Never a dull moment

So yesterday was quite the day.  It started as a somewhat normal Saturday.  We had finally all had a relatively decent nights' sleep all under the same roof.  We were working on getting in the rhythm of all being home together.  Chris went to Krav Maga while I went through the morning routine of getting the girls going.  There were a bunch of additional tasks related to Mireya's health.  I had to draw up her meds and make / answer a few phone calls.  I was feeling like our homecoming had not been going great, so I was trying to manage that.  The cardiologist on call that we had talked to Friday night at Children's had requested we be seen by the pediatrician Saturday morning, so I had made an appointment.  I spent the morning getting ready - breakfast for all of us, putting Sanders out, meds for Mireya, getting both girls changed and dressed, and getting myself presentable enough to get out the door.  By a minor miracle, we made it in time for our 10:15 appointment, but not without a lot of chaos in getting out the door.  The house was a mess and I had to drink my coffee on the go. There were several things I had left undone, thinking we'd be back in an hour to get going on every thing that had been left undone during our hospital stay.  This is where I went wrong....

Feeling good

We were so excited to come home the day before Thanksgiving.  On Monday of last week, it looked pretty good that we'd be home in time for the holiday.  It had been a pretty packed hospital admission with very little of the down time we had experienced with Hope.  I had expected to have some time to get some things done on the computer, but our days were filled with tests, specialists, and discussions related to her procedures and then discharge.  Things went as smooth as they possibly could.  By Monday afternoon, there were a few tests left we needed to have done and she needed to show she could eat.  It felt like Mireya was ready to get out of there as well.  Monday night, she screamed every time we tried to get her settled in her room.  The nurses had to take her for half the night and neither of us got any sleep.  By Tuesday, everything was checked off and we were cleared to discharge on Wednesday, pending one blood test.  We were ready to go.


Tuesday night was better than Monday, though I wasn't crazy about our nurse - she wasn't great at communicating and had to wake me up several times overnight.  At one point, she woke me up to ask me when Mireya was going to eat in the middle of the night.  I don't like to wake her, so I didn't have an exact time, so I said 4, maybe 5.  She said ok, I'm going to come get her at 4 to give her a bath.  What?  Who wakes a baby up in the middle of the night to give her a bath?!?  But I was exhausted, so I didn't argue.  We waited around most of the day on Wednesday, but finally arrived home at 4.

Ready to go home!

After a long day, we're finally out!

What is happening???

Thanksgiving

It was great to be home, at first.  By Wednesday night, I was already starting to wish we were back in the hospital.  Mireya was very fussy, crying this heartbreaking little scream of pain.  We had a terrible night Wednesday night - I probably only got an hour or two of sleep.  Thursday was better.  We traveled to Chris' family in Narragansett, RI, with clear instructions that no one was to touch the baby. We were starting to adapt to her fragility.  She didn't seem as fussy and was eating well enough.  

Friday was another story.  It got worse and worse as the day went on.  First, she refused the bottle and would only eat from the breast.  Then she started to cry while nursing, at first popping off every few minutes to cry but eventually getting to the point where she wouldn't even start.  This was traumatic for me, hashing up old memories of Hope.  We'd try to get her to eat, and she'd just let out this awful scream.  We had sort of come to the conclusion that it might be reflux, so I ran out to the secondhand store and bought a Rock n Play for her to sleep in.  We discussed going in to the pediatrician, but I was pretty sure our pedi was not in and couldn't bear to explain everything to yet another person.  Finally, after a long day of fighting to get her to eat, I was starting to fear she was slipping in to dehydration.  Her fontanel (the soft spot on her head) was depressed and she was not making a lot of wet diapers.  It got to be 8:00 and we needed to make the decision whether to administer her lasix or not, a drug used to get extra fluid off, important post open-heart surgery.  This would clearly dry her out too much, but we didn't have permission to hold it.  We decided to call the hospital and talk to the cardiologist on call.  He asked us a bunch of questions and agreed it was a good idea not to give her the Lasix.  He told us to try to feed her again and he'd call us back in an hour.  If she had a good feed, we were to see the pediatrician in the morning, if not, we were to go in to the ER.  She had a pretty good feed (still wouldn't touch a bottle) and we decided she would be ok till morning.  Overnight, she had a few more good feeds.    She was quite comfy in her new Rock n Play and slept great for the first time in days.  So great that I had to wake her to feed.  While this is how things had been pre-surgery, it was not how things were post-op so it was scary to me.  I woke up with a start and was almost afraid to go in her room, like a brand new mom who had a baby sleeping through the night for the first time.  Of course she was fine.

Hope in the ambulance

Reya is not impressed

So as we headed to the pediatrician, I was feeling like she was on the road to recovery and he would tell me to continue to keep an eye on it.  Boy was I wrong.  He asked me to start explaining what was going on as he put a sat monitor on her.  I didn't even get to finish my explanation, when he exclaimed "55!  You need to get to the hospital right now.  I'm going to go call an ambulance!" and ran out of the room.  She didn't look like her sats were 55. I was kind of bewildered and started to wonder what I was going to do with Hope.  I felt like this was an overreaction and that I would be fine to drive her in.  It was Saturday morning and traffic was light so I felt like calling 911 was a little overkill, but it was too late, he had already called the ambulance.  The nurse also seemed to think he was overreacting.  Of course, to be fair, this is not the girls' normal pediatrician, just the one who happened to be on call.  His overreaction caused Mireya to start screaming, which only makes her shunt her blood through the large VSD (hole between her ventricles) making the oxygen flow to her body even lower.  I tried patting her to calm her and he yelled at me to stop patting so we could get an accurate reading, even though the patting would actually help the reading.  A few minutes later, 6 paramedics showed up with two ambulances.  It is all a little bit of a blur.  They hooked her up to their much more sophisticated monitor and it seemed a little less alarming.  They decided she would ride in her carseat and Hope would ride on the stretcher.  I'd ride on the side.  While I thought Hope would freak out, she did quite well.  The EMTs were so calm and so good with Hope.  They gave her a teddy bear.  I think she thought it was a fun adventure.  When we started moving, she looked at me with wonder in her eyes and said "Weeee".  They were good with me, too.  Very kind and caring.  There were a lot of questions asked, and because Mireya's heart condition is on the rare side, I'm not quite sure they had full understanding of how her heart works or the details of her repair. But I got my first ambulance ride out of it, so there's that, right?  One more life experience to check off the bucket list.
 

Looking pretty awful

When we arrived at the hospital, things were definitely urgent, but far less hysterical.   A nice nurse took Hope to get some milk and a snack so that I could focus on Mireya.  Chris showed up shortly after we got there.  They wanted to run a bunch of tests, put an IV in, do a chest x-ray, etc.  All of these things pissed her off royally.  As she became more and more pissed off, her condition deteriorated.  Her sats dropped into the 40s at times and she became grey.  Eventually she got so tired, that she passed out.  When she finally stabilized, it was time to decided where she'd be admitted - Cardiac ICU or the step-down unit.  They determined that her needs were too great and she would benefit from the one-to-one care provided in the CICU.  In so many ways, this was better for us, and I knew it would be better for her because it is a much more restful place.  At this point, Hope had been returned to us covered in stickers.  The child life specialist brought her back to us with toys and a balloon.  She was happy as a clam, amazing, since at that point, it was well past lunch time and nap time was looming.  Again, this was just another adventure in Hope's world.  The ER nurses helped us order lunch to be delivered to the CICU.

Once we got upstairs, more tests were performed.  More needle sticks, but she was so dehydrated, she had nothing to give.  They ended up having to do an arterial line as a last resort, but it's good because they shouldn't have to stick her for anything else now.

Meanwhile, Hope was entertaining the whole waiting room in the CICU with her antics.  She was singing and dancing and chattering up a storm.  Lunch came, but she was too busy entertaining to eat, lol.  This kid is a riot and I think she has been put here to make people smile.  She has made people smile since the day she was born.  We're so lucky she's ours.  Finally, Chris' mom showed up to take Hope home for a nap.

Feeling more like herself

Eventually Mireya settled down and was stable enough to eat.  I already saw a marked difference.  She was comfortable and seemed much more interested in eating.  She still wouldn't take a bottle, but at least she was willing to nurse.  She was starting to look a whole lot better and we started talking about transferring to the "floor" (the step down unit).  We tried bumping her down from 2L of O2 to 1L, the requirement for the floor, and she didn't tolerate it.  They also had to do a swab to make sure she didn't have any viruses.  In the meantime, she was put on "precautions", meaning the nurses and doctors have to suit up in masks, yellow gowns, and gloves to care for her.    

We decided I would stay since she could not be trusted to take a bottle.  We had dinner.  When we came back she was sound asleep, so we decided that we would go home so we could see Hope before she went to bed, picking my car up at the pediatrician's on the way home.  I'd take a shower (I hadn't showered since Thanksgiving morning),  and gather some stuff to take in to the hospital, since I literally went to the pediatrician with nothing but a cup of coffee and my diaper bag, then head back in by 9.  I never did get to drink that coffee...

Middle of the night selfie.  

When I got back things were calm, she had a good feed, and then she fell apart again.  She started screaming in pain and it took the nurse and I awhile to get her settled.  She went down around 10 and was awake again by 12.  I fed her, and it wasn't nearly as good as it had been.  She struggled a bit and again started screaming.  I was able to get her settled myself, but somewhere during the night shift, the nurse had to turn up the oxygen to 3L.   Once the O2 was up to 3L, she settled out and had a great night.  I also slept reasonably well, considering I am sleeping on a glorified bench in the back of the room.  At 4:30 they came in to do a chest x-ray, to make sure her lungs were clear.  She also got some meds and her middle of the night snack.  She fell right back asleep, and so did I, and slept until 8:15 or so, when they came in to examine her.  With the exception of the chest x-ray, this is very similar to what a night at home would look like, so hopefully when we do go home, she'll be able to resume sleeping at night.   We have a similar plan in place for tonight.

Today was all about recovery.  We let her sleep as much as she wanted, but we also made sure she got as much to eat as she wanted.  She nursed well in the morning and both Chris and I were able to feed her a bottle over the course of the day.  She got close to a normal feed on her last bottle, so that was promising.  She also got a blood transfusion.  Her hematocrit levels were on the low side, as were her O2 levels, even on 3L of blood.  By giving her a transfusion, it gave her body a boost, increasing blood flow to the body and increasing her oxygen levels.  She has benefited greatly from this transfusion.  It started around 10, and by 11, her O2 levels were back up to the 90s.  We were able to wean her slowly from 3L of O2 to 2L, to 1L, to 1/2L, to completely oxygen-free.  She has been off the oxygen since about 5:00 and is doing reasonably well.  Apparently the need for blood transfusion is not uncommon in kids like her, so this may not even be the last time she receives one.  The goal for tonight is to eat and maybe get her off the iv fluids.  

Her blood transfusion - thank you blood donors!!

Her monitor.  This is from today, so a pretty good reading

Her trends - the bottom line is her O2, the top is her heart rate.  Cool to see how they are in sync.  O2 levels go up, heartrate goes down and vice versa

So overall, what happened?  Likely it was multifactor.  The good news is that most of the scary stuff has been ruled out.  She had an echo, which looked to be clear.  They swabbed her for all the major viruses like RSV, the flu, etc and all were negative.  When she was struggling at home, I found myself wondering if we had been discharged too soon, but the more I have reflected upon it, the more I know this is not the case.  The number one factor here was likely the acid reflux.  We would not have known about that until we started regularly lying her flat, which didn't happen until she got home.  She is always propped up in the hospital.  So we got home on Wednesday and put her down to sleep in her crib, flat on her back.  This allowed the reflux to start brewing.  It makes sense now that we had a hard time getting her to sleep on Wednesday and Thursday nights.  She was incredibly uncomfortable and was trying to make it known.  The reflux started to snowball and it started to be uncomfortable to eat, leading to first refusing the bottle, then struggling at the breast.  By not eating, she became very dehydrated, very quickly.  They suspect that she is fluid sensitive.  Her lower hematocrit levels were likely due to the dehydration, but on a baby whose oxygen levels are already in the 80s, she may sometimes need a little extra help getting blood to the body.  Finally, we were able to witness firsthand what happens to her sats when she gets upset.  The open VSD causes her to shunt her blood back and forth between the ventricles, which causes a drastic drop in her sats (likely what happened at the pediatrician, in addition to already being low due to dehydration).  Yes, some of these things could have happened if we had still been inpatient, but the biggest factor, the reflux, would not have reared its head until we got home.  In fact, Chris had a good point this afternoon - perhaps she has always had reflux and this is why she's never really liked being put down.  All in all, this whole experience is a great reminder as to how medically fragile she is.  This has been easy for me to forget, given we had her home as a "normal baby" for 10 weeks and due to how much bigger and stronger she is, compared to how Hope was.

This could have been a really scary situation.  I've come to expect anything from my girls, so I remained calm, even when the pediatrician went into a frenzy.  Both Chris and I have become familiar with most of the medical jargon used in the cardiac wards and that has helped us feel more comfortable in most medical settings with our kids.  We are usually more versed in our daughters' medical conditions than many who are actually in the medical field.  I think this has helped me feel more comfortable in urgent situations regarding my kids' health.

I will say Friday was one of the more stressful days I've experienced as a mother.  In some ways, I found this day as stressful, and maybe even more stressful, than surgery was.  When the girls were in surgery, I knew it was out of my control and that they were in the hands of a confident and talented surgeon.  For us, it was our child's life, for him, it was another Wednesday.  I found a lot of comfort in this.  On Friday, it was completely in my hands, and I didn't feel confident at all.  I stressed most of the day about whether she was ok and what to do.  I wondered if it was normal.  I had so many things to do around the house, and couldn't focus on any of them.  I kept checking her diapers, which were light (not good!).  I kept rubbing my hand over her head, feeling for the depression in the fontanel and trying to determine if it was more sunken than it had been.  My anxiety levels were high and there were a lot of tears.                

But perhaps the worst feeling I have had at all is that I had not been a good mother through all of this. Should we have skipped Thanksgiving?  Should we have taken her in, at least to the pediatrician, on Friday?  Should we have discontinued the lasix sooner?  Should we have taken her to the ER Friday night, before it became much more urgent?  The way the pediatrician reacted, I certainly felt like I had not done the right thing and that I was the worst mother ever.

As always, my confidence was restored and my anxiety was lowered when we walked through the doors at Children's. This place never ceases to amaze me, and I have the utmost respect for every person who works in this hospital.  From the cafeteria workers to the cleaning staff, from the receptionists to the clinical assistants, from the nurses to the doctors, every single person that works in this hospital is amazing.  They are incredibly good at treating the whole family and making you feel included as part of the medical team.  The ER staff readily took Hope under their wing so that she wouldn't feel neglected or scared as a dozen people gathered around her baby sister.  Every doctor and nurse defers to the parent, completely aware that as parents, we are the best source when it comes to our children's medical condition.  Two quotes from doctors that helped restore my wavering confidence as a mom:  "You did everything right" and in reference to the fact that we believe this was reflux related "Parents are almost always right".  After the anxiety I felt and my encounter with the pediatrician, I needed to hear these things.    Since we came in yesterday, I have felt less stress than I was feeling at home.  I hope that this experience will help me to become even better at managing my kids' more complicated than average medical needs.  We are so grateful for this place

We also continue to be grateful for all of the support we have received.  The food has been amazing.  Not only has it kept us fed and will continue to feed us for a while, it has also helped to feed our army of helpers while we've been at the hospital.  And Hope has had so much fun playing with everyone who has come to watch her.  We'll never be able to find the words to thank all of you, especially those of you who we've changed plans on or who have been really flexible allowing us to work around how things were going here.  

Overall, my takeaway....always trust your mom gut, and when your mom gut tells you something is wrong, trust it, it's probably right.

Resting peacefully