A letter you'll never read

My beautiful Juliana,

I know you’ll never read this, but I have to write it anyway.  Perhaps when we meet again in Heaven I will be able to hold you close and whisper these words...

We miss you. Daddy and I are trying to do the things that make us who we are, but who we are has changed since meeting you.  We prayed and hoped so much for you & you fought so hard to stay with us. I am so proud of you, I love you, and though I regret the pain and suffering that you went through, YOU will never, ever be a regret.

I always wanted you - I cried tears of joy when I found out you were coming & even more sweet tears when we learned you were a girl. When we got the results of your 20 week ultrasound - the HLHS diagnosis - I was so scared. I wanted so badly to be strong for you, but I was so overwhelmed.

From the moment you arrived, we were so enamored of you. Your eyes were the brightest I’ve ever seen. I miss snuggling into your soft hair & the feel of you sleeping contently in my arms.  You were such a perfect little love nugget.

I recently read a blog about infant loss that asserted that there is no pain in Heaven, so you didn’t miss out on anything here.  It also highlighted how you won’t have to endure the suffering and rejection that comes with living on this Earth. I’m glad that you aren’t in pain anymore, my sweet angel, but I still wish we could share this life with you. Life here on Earth is full of ups and downs, but I still believe it is worth living.

I wish we could hold you, teach you, watch you learn and grow.  Gavin talks about you sometimes. One of the sweetest moments after you were born was when he asked to give you a kiss. I long to see you play together as you grow.  You two would have been a riot together, no doubt.

We love you so much, Juliana. You were born with half a heart & you took half of mine with you when you left. Your daddy and your brother are getting me through each day, sometimes one minute at a time. We are praying for lots of help, because losing you is too much to bear.
You will always have a home in my heart.
I love you, Mommy

Posted by Kim on 1 reply

Juliana's story

Juliana Elisabeth was born on November 13th at 1:11pm. My blood pressure had been rising for a few weeks & both our family & the doctors were concerned that I might be developing preeclampsia again. It was 5 days from our scheduled induction date & rather than wait & risk the need for Magnesium Sulfate, we decided it was best to go ahead with the induction a few days early. Once the induction was started, I had contractions every 2-3 minutes all night with severe nausea and several episodes of vomiting. It was a long night, but we were so excited when Juliana made her grand entrance.  The midwife laid her on my abdomen for a very brief time before she was whisked away for resuscitation.

I have no idea how much time elapsed before the medical staff brought our Juliana back. She was receiving oxygen through a nasal canula, but she was pink and beautiful & looked like a healthy little girl. At this point, I was able to hold her for a minute before she was taken to the cardiac ICU.

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The first few days were like a dream come true - our little love seemed to be doing well. She still needed some oxygen therapy, but the doctors thought the operation she was scheduled to have on 11/18 (the Norwood procedure) would fix the problem. We were able to hold Juliana & begin feeding her. It was uphill battle at first, but once she got the hang of it, she was an avid eater. She loved to be snuggled tightly & was doing a great job of nursing.

When Monday arrived, the attending physician in the ICU called to say that because Juli was still having oxygenation issues, they thought her surgery should be moved up to Tuesday instead of Wednesday. Anthony and I rushed to the hospital to spend some time with her, only to find out that the pod Juliana was in was closed for visitation because another baby was receiving a procedure. It was nearly four hours later that we were finally able to visit & I only had one chance to nurse her before she became NPO for surgery. Anthony and I both stayed in the ICU that night. I spent several quiet hours with Juliana tucked in my shirt, praying for a good surgery & just savoring the time together. This was the best time that we had together.

Anthony was able to carry Juliana almost all the way to the OR on Tuesday morning. We both gave her a kiss & I cried as we placed her in the hands of the anesthesiologist.  We met with her surgeon, Dr Spray, briefly before the went to perform the procedure, which we expected to last 2-4 hours.  Less than two hours later, the surgery was completed & everything had gone well. We were so relieved and so grateful!

I was exhausted because I hadn’t slept more than 2-3 hours since Juli’s birth because I was pumping and nursing her in the ICU. We decided that I would spend the night back at Rolly and Margie’s house so that Juli and I could both rest and recover. We decided to take Gavin out to play for a little bit because I’d barely left the hospital since Juliana’s birth. 

While we were at the playground, the ICU doctor called to advise that Juliana’s oxygen saturation had improved for a few hours, but that it was low again & they feared that the shunt they’d placed that morning had a clot that was blocking perfusion to her lungs. Baby girl was taken to the cath lab to make sure her shunt was not occluded and that her pulmonary circulation was good.

The first attempt to place a stent in the cath lab somehow advanced too far and ended up in the wrong place, so the team inserted a second stent to open up a "twisted vessel," but the guide wire got stuck & in the process of removing it (the doctor actually said, "yanking it out"), they tore another vessel, which may have caused irreparable damage to a very small portion of lung tissue. The doctor advised that after this happened, they started to suction a lot of secretions from her lungs & she went into cardiac arrest. Our sweet baby had CPR & was placed on an ECMO circuit. She was hooked up to an EEG to monitor for seizures & the nurses checked cultures of everything.

All of her cultures came back negative & her heart function seemed to be improving on ECMO. The doctors wanted to give Juliana the weekend to rest and allow her heart to become stronger.

Gavin came down with a cold on Saturday & we were unable to get him down to bed on Saturday night. He was still tossing and turning in our bed at midnight when the ICU doctor called to say he thought Juliana’s head ultrasound might have evidence of bleeding, but that the test was unreliable and he needed a CT to confirm.  At 0200, the doctor called to say that there was "significant bleeding" in Juliana’s brain and that we needed to come immediately.

When we arrived, the doctor advised that Juliana had bilateral subdural bleeding with a small shift, but that there had been no change in her neurological exam.  The plan was to stop her Heparin infusion and continue to run ECMO until the team arrived to remove her from the circuit first thing in the morning.  We were so thankful when the repeat CT scan showed that the bleeding had not increased & even more thankful when the team arrived to remove her from the ECMO circuit. She also had a catheterization at this time to make sure blood was flowing through the shunt placed during her surgery.  Again, everything went smoothly and Juliana was back in the ICU within a few hours.

The next few days continued to be a roller coaster – the bleeding around Juliana’s brain remained stable, but she needed anticoagulation therapy for the shunt placed to perfuse her lungs.  Juliana was sedated and paralyzed most of the time.  On 11/24, the ICU team started an infusion of low dose heparin and we were told that if her head CT was stable that night, she would go to the cath lab on 11/25 to assess the pulmonary arteries and the shunt.  Once again, the cath team found nothing occluding the shunt or the pulmonary arteries, but Juliana continued to struggle to keep her oxygen up, even with a huge amount of respiratory support.  Anthony and I both thought that she had just been through so much & she needed a few days to rest and heal before the support could be weaned. 

The afternoon of 11/25, the medical team was at Juliana’s bedside trouble shooting her ventilator settings and medications together.  A couple of the anesthesiologists – Drs. Montenegro and Nickleson –  worked tirelessly to bring her oxygen saturation up & when we left, her sats were higher than we’d seen most of her stay.  Dr. Spray came by and advised that he thought we should back off on some of the medical interventions and give Juliana a few days to rest and heal. We went home for a few hours feeling encouraged.

After getting Gavin to bed, we returned to the ICU to visit our sweet baby girl for a few hours.  We were completely shocked when the doctor advised that the partial pressure of oxygen in Juliana’s blood was critically low and that she would likely not survive.  He presented two options for us – letting her rest with the current settings and hoping things improve or “normalizing” her ventilator settings, which meant cutting her tidal volume in half.  After what we’d seen the previous afternoon, we requested the help of the anesthesiologists who seemed to work magic the day before.  Dr. Montenegro came in to the hospital on a night that she wasn’t on call to try and help our sweet Juli.  She was able to set the ventilator to improve Juliana’s oxygenation, but advised that the settings would eventually take their toll on the ability of our sweet girl’s heart function.  The doctors believe that Juliana had some kind of rare lung disease that they couldn’t explain. 

One of our favorite nurses, Peggy, came in for day shift. She asked if we’d like a private room to spend time with our tiny love.  I was able to hold Juli for over an hour before the transfer to our new room.  Peggy arranged for me to sit with her (in a wheelchair) for the move.  Before we left, I saw Juli’s heart rate and blood pressure start to drop on the monitor & told Anthony I thought our time was very short.  He was able to hold her for a few minutes when we reached the new room before Dr. Dewitt came to tell us that Juli’s heart had stopped. She slipped away quietly in her daddy’s arms on his 35th birthday, which also happened to be Thanksgiving.  The resident removed her endotracheal tube just after she passed and we finally saw Juliana’s whole face for the first time (she always had tape across her face from the nasal canula & then the ETT). She was such a beautiful little angel.

Juliana lived just 13 days & endured more than many people do in a lifetime. We are so heartbroken by how little time we had to snuggle our sweet girl & give her that human contact we all so desperately need.  We did tell her how much we love her – how much we will always love her, & how much we wanted her in our lives.  I wish I would have sung to her more rather than being embarrassed by my voice. I wish I could have tucked her in my shirt every night, because she loved that so much. I wish we could have just fed her & rocked her & passed on all of the suffering.  Juliana had a broken heart & now all of our hearts are broken.

Thank you for all of the support you’ve shared with us. Thank you for your loving messages, your kind thoughts, and your fervent prayers.  You have been & continue to be a blessing to us.

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Posted by Kim on 2 replies

The next phase.

Juliana and I had our most recent check up at CHOP on Tuesday & the news is good. Jules is weighing in around 6lbs, 4oz & her heart condition is stable. Dr. Rycheck believes that she will be stable enough for us to hold for a short while (an hour or less) after birth before getting her umbilical lines and being transferred to the ICU. I can’t tell you how excited we are for the opportunity to spend a little time with our sweet baby girl. THANK YOU for your prayers - we know God is hearing & answering them!

We are officially full term, so Juliana can come any time now & we are hoping she makes her appearance naturally before my induction date, which will be November 17th. If we do have to be induced, we know that Juliana’s initial surgeon will be Dr. Spray. I’ve read some great things about him, which is certainly a blessing. If she comes early, we won’t know who the surgeon is until after her birth - it depends on who is in town at that time. We know she is in good hands here at CHOP, but it would be disingenuous to tell you that I am not still scared out of my mind. We truly appreciate your continued prayers & the amazing support that you’ve provided.

Other good news: We have successfully relocated our family for delivery. Rolly and Margie have blessed us beyond measure by allowing us to stay with them for the next month or so. Gavin is finally getting adjusted, sleeping better, and enjoying time with his big cousin, Alena. We celebrated his second birthday this week, which I can still barely believe.

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Jimmy-jams, crazy hair, and shades - the perfect look. We miss Jackson and the cats, but they are having a nice time vacationing with family.

I am doing better now that I am finished with work - just sleeping more regular hours has been a huge blessing. As much as I love my job, being surrounded by NICU babies was very difficult for me towards the end, also. I still have some very anxious, sad times, but I know these are normal feelings for a mama grappling with the prospect of open heart surgery for her sweet newborn (in addition to the normal concerns of delivery).

The only less-than-stellar news that I have to share is that my blood pressure is starting to trend upwards again. Please pray that this stays under control & the preeclampsia doesn’t recur. I am really hoping to avoid needing lots of medical interventions (& especially Magnesium Sulfate) for this delivery.

I am also having quite a bit of pain from where I injured my sacrum snowboarding last winter. It is manageable, but concerning for the actual delivery!

Here’s an abbreviated list of things that we’re thankful for:
1. Baby is growing well and her heart condition remains stable.
2. We are full term! : )
3. A successful relocation.
4. The continued prayers & support of our friends and family. We love you all and are truly blessed to have you.

And the current prayer requests:
1. Please pray my blood pressure will remain under control and there will be no recurrence of preeclampsia.
2. We are SO excited about the prospect of having up to an hour with our baby girl prior to all of the medical interventions that she needs. Please pray that we can have these precious moments with her.
3. Safe, natural delivery at CHOP with minimal need for medical intervention
4. Please pray for wisdom and skill for Juli’s healthcare team - the delivery staff, surgical team, and all of the physicians and nurses she will meet along the way. We are praying for a successful surgery and an uncomplicated recovery.
5. Please pray for peace of mind for all of us & that God will help us through this transitional phase when we can’t all be together. It is going to be difficult balancing being at the hospital for Juliana with taking care of our little man.

I will try to post more frequent updates when Juliana arrives & we have more information. Please bear with me, though, I am still overwhelmed nearly every day. Thank you for all of the support and love you’ve showered us with. We are SO grateful. Praying you’ll be blessed abundantly for your kindness.

Posted by Kim on 4 replies

Answered prayers

My parents taught me that hard work, perseverance, and faith in God are the building blocks for a successful life. In the past, when things have been tumultuous, I’ve tried to work harder and trust that God would provide. When we received the news about Juliana, I had to change my strategy at little bit.  The doctors advised that I couldn’t do anything to fix Juliana’s heart (which broke my heart, too), but that I should try to minimize my stress going forward.  This meant that I had to stop picking up extra shifts and trust that God would provide for our family.

A few short weeks later, my dear friend Heather came to me and asked if she and my colleagues in the HLA lab could arrange a fund-raiser to help defray some of the costs associated with Juliana’s birth, surgeries, and recovery time.  It was very humbling to accept her offer because I’ve always wanted to be a strong, fiercely independent woman.  I have never been good at asking for or accepting help.

My sweet friends from HLA (Heather, Jen, Kristin, Diane, Mike, Angela, & Steph) worked tirelessly to arrange a dance in honor of our family, which took place yesterday. I can’t even imagine the volume of work that they put into this day. I do know that they spent 14(!) hours baking the day before the event & that was just a fraction of the time and energy that they each committed.

Friends and family came out, danced, laughed, and provided some much needed emotional support in addition to financial donations. Those that couldn’t make it sent well wishes, prayers, and donations through a GoFundMe site that Heather set up.

I have been struggling to find the words to say "thank you" to our friends and family (& some complete strangers) because no words really suffice. Here is my best attempt:

You have provided us with more love and support throughout this journey than I could have imagined. You have prayed for us. You have helped to bridge a financial gap created by my working fewer hours. You have been a shining light when the world seems strangely dark. I write this with tears streaming down my face because I am overwhelmed with gratitude. You have been the answer to some of our prayers.

I know I can never repay a fraction of the kindness that you’ve showered us with, which is hard for that fiercely independent woman inside me... but it is good for me to be humbled, because it reminds me that we can’t make it alone. Thank you for being there, and for being a reminder that in the darkness, Jesus is still holding onto us every step of the way.

I will never forget what you’ve done for us & I will carry your kindness into the future; this is my promise to pay-it-forward whenever I can. Thank you. I love you.

Posted by Kim on reply

Juli update

Juliana is officially growing like a weed. She is now just about the same size that Gavin was when he was born (& she is three weeks earlier in gestational age). She is super busy in there, but was very bored with the ultrasound tech - we saw her yawn at least three times. : )

Her echocardiogram is stable, but Dr. Rychek mentioned (for what I believe is the first time) that her A/V valve has a small leak (since she has no left ventricle to speak of, this is the one valve between the atria and the right ventricle).  He said that this is normal for kids with HLHS & that he didn’t think it would cause a problem prior to birth / her first surgery, but that if it becomes increasingly leaky, she may need an additional procedure to repair the valve in the future (or they may need to modify the second or third procedure).

My blood pressure has been rock stable this time - so we are praying that continues with no recurrence of pre-eclampsia.  The plan is for me to follow up with my doctors here in the Lehigh Valley next week and then again at the beginning of the week of October 25th. If we are progressing towards labor or my blood pressure starts to rise, we will need to move to Philly at that point. If not, my next appointment at CHOP is November 3rd, so we will probably relocate a day or two before that (& I may try to squeeze in a extra few days of work to preserve as much time for after baby arrives as possible. So, we are flying by the seat of our pants a little bit here.

If we don’t have a baby by 11/17, we will be induced that evening and Juliana will likely arrive on 11/18. We will be able to hold her for a few minutes before she is passed through a literal window to a team of doctors and nurses who will put catheters into her umbilical vein and artery to monitor her and give the Prostaglandins that she needs to keep her circulation going. We should then be able to see her for a few minutes again before she is taken to the Cardiac ICU.

If Juliana gets sick, it will compromise her ability to have her surgery and effectively heal afterwards, so we are going to limit visitors to healthy, immediate family members, and no kids while she is in the hospital. After flu season begins (I believe December 1st), she will only be able to have four designated adult visitors.

I’m not sure if it’s stress or changes in my body, but I have been having really terrible, debilitating headaches and nausea for the past couple of days. Please pray that this subsides so that I can get through the next couple of days at work.

Last night as I was typing this up, Gavin awakened crying (inconsolable for half an hour or so). He has a cold and has been coughing and dry heaving a lot. Please pray that he gets through this cold quickly and that he and Anthony have a much better night.

The fundraiser that my HLA friends organized for Juliana is this coming Sunday. If you are free, come out and have some good clean fun with us. Details at the bottom of this post.

So, we are thankful for:

1.  Juliana is gaining weight well & her condition remains stable
2.  Anthony’s awesome new job, which will hopefully decrease the stress of me being out of work long enough for our family to adjust.
3.  The prayers, love, and support you’ve all showered us with

Prayer requests:
1. No deterioration of Juli’s heart valve
2. No recurrence of pre-eclampsia
3. Continued weight gain & good development for Juliana
4. Strength and peace of mind for Anthony & I.
5. Safe, full term delivery & no other defects / complications

Thank you. We love you. We feel your prayers.
Dance details here

Posted by Kim on reply

Dance for DiSante Family

Here is the flier for the Dance for DiSante Family event that some of Kim’s colleagues have put together.  You guys are the best!

Posted by Anthony on 2 replies

Grace & gratitude

It’s hard to believe that September is here, but the arrival of gorgeous, crisp mornings and pumpkin-spiced everything make it undeniable. For us, this means the third trimester of our pregnancy has officially begun! Here is the latest family update:

Both Juliana and I had good check-ups this week. My labwork was all great, my blood pressure is good, and one of my ER coworkers said my belly has been upgraded to basketball status! Juliana is growing well(she is about 2.5lbs, which is in the 50th percentile!) & we are very happy to report that the right ventricle and AV valve continue to do their jobs well. Our next appointments would be the last week of September, but we bumped them into the first week of October due to my work schedule and the Papal visit.

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We love you, tiny one. Please stay strong!

We have a lot to be thankful for! It still looks like we will be relocating to Philly at the end of October - the doctor advised that it would be appropriate to move between 36 & 37 weeks gestation.  Our family that lives in the city (Rolly, Margie, and Alena) have graciously offered to open their home to us during our extended stay. I can’t begin to express how blessed we are by this huge act of kindness.

Most of you are already probably aware of this, but my dear friends and former coworkers in the HLA lab have arranged a fund-raiser to help support our family through this difficult time.  It’s called Dance for the DiSantes and will be held on October 11th from 1-5pm (please see the link if you are interested in more details). A few years back, some of my colleagues attended one of these dances together & it was a fun, hilarious time. I can’t thank our friends enough for this amazing, thoughtful surprise. Thank you, also, to those who have "liked" and / or "shared" this page - your support means the world to us.

I also want to publicly thank two of my coworkers, Madison & Amanda, who worked to rearrange the schedule so that I can attend this event. Thank you. If I can ever reciprocate, I would love to do so.

And last, but certainly not least, we are thankful for the prayers, thoughts, and kind gestures of all of our family, friends, and coworkers. You guys have been an amazing support during this rather tumultuous time. Thank you for all that you do for our family. We love you.

On a personal note, I hope that you don’t mind me sharing that I have been struggling with a lot of sadness in the past week. We are still really hopeful, but as we approach the time for Juli to arrive, I can’t help but think about all of the things this sweet girl will have to endure. If only I could take her place on that operating table...

And I am struggling at work, too. I love my job, my coworkers are awesome, and I those sweet babies just melt my heart. The problem is that I can only sleep a few hours when I work overnight & by the end of my three days I am physically and emotionally spent. I feel like I need to take a break, but we just can’t afford for me to use any precious vacation time.

Here are the prayer request updates:
1. That Juliana continues to grow well & that the right side of her heart continues to do double duty effectively (plump baby!)
2. Please pray for our hearts, too, & for strength to get through some of these tough days (& nights!)
3. No recurrence of pre-eclampsia

Praise God for taking care of us in this journey & for all of the great blessings mentioned above!

Thank you. We are so very grateful for each and every one of you & the blessing you are in our lives. 

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Posted by Kim on reply

Good news!

This will be brief, because we had an exhausting day, but I wanted to share a quick update.

We had a big ultrasound this morning & another fetal echocardiogram. The results are what we were hoping for: 1. There are no obvious problems with our little love based on the ultrasound besides the cardiac problems we already know about and 2. There were no changes to her heart - no leaky valves and the right side of her heart is doing its job well.

The radiologist frightened me a little bit because he came in and spent a few minutes focusing on the baby’s brain because there is a slight difference in the size of her ventricles.  After some careful scanning, he said there was detectable reason for it (bleeding, etc), so it was most likely due to the baby’s position.  Both ventricles were normal in size, so this is most likely not a cause for any concern.

We will still will not know for certain that there are no other anomalies until after birth, but it is comforting to know that there is nothing else obviously wrong.  Baby is currently 1lbs, 8oz, which is right where she should be for her gestational age. So, praise God for a good report on baby!! : )

My report was pretty good, too. The OB we saw today advised that we are candidates to deliver at CHOP.  My blood pressure was great at my appointment & Juliana is measuring where she should be.

I did ask about the possible recurrence of preeclampsia & the fetal heart specialist advised that there have been successful surgical outcomes for babies weighing over 2kg. If she is smaller than that, she may need an extra procedure involving catheterization to keep the ductus arteriosus open while she grows strong enough for the first procedure. The bottom line is that the more time she has to grow in utero, the better. Hopefully this is extra information that we won’t need!

We will have to go back to CHOP at 28 weeks, then 32 weeks, and then begin appointments every two weeks.

We just learned today that the doctors would like us to relocate the family to Philly at 36 weeks (late October). They will not induce labor until after 39 weeks, but they want us in town in case labor begins on its own.  This is a struggle for us because I was hoping to work until delivery time comes to maximize my time at home with the baby.

Because I had that sacral injury in February, I am only eligible for ten weeks of FLMA, so I will only be able to take seven weeks after the baby is born before LVHN can post my job. Juliana will be in the hospital 3-4 weeks postpartum, so we she will only be home for a few weeks before I have to go back to work. 

This also means that the vacation and sick time that I’ve saved up will only get us through 2.5 weeks in the postpartum period. I believe we can collect disability for a few weeks after that, but this period will be a financial strain on our family.

Lastly, after some consideration, we have decided not to take part in the progesterone study. I will just leave it at that.

We are thankful for an overall good report.
Prayer requests remain mostly the same:
1. No deterioration of Juliana’s heart / no leaky heart valves
2. Full term pregnancy with no other complications
3. Wisdom for the treatment team
4. Plump baby : )
5. Understanding from my job / financial ability to take off needed time to spend with Juliana

Thanks for all of your prayers and support, as always.  I am physically and emotionally exhausted & have been requiring extra down time to process & cope. Please don’t take this need for space as anything other than that - I am grateful for all of you.

Posted by Kim on 6 replies

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