Getting to hold you....

It had been such a long and hard journey through ecmo, and then we had more accessories to work on loosing.

But before he could loose anything,  a new feeding tube had to be placed. For surgery,  they had to remove the first feeding tube that Jace got, and for the whole time he was on a nutrition that was made in a lab and sent straight to his veins.  It was essentially all the vitamins and minerals and calories he would need. It is weird stuff,  because it makes babies have meconium poop again! And when he wasn't paralyzed anymore,  it didn't make him feel less hungry,  so he cried all of the time,  even though he couldn't make any noise. The ventilator goes past the vocal chords, preventing vibration. His silent cry made all of his family and friends cry also.

They had put Jace on some heavy sedation and paralyzed him to stitch up his chest. So while he was still pretty paralyzed,  they placed the feeding tube.  It was so much smoother this time around, since he was paralyzed he couldn't move.  But if you thought the silent cry was sad, this one takes the cake.  As they placed the tube it still took a few tries to get it to work,  and I was greatful he was paralyzed until I started seeing tears. There were tons of tears rolling down his sweet face. His sedation had worn off, and even though he looked asleep,  his mind was awake and he could feel all the pain of having the tube run into his throat. I cried and although I couldn't hold him,  I tried to wrap my arms around him and tell him it was ok. Fortunately, once the paralytic wore off, he didn't have to silently cry for much,  because they started his feeds through the tube, and he seemed to feel much better.  He wasn't constantly hungry anymore.

Then he got to loose the ventilator!  This was the machine that pumped his lungs with air, and had a tube that went down into his throat. They told me that they would have to wean him off of the ventilator,  so they would turn down the number of breaths per minute that the machine gave him,  and also turned down the percentage of oxygen he was getting. He could take his own breaths over the machine then. So, as patiently as I could,  I waited.

And waited.

And waited.

Finally,  one day they said they were going to start cpap trials, where they turn off the machine for an hour,  and let him breath,  then turn it back on for 3 hours and let the machine do the work.  So we did that for 2 whole days, and during this time, they also started giving him breathing treatments where they puffed air very quickly into his lungs. It looks so horrible,  the babies bellies bounce and I was so worried it would be too intense for him, but every time they did a treatment it put him right to sleep!  The reason for this treatment was that Jace's capillaries started to close because they were overly relying on the ventilator.  He was also fighting off an ecoli infection in his lungs,  so there were some secretions they had to help him get out. His X rays started looking much better, his secretions were more clear and fewer.  So then Saturday they decided to up his cpap trials to 2 hours on 2 hours off.

On Sunday morning he was extubated, taken off the ventilator!  He struggled quite a bit,  the day was so stressful.  He was breathing far too quickly,  so they thought he would have to go back on from that. He was breathing by using his stomach muscles,  so he looked like he was straining to breath. His oxygen levels didn't look too good for a while,  then his lactic acid levels shot up... every little thing was one more reason they thought they would have to reintubate him, putting him back on the ventilator, but right at the last minute he would improve just enough to avoid it! They told me to keep him quiet,  limit visitors and all. Well, my parents came, and we also had my husbands family in town,  and they were just coming to say goodbye... so we had 7 people, plus my 2 year old daughter! It was a little nuts, trying to tell everyone we had to keep really quiet, and hoping that he wouldn't have to go back on the vent.

It wasn't until hours after extubation that I finally settled down and felt like he was going to make it. But he did!

His sweet little voice,  it was so weak after all the time on the vent, but it slowly came back.  It was just incredible to hear his weak little "wah". The next two days were quiet victories.  He was able to start pacifier tasting, which was basically using 1 ml of breast milk at a time, and putting little droplets on his pacifier as he sucked. As his  voice got stronger,  it was an indication that he would be able to swallow without choking.  So we were able to try a bottle,  very slowly.  He started by taking 3 ml! For those of you who are like me and have a hard time with the metrics... there are 30 ml in an ounce. So, eating competitions... not quite yet! Meanwhile, the nurses haf been working on weaning his meds, so he could take them orally and not have them on a continuous drip.

This is just an example of the glowing green boxes Jace needed to continuously infuse drugs into his system.  The large pole here is after lots of meds were weaned off, he had times in this journey where he filled two poles completely and had some hanging off of a pole on his bed. The tubes can also hold combinations of drugs,  so he might have 15 boxes for 20 meds.  So needless to say after 2 weeks on ecmo,  weaning off of his meds, some of them highly addictive, was a long labor of love.  Tweaking and watching vitals, tweaking and watching vitals.  So by the time his tube came out,  there were only about 3 meds still on low doses on the pump, everything else was intermittent and some even oral. Then on the 15th,  there was only one med on a low dose on the pump.  They stopped that med and tried him on the oral medicine that replaced the pump med. I had to wait hours before they decided to take the arterial line out!  Once we waited an hour to make sure that he was well clotted, I would be able to hold him. It was one of those hours that dragged on for eternity!  But then he was finally in my arms again, after a month of long waiting!

Coming off ecmo

Jace came into the world on December 2, 2013. He was in the nicu until Friday night,  December 6th. We had him home until Sunday night on the 15th. His first surgery was Thursday, December 19th. Then he was on ecmo. I am going to show some pictures of Jace that might be a little disturbing,  his chest is open a bit and he has lots of tubes,  bruises and swelling,  so use discretion before you look.

The surgeon told us that they hoped he would come off 3-5 days later, and then we would be in the hospital for 2-4 weeks. We couldn't imagine being in the hospital that long.  We waited until the 3rd day, and I made sure I was up as soon as the doctors rounded to see if he was going to come off ecmo. To me, it seemed like a lot of guess work, and they said maybe tomorrow.  The next day was the 4th day, and again they wanted to wait.  I was getting so antsy, his heart was beating,  I could see it in his open chest! He also had an arterial line that had a sensor for his blood pressure, and the waves in that line showed how his heart was beating.

Let me explain a little more about ecmo, because this was something I didn't understand before Jace was on it. So ecmo is a machine that pumps blood through the body bypassing the heart. When the ecmo circuit is running, it sucks a certain amount of blood out of the heart and keeps it pumping through the body. Jace's heart wasn't doing any work, but it was free to beat and contract. When his heart was beating and contracting more strongly, they could turn down the circuit as much as they would like,  and then his heart would get the amount of blood from however much they turned it down to.  So if the ecmo was running 100%, his heart was getting no blood, but if it was running 50%, then his heart was pumping half of his blood,  and the other half was being pumped by the machine.

So on the 5th day,  the doctors rounded,  the surgeon came in and said lets turn it down to 50 % and see how he does. They scheduled for the OR team to come to Jace's room at 11 to do the surgery to actually take the tubes out and stitch up his veins and arteries where the machine went in. After ecmo was turned down all morning,  the surgeon came back in about 9:45, and said let's see how he does with the machine off. It was incredible,  for an hour before surgery my little man was pumping all the blood with his own heart!  I was so amused, although it was actually sad, that most people totally take for granted that their babies hearts work so well,  and I was so proud of my baby for being able to pump his own blood!  Look ma, no ecmo!

My heart was so happy.  If anyone else memorized Psalm 23 in the king James version, it says

Psalms 23:4 KJV

Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me.

The valley of the shadow of death is what ecmo feels like.  My Jace constantly layed there lifeless,  with an occasional wiggle.  He was in a medically induced coma. His heart didn't work on its own.  Seriously, a power outage, a visitor tripping, anything could have gone a little wrong and my baby would have died. Ecmo is walking through the valley of the shadow of death.

The OR team and the surgeon started suiting up, they were able to do the surgery in his room.  I went with my brother and pastor to a small waiting area where we joyously waited for the procedure to be over. A nurse came out after an hour to say he was all done,  they were just cleaning up.  Then we waited for a really long time. Our pastor, Mark, had gone to get something and he came back looking really sad. He wasn't saying too much, until my brother said he was going to go check on how things were going.  Mark stopped my brother and said that he had to go back on ecmo. He peeked around the corner to where Jace's room was, and saw a nurse giving Jace compressions. Shortly after Mark told us this,  a nurse came back out and told us that they had gotten everything done, and Jace's heart started to slow way down.  They tried putting a pacemaker on him (the leads were already in, which is common procedure for a baby having open heart surgery) but it didn't work,  so they had to resuscitate him through CPR compressions.

We were really sad that he wasn't able to come off, but it happened when everything was ready for him, there was plenty of extra blood,  a new ecmo machine was prepped just for Jace, the surgeon was still there taking notes on the computer,  and a charge nurse was there to give the compressions. If his heart had declined a few hours later,  he would have been in much more trouble.

The other problem Jace had was his left leg was  slowly turning more and more purple. We noticed it in his toes the day he came back from surgery, and it went from dusky to looking more and more purple all the way up his leg. He also got these huge blackish bruises all around his groin area, and some on his knee, like a strange radius around the place where he had an arterial line. They kept saying it was ok, because he had good capillary refill, which is when you push on your skin and it turns white,  and then the amount of time the color comes back is your capillary refill. It should be less than 3 seconds.  They were able to find a pulse with the Doppler, up until that night after he had to go back on ecmo.  So the surgeon was there, and after my husband probed him further,  he finally decided to move the line. It took quite a long time afterwards for the color to come back to his leg, I think a couple of days.

I went home that night so we could celebrate Christmas as a family. We woke up,  opened presents with Eliana,  ate some cinnamon rolls, and then came back to the hospital all together so we could have a family picture for Jace's first Christmas. I still have those on a different camera,  I will have to add them later! We took a tuxedo bib a friend gave him and covered up his chest and wires, then we stood on the stools next to his bed all dressed up! Here's one with Santa

The two surgeons that did his surgery went on vacation,  and the surgeon that was on for the week was a man everyone loves. He does heart surgery for pediatrics all the way up to the elderly. He did bypass surgery on both my grandpas, and they both were very excited he was  taking care of Jace. "He's the best" was all anyone would say about him!  He is an expert on ecmo,  and so he would come in anytime he could,  look Jace over, and say "hmmm, uh huh, mmm..... ok." Then he was gone. For a parent of a newborn on ecmo,  I kinda needed more than that!  So I asked questions to the other doctors on the floor, and they would just say it would be a few days. So I stayed constantly,  waiting for the surgeon,  and some days it was "looks good" and I would ask if he was going to try to take him off, and he would just say in a few days. I gave up trying to catch the surgeon,  and just came and left to go see my husband and daughter at night.

The day before new years eve I was coming into the hospital at 10:00 or so at night. I had barely made it into the hospital,  and saw the surgeon leaving,  along with the doctor who had been on call in the picu. I said hi,  not expecting any news, and the surgeon looked like he was just going to walk by. I figured he would just think I was a familiar face,  I had only seen him for about 5 times for a minute or two.  Right after I passed by I heard "I think we'll take him off tomorrow. " I turned around,  hoping that he was talking to me, and he made eye contact just enough to nod before he started walking away again.  I was a little dumbfounded,  and I said "Jace?  You mean taking him completely off or just weaning him?" (They had said that they would have a longer weaning period, so they would have gradually turned down the ecmo machine. ) "Well, yes, that's the goal," was all the surgeon said before leaving again.

I was a little confused about everything, but so excited that maybe tomorrow was the day!  The nurses hadn't heard anything from the surgeon about taking him off, neither had the doctors,  so they suddenly started working on things to prepare for the next day!  I couldn't believe how strange the communication had been in this matter,  so I was amazed that I was able to get things rolling just because I ran into the surgeon!  It was another thing I had to think God was working in the details for Jace.

The next day was long, and I tried to be calm, but every hour slinked by so slowly.  The surgeon didn't come in, but had an assistant that checked Jace out and communicated back to him, and then the assistant was able to give directions to the nurses for weaning the ecmo machine.  I had no idea how it was going to work,  I figured they would turn off the circuit for a while before, so at the rate they were going I thought it would be at night before they would take him off.  Then at about 1, the assistant got on the phone and said ok, here we go! I asked when, he said now, I said,  now? The OR team hadn't even been called,  how are you going to do it now?  Aren't you going to turn off the circuit?  The assistant said,  well yeah, so I would say within the hour. It was so crazy to me how differently the surgeons were.  When this surgeon snapped his fingers,  everything happened.  When the other surgeon (who was much more impatient) said five times lets do this, he still had to go through and schedule the procedure for a certain time and wait his turn.

They kicked me out,  and finally, after almost 2 weeks,  Jace came off ecmo successfully on New Years Eve! His chest still had to be open for a few days so that swelling wouldn't stress his heart. He was finally able to wake up from his medically induced coma!  Look at those beautiful eyes!

We praised God,  and that night I found this beautiful verse on a pintrest board with a beautiful picture.


Joel 2:25-26 ESV

I will restore to you the years that the swarming locust has eaten, the hopper, the destroyer, and the cutter, my great army, which I sent among you.   “You shall eat in plenty and be satisfied, and praise the name of the Lord your God, who has dealt wondrously with you. And my people shall never again be put to shame.

I cried at the goodness of our God,  despite all of these struggles, He still reached out to me just to give me the comfort that we would see better days!

Here is one more picture of Jace with his chest finally closed up a few days later.

Jace's first operation

I had been staying at the hospital with Jace,  and let me tell you, the boy loves to eat! Once he had his IV placed and was less dehydrated,  he wanted to eat. The problem was the doctors didn't want him to overwork his heart by eating with a bottle.  So he had to get a feeding tube that would go through his nose, past his stomach and into his intestines.  It's a crazy process getting it placed, they take a flexible tube with a wire in it, and feed it down his nose, and I guess they can tell a little bit by how it feels if it is in the right place.  Before they can use it they check it by popping air in it, and then getting an X ray to check placement. They tried many times,  but in two separate sessions, and it just kept curling up in his stomach.  Finally in the morning they started feeding him through it even though it may not have been in his intestines.

This was how he ate from Monday morning until Wednesday night.  These feeds stopped at midnight, and then he woke me up about every hour because he was so hungry. I held him so much the few days I had with him leading up to surgery, and I stayed up until about 11pm holding him. Then when he woke up at around 4 or 5 in the morning that Thursday morning,  I just stayed up so I could hold him.

Around 7 his visitors started rolling in.  Great grandparents, grandparents, his pediatrician, our pastor, and a whole lot of friends came to pray right before he went in for surgery. His pediatrician got down on his knees and lead the prayer. I was holding Jace, and sitting in this chair completely surrounded by people who love our family.  We prayed until the surgeon came to talk with us. It was so beautiful, there wasn't a dry eye in the room.

Jonathan and I talked with one of the two pediatric cardiologist surgeons that would be working together on Jace's heart.  He re explained the process of putting a shunt in to restrict blood flow to the lungs,  sewing up his pulmonary artery,  and then they also removed the septum wall in Jace's heart between the two atrium.

The understanding I had was that they do these things all the time, and they weren't in the least bit concerned about complications. I wish I had asked the hard questions that float into every parents minds when something so scary happens... is my baby going to make it? What are the risk factors? What kind of complications are possible?

Hope is a funny thing. When you have hope,  it seems ridiculous to ask the hard questions.  I know a lot of Christians who say the things like praying in faith for rain means you carry your umbrella,  prepared for a miracle. I know God heals, I have seen it first hand. So for me, I truly believe that if God wanted to heal Jace, it would have happened. I don't know why, but I know it is for a purpose that we have to walk through this.  I was trying to have faith that he would be healed,  but since I really wasn't getting the sense that God was definitely going to heal Jace, I tried to prepare by asking all the questions.  I don't think it ever crossed my mind that it was possible he might not survive the surgery.  Obviously I knew that it was a risk,  but it always is in a surgery and it usually turns out fine. I figured that if he was in my care I might miss something and he might die, but I guess I thought (and the surgeons convinced me) that these people could handle his situation,  no problem.  So in my mind we were just waiting for a long hard healing process.

Our nurse suited up, had us kiss Jace, and let us walk him to the operating room for one more kiss. Then we cried before coming back up to join our prayer team in the lobby of the picu.

Every hour or two there was a staff member of the hospital that would come update us on the surgery.  At first it was to tell us he was asleep, he was in surgery and vitals were good. Then after he went on bypass we got less info, just "he's still in surgery."

At around 2:00, his surgeon came out. Jonathan and I were called back to a conference room.

We sat down with him and I was nervous about bad news, but hoped that maybe his downcast look was because he was tired and wearing a mask, so you couldn't really read his expression too well.

He told us that the surgery really went well,  but he wanted to be honest with us and talk with us personally. When they tried taking Jace off the bypass machine,  his heart just stopped. They couldn't get it going again.  They tried to do a few things to help, but his heart just wouldn't sustain him. He explained that he was going to come back into the room on something called an ecmo machine, which is basically a portable heart lung machine,  or a bypass machine. He was just on it for the heart function, his lungs were still doing the work of oxygenating the blood,  even though they needed a ventilator to actually work the diaphragm.

My husband had the presence of mind to ask questions about this,  but my mind started raging after "we couldn't get his heart to start." While I was listening,  I couldn't speak. Not that I was afraid to shed tears in public,  I was mostly afraid of the animalistic fire growing in my chest. As soon as the surgeon left, I was balling, crying out without enough breath, hyperventilating,  pacing,  falling to my knees, having a hard time breathing because a man just told me my 2 week old baby's heart wouldn't start. Jonathan comforted me as I yelled at the window that this wasn't right,  we can't loose him. I finally settled in sitting on the floor with a pillar behind me, just trying to catch my breath.

Jonathan comforted me again,  and started explaining that he didn't think we had to worry about losing him yet. They wanted to let his heart rest for a few days and see if they could get him to start up again in 3-5 days time. Even if it didn't,  they would try him again in a few more days.  The statistics were bad, he had a 50/50 chance if you looked at all congenital heart newborns on ecmo. But, he had a much stronger heart and a much more solid start to life than most of the babies in those statistics.

I wanted to be alone.  I wanted to hide. But I knew I had to go out of the conference room at some point.  After a good long time in that room,  we went out to the waiting room where we had so many loved ones who all wanted to give hugs and comfort us. I just wanted to find a quiet place to drink some tea and be alone.  I went back to the room,  and was tucked behind the stroller sitting on a couch. I was trying to quietly cry so I didn't draw attention to myself,  and suddenly the OR team brought Jace into the room. There were probably at least 10 people scurrying around trying to plug everything in, hooking up all sorts of wires, adjusting his bed, lifting it up super high.  I just got a peek at my baby boy,  just his little head and this peace came over me for a second.  It was so good to see him, and the reality that he was barely alive didn't phase me, because he was alive right then and I could see him.

A nurse said that I needed to leave,  so I was escorted back to the waiting room. I tried to tell her I needed to be alone,  but the words just wouldn't come out. She assumed that it was because I saw him that I needed some sugar and told everyone to get me something to drink.

When a baby comes back from heart surgery,  their bodies are almost unrecognizable.  They swell up like crazy, have tons of wires, stickers, tubes and ports. Even in the best of cases, some babies come back with their chests still open. The nurses and doctors do their best to prepare you, and we were prepared for all of this.  But we weren't prepared for ecmo, which means that he came back open chest and with huge tubes filled with blood going into his chest and out,  down and over to a machine. There was this complex circuit of tubes, not just one continuous loop. Every hour a nurse would take a flashlight and check the circuit for clots.

Jace had 2 nurses all of the time while he was on ecmo. He had an ecmo nurse that just took care of the ecmo machine and Jace's blood, including adding blood for volume, and then a nurse specifically devoted to his needs, a baby nurse. He was not super stable for the first night after surgery. The lights stayed on, and the nurses worked continuously,  turning his body, adjusting medications, checking blood samples for the gasses in them, tweaking everything until his vitals looked good.

Jace, my baby born 2 weeks prior, was now on life support.

Jace stops eating

We had so much fun having Jace home for 9 days. I keep thinking about every little sound he made, every little stretch, every little face. How he moved his head to snuggle in right before he fell asleep.  I have a sweet video of Eliana sharing her toys with Jace that I have watched a million times now!

When you are sent home with a healthy baby,  you are told to basically make sure they eat, pee, and poop. Sleep varies, they might get colicky and scream 24/7, they might stain every inch of your carpet and couch in spit up, but as long as they pee and poop, they are pretty much good at life. Even in the most ideal situation when the baby is in the carseat and you are bringing them in the door, you suddenly realize how little and fragile they are.

With a heart baby, if you're lucky like us and get the hope of holding and feeding and taking that baby home, you suddenly realize you where just watching "The Birds" by Hitchcock,  and now you're moving up to "Jaws"... This beast actually could kill.

"Here's some equipment,  weigh him every day around the same time in a dry diaper. If he gains or looses weight too quickly,  call us right away.  Here's a pulsox monitor.  Take his heart rate and pulse ox levels every day, or if you think anything is wrong keep his pulsox on him for a while and watch his trends.  If it changes too much, call us right away.  If he starts to look pale, dusky or blue, call us. If he does strange breathing, call us. If he does anything kind of unusual, call us. Here's a binder, keep track of everything and here's a phone number you will need to call twice a week before 10 am Monday and Thursday. Leave a message with all his daily weights, pulses, and pulsox readings. If there is a problem with his numbers, we will call you. Schedule an appointment with his cardiologist in a week from discharge. Anyways, I am so happy you guys get to go home and have some normal baby time! Any questions? "  I know, I really am not exaggerating!  I actually think I left out some details.

All was going pretty well, he had always had a funny rapid breathing he would do periodically, but it was at a minimum. So he breastfed, and he started having a hard time exclusively breastfeeding,  so I would pump some and give a bottle here or there. He would fall asleep, milk would get everywhere and then he would wake up hungry. We had a period where he refused to breastfeed at all, and bottle fed while I called the lactation consultant. We really got into a groove with breastfeeding and then he would seem satisfied.

This was probably just about Friday when that happened. Then Saturday night I started feeling engorged, and he was just not filling his diapers quite as much. That night he went 6 hours without wanting to eat, and then I had to work to get him interested. I had to pump a lot, and decided to give him bottles just to see how much he was getting. I found out he was only drinking a half ounce or 1 ounce every 4-6 hours.

We called our amazing God sent doctor (who had given us his cell phone number! ) and came to our house (I know!) On a Sunday night.  By then Jace was also doing much more rapid breathing. He listened to Jace and timed his breathing. After calling the cardiologist, he told us Jace had to go to the hospital that night. We thought maybe they would just give fluids, maybe a medicine could fix it... but in my gut I knew that it could be bad. Our doctor stayed at our house and prayed for us and Jace, and then played with our daughter while we got some things together (did I mention how amazing our doctor is? Like I said, total God-send!)

When we got to the hospital,  Jace was already dehydrated a bit, and wouldn't eat at  all anymore. They had to try 5 times before getting an IV placed because his tiny veins were too dehydrated.  He was miserable. After an X ray and an echo, we were told that his heart was cycling and recycling blood to his lungs. It was causing him to breath so rapidly and could harm his lungs if he they didn't fix it. His heart was enlarged too, because it had to work extra to get the blood to his body because so much was going to the lungs. This was also causing some leaking in his tricuspid valve. He was going to have to have open heart surgery in a few days.

I was crushed,  but so greatful to have had him home. We had so many little and big signs that God was watching, loving and caring for us and our son. From our doctor to being assigned to a resident we know, having a friends stop by at very timely moments, having Eliana cared fo and covered for child care... it would be a much, much longer post if I explained all the details.

We prayed and prayed for healing,  but we know that if God says no to the hundreds of people praying for healing for Jace, then he is going to use all of this in a way far greater than a miracle of that magnitude would have.

Jace's birth story

Here's Eliana,  my sweet and amazing daughter on her 2nd birthday!  My dad is holding the cake (he had a Christmas concert to play in, which is why he looks super snazzy!) Behind him you can see me with my big belly. This was December 1st, and I had a lot of reason to believe that Jace would have been born already!

I was going into LONG doctors appointments bimonthly throughout the entire pregnancy so they could keep an eye on Jace's development and heart function.  The sonographers always measured the little man to be on the big side, and since we didn't know exactly when I conceived,  it was quite possible that he was further along than we thought.  His due date was November 29, black Friday. He measured 2 to 3 weeks bigger consistently since I was 4 months pregnant.  I started having false labor at about 37 weeks. Since he measured so big, the maternal fetal doctors said I should do a csection unless I went early. I so badly wanted a vbac that I waited, hoping eventually to go into labor.  At 38 weeks my doctor said I should do a csection for sure if I hadn't had him by 40 weeks. So, I had scheduled a csection for black Friday, which is apparently a holiday for the cardiologists,  because Wednesday before Thanksgiving Day the OB scheduler called to tell me that they rescheduled for Monday. At this point, contractions kept getting worse,  but never to the point where I could go to the hospital. I just waited and I think I may have had him naturally on Monday anyways because contractions got so bad.... but I made it to the csection table, and wanted it all over with at that point!

Jace was born by csection December 2nd, 9lbs 8oz! I was able to see him for just a second,  they assessed him and cleaned him, brought him back so I could touch him, and then whisked him off to nicu, where he was the biggest kid on the block! I went through recovery and then they wheeled me by nicu and I got to hold Jace for the first time.

He was beautiful!  Lots of hair, warm, and looked as healthy as could be! Now, I am so into natural parenting,  I do cloth diapers and breastfed my daughter exclusively for 18 months, and only stopped because it started to hurt when I was pregnant!  My heart sunk a little bit that he already had a passifier in his mouth when I got to hold him (if you breastfeed it can harm the baby's latch to get a passifier too early), but I knew even if I was fortunate enough to breastfeed at all, it wouldn't happen for a few days anyway,  and even then, no guarantees. 

I was wheeled to my room, 2 floors and in a separate wing away from my baby. My husband stayed with Jace and my daughter was with my mom and dad who had to split their last vacation days of the year to watch Eliana while we were in the hospital for the week. Then my mom had rolling layoffs the following 2 weeks. I don't know what we would have done without my parents in this time. I was alone in my hospital room, and for the first little bit I was greatful! I could sleep, and I had the things I needed in arms reach. I skyped with my husband and got to see my beautiful boy. But as time progressed, it was so hard to go through the healing process of a csection with no husband in the room. I wanted him with Jace, but I wanted him with me too! I couldn't go to the bathroom without help, I couldn't pump without help, I had to call the nurses for every little thing. They came much later than I needed them usually because the mom baby ward was on overload. I didn't have a baby in the room, and was tucked away in the back, I just wasn't high priority. I definitely was healing much better than I did with my first csection,  but I also overdid it a lot. Once they gave me the ok, I did everything I could without the nurses. (Bathroom, washing my pump, even took a shower!  That was probably dangerous on my own, if I had fainted, all alone in my distant room it would have been bad.) 

Jace, on the other hand, was doing really well. They did sonograms, echocardiograms, and X rays. My husband got to talk over the plan and our hopes of breastfeeding to see if we could go home and what we would have to do once we were at home with monitoring his pulsox. 

 Daddy holding Jace in the NICU

 One of many kisses from Mommy

Eliana had to wear a mask when she came to see Jace, so Grandpa helped by wearing one too! 

So far the cardiologists were really confident that Jace would be able to go home, but wanted to confirm that his pvc had closed before making the final decision.  (This is a valve everyone has in the womb but closes a few days after birth. When it closes it can change the pressures in your heart, which can cause bad things to happen if you're born with half a heart.)

His valve closed,  and I got him breastfeeding,  and to me, all was right in the world!  He had a good 5 days total in the nicu and got to go home. At the time I was thrilled,  but since this was what we prepared for, I was taking it a little bit for granted that he could be a normal baby for a few months before we had to deal with the heart issue. 

Eliana loves her little brother so much!  Here's a big kiss! 

We had Jace home for an amazing 9 days! We didn't get nearly enough pictures,  as I came to find out.  Little did I know that Jace would not make it 4-6 months surgery free. I wish I had more time with him in ignorant bliss of what having a heart baby really means.

Jace's story in the womb

"Well, I will have the doctor come in and take a look. I just take the pictures."  If you are 12 weeks pregnant and getting a test done and the sonographer says this, you know something is probably wrong. This is how Jace's heart story began.

When I had my first daughter, Eliana, we were told that she would have down syndrome.  Absolutely.  The doctors felt so strongly that the genetic testing was a kind of formality so we would believe their diagnosis. We didn't have any testing done while I was pregnant because we believe life is sacred and it wasn't going to change our minds about how much we would love her. So we both nodded, but were excited to celebrate and welcome her into the world when "Dr. Downer" (names have been changed to protect the guilty) came in to tell us how horrible it is to have a child with down syndrome, and what challenges we would have with her from now through her adulthood.  After hours with Dr. Downer,  many other geneticists, physical therapists, residents and nurses in training came to see the down syndrome baby and talk with the parents. Our hospital experience was so horrible we couldn't wait to get out of there. We had a wonderful,  yet sober, first few weeks with our sweet girl while we waited for tests to come back.

The results?  Negative.  No down syndrome.  She has a duplication of chromosome 7, and come to find out so does my amazing husband!  We call it super 7 now, because Eliana is so stinking smart! She has had her own challenges with needing surgeries and going to the hospital,  and each of those times where very difficult as a parent to go through. I tell her story to some friends and it is hard for them to imagine how difficult it was for us as Eliana had surgery on her fingers and tonsils,  and then some rough ER visits. I don't want to downplay that these were difficult, and it is always hard to watch your child suffer, and surgeries on 6 month olds are scary, and surgeries on almost 2 year olds are so hard as you watch them express their suffering even more. The tears I shed when she was admitted for a scary vertigo attack, and then when we were discharged and what does my little girl do first thing the next day? Stick a hanger down her throat!  These were SO hard. These were huge steps in preparing us as parents, and preparing my daughter in empathy for what was ahead for our family.

When I found out I was pregnant with Jace, I was mostly concerned with our bonkers genetics tricking the doctors again,  because I never wanted to encounter Dr. Downer and his entourage again! My midwife suggested a downs screen that is very accurate to just see if we could avoid the same birth situation. 

I went in at 12 weeks,  and listened to them talk about the test, how they measure the back of the baby's neck and do a blood test to see the baby's chances of having downs. I layed on the sonogram table and looked at the screen. My stomach dropped as  I saw the sonographer's face and demeanor go from cheerful and chatty to downcast and quiet. I had seen the pictures of what they were looking for. I could tell my baby was going to fail the test. The measurement on the back of the neck looked big even to my untrained eye. That was when I asked timidly "does it look big to you?"

The doctor came and said that he was going to cancel the test. The baby had a huge cyst on the back of the neck that was probably not related to down syndrome necessarily, but it could be another problem.  Suddenly I was just wishing for the experience of having a live baby, because my odds of miscarriage were greatly increased. I have had a miscarriage before at 13 weeks, and was so scared it might happen again.

Maternal fetal had me back every 2 weeks to monitor my baby, and we praised God as the cyst shrank. But the same day we found out our baby was a boy, we also discovered that he had something wrong with his heart. I just thought for sure it wasn't so bad, it couldn't be.  We had the wrong diagnosis for my daughter, surely they were wrong.  As we prayed and found out more, that our son had a form of hypoplastic left heart syndrome, I had to think through a lot. Am I in denial,  or do I just really believe that God will heal him?  Every echocardiogram showed new challenges, and I didn't know if I could try for a vbac, or if I would have to do another csection, if I could or couldn't hold him, feed him, if they would wisk him into open heart surgery... The list of unknowns kept getting bigger and bigger.  Then I knew from my first birthing experience that there are always variables that you don't even know about in order to add them to your list of unknowns, even with a healthy baby.

We decided to give him the name Jace Levin after much research in names and their meanings. We wanted a name that was original with an appropriate meaning,  and I think we did well! (Except apparently Jace is fairly popular now from duck dynasty...) Jace is a form of Jason and means healer in Greek,  and Levin is a Hebrew name that means heart.  Jace Levin, healer of the heart. We wanted so badly for God to miraculously heal Jace's heart,  but (spoiler alert) it looks like God wants us to walk through this one.

Jace's heart

Ok, so if you are like me, you have no idea why this looks crazy! I have said multiple times that if I went back to middle school now I could ace that heart test! So, the two big tubes going into what is labled RV (right ventricle) are his pulminary artery and aorta, and they shouldn't be going straight, but they should twist aroud each other. And instead of going into one ventricle,  they should go into a right and left ventricle. In this picture you can see the left ventricle is small and open to the right, and there are 3 chambers instead of 4. What this means is that Jace was born with his heart mixing the oxygenated blood with the non-oxygenated blood. All through his body his blood is mixed, so he can look a little more blue at times. To fix this, his cardiologists were hoping that he would need just 2 surgeries, which is fortunate,  most hypoplastic left heart syndrome kids need to have 3. They thought his first surgery would be at 6 months, then his last would be at 2-3 years old, and they would work on getting his heart to function by pumping blood to the body, and redirecting the blood to basically make a pit stop by the lungs to pick up oxygen on its way back to the heart. The biggest issue they anticipated for Jace was how well his heart would be able to pump blood to his lungs appropriately without damaging them by getting too much blood flow to his lungs. This is just the story from the womb, so this was all we knew at this point.

This is a blog about a strong little boy, who still has a long road ahead of him. My prayer is that through his story something would be healed in your heart, that you might be able to see miracles through adversity.  That when you go through a deep dark scary valley,  you could look beyond yourself and see that God uses everything we go through for HIS purpose,  and we can still trust our amazingly good God.