Nicholas Updates - 2015

December 31, 2015 posted 10:29am:

We are a hospital room divided. Daddy switched his alliance and is cheering with Nicholas who was born a Michigan State Spartans fan & Mommy is an Alabama Football fan. Good Luck to both teams, Happy Cotton Bowl Day! (Roll Tide)

Nicholas did well overnight, his medical team did an awesome job of balancing all of his meds and fluids to keep him comfortable! He is still on sedation medications but overall is doing very well. This morning, Nicholas had an echo done, got his catheter taken out, got his arterial line taken out (mostly because it wasn't working), got an albuterol breathing treatment to see if that helps his respiration, and 2 of the 3 chest tubes will be removed soon. He has slowly started feeds through his NG tube and was put on medication for his blood pressure.

He "looks" good, doesn't appear overly swollen. His weight was 6.7 kg this morning, pre-op he was at 6.6 kg and post op he was at 6.9 kg. During rounds this morning we heard that he had a strong Glenn. Basically he is being our little rock star, albeit a cranky one but who can blame him!

Looking ahead - continuing to wean him off of oxygen and eventually off pain and sedation medications.

Thank you for your continued prayers and support! More status updates to come.

December 30, 2015 posted 8:43pm:

We ran into issues after we took out the breathing tube. Nicholas was not a happy camper and nothing that was tried to calm him worked. His crying cause his blood pressures to rise along with his heart rate while decreasing his oxygen saturation.

He probably had sedation medication doses enough for the whole floor and the stubbornness in him wouldn't let any of it work. In the end, they made some exceptions and let me hold him. He finally calmed down after being held and rocked by his momma 💕

They are keeping him pretty sedated to keep him comfortable and stabilized. We will probably discuss weaning him off the meds when he is ready. His upper respiratory still sounds a little junky and will still need to address that as well- he's currently on oxygen.

Might be a long night...hoping he'll hit his peak and then decided to turn things around like he has in the past.

December 30, 2015 posted 3:42pm:

We are back in his room on the intensive care unit floor. The surgery went well and he is doing very well. We are waiting for him to wake up a little more from sedation and they will take out his breathing tube.

The second half of the surgery was uneventful as well and Nicholas was put on bypass for only 17 minutes.

Just to recap- Nicholas had the bilateral bidirectional Glenn done today. His heterotaxy and his isomerism gave him 2 superior vena cavas and both were connected into the pulmonary artery which brings the blood to the lungs. This stage is also considered the half Fontan where the connections on the upper half are addressed and later in the third stage, the lower half.

After Nicholas is extubated, they will monitor how he tolerates and adjusts to his new circulation.

Video of him first starting to show signs of waking up here

December 30, 2015 posted 7:17am:
We had a great uneventful night! Enjoying every minute with him until we are transported down to the operation floor where we will have to say our goodbyes and be guided to the waiting area. Nicholas is ready and in a great mood!

December 29, 2015 posted 12:47pm:

Guess where we are staying tonight? Yep, they are keeping him overnight. He is a really difficult IV start and since they finally got a good line in (of course in his head again) after several failed attempts, the general consensus was to keep it in place.

Nicholas came out of anesthesia upset but nothing near as bad as after his heart cath. He is awake now and we even got a smile out of him!

December 29, 2015 posted 7:54am:

On our way in to the hospital for CT scan, pre-op tests, and consultation with our surgeon. Going to be a long morning but the plan is to go home afterwards for the night and come back in tomorrow morning at 6:30am for surgery.

December 24, 2015 posted 9:44pm:

We are so very thankful to have Nicholas home this Christmas. He is the best gift we could have received this year!

Thank you all for your continued prayers for Nicholas and our family. We appreciate your support more than we could ever express in words.

From our family to yours, we want to wish all of you a very Merry Christmas!
The Viner Family

December 23, 2015 posted 4:45pm:

Wednesday Weigh In:
Nicholas is 14lbs 3oz today! We finally broke 14!

We were hoping to be closer to 15 pounds by now but are so pleased with his progress considering all the feeding challenges. Can you imagine if he didn't have any issues! 😆

The dates are confirmed! Additional scans, pre-op labs, and final consultation with our surgeon will be next Tuesday the 29th. The Glenn, open heart surgery, will be on Wednesday the 30th.

We will go in at 6:30am Wednesday morning and the actual surgery should start around 8:30am.

We feel so fortunate and blessed that we will all be together and spending Nicholas' first Christmas at home!

December 17, 2015 posted 12:21pm:

Update on Nicholas: Stats overnight were great! Getting all the paperwork and discharge things in order, then we're breaking outta here and heading home!

December 16, 2015 posted 8:42am:

Update on Nicholas: Been a long night- finally resting now. Oxygen is at 2 liters & 35%, it's an improvement from our first night which he was using at 80% but it's still much slower to wean him that expected. Saturations have been steady in the low 70's with oxygen support but doesn't seem likely that he can hold it by himself yet. This is the major factor in whether or not we can be discharged.

The blood transfusion didn't give him the rebound boost I was hoping for. No significant changes were made from the blood or the diuretics.

Overnight we had an additional chest x-ray and screening panel done to see if he picked up any viruses because he sounded "wet" and overall seemed to not be feeling well. They both came back good so although I didn't want him to have anything it would have maybe explained some of the things going on.

Fluid levels are being tweaked: back and forth with giving more fluids and giving diuretics. Finding the delicate balance is always a challenge.

Formula was changed at the late afternoon feeding yesterday and he has been spitting up since. Waiting to see if we are going to do slow continuous feeds on a pump or go back to his old formula. We gavaged his feeding over 2 hours and he still spit up.

Waiting for rounds this morning to see what the plan and goals are going to be for the day.

Tentative surgery date thought to be the 29th but he may be telling us otherwise...

December 15, 2015 posted 1:20pm:

Update on Nicholas: Looks like we will have to be here another day, we will try to get released again tomorrow. Jimmy stayed with Nicholas overnight and he was desating a lot - oxygen levels in the 60's. He is currently on blended oxygen about 50% and we are trying to wean him back from it but he is having a hard time staying above 65 on his own. This will definitely delay discharge if we can't figure out a way to get his respiration and saturation to a manageable level.

He has had a few inconsolable crying fits. During those times his stats obviously skyrocket but he's slow to recover to his baseline and his oxygen dips into the 40's and 50's. He had an episode where he looked like he was struggling to breathe which was opposite to the rapid breathing I walked into early this morning.

IV fluids were given overnight along with his normal feeds (all gavage through his feeding tube) and this morning they stopped the fluids and are having to give him diuretics to take off the fluids which are now in excess.

They have started giving him blood. His labs indicated a significant drop in blood count from pre to post procedure which may have also played a role into his sustained high heart rate yesterday.

He has a bit of a cough and is noticeably uncomfortable for him. Understandable so, since the breathing tube yesterday probably made for a very sore throat.

The baby that came out of the heart cath yesterday had the shell of our baby but he wasn't really there... Nicholas has intermittently woken up today and looked at me, really looked. It's a promising sign to see him come back a bit.

Hoping some of the change ups made today help him get more comfortable and stable so we can get leave the hospital for a couple of days before having to come back.

December 14, 2015 posted 5:43pm:

Poor guy has been put through the wringer today...

FINALLY after all the pokes, bumps, and bruises he is taking a much needed rest. Fever is ticking down and his color is much improved.

Labs have been sent to check his levels and the ones that came back are good.

Fever most likely was a response to the contrast dye used in the cath that obviously didn't agree with him. His heart rate probably stayed elevated because he was so upset after the procedure coming out of anesthesia.

The site where the cath went in is pretty bruised so it will probably be tender for a while. A small dose of heparin will be given to prevent any sort of clots and the continuing of fluids help balance him out. Hopefully he will be able to get a normal feeding soon - he hasn't had anything since midnight.

Going to have to stay overnight again to monitor everything through the night and hopefully tomorrow we will be able to go home at a some point. May have some additional consults stopping by while we are here. GI stopped by today and recommended that general surgery review his stuff but we are going to at least give him a stronger reflux medication to hopefully help with the spit ups.

Also told that we would have a surgery date for his Glenn procedure no later than by Thursday morning after the team reviews cases Wednesday night.

Hoping for an uneventful rest of the evening. Thank you for all the prayers!

December 14, 2015 posted 3:03pm:

The doctor went through his neck but couldn't see what they needed and fed the line down and found the access in the groin they couldn't get through initially. They ended up being able to go back up and getting all the images needed.

Surgery for sure before the end of the year. Going to lock down a date soon.

Now, things are a bit hectic...
Nicholas hasn't been able to calm down since getting out of the cath lab. Heart rate is really high and hanging in the 200's and not dropping. Respiration is really fast and he's working very hard but on room air. We are trying some medications to try calming him but so far he still isn't making much progress. If he continues to hang high- they will get an ekg on him.

He just spiked a little fever and they are giving him Tylenol which might also help with any pain.

Hoping something works...

December 14, 2015 posted 11:24am:

Big brother Alexander came in to wait for Nick and found some fun things to help pass the time.

Nicholas status update - They had a really hard time getting access and that has taken up the most time this morning. It was the same issue during his first surgery too. They couldn't get through via his groin and ended up going through his neck. He has remained stable through it all though! About an hour or less to go before we get to talk to the doctor.

December 13, 2015 posted 4:34pm:
On our way to the hospital for the night. Heart cath first thing in the morning. Crossing our fingers that the doctors will be able to see everything they need to and that the procedure goes smoothly!

December 10, 2015 posted 11:24am:
Happy 4 Months Old Today!!

December 9, 2015 posted 12:12pm:

Wednesday Weigh In:
Our very own Jolly Little St Nick weighed in at 13 lbs 13 1/2 oz today! Not much of a gain from last week but all things considered, he is doing very well. Looks like we may be able to get him to top 14 lbs before surgery!

It's hard for people to understand what all the hubbub and emphasis we put on his weight gain is all about. He started sliding dramatically and was only in the 4th - 5th percentile and we've had to work very hard and aggressively in the last couple of months to get him back up. He is closer to the 20th percentile range now! Looking at him, you would never know there were any concerns with his weight since he looks like a little chunky monkey!

We've been dealing with a respiratory cold which adds to his gagging, reflux, and spitting up issues but we keep pushing through it all.

A lot going on for this guy in the coming weeks. Regular appointment with our pediatrician, heart cath, evaluation and followup with GI, followup with speech therapy, evaluation by Neuro, evaluation by OT & PT, and to top everything off with an open heart surgery- whew!

December 8, 2015 posted 6:38pm:

Busy Day Today! We started the afternoon dropping off the toys collected from our Little St.Nick's toy drive to the Helen DeVos Children's Hospital. We even got on our local news and were featured on WZZM 13 Grand Rapids.

After the Toy drop off, we headed up to our cardiology appointment to see our cardiologist Dr. Al-Khatib. Nicholas got his usual echo and ekg tests done. And if you can believe it, his heart function and valve leak got better from his previous visit- such awesome and unexpected news!

During our appointment, we were also accompanied by Marie and Chris from Spectrum Health. They did a really sweet story on us that you can read

We are scheduled for a regular 4 month wellness checkup with our pediatrician on Thursday. We are also going back to the hospital on Sunday night to get IV fluids in preparation for his Heart Cath on Monday the 14th.

After talking to our cardiologist today, despite Nicholas doing exceptional well, we are still looking at getting his second open heart surgery around Christmas. I know what we will be wishing for this Christmas...a baby that will be home for New Years!

December 7, 2015 posted 7:35pm:

Update - the Little St Nick's toy drive drop off at the children's hospital will take place tomorrow. Although we wanted to drop off on Sunday, actual St. Nicholas Day, we are trying to minimize exposure to germs and decided it would be best to do it to coincide with our scheduled cardiology appointment.

Here is a sneak peak for tomorrow🎅🏼

Our Little St. Nick says Merry Christmas Everyone!

December 3, 2015 posted 12:59pm:

Nicholas says he loves nurses, especially our home visiting nurse Kristen!

Today he got his synagis shot with no issues. Hoping maybe it will even help shorten his current respiratory cold he got from his brothers. Managing germs can be difficult with a teenager in high school and a toddler that touches everything...

Disinfecting everything and crossing our fingers that we can get well and stay healthy from now through his surgery and recovery.

December 2, 2015 posted 11:51am:

Wednesday Weigh In: Our heavyweight topped the scales at 13 lbs 10 1/2 oz today! Amazing gains considering the challenges we've been having with feedings and spitting up!

Our little St. Nick comes with his own set of rosy cheeks too! The tape that holds the feeding tube in place is adding to his skin sensitivity around his cheeks making them a little more chapped and red than usual. We'll just say he's being extra festive!

Upcoming: Nurse visit tomorrow to administer Nicholas' synagis shot we've been keeping in the fridge over Thanksgiving. Synagis is recommended since he is an asplenic heart baby which puts him in the high risk infant group. It contains virus-fighting antibodies that can help protect him from severe RSV disease. Hoping there isn't a reaction and he does well with it.

We have a regular cardiology appointment and regular wellness check up with his pediatrician next week.The following week on the 14th, we are scheduled for his "heart cath". A cardiac catheterization is a procedure used to diagnose and treat cardiovascular conditions. During cardiac catheterization, a long thin tube called a catheter is inserted in an artery or vein in your groin, neck or arm and threaded through your blood vessels to your heart.

November 25, 2015 posted 11:59am:

Wednesday Weigh In: Tipping the scales today at 13 lbs 1 1/2 oz! 

Looks like our Champ is pretty confident about his upcoming fight and showing us who's #1!!

November 18, 2015 posted 10:23am:

Wednesday Weigh In: Our Little fighter is 12lbs 8oz today! Nicholas had a really tough week. He is spitting up more volume and more frequently. It may be due in part by the new medication he's on for high blood pressure, we are keeping a close eye on things.

We are falling off our personal goal of getting him to about 14-15 pounds by surgery but the good news is he is still gaining and not losing. It gets a little more difficult to gain weight as Nicholas is getting older. He is getting much more active which burns more calories and pushing more volume at feedings is not realistic since he is spitting up so much now.

So here's to finding the happy medium where all things align.

November 12, 2015 posted 11:00am:

Oh Mommy, more pictures?!
I can't resist that face, especially on the days we change the tube out.

November 11, 2015 posted 11:36am:

Wednesday Weigh In: Our Champ is 12lbs 3oz today!!

Nicholas says Thank You to his Daddy and to all those that have served, Happy Veterans Day!

November 10, 2015 posted 7:49am:
Happy 3 Months Old Today!

November 4, 2015 posted 11:20am:

Wednesday Weigh in: Our little fighter is 11lbs 11.5oz today!

We have had a couple of feeding issues lately. Nicholas is not taking very much from his bottle since we placed his feeding tube back in. We are basically having to gavage his entire feeds. I don't believe it's because he doesn't know how anymore but that it's just uncomfortable, little concerning though. We might have to have speech come back to work with him.

The tube has helped in making some big weight gains but there are draw back with having it in as well. We are dealing with much more spit ups because it produces so much mucus and kicks his gag reflex into high gear. I use the NoseFrida to help take some of it out but he completely freaks and it ends up creating more mucus...kind of a losing battle on that front.

I have a call into the doctor to let us know if it's just more important for him to gain weight or if we should try taking the tube back out to get him to take more orally.

November 3, 2015 posted 5:01pm:

Happy Tuesday!

November 1, 2015 posted 10:47am:

Getting geared up for the big game today! SKOL Minnesota Vikings! Sorry Bears fans...

October 31, 2015 posted 5:00am:
Trick or Treat - Happy Halloween!
October 30, 2015 posted 2:24pm:
Our Champ weighs in at 11 lbs 7 1/2 oz today! Continuing to pack on the pounds for his next fight!
October 29, 2015 posted 12:10pm:
Feeding tube changing day-hate to put it back in that sweet face!
October 28, 2015 posted 1:31pm:
Boo, early Halloween sweets! 

October 23, 2015 posted 5:12pm: 

We had a cardiology appointment today. Nicholas started out with an echo and he did really well and even fell asleep during. The cardiologist put him on a new medication today for his blood pressure- his is high. Hopefully the medication will lower his pressure and give him more energy but his oxygen saturation will drop as a side effect. We are still on track: scheduled monitoring once a month and a cardiac catheterization for the middle of December. Nicholas will most likely has his second opened heart surgery shortly after the catheterization. Although we knew he would grow out of his shunt, it's still difficult to know and hear about the leaks in his heart. On a good note- he gained an entire pound in 2 weeks and is now at 11 pounds. We are making some progress on that front and are continuing with his feeding tube. We want to get him bulked up prior to surgery.

October 10, 2015 posted 11:46am:

Happy 2 Months Old today!!

October 9, 2015 posted 2:49pm:

Doctors appointment with his regular pediatrician today for Nicholas and big brother Alexander. Both boys got shots but pretty sure it was Nicholas that handled himself better. Everything looks good but there was a looming concern over his weight gain.

Although we'd love to be able to strictly bottle feed fortified milk, Nicholas is unable to hit the volume needed so he is continuing to be in a daily caloric deficit. We decided to put his NG tube back in. Poor thing hates it and thinks he's always gaging. Hopefully he gets used to having it back in and can get back on track to make sizable gains.

Placing the tube back in was a personal disappointment and felt like a bit of a setback. We hate seeing him uncomfortable but understanding everything and knowing that in the grand scheme of things, this really isn't a setback at all, we are strangely happy to deal with Nicholas being temporarily upset.

More to come...

October 6, 2015 posted 2:06pm:

Nicholas is still doing very well at home. He is continuing to gain weight (albeit slowly, he is10lbs now) and within the last couple of weeks has started to hit some milestones of smiling and cooing! Nicholas is super alert and discovered that his hands can go in his mouth. He is getting stronger everyday. His neck is much more sturdy and he is already trying to roll to his side!

Nicholas' stats are starting to slide very slightly. We knew they were goingto start falling and continue to decline at some point but it doesn't make it any easier. The dose of reality is still difficult to swallow especially because he behaves and appears more "normal" than not. It's a reminder of just how fragile and precious this gift we've received is. And although we look ahead and dream for tomorrows we must always cherish and live the todays.

September 26, 2015 posted 4:40pm:

Our cardiology appointment this week went splendidly. There was an echo done with no concerns. The biggest take away for us is to keep Nicholas healthy and continue monitoring his feeds and making sure he is gaining weight. They would like to see continued increases in weight each week and advised that we up his 24 calorie fortification up to 27 calories. Fortunately, he is tolerating the increase really well.

We have an excel spreadsheet that we use to record everything. It tracks Nicholas' weight, time of wet and dirty diapers, time and volume of food via bottles, time and duration of breast feeding, heart rate and oxygen saturations, body temperature, breast pumping times, and medicines. It's been a huge help to have it as a reference - hours and days can get blurred together very easily.

Our next cardiology appointment is in another month and we have another appointment with the pediatrician in a week. The next heart surgery can be anywhere from October to February, it all depends on when he starts showing signs that it's time. The normal range for his oxygen saturation is 70-90 but he's been consistently in the upper 80's. When we start seeing his stats start to hang around the 70's, that's when we will know we have to do a heart catheterization and probably shortly after the Glenn procedure. The best gift we could ask for would be to hold off from surgery so we can be home to spend the holidays together with all our boys.

September 18, 2015 posted 12:35pm:

Did you notice Nicholas doesn't have a feeding tube in anymore?! We took it out to change and the line was so junky looking with mucus that we thought to try feeding him without it and he did great. We made the decision to keep it out. Our logic was that if he could take in the same volume via bottle alone that we wouldn't replace his tube. Frequency adjustments were made to his feeds from every 3 hours to every 2 so that he could better cope with fully bottle feeding with fortified breastmilk. When the home visiting nurse came the next week I let her know and after discussions between the nurse and Nicholas' pediatrician we were given the green light to leave the feeding tube out since he was gaining weight. He's supposed to be gaining an ounce a day but is gaining about 4-5 oz a week which is still great for him. The nurse told us that heart kids tend to not gain as much since they work harder and will burn more calories.

We seem to have made it through our first illness test. James started high school this year and during his first week he not only brought homework home but a cold with a fever as well. It has made its way through the entire family with the exception of Nicholas, thank goodness! A simple cold isn't so simple for an asplenic heart kid, it posses a very dangerous risk. Thank you antibacterial soap, Lysol disinfecting spray, and Purell hand sanitizer!

Nicholas is just over 1 month old now and he's doing very well. He is growing bigger and getting stronger everyday! We continue to have weekly nurse visits, speech appointments for feeding, and developmental assessments. So far we are getting through it all with flying colors. We have our first cardiology appointment next week and hope that we continue to get good news. Although we will never get to hear that Nicholas is "fixed" and understand that he has a very difficult journey ahead of him, our hearts are filled with gratitude as we are truly blessed!

September 3, 2015 posted at 6:06pm:

Still getting used to the routine of having a little one in the house. The sleep deprivation is a little more extreme with Nicholas as we have a few more items on the checklist but we will absolutely take it! He is really a good baby and he's rather "normal" when it comes to the whole scheme of babies. We've had a busy day of doctors appointments and follow up visits today. This morning we went to get seen and cleared from the cardiac surgical team. The chest X-ray, ekg, and exam went great! We now will just see our cardiologist for care until our next surgery when we will transition back to the surgical team. This afternoon we went to see our new pediatrician and everything was great there too. He's continuing to gain weight and he's already grown 2 inches. Hopefully we don't have anything eventful to report in the coming weeks and months. We will just be focusing on keeping Nicholas happy, healthy, and watching for him to hit some baby milestones. The first one coming in the next few weeks will be him smiling- always a heart melting one to achieve. Thank you all for your well wishes and prayers, more to come as we continue on our journey.

August 31, 2015 posted 4:14pm:

Guess who got to go home today?! The echo this morning showed that the fluid around his heart was almost all gone and we got the green light to go home. We are slowly settling into our new family routine.

August 30, 2015 posted 3:06pm:

We are just hanging out today waiting for the echo tomorrow morning. Hopefully the meds have cleared up his fluid issues around his heart and we can be discharged soon. Feeding is still at a slow and steady pace. He starts with 70ml in a bottle and he takes about 30-40ml and we NG the rest. Once he is able to take it all, we can take his tube out. Nicholas weighed in at 4.100 kilograms this morning just breaking 9 lbs! We took him off all of his monitors and it was so nice to be able to walk around with him and not get tangled in wires. There's been some heartbreaking news in the heterotaxy community over the weekend and we are acutely aware and mindful of how precious every moment with these special kids are. Prayers go out to the family of Team Mallorie. 

August 28, 2015 posted 12:49pm:

Looks like we are staying the weekend. The echo done this morning showed fluid around his heart which needs to be monitored. He will be put on steroid medication which will hopefully help to reduce the fluid. All of his other stats, the shunt, and heart itself is doing good. Just a little disappointed but glad they found it before we went home. So now, we're just getting our minds back into hospital mode and we forge ahead with positive hearts and minds through the weekend. We'll try again Monday.

August 27, 2015 posted 5:59pm:

We are still on track to be discharged tomorrow. It's hard to imagine what it will be like to have all our boys under one roof. We are anxiously awaiting this new phase to begin but we are never too far ahead of ourselves to fully appreciate what a huge milestone this is in our journey so far. We have so much to be thankful for and I can't help but take a moment to pray for those who never got a chance to make it home.
We've been busy trying to gear up to leave. We've learned to use the oximeter which we will have at home so we can monitor Nicholas' stats. Because he is still having some issues with fully feeding from bottles, we learned how to change and insert his NG tube for feedings. It was a little traumatizing since it is unnatural to shove a tube down a baby's nostril but I managed to get it in without incident. We've also had to run out for some last minute baby things for the house like bottles, bottle warmer, wedge pillow to help with any reflux issues, extra bibs, etc. I think we are as ready as we'll ever be...

August 25, 2015 posted 9:06pm:

Today Nicholas got his CVL taken out of his neck which leaves just his feeding tube remaining. He got his bottle feed volume increased and hopefully if he continues to feed well we can get his feeding tube taken out before we leave. Rumor has it, we could be leaving Friday!

August 24,2015 posted 4:03am:

We have been moved out of the ICU to the step down unit! All stats remain stable and the speech therapist has green lighted bottle feedings. We are only able to to feed him a small amount at a time in a bottle and the rest is still being fed through his feeding tube. They are just being overly conservative so that he doesn't aspirate and take a step backwards. Pacer wires were removed. These were put in during his surgery because they noticed an abnormal rhythm and were available in the event they needed to add a pace maker. Nicholas' CVL in his neck remains because they couldn't get a peripheral line in. A small issue has come up with his belly button, the spot where his umbilical lines were. It looks like a blood blister of sorts has formed and they are monitoring it for now. Another good day and step closer to home.

August 22, 2015 posted 5:29pm:

Someone got a bath today and is sporting his faux hawk! Nicholas is also breathing room air which is another step closer to getting home to be with his older brothers. If all goes well tonight, speech therapist sometime in the morning to determine if he's ready for feedings which means he could possibly be moved out of the ICU.

August 21, 2015 posted 7:34pm:

Nicholas is doing well but still had some trouble with his breathing overnight. He was still working a little hard and his breath was just too labored. He needed a couple breathing treatments which seemed to help a bit. Today we are just taking things easy and monitoring him. Nothing has changed much so there haven't been any adjustments made. Lab work looks good still and no signs of fever which is excellent. Bandage over his chest was removed and it looks great- no signs of infection. We are down to one machine which is administering fortified breast milk through his feeding tube. Soon enough we will be back home but this period of time between now and his next surgery is critical. We remain cautiously optimistic and cherish every single day until his next open heart surgery in a few months...

August 20, 2015 posted 8:58pm:

We had a little setback and scare. After we extubated Nicholas had trouble breathing. He had to be put on steroids because his upper respiratory system was really irritated from being intubated. His breathing has settled down a bit and he is using just forced air for assistance when he needs it but essentially he's breathing on his own. He will be monitored closely tonight and hopefully not need any further interventions. We were able to remove another thing off our list, the art line (it was in his left wrist). The only things to be removed now are the pacer wires and CVL (central venous line in his neck) If Nicholas' breathing remains stable we will be on track to try bottle and breast feeding tomorrow. We will probably also move to the step down unit. The biggest highlight for today is that Jimmy and I got to hold Nicholas for the first time since surgery! It was such a huge gift to be able to have him in our arms again, we are so thankful and very blessed

August 20, 2015 posted 9:11am:

Busy morning already! He's been extubated and doesn't have the breathing tubes in his nose. Just a feeding tube left for now. He also got his Foley catheter taken out. And to top everything off, Nicholas had a poopy diaper! Better enjoy it now, only time in your life when we enthusiastically celebrate pooping. Planning on seeing a speech therapy specialist to determine if he is ready for feedings today. There are even whispers of moving to a step down unit soon!

August 19, 2015 posted 7:27pm:

We will probably not extubate Nicholas today. He's just going to breathe on his own at his own pace which is perfectly fine with us. Another big treat today though was that Nicholas opened his eyes!! I can't quite describe how awesome it was. Finally we were able to connect with him again. This was the real sign that our little guy was still in there somewhere that we were desperately waiting for. Nicholas also got another item removed that can be checked off on our goals list. The UVC (umbilical line) came out this afternoon. Hopefully there will be more good news to come tomorrow.

August 19, 2015 posted 12:22pm:

Nicholas had a great night. All of his stats have been stable and labs look good. His blood pressure has been much better from the first day post op. He's been taken off or weaned back on some of his medications. He still is a bit swollen looking but his urine output is good. Additional highlights are that he is not on any blood pressure medications and he has a nice shunt murmur (whooshing sound indicating blood is going through). Only one sad thing happened yesterday - he woke up a bit and seemed to be crying except no sounds were coming out because of the things in his throat. Really heartbreaking to see but the nurse gave him some extra medication to keep him comfortable. Today is another big day, Nicholas is working towards getting his breathing tube removed. Right now he is technically breathing on his own but looks like he may still need the vent as he gets tired. We are in no hurry and will just monitor his activity- last thing we want is to remove it too early and then have to reinsert.
Will update progress later tonight.

August 18, 2015 posted 12:45pm:

Had blood pressure issues overnight. He was administered drugs to increase pressure which only worked for a short period of time. He then received blood to try to increase it which has been working better but the pressure still isn't at its optimal point. Doctor rounds were done this morning, they were very nicely done. There is a large team of medical professionals that meets outside of our room and discusses our case in medical terms. After they are finished, our surgeon, cardiologist, and nurse then explains to us in layman's terms and fields any questions we may have. Nicholas' body looks puffer today and you can see swelling in his legs and a little in his face which is common. Fluids are added to assist the heart so that it doesn't have to work as hard but that same fluid can in essence leak out to the tissues. Nicholas will be given another medication to help pull some of that fluid back in and help it to exit the body via urine. They are also going to draw back on the sedation medication which can also help with blood pressure and we will start seeing him wake up and move a little more. A feeding tube will be added today so that they can start adding nutrition which will consist of fortified breast milk. There was a thought yesterday that we were going to extubate him today but with all the swelling the plan is to wait another 24-58 hours before removing. Small victory of the day is that his 2 draining chest tubes were removed! Although things are still fluid moving, so far so good.

August 17, 2015 posted 8:34pm:

Nicholas got moved up to the pediatric critical care unit where we were able to meet him and see him for the first time since his surgery. Seeing him was a bit jarring since no one is really prepared to see their child laid out like that but all in all he looked great considering. His vitals seem to be stable for the most part and slight medicine changes are being made as needed. The team of doctors and nurses will round tomorrow at 8:00 am and this is the time they will discuss Nicholas' status. More updates to come. 

August 17, 2015 posted 1:20pm:

Feeling drained

11:52 am:
Nurse said the surgery was pretty much finished and that he is stable after being on bypass machine. She said Dr Haw would be out to see us

12:05 pm: Another nurse came out, said they were closing up now. Also mentioned he was on bypass but is off and his heart is beating. She also said Dr haw will be meeting with us to explain everything shortly. Nurse said cardiologist is looking at images.

12:20 pm: Met with Dr. Haw. There are a lot of technical things going on and I'll post more specifics later. There were both good and not so good things. For now, baby steps - Nicholas is stable and off bypass. His heart is pumping on its own. The next several hours are critical and he will be monitored very closely. He will not be awake for another day and will still be intubated. We are waiting for Nicholas to get to his room up in the pediatric intensive care unit.

August 17, 2015 posted 10:52am:

It was just about the most horrible thing that I could possibly imagine putting someone through. The waves of emotions that drowns you as you are forced to sit there helplessly waiting. Our only solace was in that we were still with Nicholas. Touching him, talking to him, scanning over and memorizing his every feature. As the hours starting ticking down closer to our 7:30 am surgery, the more the NICU was saturated with the heaviness and gravity of our situation. I couldn't help but make my desperate and silent pleas to God asking Him to watch over our baby. I remember thinking "Please God don't let me look back at this and realize these were the lasts."

It was almost time for us to move down to where he would have his surgery. We succumbed to our nerves and the battle to fight back tears was over. The outpouring of support of the nursing staff was too much for me to handle and soon we all were crying. To say thank you to this incredible staff of individuals falls infinitely short as we wouldn't have made it this far without them.

We arrived in the area where we would have to separate from Nicholas. The doctor lowered one side of the isolette wall so we could love on him for one more moment. We then turned over our son into the hands of the doctors and to God's will. As we were falling to pieces, I see our world walking away down the hall and I say to myself, this is not goodbye, just see you later.

Realtime updates:
7:23 am:
anesthesiologist and nurse came up to NICU to transport Nicholas to the operating room. Nurse is going to come out and let us know that anathesia was administered before surgery starts.

9:58 am:
nurse came out to let us know that surgery was just about to start and that all anesthesia lines were in. They were a bit delayed since babies have such small veins. She said we would get an update in about 1 1/2 hours

More updates will be posted as we get notified.

August 16, 2015 posted 10:38pm:

Going to be a long night. The day was greeted with an uneasiness; walking on eggshells at every turn because it's the day before surgery. Feels like at any moment one of us might have a proper breakdown but who has the luxury or time for that when we can barely find the time to sleep and eat. Nicholas' stats were all over the place today and every time it dips and the lights and alarm sounds, instantly a lump develops in the throat making it hard the breathe. For the rest of the evening we are going to just hold him and try to keep him comfortable. It's so hard to look at his innocent face knowing what he has in front of him. Positive healing thoughts and prayers would be greatly appreciated.

August 15, 2015 posted 7:14pm:

Just checking the blocks until surgery day. Vitals are stable and labs are looking good.
Bottle feeding is going well, still hoping to maybe try nursing him tomorrow. Nicholas' umbilical line came a bit loose and needed to be reset. Because the prostaglandin line is through there we are trying to be cautious and don't want to move him too much. The anesthesiologist stopped by for introductions and answered our questions. Trying to remember to breathe, Monday will be here before we know it.

August 14, 2015 posted 7:15pm:

Nicholas got to take his feeding tube out today! So nice to be able to see his precious unobstructed face again.

News from yesterday's X-rays: There doesn't seem to be a malrotation (twist) but there was an abnormal rotation identified. The intestines don't sweep back up and around like usual. Since the stomach was right sided it was assumed that all the structures would then be mirrored opposite. Instead the stomach is on the "wrong" side, but the cecum and appendix are on the "usual" side. We were however given the green light to feed Nicholas through bottle first then try out our hand at nursing him. He took his first bottle this afternoon!

Cardiology- The cardiologist did his round today and everything is still on track for the BT shunt procedure this upcoming Monday unless there is some unforeseeable turn of events over the weekend which would force us to do the surgery sooner. The likelihood of that is especially low because the prostaglandin Nicholas is receiving is at the minimum amount so there is some room to increase if needed. Dr Haw will be doing the procedure from the front versus the side as it is a better option for Nicholas. The reality is that the surgery is risky for a lot of various reasons. We were told that 1 in 10 won't make it with this first surgery compared to other heart procedures which would be for example 1 in 100. We remain hopeful though as Nicholas is the biggest baby going into heart surgery so far this year which only improves his odds!

We are planning on just loving on Nicholas and keeping him calm and happy for the next few days before surgery. It will probably be a while before we can hold him again as he recuperates. We hope everyone has a great weekend. Be grateful and appreciate each other. Hold your loved ones close and be sure to sneak in an extra kiss and hug them just a little tighter. 

August 14, 2015 posted  6:42 am:
Early morning snuggle. Dad was a little nervous to hold him for the first time with all the wires but he did great!
August 13, 2015 posted 9:03pm:
Went to the lab this morning to get pictures of Nicholas' GI tract. Since his stomach presents on the right side it was unclear of its full function and specific layout. The x-ray confirmed the right sided position and most of the intestines. We ended up having 3-4 more subsequent x-rays at bedside which we are still awaiting final review with the doctor. The preliminary reports are showing no volvulus (an obstruction caused by twisting of the stomach or intestine) but identified a possible abnormal rotation. We of course are in a waiting game again until tomorrow for any results at which time we can then address the extent/severity along with discussing being able to begin Nicholas on oral feedings. Going to be another long night for our little guy who just wants to eat and fill his tummy even though he is getting all the nutrition he needs intravenously.
August 12, 2015 posted 9:56pm:
A lot to update today! Last night was pretty tough and Nicholas needed to get an oxygen line added to his monitor, tube, and wire count. Good news is that he was doing really well today and that line was already removed. Another ultrasound of the heart was done today and will be reviewed in full detail among the team if cardiologists and surgeons and will be discussed with us sometime tomorrow. There is a tentative date and time for Nicholas' first open heart surgery for Monday at 7:30 am. Ultrasound from the first day confirms the absence of a spleen (Asplenia) which means he will be on a daily regimen of antibiotics which started tonight. Additional results show that his gallbladder and kidneys are fully functioning. One more stomach scan will be conducted tomorrow morning for a complete look at the presentation of stomach and intestines which will hopefully end with us being able feed him. One of three lines into his umbilical vein was removed which meant we were able to hold him today! All in all, it was a great day!

August 11, 2015 posted 6:01pm:
Got an IV inserted after many failed attempts for an upcoming scan, alarms have been going off due to oxygen levels fluctuating and dropping, and a little bit of discomfort possibly from the prostaglandin. Initial results from the the morning were inconclusive and more tests need to be ran and will be conducted tomorrow which means more waiting... Main items for tomorrow- more detailed images and scans to identify the vein and valve connections which will hopefully get us a preliminary surgical plan. Other items still on the docket are the orientation of intestines and additional review/results of abdominal scans.
August 11, 2015 posted 9:18am: 
Started the morning with getting a tube inserted in his nose that connects to his stomach before tests. Completed x-rays, ultrasound, & ekg. Awaiting results but will need additional tests that includes a full contrast to determine his intestinal layout. Oxygen levels holding steady, he's been such a trooper through it all! More to come...
August 11, 2015 posted 2:03am:
Busy first day but he's sleeping comfortably, oxygen level range from 70's-80's, received prostaglandin via umbilical vein which helps to keep the ductus arteriosus open. Keeping this blood vessel open allows the blood to continue circulating until surgery. Had an echo done and he will need additional scans tomorrow before a surgical plan can be determined. He looks so perfect on the outside that it makes it difficult to accept his health issues. More updates as we get them.
August 10, 2015 posted 10:36pm:
We welcomed Nicholas Jameson into the world at 9:56pm. He weighed 8lbs 9oz & was 19 1/4in. He came out crying and had great color! We are so blessed and were able to spend some precious minutes with him before he made his journey to the NICU. More pictures and updates to come.

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