Easter / Week 4 Doctor’s Appointment

First and foremost, we hope you have had a blessed and holy time of Easter – in celebrating Our Lord’s Passion and Resurrection all for US!

As for Cristina and I, we were able to enter in to the Great Mystery of our Faith in a special way this year. On Good Friday, we decided to sit and pray/meditate as we watched The Passion on our laptop and during the 2 hours of the film, Cristina went through some of the worst post-surgery pains that she has experienced since the actual operation…..so she was really able to enter-in.

Our bedroom at the Ronald McDonald House….

Unfortunately, one of the realities for Cristina since the surgery is that all of Maria Isabella’s movements cause her an intense stinging/stabbing pain near her incision. (and the ab muscles that were cut through in order to access the uterus) So, while we LOVE to feel little Bella move….and trust me, the other night Cristina said she felt her jumping (you could even see her stomach moving a little from where I was on the bed!)……it’s also a painful experience. It’s not as funny as it sounds, but we both sometimes pray – nervously – to God that she continue moving, because each day that she moves is a GOOD sign, but we know that it means pain for Cristina. It’s tough as a husband because I’m unable to really do anything to alleviate her pains…..and the more that I talk, the more that Bella moves!

On Saturday – the Vigil of His Resurrection – I spent the morning learning how to make Puerto Rican roast pork or “Pernil” (pronounced like Pair-Kneel for all of our non-spanish-speaking family) and Puerto Rican mashed & seasoned Plaintains or “Mofongo” (pronounced like Mo-Phone-Go) with a Puerto Rican family staying at the Ronald McDonald House. It came out pretty good and looks like this:

Not as good as my Father-in-Law’s, but still good. 

For our “Easter-Vigil”, we had a visit from Msgr Michael Mannion (our new friend) who brought us – and 2 other Catholic families – Communion and prayer because none of us are able to leave the Ronald McDonald House to visit any of the nearby Churches. One of the families comes all-the-way from Chicago and are going through some of the initial phases of evaluation for treatment for their newly adopted son, Henry, who comes from the Ukraine.

Henry was born with an extremely rare disorder called Larsen’s Syndrome. His parents, Paul and Carla, have 6 biological children and have answered God’s call for them to adopt another – a special needs boy who was abandoned by his mother in the Ukraine. They were told about his disorder and special needs when they first enquired about adoption and specifically Henry, but when they had his first medical exams here in the US, they found that his physical condition was MUCH MUCH different than they had ever imagined or had been told. Please pray for Henry and for Carla as they pursue some of the options for his treatment at CHOP, they are an incredible family and it is obvious that if Love is the cure for any disease/disorder/wound, Henry is in very good hands! Check out their blog at : Bringing Henry Home. 

That same night of the Easter Vigil, some of the other guys here who are staying at the Ronald McDonald House with their wives and I decided to grill-out on the back porch, as a sort of Easter celebration and a way to get out of the daily routine of things, especially being stuck in the house. It turned out to be a pretty nice night of grilling, sharing stories and enjoying the company of other families who are all going through difficult times themselves. In some profound way, we can see how God has brought us all together at this very time, from all around the world, to share in these scary but hopeful moments of our lives.

Well….back to our countdown. After counting down the 6-7 days between each wednesday, we arrived at our 4th appointment since being discharged from the hospital. It’s kind of weird but since finding out everything in the ultrasound about Bella’s back, back on Feb 13th, every ultrasound seems to cause us a certain amount of nerve/anxiety. I also feel like a pro when it comes to what the technicians and doctors look for once they get Maria Isabella in their sights on the ultrasound screen…..”Doctor, how are the fluid levels in her brain? How are the membranes on the Uterus looking today?….”. My wife usually has to pinch me to shut-up before I practically run through the actual check-up without giving them time to get all of their data!

Praise God, today everything (fluid levels, toes/feet/leg movement) seems to be going exactly the same…which is a VERY good thing! Maria Isabella seems to be jumping around late at night while we watch a movie or play games on the bed, but by the time she’s looked at in the Ultrasound, she’s back to a breach position. She’s definitely as stubborn as her mother…..and the Doctor tried to get a good picture of her today but right when she had moved enough for the good quick shot of her face you see in the picture above, she started moving again and facing downwards in the breach position. The doctor was laughing and getting a little frustrated, “Oh, well if that’s how it’s gonna be Maria, then forget it!” she told her.

After finishing up, we were able to head down to the NICU to visit our friend’s daughter…..the woman that we mentioned in a previous post that had global Membrane Separation (one of the risks associated with the surgery) and had to have a C-Section only 2 weeks after her Fetal Surgery. Her daughter, now 28-29 weeks old, (or 1 month out of the womb) is also doing really well! She’s tiny….a little over 12 inches long…..but her development is going really well! Please continue to keep them in your prayers…it’s a long road ahead and she has had to sacrifice being away from family while she lives here at the Ronald McDonald House and in the NICU at CHOP. The NICU at CHOP is world-renowned and is one of the most beautiful yet warm/comfortable ICU units that I’ve ever seen, even in pictures. Here’s a little breakdown of how it’s set up:

 That’s all of the news we have for this week. We thank everyone who sent cards and messages to Cristina on her birthday Friday…and thank you to all of those who have been praying and supporting us…..you continue to be so generous and have taken a HUGE load of worry off of our shoulders as we slowly and nervously count down each week as it passes!

Please continue praying….I will try to update this twice a week….and I’d love to share more of the stories of the families and children who are staying here at the Ronald McDonald House….their stories and their joy is amazing….we are truly in the midst of living Miracles!

Thank you and may Our Risen Lord Bless you!

Andrew (and Cristina and Maria Isabella)

Week 3 doctor’s appointment

At this point Cristina and I have our countdowns until Wednesday’s weekly appointment, so today was very exciting for us as you can imagine.

After putting a couple hours of work in this morning and after getting Cristina ready to leave her bed (after 7 days of being stuck there!), we headed to CHOP. On the way we found this voicemail from this morning! :

Message from the big guy

It’s been such a blessing to have such support and prayers coming our way!

The appointment was as normal and routine as the last 3, basically consisting of a 30 minute ultrasound with questions from the Nurse Practitioner and our Doctors. Also, Maria Isabella’s anatomy is reviewed and checked to monitor the progress….

The liquid on her brain ,specifically within the ventricles, has remained stable. Remember, one of the major effects of the Spina Bifida defect (hole in her back, exposing the spinal cord and nerves)  is the amniotic fluid among other fluids, slowly accumulating on top of the brain which causes Hydrocephalus – or “water on the brain – in latin. They let us know from the very beginning when we were discharged post-surgery that it was very normal (although NOT necessarily always the case) that the fluid levels might slowly rise before they were to fall (God-willing). The normal size of a baby’s ventricles without Hydrocephalus is about 10mm on each side.   Today the ultrasouns shows that the  levels remained the same – about 13 mm and 14mm – on the two ventricles! While they are ‘slightly’ larger than the average baby, they still remain at a good size! Let us keep praying that they stay that way!

Also, last week in the ultrasound we had noticed that Maria Isabella had her legs crossed – indian style – and that meant that she was indeed moving them. Today we noticed her legs were uncrossed but she had her feet overlapping one another….and the best part – we actually noticed a slight twinkling of her toes….which means that if she’s able to move her toes, shes able to move her feet….and her legs. That’s a great sign! Please pray that this also remains the same and that the surgical closing of the defect is able to prevent any further damage to her nerves and thus immobility.

Here you can see her feet, and the larger oval shapes are her knees!

Overall, we couldn’t be happier with how she looks in the ultrasounds….she continues to move and to wiggle around while they try to examine her….and that is all a good sign!

Please continue praying for her protection within the womb…and for Cristina’s continued recovery.

I promise to keep updating whenever we have news!

In Christ,

Andrew

Holy week/3 weeks after surgery

It’s hard to believe that it’s been 3 weeks since the surgery on wednesday. While time is going by so slowly, looking back it seems like it’s been forever!

As we enter in to this Holy week and prepare for the greatest mystery of our Christian Faith, we can definitely feel His presense with us.

Part of our weekly routine (apart from me working 9-5 on the computer while Cristina sleeps through most of the day) has been the visit of a new priest friend, Msgr Michael Mannion, one of the pioneers and humble author of the first book on Abortion and Healing. Mother Teresa continues to sneak into our lives, showing her presence and intercession each day….and Fr. Michael Mannion is a confirmation of that. His book:

Not only has Fr. Michael been generously giving of his time to us and to his visits with us, he has been joyfully sharing his experiences and adventures working along side Mother Teresa in Calcutta. Yesterday, after bringing us Communion to the Ronald McDonald House, he gave us a Miraculous Medal that Mother Teresa had given him during one of their adventures in India.

To top that off, the Sisters of Life in the Bronx sent Cristina a beautiful care package this morning and in it we found this:

(A hand-knit prayer shawl based on the Missionary of Charity habit colors!)

At this point we couldn’t help ourselves but laugh a little…and Cristina looked up to heaven and said “Ok Mother Teresa, we get it!”

What else can I say? God has been and continues to be good to us….we really don’t deserve these blessings.

From what I have learned from the other young mothers who are here at the Ronald McDonald House healing from the same fetal surgery that Cristina and Bella had, it seems that it becomes a waiting game…even painful at times. Our “big day” of the week is Wednesday….and that will be the day that we have our weekly check-ups to see Maria Isabella’s progress and growth as well as her brain function and the slow relief of her hindbrain on her spinal cord. (that’s the hope!)

On Sunday we were blessed with the visit of one of the young women who gave birth last week after going through the same process that Cristina and Maria Isabella are going through…..the little girl was born at 37 weeks and she is GORGEOUS! Her feet are grown a little inwards (due to the Spina Bifida) but through patient and consistent physical therapy by the mother, she will most likely regain all of her functioning. She also seems to have full control of her bowels and is feeding extremely well! Quite different from what the initial doctor’s visits back home predicted! (and sadly, the opinion of family members who didn’t want her to have a baby with “problems”) She truly is a miracle!

We now have a more visual idea of what to hope and pray and wait for…..Cristina can now feel little Bella move more than ever and her pains (while not completely gone) are slowly starting to get a little better. The biggest struggle for her at this point seems to be the fact that she is confined to her bed….and usually has to sleep through the day because of the meds.

*****Please keep 2 of the other post-fetal-surgery women in your prayers…..one of which went in to labor only 2-3 weeks after surgery! Her baby was delivered at 25 weeks due to one of the risks associated with this surgery “Global Membrane Separation”  and required the baby to be delivered immediately. Thankfully, the baby is doing well for such a pre-term birth and although she is extremely delicate and fragile….the doctors are doing all that they can to keep her alive and developing. Her mother will remain here in the Philly area until she is about “9 months” of ‘age’ or until she would have supposedly been born at 9 months. 
The other woman to pray for was someone who had the surgery a little over a month ago and last week spontaneously and unexpectedly (we had had a conversation the night before, everything was going great) felt her water break at 5:30AM and is now in the hospital while the doctors try to figure out how to keep the baby in her womb long enough for her son to develop a little more. ****** 

I’ve said this before, but it’s worth repeating for the sake of bringing in more prayers for Cristina and Maria Isabella – these risks can happen to anyone! We have a strong faith and hope in Our Lord, that He has brought us here to this point…that He opened the doors not only for the surgery but also the stay here at the Ronald McDonald House. (which was confirmed when we ran in to a fellow Catholic Blogger/Mother from Chicago who recognized us here at the House….I’ll have to blog about that another time!) No matter what happens, we trust that He is in Control and has His Hands in all of this. BUT, we count on your prayers…and as nerve-racking and painful this waiting period can be at time….(Cristina’s random sores and pains can be signs of anything) we strive to constantly lay everything down over to Him, especially this Holy Week as we prepare for what is the cause and reason for our Hope – the Resurrection!

So tomorrow we are heading back to CHOP for our check-up and we can’t wait to see our little girl!

Please continue to pray for her healing and for God’s Will to be done in all of our lives!

Also know that even as this has become a prayer intention that seems to be slowly “drawn out” because of the long waiting period we still have, (12-14 weeks!) we still need your prayers! We count on them daily and return them to God for all of those who are praying for us!

We are so grateful for all of the love, support and prayers that has been sent our way!

God bless you all! We love you! (Expect some updated pics tomorrow!)

In Christ

Andrew

Reflections from a mother on bedrest

I sit here as I end the first week of what my doctors are calling “Strict Bed-Rest”…..at the moment I write this, I find myself alone as my mom takes our dishes downstairs to the common area to wash them.

It has been a few hours since my husband has left me…..he had to head back to NYC for a Spanish Pro-Life Congress that is being run by his office at the Archdiocese of NY.

Oh, be still my heart! How I miss him! I can’t help but embrace this moment to pray and to speak with my Lord….”Father, I miss him!”

I hear Him speak to me gently, “Fear not my daughter, for I am with you!”

“But Father, I feel so alone without him here by my side”

“I am with you, know that I am the ONLY one who can truly fulfill you in that deepest of ways…and in these moments of missing your one flesh, hold on to ME!”

At this moment I imagine myself embracing Our Lord….and as I fall more deeply into prayer, I feel the splinters of the Cross stinging my lips…..

….I have to tell you (and I know this might sound crazy) that during my first trimester of pregnancy with Maria Isabella, I heard the Lord speak to me (Andrew is my witness for those of you who might think that I’m schizophrenic!) saying: “Cristina, I want you to carry a Cross for this little Life within you”

Now naturally I’m thinking headaches, nausea, even the progesterone treatments (in extra-large injection form!)….you know, the typical pregnancy symptoms. Boy, was I wrong!

At this point – after finding out the diagnosis and undergoing reparative surgery for Maria Isabella – I now understand more about what His plan is with this “Cross” I will be carrying. I truly feel that the Lord is taking Andrew and I together on a journey to go deeper into understanding this LOVE (Jesus) that was willing to die – and continue to die, daily – for His Love.

I mean….I’ve had to die to myself – literally – in taking up this Cross (whether I liked it or not!)  I’ve left my job, family, and friends and have moved to South Jersey…all in the name of taking up this Cross (and embracing it!)

At this point I feel like I have no other choice but to tell God “Take me wherever you want me to go!”

So…I ask all of you to please send me your prayer requests….I have a lot of discomfort/pain/soreness and even nervousness to offer up to Our Lord….so I’d love to add your intentions to that list!!!

Either post your intention here, or send it to me via catholiccafeconleche@gmail.com

Oh, and please keep praying for our recovery!!!

With Love

Cristina (and little Maria Isabella)

Recovery – Day 3

UPDATE 3:00PM – After 2 full days of bed rest and very limited movement, Cristina got up to walk! 

12:00PM – March 16 2012

Today is what the nurses are telling us will be the hardest day, post-surgery. An hour ago Cristina’s epidural was removed and the little black button next to her head, (that became her best friend) was taken away from her.

Keep in mind that this also happens to be Cristina’s first operation ever…..so adding the fact that this type of surgery -while it is even rare around the world – is extremely invasive and delicate, post-op/post anesthesia soreness and pain is also so foreign to her…so my poor baby is in A LOT of pain.

Overall, all of her vitals are good….her breathing is slowly improving (although her lungs have a way to go) and her uterus has thankfully remained in a calm-state. This morning the ultrasound showed that Maria Isabella is still calmly relaxed and in a breech position, which also causes Cristina more pain on her incision as Bella slowly bumps into the wall of her uterus.

The next big step is the removal of her catheter, allowing her to slowly get-up-out of bed and to the bathroom. Even though this activity will be limited, the more that she is able to do this, the better her function will improve and her lungs will be back at 100% function.

Please keep praying, these first few weeks are CRUCIAL in maintaining the calm-state of her uterus and keeping Maria Isabella in the womb until she should be born!

Thank you for all of your prayers! I will update you as soon as we find out more!

BTW – our nurse this morning came in to change Cristina’s IV and had a St. Gianna medal dangling from her neck….she then told us that St. Gianna interceded for one of the miracles that happened here at CHOP for a child with a severe blood disease!

Check out her story @ http://www.saintgianna.org/

The Lord continues to remind us that He is in control!

In Christ

Andrew

Recovery – Day 2

UPDATE:

3:00PM – Fetal Cardiogram and Ultrasound show that everything is GOOD! 

Look for the red and blue flashes on the monitor to see how healthy Bella’s heart is!

8:00AM – Day 1 after surgery.

Last night turned out to be a pretty uneventful night and between each 5-10 min checkup (they are still VERY vigilant over Cristina for the first 48 hrs), I was able to relax, knowing that Cristina and Maria Isabella were doing just fine.

As the initial side effects of the Magnesium Sulfate and various other anesthesia begun to wear down, Cristina was able to make more sense of the whole procedure and to remember the different family members that had visited and called to check up on her. She remembers waking up in her recovery room (which feels like a hotel suite!) and asking about 10 times, “Is the baby ok?!”

Not too bad, huh?

So we laughed and relaxed….got to share a little with our nurses and doctors (who have been AMAZING and very loving/gentle). Please remember Margie and Lindsey, our full time nurses here at CHOP in the Special Delivery Unit…they are two beautiful young women whose care for Cristina, I will never be able to repay….and I believe that Cristina’s well-being and surprisingly peaceful recovery is partly do to them and their love. Sometimes, when we got caught up in conversations throughout  the evening, it was hard to tell that Cristina was in a surgery at all!

Not quite what we had expected! The nurses – while they remain calm and stay busy – still seem to be very much surprised at how well Cristina is doing on the meds and even more surprised at how well her uterus has taken everything. I’m no pro at all of this, but from eavesdropping on different conversations between surgeons/anesthesiologists/nurses, it seems that they would expect even the slightest contraction or irratation from the uterus by this point in the recovery!

God is over-doing Himself! Now we wait to see how His plan shall unfold, as it already has done, even in the past day!

Please continue praying! I will try to update everyone by lunchtime, after the team attempts the first post-op ultrasound of Maria Isabella! (sometimes the baby can still be a little sleepy after this procedure)

BTW – It’s been incredible how much prayer is going on ALL AROUND THE WORLD! Not only do we have prayer warriors from my office in the Archdiocese of NY praying hard, over 1,250 people viewed the blog and over 50 people sent us messages via blog, committing to pray for Cristina and Maria Isabella! Thank you! We are all united….and as a proud father I can say that our little girl has some very special mission with her life!

In Christ,

Andrew

Surgery

UPDATE:

1:35PM – Cristina is doing well, surprisingly well, actually. The nurses are feeling comfortable with starting to ween her off of the highest dose (level 4) of Magnesium Sulfate, down to a lvl 3 dose, which is making her much more aware and with less naseaua than your typical post-op case.

She still can’t have anything to drink (not even an ice cube yet)because of the specific anesthesia used to calm the uterus.

I’m still here by the bedside, waiting to see how she reacts to everything, and periodically soaking her face with ice cubes (she’s burning hot from the meds)

UPDATE:

11:35AM – Cristina is doing well in recovery, about as good as any of the patients are when they initially leave surgery and feel the shock of the Magnesium Sulfate.

Also, they have to closely monitor her lungs to make sure they dont fill with fluid.

The nurse – “lying on one’s back over time will cause excessive amounts of fluid to fill the lungs, as does being pregnant (naturally) as does being on Magnesium Sulfate…..Cristina is unfortunately in all 3 of those boats, so we have to make sure this doesn’t happen and cause her to stop breathing.”

It is somewhat normal for there to be contractions during this first day and in case it happens, the team will intervene to prevent them from escalating into labor. Up until now, she is not contracting and that is a very GOOD thing.

More to come. Thank you for your continued prayers!

UPDATE:

10:45AM – Cristina is in recovery but is still pretty out-of-it….she’s thirsty and feeling extra hot due to the Magnesium Sulfate (used to relax the Uterus)…and she will be feeling this way for the next 24-48 hrs….with the goal of helping the uterus to relax enough for her to heal and to help Maria Isabella re-adjust for the long-haul….3+ months of pregnancy and healing.

These next 2 days are crucial in makin sure that her contractions (which are natural in the beginning- her uterus is ‘confused’ ) don’t lead to a necessary delivery.

Thanks be to God, the surgery was pretty simple and uneventful according to the doctors!

We will continue updating.

UPDATE:

9:00AM – Dr Sutton came to inform me that he had finished the neurosurgery on Maria Isabella (closing her opening in her back) and now they were finishing with closing Cristina’s Uterus and stomach incision. She will be back in her room recovering shortly.

Now we must pray for the next 48-72 hours, for her Uterus to remain in a calm state and for Maria Isabella to survive the initial shock.

More updates soon!

If you have been praying up until this point in our journey, I beg you, pray now more than ever!

March 14th 2012, 5:30AM – Cristina and I arrive at CHOP to begin preparations for fetal surgery.

6:30AM – After the epidural is set, (something Cristina swore she would avoid by delivering naturally) we pray and wait. It starts sinking in….our lives are really about to change forever, we are embarking on a long 3-4 month journey….a journey full of more praying and waiting.

7:15AM – I kiss my wife and her womb one last time before I make what is probably the biggest act of trust that I’ve ever had to make before, and the surgeons swipe their key cards, opening the OR doors and disappearing into a long dark hallway.

Waiting. Praying. Our faith, hope and trust are in Him.

More updates to come. Please pray for our young little family.

In Him,

Andrew

Update – 1 Week until Surgery

Updates for Thursday, March 8th 2012

Thank you all for your continued prayers!

This past Monday and Tuesday Cristina and Maria Isabella were evaluated at the Children’s Hospital of Philadelphia(CHOP) to see if they qualified as candidates for the pre-natal, in-utero surgery at the Center for Fetal Diagnosis and Treatment, which was pioneered by the Doctors at CHOP more than 16 years ago.

See link for the 12-part mini-documentary about the surgery, DEF worth the watch…it’s just plain incredible what these people are doing!(Make sure to click each chapter on the right when each video clip finishes)  –  http://www.chop.edu/video/fetal-surgery/spina-bifida-video.html

Monday was full of 2-3 hour long ultrasounds/sonograms and MRI’s of Maria Isabella, as well as an overall evaluation of Cristina’s body and medical history. The criteria that must be met is quite specific and this team takes this part very seriously, as they desire very healthy babies just as much as healthy mothers.

After meeting with the entire pioneering surgical team AND the actual pioneer himself, Dr. Scott Adzick MD, we were given the 1-2 hour long presentation on Spina Bifida – what it means for the child and also what it means for the parents/family of that child, from the moment they are born to the different stages of development. We didn’t quite realize just how much of a big deal it really is.

Following the basic presentation on Spina Bifida and what it may or may not mean for little Maria Isabella, the crew gave us a crash-course on the actual surgery, repeating more than 5 times – “This is a REALLY BIG deal.” As with any case of Spina Bifida where the actual defect is seen visibly and the spinal cord has been exposed, the typical treatment is very common and most doctor’s are trained at almost every hospital, all around the world – deliver the child and immediately operate on their back, slightly easing the exposed and possibly deformed shape of the spinal cord back into it’s *normal* position within the spinal column and sew the back-up, helping to protect the child’s cord from any further damage.

Dr. Adzick thought there was another way to do this and he began working on animals – sheep and monkey fetuses – within the womb,at a little over halfway through gestation, and studied the results.  Through those years of experimenting,  he discovered that if surgery was performed on the fetuses with back defects (much like Spina Bifida) BEFORE they were delivered, they had a much higher rate of preventing any further damage or loss of mobility, as seen in the fetuses that were operated on after birth. Note that there is no cure, but more benefits in preventing further damage to the spinal cord.

This is where the MOMs (Management of Myelomeningocele or ‘Spina Bifida’ Experiments) took place. 183 participants enrolled and were completely randomized. Half of the women underwent pre-natal surgery while the other half had the children delivered at 9 months and had the typical post-birth surgery. The study reported SIGNIFICANTLY improved outcomes for the children who received the pre-natal surgery versus those who were operated after birth at 9 months.

In fact, the results were the following for those who received the prenatal surgery:

-Reduced need for ventricular shunting (measured at 12 months of age)

-Reduced incidence of severity of neurological effects, such as impaired motor and sensory function of the legs

-Reversal of the hindbrain herniation (typical in Spina Bifida)

So the benefits are obvious. But the fact of the matter is that this surgery is quite serious…and doesn’t come without it’s serious risks. In the hundreds of surgeries that they have performed in the past 16 years, they have lost a child during surgery…..although one of the greatest and most increased risks from this surgery is the woman going in to pre-term labor. This varies in severity – from days/weeks after the surgery, resulting in most cases, the death of the pre-term born child.

Now to the prayer requests.

Cristina and I are set to travel to Philadelphia on Monday (the 12^th) for our first pre-op exams all-day on Tuesday. They have to do a quite strenuous evaluation (again) on Cristina’s heart/lungs/overall health, as well as Maria Isabella’s heart and her position in the womb. After a team meeting with the same team who pioneered the surgery and who performed this specific surgery (no stand-ins!) on Tuesday evening, we need to get to bed early because the operation begins at 5:30AM on Wednesday. Pray for the health of the doctors/surgeons performing, as well as all of the medicines – that everyone may be like pencils in God’s hands.

After the surgery – Cristina will be recovering in CHOP until Sunday/Monday (4-5 days) and then be discharged to her more permanent residence for the following 3-4 months in Philadelphia. We trust that He will provide everything along the way, but I would ask that you pray for this aspect of our journey as well. Please pray that an affordable residency is provided, as well as a location that will allow me to travel from work in New York City to Philadelphia (we don’t have cars!) at a somewhat affordable rate.  I’m trying to work something out with my job here in NY so that I will only lose out of the least amount of days of work possible  (and money to pay bills/transportation/hotels if needed!!!) for the next 3-4 months.

We will update everyone in our prayer-chains as the days progress….trusting in His Providence throughout this whole process.

Thank you again for your prayers  and may God bless you!

Andrew (and Cristina and Maria Isabella)

20 week – smile!

The crazy thing about a curveball…..

….is that it makes a homerun that much greater.

So I share with you about Monday, February 13th, the day our lives changed forever…the day that my wife and I were told about our little “gift in disguise”.

We were in the doctor’s office for a typical 4-month ultrasound of Maria Isabella’s anatomy, something Cristina and I had been looking forward to each month – a change to see our little girl in action. Coincidentally, it was the first time we actually got to see a close-up of her face and also the first time we could see her big smile on the screen

It was the final moment of the appointment that hit us like a-ton-of-bricks. The doctor arrived to relieve the ultrasound technician of her duty and to inform us that they had found a “little problem”. It seemed that during the 5^th or 6^th week of development, Bella’s little back wasn’t able to fully develop and instead of closing up over the spinal cord, a little hole was left in place.

BOOM. Even with the tears pouring down the sides of our cheeks, we felt numb and unable to move.

Then began the slow de-evolution of our child’s worth as the doctor (with good intentions, I don’t doubt) described the diagnosis.

From “your baby” to “the baby” and now to “the fetus…..”

“the fetus….has developed Spina Bifida and we need to go to my office to discuss your options” he told us as he awaited us in his even smaller office.

At this point, my adrenaline was pumping and therefore numbing my ears from allowing any of his medical terminology to enter and process in my brain. The words flew by my ears as he described the worst case scenario with this diagnosis and I entered into defense mode. My only concern at this point was the safety of my now sobbing wife and our little daughter safe within her womb, even with her now discovered “little problem”.

“The first option that most people choose when the fetus (again with this word that helps us sleep at night) has developed Spina Bifida, is to quickly end the pregnancy”.

“ARE YOU KIDDING ME?” I think to myself… “Did you not just see the joy on our faces in witnessing the smile of our little daughter less than…..5 minutes ago?!”

Isn’t she beautiful! (little girl born with Spina Bifida)

My stare answered for my heart, and the doctor quickly laid out the next options in case we take (sadly the now rare, he tells us) path of continuing with the pregnancy. Again, these words fell upon deaf ears as both of us were had only two things in mind – meeting with our primary doctor and contacting our family and friends.

After jumping into a cab, we immediately contact our parents (tears ducts now working on full blast) when we realize that our little Bella’s mission had already begun. As Cristina and I hold each other in prayer, I witness something that no NYC cab driver would dare to do. Moved by compassion, our driver passes us tissues and then turns his meter off….during RUSH HOUR traffic in Manhattan. He explains to us that he is a father and that he can’t even imagine what it would be like to experience all that we were going through….and after attempting to offer him some sort of cash out of appreciation, he begs me to not “deny his charity”.

It hits us. This. This is Maria Isabella’s mission now, people giving-of themselves is now her mission.

For the remainder of that evening, Cristina and I passed through various waves of emotions – from the tears of mourning our “ideals” for our little daughter to the excitement and joy as we reflecting on the gift that she is and will continue to be.

Now that the initial shock of things has  left us, we are doing very well! God has already begun working miracles in our lives and in the lives of those around us, all through our little gift, Maria Isabella. We are so excited to be a part of His greater plan and we will continue to update everyone as we go in to the next steps of this journey and we ask for your continued prayers.

Also, please understand that no matter how hard this all seems, Cristina and I are not sad. Of course within us there are moments of “sadness” and of re-learning what the word “normal” really means, but we are not sorry or sad.

Actually, through all of this, we feel blessed and at times unworthy to have been given such a gift. I can tell you honestly that I have fallen even more deeply in love with Cristina through this, and I have never felt more strong!

One of the many generous doctors that we have encountered in the past week shared something powerful with me. He said, “I have been working with children with Spina Bifida for years and even though it is hard to understand it at first, I always tell their parents, ‘You don’t realize how much of a gift this child will be to you and your family’. Even if it takes some more time than others, almost all of them come back to me to tell me that I was more right than they could have imagined.”

Cristina and I pray for the grace to understand this. We cannot wait to meet our little angel, Bella!

We promise, more updates to come soon!
In Christ,

Andrew, Cristina and Maria Isabella Pocta