Landscape Art Contest

The homeschool group that we are apart of had a landscape art competition.  All of the kids entered a piece.  I do not have Judah's available to put on here, but here are the rest of them.

Hannah's

Drew's

Bob's

 

Genevieve's

Isaac's

And the winner is this cutie!  Bob at age 6 won the 6-12 year old category with his moon/landscape.  The only help he got from me was showing him an example of how to paint the moon on YouTube, telling him what order to layer the paints, and recommending adding the strip of green at the bottom to make it an actual "land"scape.  He won a gift card to a frozen yogurt place and he is so pumped!

And the other winner is this pretty girl!  She won the 13-18 year old category!  (I had to reach way back to find a picture of her almost alone, so this is way back in the fall.)  She got a Fandango movie gift card.  I'm a proud Mama that the Smiths swept the whole contest.

Here is the screenshot of the page with the winners.

Recovering at Home

Roman loves to be outside!  He has always liked the contrast of the trees and the sky.

Other than his prescription formula and his sternal precautions (AKA not picking him up under the arms; we have to scoop him like a newborn) until mid March, everything else is healed up and doing great!

He actually has to practice sitting in the highchair, believe it or not.  His core is so weak that he has to be reclined slightly and have the four point harness.  The goal is to get him to be able to sit while supporting him at the hip level before he's "ready" for actual solid food.

Here he is in my lap after a bottle.  His reflux demands that we keep him upright for 30 minutes after he eats.  This creates a problem for me because that is when he is happiest, obviously, and they want him to also work on tummy time which he typically hates.

When Roman went to his 6 month check up with his pediatrician, he had still not gained ANY weight at all.  I can't figure it out because he was gaining before the surgery and was eating 17-20 oz a day, and he is now getting 22-24oz a day.    This formula is a different kind of fat and it is only fortified up to 24kcal whereas the other formula was fortified up to 28kcal before his surgery.  That doesn't seem like enough of a difference to account for the lack of gain.  Anyway, the doctor checked his thyroid again to rule that out as a cause.  It was normal.  Thankfully, she listened to me when I told her it needed to be a heel stick because his veins don't give it up the old fashioned way.  He also had to get an immunization.  I opted to start spreading them out for him, but he still had a fever for days, was fussy, and didn't eat as well.  In this picture he fell asleep in the swing, and it is the first time ever.  All my babies would rock straight to sleep in the swing, but he has never fallen asleep in it until today.  He was feeling so yucky and worn out.

Roman is rolling more frequently both ways now.  However, he won't do it often if I am sitting there.  Therefore, I am pretty sure the physical therapist that comes to our house every other week does not believe me.

This was Roman's first taste of food.  Stage 1 Peas.  He doesn't hate it, but having the mouth coordination to move it around and swallow it is hard for him.

Here's another attempt at a different flavor and texture.

He definitely prefers his feet to any food!

Really, he is such a sweetie!

 

Backyard Campfire

We had a bad windstorm here, and a tree that hangs over our yard had some huge limbs fall,thankfully,they hit nothing.  Our neighbor was not so lucky.  Isaac and Brian chopped them all up into firewood and had a spontaneous backyard campfire to celebrate their hard work.

 Hannah was out with friends, and Roman was in bed already.  The kids were sad that we had no marshmallows.

Coming Home

Roman got so accustomed to having his arms swaddled, that we just continued it at home.  

He sure was missed!

Roman started stimming in the hospital, hitting himself in the face over and over again.  The therapists said it was initially to try to pull out the tubes, but then he just kept doing it.  To break this habit, we started putting a lovey under that arm and it really worked well for a good while.  Unfortunately, as he got stronger this solution no longer worked, and he did restart this habit. 

Roman still loves his bathtime!  And these two helpers always run to the bathroom when they hear I am giving him a bath.

Roman has a flat spot on one side of his head, he had this memory foam pillow under him the entire hospital stay, but it hasn't seemed to make any difference at all.  Cranial helmet, here we come!

Roman is on five medications still, plus his vitamin.  When he came home he was also requiring Tylenol for the first week, and also glycerin suppositories every three days if his other medication didn't work.  In the hospital, he was getting two a day and it took us a while to ease off of those.

This is his medicine/bottle station.  I have to record everything to make sure we are getting in the fluid, having enough wet and dirty diapers, and getting his meds all on time and not certain ones together.  

 Roman had to be fed up in my rocking chair in my bedroom, swaddled, sung to, and have no interruptions to take his bottle.  It has been very tiring.  He is getting enough, but it takes 7 bottle feedings a day to get it all in.  This means feeding him through the night while he is sound asleep because he never wakes to eat at night.  His still having episodes when he is refluxing and he chokes on it, forcing it out of his nose.  This happens several times a day.  The worst is when we are in the car because what helps to most is to turn him all the way upside down so it comes out his mouth instead of staying in the back of his throat and coming out his nose.  I don't travel with him alone at this time because of this.  The boys all know how to watch him and suction his mouth and nose at least a little until I can pull over and help.  This is most likely due to his prescription formula.  

The Open-Heart Surgery and Recovery

 I started a Caring Bridge Site for Roman's surgery because many people were not on Facebook and it was an easier way to update people on how things were going with him.  I am copying the messages that I posted on there because for the most part that details our hospital stay.  I'll add in other details that I didn't put on the Caring Bridge site and note them with a * here.

January 20

• 
  

  This morning Roman was admitted to the hospital. He is in the cardiac ICU, in the Disney's Frozen themed room. He had a chest x-ray, an EKG, and got an IV (with labs). He was a champ, but the hour long IV session wiped him out as you can see in the picture.

  
  

  Tomorrow morning the anesthesiologist will take him to surgery about 7:30 a.m. The surgery should last for 3 hours after they actually begin. We don't expect him to be in recovery until around noon. A nurse will be updating us from the operating room. I will do frequent updates on the caring group site tomorrow. He is expected to be in the hospital for 5 to 7 days after the surgery.

  
  

  

  You'll see this famous singing/vibrating hedgehog in so many of the pictures because it was his main source of comfort and his biggest soother since picking him up often made him more upset.  
  
  

  

  His hospital bed set up.  It was so bright all day and night it seemed.
  
  

  Thank you all so much for your prayers! We are praying specifically that the repair is complete with no leaks, that he comes off all the machines well, and that he is able to start eating much easier and more volume after the surgery.             

  

  
  

  
  

  January 21

  9:30am

  
  

  Anesthesia went well and the surgery has officially begun. 

  
  

  As they took him into the elevator to go to the OR this morning, he was handing out smiles for all the doctors and nurses.  He's such a joyful and social little boy!

  
  

  May God protect him and help the surgical team to repair his heart!

  
  

  12:30pm

  
  

  The nurse called and said that they finished the repair and closed him up.  They had some trouble getting an arterial line, but are going to try again in his arm now that the repair is complete.  We hope to see him within the hour!
  

  *They got an arterial line in his groin before surgery, but his leg went white and cold so they took it out.  After repeating on the other side the same thing happened, so again they removed it.  They then proceeded with the surgery without an arterial line and got one started after his chest was closed up.  This was difficult too as the doctor had to dissect out the artery which was apparently not where it typically lies.  He has a pretty large scar from this, considering it was supposed to be like an IV entry.*

  2:30pm

  
  

  We met with the surgeons, and they were pleased with the results.  They are getting him set up in our room and then we'll get to go see him.  They decided to keep him on a respirator for today so they can keep his pain meds up and give him a chance to rest.
  
  Praise God he is alright!  We pray for an uneventful evening and night for his sweet little body.
  

  
  

  3:30pm

  
  

  

  Right after the respirator came out.

  
  
  

  He got the respirator tube out sooner than expected.  He's doing well!  Thank you, God!  His main goal today and tonight is to rest, so he's on pain meds.

  *The minute we got into the room, he was being prepped to remove the respirator.  I'm not sure why they told us he was going to keep it, but the plan changed almost immediately.  We had to go back to the waiting room after seeing him for only a few minutes.*

  Jan 22

  

  This is when he got behind on the pain medication on the first evening.  He was making this hoarse half cry and it was breaking my heart.

  
  

  Roman had a hard time in the evening. They got behind on his pain medications and moved him. He was really miserable for a little while, but they started a morphine drip and gave another pain med that calmed him down and allowed him to rest peacefully all night. They turned down the morphine to the smallest amount in the middle of the night because he was too sedated, and this morning they turned it off. They plan to keep it on standby, but use other medications to control his pain. He woke up briefly this morning and was making noises, but not whimpering or crying. He seems so much more comfortable today.

  
  

  The doctors just did rounds and are very pleased with how he's doing. They are going to leave in all the tubes for today most likely. He has no pericardial effusion that they can see, but his chest tube is still draining, so it'll stay in for now. They are not going to feed him yet because he doesn't have any gut sounds.

  
  

  We thank God that he's doing well and comfortable! And we are so very grateful for all the prayers and all the help that our friends and family are providing!

  
  

  Jan 23

  
  

  Roman had a great night, sleeping all the way through even with all the nurses did. He did better than I. This morning he got the catheter, the arterial line, and the wires for the external peacemaker taken out. It is easier for me to hold him now, and they are allowing me to try to feed him every 3 hours today. He is still on a small amount of oxygen because every time they've tried to take him off of it his saturation has gone down in the 70s eventually while he's sleeping.  They gave him one dose of morphine today after a bought of fussiness that we could not resolve otherwise.  So for now he's just being monitored and given medications as needed.  Overall, he's doing very well.

  
  In addition to the oxygen (nasal cannula) he also has a line going into his neck, and IV in his left arm, a chest tube draining from his heart, cardiac monitors, a blood pressure cuff, and a pulse ox monitor.  So, still a lot of wires and tubes, but we are gradually de-accessorizing. 😉

  
  

  
  

• 

  Peaceful

  
  

  
  

  
  

  
  

• 

  Watching football with Daddy.  Go Pack!

  
  

  4pm

  
  

  Roman spiked a fever so they are running tests. His urine is discolored so we are hoping it's as easy as a UTI from the catheter. Pray for an easy answer here. He's not been a happy camper this afternoon, but he's eating pretty well.

  
  

  Jan 24

  
  

  The doctor started him on antibiotics and went back to round the clock Tylenol and Motrin. His fever is normal today. He had a lot of gas built up in his colon that was causing a lot of pain and fussiness, but they have been giving him Mylacon and did a glycerin suppository to help clear the gas. He also had chyle coming through his chest tube, and so they now have to change his formula to one that has a different kind of fat (*medium chain triglycerides*) and unfortify it to solve that problem. He's only had one bottle of that formula, but he took 4 oz which is amazing for him! He never takes more than 3.5 and that's been only in his sleep since he went into heart failure months ago.  

  

  I read to him often when he was awake because it was one of the few things we could do to pass the time since he still hated to be picked up and I needed help with all the wires still. 
  
  

  

  Jan 25

  
  

  First of all...I got a smile from him today which just made my day!  He woke up from a nap and I pulled down my mask to talk to him and smile at him, and he smiled back!  I can't even tell you how happy that made me.  I've been waiting for that since seeing the elevator doors close before surgery.  ♥️♥️♥️

  
  

  He seemed to feel so much better today.  He still gets fussy when we have to pick him up, but he's very sore obviously.  He has thrown up after feeds twice and we're trying to figure out the cause.  Both times he'd had a bunch of oral meds immediately before and he's got a lot of chest congestion from the surgery and it hurts him to cough.  That could also be a factor in the puking.  The doctors are not concerned about that.  He's still dealing with gas and is on antibiotics which could also be upsetting his tummy.  

  
  

  He got his nasal cannula out today and his oxygen is doing good so far.  His chest tube has to stay in at least a couple days because of the chyle, but it is improving with the diet change.  Although we're still waiting on the cultures, they are expecting them to be negative.

  
  

  Roman's room is filling up with pictures, cards and coloring pages sent from his brothers at home!  I love it!  I think I forgot to mention earlier that when we arrived they said he was their seventh patient in the PCCU.  He's our seventh child, so that must be his special number.

  

  
  
  

  
  

  Again, thank you all for praying!!!!  Praise be to God that things are improving!

  
  

  Jan 26

  
  

  Today began at 2am with Roman's IJ (catheter in his jugular) leaking and bleeding. The nurses cleaned it up and taped and taped and taped. From 8 until noon he had a chest x ray, two different kinds of ultrasounds, and they removed the IJ. It was exhausting. At one point he even fell asleep during the ultrasound.

  

  
  

  
  

  
  

  The ultrasounds let them know that he didn't have any problem-causing clots and they also discovered he didn't have any more veins available to put any more lines in. Roman's always been stingy with his blood😜.

  
  

  We separated his meds from his feedings and he hasn't thrown up today which is wonderful, however, he also hasn't eaten as much as they were hoping. If that doesn't improve he will have to have an NG tube temporarily. I have somewhat resigned myself to this because I have been struggling with feeding him for months now. The change in formula has thrown him off and I can't fix that. There is nothing we haven't tried. He has to be on this formula for 6-8 weeks because of the chylous chest fluid. We'll just do the best we can! We are not looking at discharge anytime soon yet, though his chest fluid is decreasing.

  

  Jesus, I trust in you. Help our family to suffer this well and be the stronger for it! Roman is worth every bit of it!

  
  

  Jan 27

  
  

  This is a brief update, hopefully with photos this time since I'm at home at the moment. I uploaded photos to the gallery finally, but at the hospital I cannot upload photos to this site for some reason. *Brian and I are alternating nights at home which has been a life saver for us both.  It feels like one really long 36 hour day and then we get a solid night's sleep.  When I get into bed at night it does make me sad to see the empty crib next to the bed.*

  
  

  Roman got a feeding tube last night because we just can't get him to take enough of this new formula. We are very much hoping this is a temporary fix to get him a jump start on his healing and building up nutrition. He's having a lot of gas pains and build up, but that could be resolved as his guts wake up more and start gaining motility. We are praying this is very short-term! We are continuing to offer him bottles first before feeding him through the tube.

  

  Physical Therapy had him down on the mat, supported sitting with Mommy!

  

  He was super good at ripping out the feeding tube, but we tried to keep his hands in mittens all the time and his arms swaddled if we weren't going to be right next to him.
  
  

  He will most likely have to be on this formula for 6-8 weeks because of the chyle fluid. I'm hoping we can get him used to taking the formula by mouth much sooner than that!

  
  

  Jan 28

  
  

  Roman got his chest tube out this morning! Yay and praise God for that! Also he totally said "Mama" and I had a nurse witness it! I'm sure it won't just be happening all the time now or anything, but clear as day, God gave me that gift this morning. He must know how weak I am that I needed that carrot to keep going through this hard time.

  
  

  He vomited a lot last night and yesterday with this NG tube in place. This is truly difficult because it comes out his mouth and nose all at the same time. He did this when he was younger, but a much smaller quantity and he had totally stopped doing this since shortly after he got on the Gerber formula. They have a wonderful suction here at the hospital, but a bulb syringe is not going to cut it for this at home. It's a two edged sword. He needs this formula to keep him alive, and yet it's making him miserable.

  
  

  We ask for continued prayers for his body to accept this formula and to start eating my mouth enough to get this tube out. *I emailed our friend, Mother Magdalene, who has been praying for him.  She emailed back to ask our dear Mother Mary to pray for Roman to get the nutrition that he needs just like she did for the child Jesus.*  

  
  

  
  

  
  

  Looks like we'll be here till at least Monday.

  
  

  Jan 29

  
  

  No big changes today, but there was a slight increase in how much he took from the bottle and a slight decrease in the amount times he puked. His dad said it seemed to be more spit up volume than vomiting volume. Keep praying for a miracle with his digestion and his intake by mouth. I know God is going to take care of his child!

  
  

  The best news is that he has been so happy!!! He seems to feel so much better. He even got to go for a stroller ride today. I will attach the pictures when I get home to this post. He loved it!  *He can now go with us when we need to put his swaddles in the laundry.  All he is attached to are monitors and there is a box that comes off and can go in the bottom of the stroller.  "Child Life" comes by everyday to see if we need anything to make him happy or more comfortable.  That is who brought us the mobile that he has loved looking at as he falls asleep, the bouncy seat, the floor mat, other toys, and the stroller.*

  

  *Brian and I talked the doctors into letting us try a day without the NG-tube to see if that helped.  The tube was feeding him over the course of an hour after our bottle attempt.  This was causing him not to be hungry by the next feeding.  He also seemed to not like to swallow with the tube in his throat.  I thought it was setting him up for failure.  If we were going to be discharged with the NG-tube, the nurses were going to have to train us to put it in anyway.  So during rounds, I proposed that we take it out for a while and see if he eats better now.  They agreed and so I got to feed him by mouth all day and he did improve.  He did not gain even an ounce though with or without the tube which is frustrating.  However, they didn't put the tube back in!  We continued to advocate for Roman and worked with the dietitian, speech pathologists, and the physical therapist to get him strong enough to go home.  We could see a light and the end of this hospital tunnel!  On January 30th, Brian and I talked about how much better he'd do if he was home since all his medical issues seemed to be resolved.  All they were waiting on was him to eat better.  We decided to talk to them during rounds the next morning.  It was Brian's turn to stay and so I decided to come extra early to be there for rounds and pick up donuts for the nurses as a "Thank you and Good-bye."  I was sure they were going to let us go home.  During rounds we made our play for discharge and the attending doctor said, "Maybe tomorrow."  Later that morning, his surgeons came by and we told them our reasons for wanting to go home.  One of them just walked out into the hallway and said, "These guys are going home today, okay?"  And that was it, we began the discharge process.*

  

  Feb 2

  
  

  We are home! We came home Monday night, but have been super busy getting settled. Roman still fights all his medications and we're struggling to get in the minimum daily ounces most days (*Thy told us he needs to take in 20-24oz.*), but we're home and in charge of our own schedule and in our own beds! Thank you, God!

  
  

  Keep praying for him to eat! I'll continue to update this site if and when we get follow ups or status changes. We're supposed to meet with the surgeons for a post op visit tomorrow. *This didn't happen because of an ice storm.  They called and cancelled.*

  
  

  Feb 17

  
  

  We had our cardiology follow up and his 6-month visit. He's doing great, getting stronger every day, but still not gaining weight for some reason. He is eating in the given target range, ounces wise. He's still on the prescription formula for another two and a half weeks. We are hopeful that when we switch back to the higher fat formula that he will start gaining weight again. I am also tracking his weight at home now to see if I see any difference at all from day to day. He's been given clearance to taste some baby foods, but basically just testing foods that have no fats in them. They call it food play.  

  
  

  We still have to be careful how we pick him up and hold him. However, he is allowed to be on his tummy and he started rolling back to front more often.

  
  

  Thanks for the prayers! He's got 5 weeks until his next weight check, so pray he gains by then!
  
  

Our Main Goal for January

Our main goal for the first month of the new year is to get this guy a patched up heart!

His surgery was moved from the 10th of January to the 14th, and then again bumped to the 21st.  The Omicron variant of COVID-19 was running rampant in San Antonio from December through January.  The big kids had the week before his surgery off for their independent study project, but as that break was approaching I was getting multiple alerts that kids in their sections were COVID-positive.  Right before midterms I pulled them out of school.  I was just about killing myself everyday trying to get enough ounces in this little guy whose heart was failing and could not bear it if his surgery was postponed because one of the kids brought COVID into the house or he himself got COVID. So we got some extra special family time right before his surgery!  The big kids were scheduled to take their make-up midterms the day after his surgery on a Saturday.

LOVE. THIS. PICTURE.

The kids all love when I style his little patch of hair into this cute little Dr. Seuss "Who-like" do, so I use his baby oil on his head to prevent dry patches and just stick it up in the air.  Once it dries, it doesn't move no matter what.  His hair's got a little curl like Bob's did when he was a baby. 

Getting ready for his last ECHO before surgery at his pre-op appointment

He loves those feet!

 Feeding Roman was getting increasingly difficult and there were several times when I was sure we'd be getting a feeding tube, but somehow he scraped by and gained just enough weight to stay tube-free.  He was just over 13 lbs when we checked into the hospital on January 20th.  That's really not too shabby in the end.  They see much smaller babies than that in the Cardiac PICU.