Complications

{The day after his surgery. He was really puffy, which the doctors said was normal}

{Still hooked up to everything except the ventilator.  He was only on it over night!  That was great for us, since he was on the ventilator for about 6 days last time}

{I was so happy to hold him!!!!  And we moved to a new room the day after his surgery, a shared room so we shared a nurse for a couple of days}

So Christian had been doing great until yesterday (Friday).  He was really fussy yesterday.  I thought maybe it was because he was hungry.  They have him on a feeding tube, which slowly drips milk into his stomach (I'm pumping and they give him that).

He had a stuffy nose before his surgery, maybe for 4 or 5 days before his surgery, but no fevers or coughing.  I told the Nurse Practitioner when they were doing his pre-op stuff and she didn't seem too concerned.  Well, he was getting a little junky in his lungs, which is normal after bypass, but the nurse thought maybe more was going on.  She was woried it might be RSV again so they swabbed his nose to have it tested.  It came back positive for Rhinovirus, which is basically a cold.  I'm not gonna lie, I was totally freaking out last night while we were waiting to get the swab test back, wondering if it was RSV again.  I was sort of a mess.  But Rhinovirus is definitely not as bad as RSV.  The crazy thing is he hasn't really been anywhere.  We've kept him home so that he wouldn't get sick.  It just goes to show that you can't control everything.  I guess it's a good lesson for me to learn. 

Christian is doing much better today than yesterday.  He's just sort of resting, chilling, letting himself sleep a little more instead of constantly crying and getting upset.  They moved him from regular oxygen back to hi-flow to help during his cold and he will stay in the CICU (Cardiac Intensive Care Unit) for a little longer than he would have had he not gotten sick.  When they can wean him from the hi-flow, he can move onto the surgical floor and we can go home after a day or two there.

{Sweet resting baby}

What's life without a few setbacks, right?  They help to make us stronger, although last night when they told us it could be RSV again, I didn't feel strong.  I wanted to curl up into a ball and go to sleep so I didn't have to deal with it.  But I have to be strong for my little trooper.  He is much stronger than I am.  Severe RSV.  Heart surgery.  And now another cold just days after heart surgery.  Hopefully he'll be healthy for a while!!!  We are DONE being sick at our house.

{Here he is with all of the tubes out!  Yay!  It was so much easier holding him without all of those things.  And he was definitely not as puffy}

Heart Surgery

We're finally up to date on the blog!

We came up a day before surgery so the baby could get a sedated echo done.  The doctors needed him to be still so the echo could show them a little more info.  They were hoping they could do the surgery from his side instead of doing open heart surgery, but they needed to present it to the cardiac board before a final decision was made.

{These are his "Before" pictures.  I took them when we thought the surgery would be performed through his side, otherwise I would have taken them just of the front of his chest}

 

The morning of his surgery, Wednesday, April 17th, we had to be at the hospital at 7am and met the surgeon, Dr. Gruber, right before surgery.  He said he felt like it would be better if we went the open heart route.  If he went through the baby's side, he would for sure have to have future surgerys.  If he did open heart, it would be a one-surgery deal.  So he felt like that was the best way to go and we agreed.

{Right before handing him over for his surgery}

Handing Christian over to the anesthesiologist for surgery was so hard.  I gave the baby to him and just started crying.  It was so scary.  Jake and I just hugged and cried in the hall.  There are so many unknowns that can happen in any surgery, and open-heart surgery is so scary.  So we had to occupy ourselves for hours until surgery was over.  We went to the cafeteria and got breakfast.  I kept crying.  And crying some more.  I had to try to get my mind off of it.  So I updated the blog with the RSV story :)

Dr. Gruber had told us he would try not to do bypass, but they ended up having to do heart bypass.  And it ended up being a really good thing going through the chest.  Instead of being a coarctation of the aorta, he ended up having a hypo-plastic aorta, which means that instead of being narrow in just one spot, his aorta was narrow all the way on the arch.  So they had to "reconstruct" his aorta.  They basically cut it open and patched it with a donor piece of artery, so half is his aorta and half is donor.  As he grows, his aorta will get bigger and the donor piece will stay the same.  When I get home, I'll post the drawings that Dr. Gruber drew for us.  And they ended up not even touching his VSD, which means they didn't even have to go into his heart, just his aorta.

Christian did great in surgery and everything went well.  Had they gone through the side, they probably would have had to open his chest, too, so we would have had one sore baby.  And they told us that going through the side is actually a lot more painful that going through the chest because there is more muscle to cut through on the side.

{Right after surgery.  The red tube under his incision was his draining tube.  The wires on either side of the draining tube were his pacer wires, in case they had to shock his heart}

They had to intubate him for the surgery.  They kept him on the ventilator over night and ended up extubating him on Thursday afternoon, which made me a happy momma because that meant I could hold him.

{All the meds he was on.  These went into all of his IV's.  He had an IV in each foot and in his right hand}

{His first recovery room w/ the monitors and the ventilator (to the right)}

Finding a new normal

I was so glad to be home after being with Christian in the hospital for two weeks.  Everything has made me nervous, but he has done great.  We have portable oxygen tanks so we can go to Grammy and Papa's or in the car (which we try not to do very much since he doesn't breathe as well in the carseat).  And we've been trying to keep him at home as much as possible.  We didn't want him getting sick before his surgery.  We haven't really had visitors since we came home from Primary's.  We wanted to keep this boy healthy!

{All of our portable oxygen tanks}

{The oxygen machine he was on at home}

{The 50 foot long tubing that was connected from the oxygen machine to Christian's nasal cannula - we had to drag it all around the house! It was a big pain}

{We kept finding him like this :)  He'd pull it down from his nose to his mouth}

The doctors originally said they wanted to wait six weeks for Christian's surgery (actually, it went from 4-6 weeks to two weeks to them not wanting us to even leave the hospital before his surgery and then back to six weeks).  He had been eating a lot better since I had been mostly pumping and feeding him through a bottle.  I would nurse two or three times a day so he wouldn't "forget" how to nurse.  But bottle feeding was so much easier for him.  For the most part, he wouldn't get sweaty when he ate through a bottle, only when he nursed.

Christian would have crying episodes that would just wipe him out.  Crying would take so much energy from him and nothing would calm him down except holding and bouncing him.  But after these episodes, he would crash and need to sleep.  His blood was just pumping so hard when he'd get worked up and since his aorta was narrow, it was hard for his heart to pump that blood.

{Asleep with his arms up in the air!  Can you tell he was taking most of his naps in the swing?}

One good thing was that Christian continued to grow and gain weight while we were home.  Heart babies usually have a hard time gaining weight.  But I think since he was mostly eating from a bottle, it was helping him eat more.  We saw  Dr. Newbold weekly while we were home so he could keep a close eye on him and make sure everything looked good.

We saw Dr. Etheridge, a Cardiologist from Primary's that comes down to St. George monthly, the beginning of April.  They did an EKG and an echo and then we saw the doctor.  She said that, looking at his chart, she was not expecting to see such a healthy looking baby.  That was really relieving and comforting to us.  She said that since he was doing so well, she didn't see any reason to wait any longer for the surgery.  I was so ready to stop thinking about this surgery and to put it behind us.  I wanted my baby to feel better, even though he didn't even know any different.

{Getting his echo done in St. George}



Getting over RSV

Christian ended up being on the ventilator for 6 days.

Lindsey had the girls the first week and she brought them up to see us that weekend. It was hard trying to split our time between the baby and the girls. When we were with the baby, I felt guilty that we weren't with the girls. When we were with the girls, I felt guilty that we weren't at the hospital with the baby. But it was good to see the girls and spend a little time with them.  They stayed at the hotel with us at night, which was extra exciting for them!

{Having fun with the girls at the children's museum at The Gateway}

 

The doctors finally took Christian off of the ventilator on a Saturday. I was so happy to get to hold him!!! He was smiling and so happy. Probably because we were holding him and because he didn't have that tube down to his lungs anymore.

{Right after the extubated him}

{Smiles!!!}

We were in the PICU for four more days after that (total time in the PICU was from Monday, March 4th to the next Wednesday, March 13th) and then they transferred us to the floor.

The nurses in the PICU were amazing! Christian had a shared room but a lot of the time he had his own nurse because they had to keep a close watch on him. The nurses told us that they were the most expensive babysitters we'd ever have and to take advantage of that. So while he was in the PICU, we slept at a hotel at night.

Jake went home on Sunday with the girls. My mom stayed up with me and Christian. We got to hold and snuggle him all day, but he was still hooked up to an IV, all the monitors and he was on hi-flow again after they took him off the ventilator.

He was able to go to just oxygen after a couple of days.  They slowly turned the oxygen down and eventually he was stable enough on a low enough setting that they let us leave the PICU and have a private room.

{Off of hi flo and on just oxygen - you can tell by the nasal cannula.  The hi flo cannula is bigger.}

We were on the surgical floor from Wednesday, the 13th to Friday, the 15th (the surgical floor because they needed to monitor his heart and they could record it in that wing). I stayed with him at the hospital those nights. He was such a sweet little guy. He would smile at all the nurses, even when they woke him up in the middle of the night to feed him and change his diaper.

{Cuddling with mom}

By the time Friday came around, I was more than ready to go home. Christian was on 1/32 of a liter of oxygen (the lowest setting) but they just couldn't wean him off of it. He actually did great off of it on Friday for most of the time but he didn't pass his carseat test - he had to sit in his carseat for an hour with no oxygen, but he couldn't do it. His body needed that teeny, tiny amount. I told them if that was the only thing keeping him in the hospital, just send him home on oxygen. I was ready to resume life and be with Jake and the girls, too. So they let us go home!



Primary Children's Medical Center

{I'm writing this at Primary's while we wait for Christian to be done with surgery, so I will post pictures later}

From the time they told us Christian would be transferred to Primary Children's Medical Center to the time the Life Flight team got to Valley View was about three hours.

The Life Flight team was awesome.  They intubated the baby at Valley View before we got on the plane.  I left the room when they intubated him - I couldn't watch it.  His body was finally able to relax when they put him on the ventilator.  They stabilized him, got us on the ambulance and took us to the airport.  Both Jake and I were able to fly up with the baby.

{Right after he was intubated}

 {From the Life Flight plane}

My mom was amazing.  She went to our house, did our laundry, packed for us and drove our car up.  She stayed with me the whole two weeks we were there.  And the girls went to my sister's house for the week (they thought they were on vacation!  They love going there).

This was the first time I'd been in an ambulance.  It's the first time I'd been in the hospital with a child, besides the time that Emmy got tubes in her ears.  It was all new and scary to me.

We got to Primary's on a Monday, early afternoon, and went straight to our room in the PICU.  We were in that room for 9 days.  Since the baby was on the ventilator and sedated, there wasn't much we could do.  We couldn't hold him, which was the hardest part.  I told the nurses I wanted to change his diapers when I was there so I could at least feel like his mom a little bit.  And since I'm nursing, I had to pump every three hours and they would give him my milk through a feeding tube.

{Sedated while on the ventilator.  The yellow tube is the feeding tube.  The tape across his face is to hold the breathing tube/ventilator in place}

On Tuesday morning, when the doctors were doing rounds, they told us some shocking news. The night nurse had found a heart murmur and through tests they found that Christian had Congenital Heart Disease/Congenital Heart Defect.  This basically means he was born with heart problems.  I just started crying.  I didn't even know what it meant for him or for us, but I knew it wasn't good.  The cardiologist that was there that day explained everything that was wrong with his heart to us and drew a picture so we could understand a little better.

{The nurse wrote everything down on a white board that was in the baby's room so we could remember everything they told us.  It was a lot to take in.}

Here is the list of things:  Coarctation of the Aorta (coarc), Patent Ductus Areteriosus (PDA), Ventricular Septal Defect (VSD), Mitral Valve Stenosis, Patent Foramen Ovale (PFO) and Atrial Septal Defect (ASD).

They let us know that they would have to perform surgery to fix his coarc, which means that there is a narrowing in his aortic artery, making it hard for blood to be pumped from his heart to his body.  They would have to close the PDA (a vessel that usually closes off when you are born), but it was a good thing at this point that it never closed off because it was feeding blood into his aorta, sort of supplementing his blood flow.  They thought they would have to patch the VSD, which is a hole between the two lower chambers of the heart.  But they weren't planning on doing anything to the ASD/PFO, it should close off on it's own (it's another hole that should have closed when he was born).  And they weren't even going to address the Mitral Valve Stenosis (a narrowing in the mitral valve) at this time.  He's too little to have surgery on it and they are hoping that by fixing the coarc, the mitral valve will correct itself.

This was a LOT of information to process.  We went from a traumatic weekend, almost losing our baby, to things being stable to this.  I couldn't even process it all yet.  I had to get Christian over the RSV before I could start really thinking about the heart issues.  Baby steps.  But we feel lucky they caught his heart issues when they did.  He could have gone a long time before they figured out exactly what was wrong with his heart, which means that he could be really sick.  We found it before it got to that extreme point and we are grateful for that.  Honestly, I would never even have known he had anything wrong with him.  The signs of his heart problems are so small:  sweaty baby (it's hard for them to nurse, almost like a workout, and he did have a hard time nursing, which would get frustrating.  I just figured he wasn't that great of a nurser), sleepy (he was a newborn, of course he was sleepy!), small (he was growing, which is great, but not as fast as the girls had), rapid breathing (I had noticed that he had a hard time breathing, but only in his car seat.  I was always nervous that he couldn't breathe that great in his car seat and would try to tilt the car seat to try to help him breathe better).

From this point on, they had to keep a close watch on Christian's heart, as well as his lungs.

Not getting better

So, this all started on a Friday afternoon, when I took Christian into the ER.  Jake went home to spend the night at home with the girls and I stayed at the hospital with the baby.  I didn't get much sleep, and the baby was pretty much doing the same.

I started getting worried after talking to a friend about how RSV can get really bad really fast.  I hadn't ever experienced a child with RSV before, so I didn't know how bad it got at all, especially on a baby so small.  I had my dad come to the hospital and give me a father's blessing on Saturday night, which was so comforting.  I think that blessing, along with all the prayers of others, is what got me through this whole experience.  After my dad gave me the blessing, he told me that he KNEW Christian would recover from the RSV because it was confirmed to him in that blessing.  We cried and I felt relieved.

(Hooked up to all of the monitors)

The oxygen alone wasn't doing much to help anymore and so they switched him to a blender, which is oxygen blended with forced air.  I talked to a nurse and told her about my concerns.  She assured me that he was doing just fine and that I didn't need to worry too much.  But an hour or two later, people showed up with an x-ray machine to take x-rays of the baby's chest and to take blood samples.  No one told me why they were doing this and I started getting frustrated.  The x-rays once again showed that he probably had pneumonia and they started him on an antibiotic right away.  

That night, he seemed to improve and I felt relieved on Sunday morning to see improvement.  I thought we were on the road to recovery.  But shortly after, his oxygen levels were dropping again.  The Respiratory Therapist (RT) decided to put him on Hi-Flow, which is heated/moist air mixed with oxygen in the nasal cannula.  By Sunday night, he was still not improving.  I asked the RT what he thought since this was his area of expertise and he said the baby wasn't improving like he'd like to see.  I felt like no one was telling us what was going on and was really, really frustrated.  I felt like I didn't really know what was happening with my own baby.  So I started asking a lot of questions.  I just wanted people to be honest with me about how my baby was doing.

He looks so tired here :(

The Hi-Flow wasn't working like they'd hoped it would, so they moved us to the ICU to be put on the CPAP machine, which was the last thing they could do before transferring him to Primary Children's Medical Center.  Just transferring him over to the ICU (Valley View Medical Center doesn't have a NICU), his oxygen levels dropped so low and it was taking him longer and longer to recover when his levels dropped.  It was scary and I was starting to get really nervous about what was happening with my baby.  They were constantly suctioning his sinuses to help clear his airways.  And his stomach was getting big because of all the oxygen he was on (at this point, I think he was on 80% oxygen, which is really high).

When Dr. Newbold drove into town that night (Sunday night), he came straight to the hospital to see Christian.  His retractions were pretty bad at this point and I was scared that he was working so hard to breathe.  I felt like it was only a matter of time before it became too hard for him to breathe and he'd give up because he was too tired.  Dr. Newbold had an NG tube put into Christian (goes into the stomach) to help relieve some of the pressure of the oxygen that had built up in his stomach.  I had to stop breast feeding at this point so that Christian wouldn't aspirate on the breast milk.

Sunday night was horrible.  The baby's oxygen levels kept dropping and, like I said before, it took longer and longer for him to recover.  We had to blow oxygen right into his face when his levels would drop.  I hadn't had much sleep the previous two nights and I wasn't getting any sleep again, which was definitely wearing me down.  I felt like it was time for Christian to be transferred to Primary's.  The CPAP wasn't helping at all.  Christian's heart rate would get so high and his oxygen levels would get so low.  I couldn't stop crying.  It wasn't good.  One lady came to draw his blood and I told her she'd have to wait.  He had just recovered from one of his many episodes (being suctioned, crying, oxygen levels dropping, struggling to breathe, blowing oxygen into his face), I knew all his poor little body needed was rest and he definitely wasn't getting it.  She seemed annoyed but I didn't even care.  I finally had to step in and protect my child.  He couldn't keep doing this same cycle for much longer.

By the time the nurses were changing shifts in the morning, I was a basket case.  I will forever love the nurse that came on that morning.  Marjean Carter.  I know her daughter and so she knew who I was.  She asked me what I thought needed to happen.  I told her that I didn't know, I'm not a nurse or a doctor.  She looked at me and said, "No, you do know.  I believe in Mother's Intuition.  What do YOU think needs to happen."  I told her I thought he needed to be transferred to Primary's right away.  She said, "Okay" and turned around to make the phone call to the doctor.  The relief I felt at that moment was so immense.  I KNEW that's where Christian needed to be.

March Madness begins

{I'm going to split these posts up so it's not one super huge, long post ... }

March started out like any normal month.

Emmy and I watching Justin Bieber's "Never Say Never"

And Kate playing with tissues on her head.  And my head.  And the baby's head.

But it ended up being the craziest (and scariest) month of my life so far.

The girls had been sick with colds.  I have been super paranoid about RSV since the baby was born, so as soon as I realized they were sick, the baby was off limits to them and I tried to keep him in another room, away from them.  I did not want him to get sick.  He hadn't been to church yet and I'd only taken him to the store a couple of times.  I hadn't even been to the gym yet, which is a big deal since I go 5 days a week when the kids are all healthy.  But they don't take babies until they are 6 weeks old, and Christian was 5 weeks old at this point.

I noticed he sounded wheezy and rattley and he had a teeny cough.  Nothing too concerning but since I was so paranoid about RSV, I wanted to have him tested.  Our pediatrician, Dr. Newbold, was out of town so I took Christian to the ER,  knowing they could test him there.  They did the swab and it came back positive.  He was retracting pretty bad - I didn't even know what retracting was until then.  They did a chest x-ray which showed he might have pneumonia, too and they decided to admit him to the hospital, which surprised me.  I thought they would just tell me what to do/how to take care of him with the RSV at home.

(In the ER, waiting to see the doctor)

When they decided to admit him, they got an IV going:

Jake and my parents showed up and Jake and my dad gave the baby a blessing, saying he would recover, which was really comforting.

I thought we'd be at the hospital for a few days and then go home when the baby got a little better.  They put him on oxygen, since his oxygen levels were low and the waiting game for him to get better began.

Christian's many faces

I love how a baby can pull the funniest (and cutest!) faces ...

{From February.  And a special thanks to my phone for helping me take these pictures}:

Instagram February Highlights

Here's a peek at what February looked like at our house through Instagram.

 I love this ...

 Christian's first hairdo!

Such a sweet baby

Emmy's artwork ... her boyfriend (not really) moved :(

I'm in love :)

Emmy putting together her Valentines for her class

Heart-shaped pancakes for VDay breakfast

And more of the boy :)

Emmy left this note for us on our dry-erase frame:

Christian rolling to his side to sleep

Kate playing Temple Run in her undies.  I don't even know how long she played for ...

Yep :)

Smiles!

His first real smile was at 3 weeks old

Emmy got the Super Student award!
Not really sure what it meant but she was excited about it!

Out to lunch!
The baby was asleep in the car seat.

I took Emmy to get her nails painted while Kate spent a couple of days in St. George with Aunt Lindsey.  Don't worry - she had peeled it all off by the time I picked her up from school!