seat shouldn't be stashed away in the trunk, empty. This isn't happening. Why haven't I woken up from this nightmare yet?

So, saying goodbye to Baltimore was a relief, yet I yearn to be back there, waiting for that moment to arrive when we would welcome our little one into this world. I feel like I left a piece of her there, I abandoned the hope and promise that she was going to be alright, that she was going to come home and be a part of our family. The pain is unbearable, and I ask for your prayers that I may be relieved of it if even for a few moments.

My neighbors have been amazing. We came home to a stocked pantry and fridge, clean bathrooms and kitchen, vacuumed carpet, and pots of flowers in every room. We couldn't ask for a warmer welcome! Its details like these that make me realize how much I've taken friendships and community for granted. Hopefully, someday, I can pay it forward to another family in need.

Thank you

I wanted to say thank you to those who have brought us meals these past few days, who have offered up their prayers for our family, and who have contacted us with their concerns and love. It has been a difficult week. Much of the day, I struggle to put one foot in front of the other. I feel raw and angry. I want my little one back...I want to hold her, nurse her, tell her how special she is. I feel like my most cherished treasure - my own flesh and blood - has been taken from me. Unjustly. I know that our lives are not really ours...but I don't think I can ever comprehend why this little life could not be spared. I want to believe that she can see my face and know how much I love her. That she is resting her perfect little hand on my shoulder, comforting me in my sorrow. God, please let me meet my little baby in heaven someday.

We are still in Baltimore, waiting for the finalization of our child's cremation. I wish so much that there was some way we could bury her without cremating her first, but we need to bring her home with us, so that we are able to visit her often. I will keep you posted on any funeral arrangements. We plan to celebrate a Mass for her in the upcoming weeks.

Please pray for strength, as I struggle to find hope and peace again. And may God bless all those who mourn the loss of their children. May their tears be wiped away and their joy renewed.

God Bless,
Michele

A Joyful Day in Heaven

Our little baby passed away on Wednesday, October 17. They induced me, and I delivered her at 1:48pm on Thursday. She was 5 lb 8 oz. We aren't sure of the sex b/c the genitals were ambiguous, but we will let you know once the kerotyping results come back in a couple of weeks.

I went in for a fetal echo on Wednesday, during which they couldn't find a heartbeat. I knew something was wrong as soon as the chest showed up on the screen with nothing moving or beating. It was the darkest hour of my life while I waited frantically for John Mark, who had to find someone to watch Jack before he drove 40 minutes to the hospital. I remember shaking uncontrollably, refusing to put my hand to my belly to search for movement. The baby was breech, but they chose to induce anyway. They started cervidil that night. I was 5 cm dilated by the time they started the pitocin 12 hours later, so it didn't take long before my water broke and I started pushing. I got an epidural at some point during labor, but it only numbed my right side. When I began pushing, I was convinced I was in hell. I was terrified of what our baby might look like, of coming face to face with my greatest nightmare, and I simply couldn't comprehend how I was going to have the strength to push this child out only to have silence follow. The pain was horrific - I really don't have any idea how moms go through natural labor willingly. Finally, the child's behind (he was frank breech), then legs, came through. The head was last, of course. John Mark went over to see our deceased baby, and the perinatologist discussed with him some of the anomalies that might suggest a chromosomal defect. He had 2 thumbs on his left hand, and his right lower leg was split in 2, with 2 nubs instead of a foot. His eyes were slightly slanted, and his lips were thin. Part of the colon was outside the omphalocele, and as I said, the genitals were split in 2, and it was too hard to tell if it was a girl or boy.

I didn't have the emotional strength to see the baby until they wrapped him up and placed him in my arms. I'm sure all of Labor & Delivery heard my sobs. He was the most beautiful little thing I had ever seen, with perfect reddish-brown curls on his head and a soft nubby nose.
I don't think I will ever forget the helplessness I felt during that moment with him. How could I let this innocent little baby die? How could I not have noticed the ceasing of movements on Wednesday? Why didn't they just rip me open and try to revive him? Why did it have to end like this, after we dropped everything to move to Maryland to try to make things right?

I must say, however, that the care and support I received at Hopkins was incredible. The doctors and nurses were always focused on making things as comfortable as possible for me. They were full of encouragement when I was convinced I wouldn't be able to go through with it. The nurses cried along with us, and I almost felt guilty that I had to put them through such a terrible experience.

I was able to come home today, October 19, b/c I only slightly tore and recovery hasn't been too complicated. It's John Mark's birthday, and I couldn't think of a worse birthday gift, lol. We both feel at peace b/c we are too aware of all the pain and suffering this child would've gone through if he lived (due to his condition). But the emptiness I feel is overwhelming. None of this seems right. So, please keep our family in your prayers. We are probably going to head home to Alabama in a few days, once I am able to sit up and walk more comfortably. We are having our child cremated so that we can bring him home with us and have a proper funeral and burial. They are currently performing an autopsy to determine the exact cause of death.

I will keep you posted on any updates. Thanks again for all your prayers and support!
Michele, John Mark, Jack, and our little saint

36 week update

I apologize for the delayed update. We are getting settled, so I am finally able to spend a few minutes on the computer. John Mark drove us up to Baltimore last weekend, then flew back home on Monday. We are staying with friends who have so willingly taken the time to watch Jack and cook us dinner while I spend the days at Hopkins. A few weeks ago, I developed sciatica, and it has been really tough getting around and caring for our active little tot. So, John Mark decided to wrap things up in Huntsville, and he's en route as I type - yea!

I have been busy this week with surgical consults and prenatal checkups that left me emotionally drained and more anxious than ever to deliver this baby. Dr. Jallo, the pediatric neurosurgeon, stated that if she has closed spina bifida, we can wait to get it treated by Dr. Oakes in Birmingham. If it's open, they will fix it immediately. Dr. Sponseller, the pediatric orthopedic surgeon, prefers to do the osteotomies (readjusting the pelvic bones) when the baby is closer to 2 yrs of age, although Dr. Gearhart often likes to have it done when they are newborns. I was quite surprised by this, because it would mean a shorter initial stay and another longer trip later when our child is older. I imagine it will be very tough to deal with having our little toddler in traction for 8+ weeks, but I obviously trust their joint decision on this. I will keep you posted on what they decide.

My ultrasound wasn't super encouraging, b/c the physician that saw me (not Dr. Crino) was concerned that a chromosomal abnormality could be the cause of her condition. Her reasons were based on the fact that the baby's right leg was measuring very small, and she didn't think it was necessarily related to the cloacal exstrophy. She even claimed that the femur was measuring small, which was a new development. I refused an amniocentesis b/c any findings could potentially alter their decisions on treatment (i.e. they can deny to perform certain surgeries if she has a lethal defect). They also found only 2 umbilical cord vessels instead of 3. This occurs in 5% of pregnancies (and they might have already observed this in previous u/s, but this was news to me), but the doctor scheduled an echocardiogram for next week to make sure her heart is doing ok. I am also having to do non-stress tests 2 days a week b/c the baby is measuring small and they want to make sure her heart rate and movement are okay. I had my first one today, and everything looked great! I have been tempted to get really discouraged by this doctor's suspicions, but I really do sense that everything is related to the cloacal exstrophy and is not chromosomal. We'll find out soon enough!

My last appointment was with a perinatologist to do some basic prenatal care stuff. She didn't check my cervix, although when I was in Labor & Delivery a few days ago to make sure my back pain wasn't due to contractions, I was not dilated (my cervix was soft, however). Anyway, the baby is breech with his head digging into my ribs, and although that can very well change, she wanted to schedule a C-section for November 1 (The Feast of All Saints!). If the baby moves to the normal position before then, and I still haven't delivered by 39 wks, they will induce and I can attempt a vaginal delivery. She suspects that I won't go that long, but I'm not keeping my hopes up. Women in my family just don't deliver babies early. :)

Anyway, I apologize for not keeping in better touch with you all individually. Every moment I'm not at Hopkins, I am trying to spend with Jack or helping around the house. And since Jack has been blessed with his 2nd cold of the season, neither of us are sleeping much. (I am counting the hours until John Mark can be here and take over night duty! lol)

Thanks again for all your prayers, support, and gifts. We couldn't have made it this far without them!

Winding down...

Well, our days in Huntsville are winding down. I feel hugely pregnant and wonder how I'm ever going to make it through 2 days of driving, lol. John Mark insists that we are stopping at every rest stop so that I can walk for 30 minutes. Is he nuts?! Maybe I can convince him that 10 min of walking is sufficient. ;-)

Anyway, I'm posting to thank our friends and family here in Huntsville who have helped us in so many ways while we prepare for our little one's arrival. Our neighbors who are dear friends of ours have offered to watch our house and our cat (who will surely be relieved of Jack's absence, lol). They have given us so much support during this waiting period, and I can't thank them enough! Jack will undoubtedly miss his buddy, Ben, and his big sister, Anna. Our families went to Tate Farms last weekend, and I honestly don't remember having that much fun in a long time. I am still finding corn in the laundry room and the sock drawer!

John Mark's aunt and uncle held a surprise baby shower/going-away dinner for us this weekend, as well. We were so grateful for the farewells and the gifts we received! Our pastor came to the dinner and said a special blessing over us...I was very moved by his commitment to minister to families like ours who can often feel like the cross given to them is too heavy to carry alone.

Oh yeah, another thank you...my hubby's company is being incredibly generous by allowing him to work away from the office for an extended period of time so that he can be with Jack and me in Baltimore. Despite the hours he will have to put toward work, I am so relieved that he will be with us...John Mark has the amazing ability to see the positive in every situation, and I know his sense of humor will keep us emotionally afloat during the upcoming months!

OK, enough with the mushy stuff. I better get packing...Jack is notorious for taking short naps when I have a long list of things to do. ;)

Take care,
Michele