Month Two

The day we left the hospital, Josh was two months old. We're so happy that his surgery went well and hope that we've earned a few months of smooth sailing.

Nicknames: buddy boy, muchkin, little bit, cheeky (or stinky cheeky depending on his diaper status)
Temperament: so happy and inquisitive, he's always either smiling or looking like he's thinking hard.
Stats: weight 8 lbs 15 oz. length 22 inches
Looks: He's still a little on the scrawny side but he's working on a fat roll on his arms and thighs. We're hoping that a fixed heart will let him start to bulk up a bit. He still has reddish brown hair and blue eyes so the recessive trend is still in force. We also think he might be a lefty because he definitely likes his head on that side and is always chewing on his left hand.
Accomplishments: head and eye control
Things he loved the most: playing on his play mat, flirting with the nurses/anesthesiologists
Things we loved the most: the constant smiling and laughing, how sweet he looks in his jammies
Things he could do without: blood draws and IVs, the xray torture rack, the hiccups/coughing
Things we could do without: the disruptions to his sleep patterns since being in the hospital
Item/toy he loved the most: the green pacifier, the vibrator from the hospital (the bouncy seat can't even compete), Gigi the giraffe and her soothing music, Rico the monkey
Items/toy we loved the most: same as above since they helped with sleep
Item we all hated: the nasogastric tube and calorie fortifier from the hospital
Surprises: Just how hard it was to hand him to the anesthesiologist the morning of his surgery. I knew he needed the procedure and we thought we were ready for it, but it was beyond nauseating to hand him off to someone to take him to the OR. How quick his surgery was - given how small his heart and body are, it's amazing how fast they placed all their fancy IVs and then did the procedure. We were also surprised by how little pain he seemed to have. He was on a morphine drip for three days but since then has needed very little pain medication and doesn't seem to hurt at all except for during those dreadful hiccups. Ouch.


Two weeks


Two months








Momentous events of this month: His heart is fixed! Meeting Gra and Ba then losing Ba so quickly.

Things we're looking forward to next month: Cooler weather so we can do more walks and explore the outdoors in our new neighborhood, Mom going back to work so Josh can hang out with Dad.

Other favorite pictures from this month

It's good to be home!

Home again! As we were hoping just having the nasogastric tube out and eating his own food has completely restored our happy baby. He slept most of the way home, ate great last night, only woke up once and has smiled more today than the previous 8 weeks combined. Other than a slight cough, a few new scars and several new medications to manage we have little residual effects from our two weeks away.






Charly, Sadie, Hobbes and Ella were also quite glad to see us and we loved sleeping in our bed. Only plan now is to be lazy and enjoy the next ten days before I have to start my new job. After the summer we've had I think it will be the least stressful transition of all.

New Heart Day #10

We woke up today with a prevailing thought that we have to get out of here. Our normally happy, mellow baby has spent most of the last 48 hours crying and very little of it sleeping. We're not really sure what the problem is but ever since he had all those procedures done yesterday he's been almost inconsolable. Personally, I think he is having reflux around his feeding tube and that he hated the fortifier they were adding to his breast milk/formula combo (it smelled horrible). But the nurses and doctors keep dismissing him as just a colicky baby despite the fact that he's never been like this before. He screamed with each feeding, lying down, swinging, and snuggling. In fact the only way to keep him happy is to either walk or wheel him around the hall.



He would fall asleep for brief periods of time but would almost instantaneously be bright eyed the minute you stopped moving. Since we'd been on the floor Thursday night I hadn't slept so Scott took over on Friday night. He finally got him to sleep at about 5am and we put his next feeding just straight down the Nasogastric tube. I felt quite justified when he started gurgling formula up through his mouth and they finally agreed to start some Zantac (which by the way we do prophlactically in all adults with a tube in). In the midst of all this he threw up everything including the nasogastric tube.

When the team came by for rounds they thought we were doing well from a cardiac standpoint and thought we'd be ready for discharge on Sunday. Luckily knowing the system I asked what they had planned for us overnight - the answer as I suspected was absolutely nothing. So, I reasoned that we could just as easily be discharged Saturday afternoon. We were hoping that our happy baby would return when back on his regular diet in his normal environment but even if not, we couldn't face another night of pacing the same 40 yards of hallway (his security bracelet wouldn't let us go any farther). After some reasoning they seemed fine with my plan but wanted his feeding tube replaced. Now I didn't have a problem with the tube if it was needed but insisted that we be allowed to feed him without the fortifier through his normal bottle first. As suspected he did fine with this and after a little arm twisting on my part they sent us home with just the supplies so I could put the tube back in only if necessary once we were home. Another job perk I suppose.

So after his pacer wires were removed and one last bit of torture with a repeat chest xray on the rack,




a quick bath and change of clothes



and waiting for all of our paperwork




we are on our way home




Ohio here we come

New Heart Day #9

Sorry for the lack of updates yesterday. After attending Stan's funeral then driving back from Grand Rapids we were trying to squeeze in as many snuggles as possible. Since we've been able to hold the baby whenever we like, we've definitely been taking fewer pictures but here are a few from the last 24 hours.

My new room is much less complicated although it's a bit clausterphobic


And now that I'm awake, I rarely take my eyes of Mom or Dad.


Thankfully I've got Eeyore, lamb bear. Echo, Rico and Gigi to keep me company



Josh had a rough day yesterday but only because he needed a bunch of minor things done - a new IV, replace his nasogastric tube, removing his central line, repeat blood draws, etc. All of them left him pretty upset and he didn't nap much so many snuggles were necessary. I now have a taste of what it's like to have a less mellow baby and let's just say we hope he quickly goes back to his regular self.

About 8pm last night we got the word that there was finally a room ready out on the floor and thus ended our stay in the PCTU. While we were sad to see his nurses go, it was an exciting step towards being able to go home. Since there is less nursing care on the floor, there's a lot more for us to do and despite the sleeplessness, it feels good to get back into a little bit of our routine.

Today, Josh graduated from needing his oxygen and is on all his medicines by mouth. He continues to have periods of fast and slow heart rates but the electrophysiologist believes they're not coming from the sinoatrial node (which controls the heart rate) but are instead due to some premature contractions from the atria that occasionally get recognized by the rest of the heart. In short, they're still not worried about them and don't think it needs further testing at this time. He had his post-surgical heart ultrasound today and all the veins are where they are supposed to be and everything seems to be working normally. So, the last issue standing between us and going home is working on his feedings. Since he had the breathing tube in for so long he seems to have forgotten how to eat either at the breast or with the bottle so he's pretty uncoordinated. Evidently this is pretty common so we'll likely have to take him home with the nasogastric tube in so we can give him food and medicine through there if he can't process it by mouth. Hopefully he'll be able to coordinate his mouth again quickly and it won't need to stay long. Since I have placed many a nasogastric tube in my times on the floor they say they're comforrtable sending us home if he doesn't have any trouble today/tomorrow.

Hopefully that means our next post will come to you from Ohio!

New Heart Day #7

Everything has been looking better here in Ann Arbor. Josh got to cuddle with Dad some last night.



Josh is much more alert today. At first he seemed perplexed by all that's happened while he was sleeping.



Then he realized that he was really hungry. Unfortunately the pacifier isn't producing much but it's not for a lack of trying.



Finally after some food into his nose tube, he decided he'd be the happy baby he always is.



He did have a few episodes of heart arrhythmias last night. When he's relaxed his pulse gets quite low (sometimes into the 40s) and he had a few spontaneous episodes of supraventricular tachycardia with rates up to 250. To me these seem worrisome but the cardiologists aren't concerned since either type of episode resolves spontaneously and his blood pressure and oxygen numbers all stay well within range. In my little old ladies either one of these would be a big problem but evidently they are quite common in infants especially after surgery. Again, its the problem of knowing just enough to be dangerous. I'm trying to remember there are reasons for all of the medical subspecialties and trust what they're telling us.


In other medical updates, his E coli from the lungs was resistant to the antibiotic he was on so he was switched to some Bactrim today. They've also changed the diruetics from the constant drip to every 8 hours. And since he's on only 2 liters of oxygen they've been able to remove the arterial line from his groin. So out of the 8 tubes he started with only 3 are left. They're forcasting at least a few more days of watching his heart rhythms, continued antibiotics and a repeat heart ultrasound to keep him occupied for the next few days. If all goes perfectly we could be out of here as early as Saturday afternoon but it's more likely to happen Sunday or Monday.

Scott and I are heading to his hometown tonight for a quick 12 hour trip so we can be at his dad's funeral tomorrow morning. So Josh and his Aunty Em will snuggle without us. We're so, so very grateful that she was able to come.

Free at last!

Josh has continued to do well. His nurse took pity on me yesterday given the stresses we've had this week and conspired with Emily, another nurse, the respiratory therapist and the attending to let me hold Josh for awhile yesterday afternoon. It took quite the level of coordination to lift him out of his bed, move the bed out, the rocking chair in and rearrange all of his tubes and wires so that they weren't under any tension. To me it was a huge gift. He settled right down into my arms and fell asleep. Only my bladder and a strong need to pump were able to get me out of that chair.






He's growing out two types of bacteria from his lung culture but the Zosyn should cover both they're stopping the other antibiotic Vancomycin. He's receiving a few doses of steroids to help with the inflammation in his airways and they want to continue the antibiotics until at least Saturday but overall his lungs appear to be much better.

Better enough that this morning they took the breathing tube out! He did well with trials yesterday so they decided he could be extubated this morning to some high flow oxygen.







He's still tethered by his arterial and central lines but now he can be much more mobile so we're trying to catch up on our snuggle time.






We're excited too that Scott is coming back tonight for some snuggle time of his own. I'm sure some cute baby time will help his spirits and Josh loves to cuddle with Daddy so it will help him too.

A new guardian angel

Scott's dad, Stan passed away this morning. Thankfully he was comfortable at home with his family around him. I'm sad that Josh and I couldn't be there but with all the trouble he's had with his heart over the last few years, I feel sure he knows what Josh is going through and is now watching over him. We've already seen a difference this morning and Josh is looking better.




He's not had any further temperatures but his sputum is growing some bacteria. We're not sure if the infection is limited to his upper airway or if he has an early pneumonia but the antibiotics they started Saturday should cover it either way. The breathing tube is still in but he's been doing better when they try to decrease the settings so if he can pass another few weaning trials today they might remove the machine tomorrow. We're hopeful that will be the case but we've heard that promise before so we're not holding our breath (pun intended).

Overall, Josh is holding his own. He's still on some sedating medication so he rests well. While he looks sweet cuddling with his monkey I really miss his sweet baby personality.



Hopefully now that Ba can watch over him, he'll start improving by leaps and bounds. Rest in peace, Stan.

New Heart Day #4

Well, we had an up and down kind of day yesterday and that theme is continuing today. . Josh wasn't able to maintain his oxygen saturation levels with the lower ventilator settings and so they weren't able to remove the breathing tube. His chest xray just showed a little bit of edema and a lot of atelectasis (air space collapse). They didn't see any signs of pneumonia but he is having a lot more secretions so they sent a culture just in case. So he had a lot more chest therapy and some tummy time to try to open him up.

 

For the chest physical therapy they tap on him with a plastic cup which he actually really likes, but they also tuck a vibrator under his blankets to try to jar all the secretions loose. Josh doesn't enjoy that very much but now has his own bright pink vibrator which we find hysterical. The nurses tell us they order the vibrators because they're much cheaper than the medical vibration devices but they do have to have a protocol to throw away the wrappers before they bring them out of central supply because evidently they are quite suggestive.

Even with all of that, his color yesterday was just not great and he just couldn't get his lungs to cooperate but this morning we thought he looked much more like his normal baby self.

 

But, now this morning he's running a low grade temp and he has repetitive periods of low oxygen saturation (sometimes down to the teens which is excruciating to watch). The repeat chest xray still doesn't show any signs of infection but they're sending more cultures and started some broad spectrum antibiotics just in case. They think the fever and his low oxygen levels are just because he can't expand his lungs well enough to keep all the spaces open but they're also doing a STAT echo now to make sure there's not a problem with strain on the vessels in his heart or lungs. Either way though the breathing tube stays for another day so they had to retape it so it stopped rubbing the same spot on his lips. Unfortunately he seems to have inherited his mother's pale, sensitive skin and the tape on his mouth left him very red. So they also changed the bandages on his incision so we were able to see his scar for the first time.

 

Overall it doesn't look to bad and since it won't grow as he does, eventually it will be just a small line on his chest. We're working on some kind of cool story that he can tell the ladies about the source of his scar.

So, things aren't great but they still could be worse. Hopefully in the next 24 hours they'll swing in the right direction. We could use some good news.

Scott's dad is in and out of consciousness but he seems to be comfortable and they've been able to talk to him some today. It's been hard for Scott to feel like he should be in two places, but we know he's where he needs to be right now.

When it rains......

It pours, seems to be our new mantra.

Josh did well yesterday but was a little restless as they weaned off his sedation. Turns out he's not a fan of all the various tubes and wires or that the nurses want him to lay on his right side. In order to keep their babies from pulling out their tubes and to avoid restraints they weigh down their limbs with stuffed animals. So it's a good thing Josh has lots of furry friends.



We had a visit yesterday from the child life specialists so now we're "official" and have his name on the wall above his bed. It's a small thing but it really generates a sense of community among the parents. It's an open unit so you can't help but witness other people and their baby's struggle while coping with your own. We have met many other amazing parents who have such fortitude.



The good news is that today we've been greeted with two little eyeballs that we haven't seen since Wednesday morning. He's still pretty groggy but after they take his chest tube out this morning they'll turn off the constant morphine infusion. Provided that all goes well they'll be able to remove his breathing tube later this afternoon or evening. Once those are out we should be able to hold him so we are crossing our fingers that his lungs cooperate.





In sad news though, Scott's dad is doing very poorly. He was enrolled in hospice yesterday and is declining quickly. Thankfully here in Ann Arbor, we're already half way to their home outside of grand rapids. So, Aunty Em has come to keep me company and Scott has left to say goodbye to his dad and give his mom support. They've been married almost 61 years and as attached as we are already to Josh, I can't imagine losing your life partner. So if you could all extend your prayers to include Stan and Phyllis we would appreciate it.

New Heart Day #2

One tube down, 7 more to go.


Josh was an excellent patient yesterday and accomplished his goals of resting and peeing more. They were able to wean off the dopamine and he kept his blood pressure up all on his own which is important for moving forward. Since his blood pressure was better overnight they were able to give him a lasix infusion to pull more fluid off but it didn't do draw off quite enough so that means another day with the breathing machine and chest tube. They did remove his Foley catheter though and start him on some feeds through his nasogastric tube so those are steps in the right direction. They're also weaning down his sedation today so we've actually seen an eyeball or two however briefly. Hopefully tomorrow will be the big day when they can remove the breathing tube and chest tube. Those will be big steps because he'll be able to eat more then and more importantly to us right now, we'll be able to hold him. We are both having significant snuggle withdrawal since we essentially haven't put him down for the seven weeks before this.



In pictures here he looks about the same this morning, so here's a link to some pictures we had taken last week before the scars, tubes and wires.


http://piankiphotography.zenfolio.com/p677782675

New Heart day #1

Sorry I didn't post again yesterday. We spent the afternoon sitting with Josh and the weeks of fatigue and stress caught up with us. After a good but lonely night's rest without him we're feeling better.

As I said before Josh's surgery went exceedingly well in that his anatomy was very favorable for a quick repair. While this minimized his time under anesthesia, the amount of blood transfusions he needed and his time on the bypass machine, it was still a lot for his little body to go through so now we're seeing how he does with the after effects.

People ask me all the time if my medical background makes this easier. I would say yes and no to that. It's certainly less intimidating to walk into this......



To find your baby hooked up to:
a nasogastric tube
breathing tube
chest tube
cardiac pacer wires
heart monitors
2 peripheral IVs
a femoral artery catheter
a central line
and a Foley catheter.

Please try to disregard the bloody bandage and see instead that my beautiful baby is smiling around his breathing tube.





With his morphine drip he's resting comfortably despite all of the extra appendages.



But my background also puts me in a hyperalert mode for all of the various complications that we could now face. When you work in a large academic medical center you always take care of the patients that are so complicated that no one else can care for them and it completely skews your perspective. So far I'm cautiously optimistic for Josh. He's having trouble keeping his blood pressure high enough. It's likely due to the fluid shifts happening in his body as a result of the extra resuscitation needed with the cardiac bypass, but the pain medications and blood loss also play a role. Currently he's on a dopamine drip for this and has also been given a lot of extra fluid.

So by last night he was starting to look like a marshmallow baby.......





This was expected and by this morning he had gained an entire pound. Today though they have been treating him with diuretics and he's already starting to look more like himself again. So his goal today is to rest and pee (every man's dream day right?) and when he's back at his dry weight they'll consider removing the breathing tube so hopefully that will be tomorrow or the next day.

He's also had some problems with bleeding from his chest tube and surgical incision. This is also not unexpected since he received a fair amount of blood thinners during his surgery. That also seems to have improved this morning and his blood counts are stable.


But you can tell underneath all this that he's still our sweet baby who likes to cuddle with Rico the monkey and sleep with his arms all splayed out.




Overall, his doctors are pleased with how he's doing and we're relieved that he's doing so well. The many texts, calls, emails and status updates from yesterday have all meant so much to us and certainly made the day easier so thank you all for your love and support.

go, go gadget heart

Well, I can't say that we slept all that well last night but Josh thankfully was oblivious to what awaited him today.



His only complaint this morning when we woke him up was that he felt it should be time to eat and his pacifer was a poor substitute. Despite the fact that he was terribly hungry, Josh was quite the flirt this morning showing his toothless smile to all the nurses and doctors. I will say he was looking quite cute in his snugglesaurus jammies.



Well all of his charm and the many prayers said on his behalf must have worked because his surgery was over in about half the time they anticipated. Dr. Bove was able to recreate the septum with a piece of the tissue from around his heart and with the new patch it started working beautifully as soon as they took him off the bypass.


Hopefully his postoperative course will go just as smoothly and they'll be able to extubate him soon. We're still waiting to be able to see him and will try to post again later today.