Catching up

Mireya is not impressed

We've been pretty busy since Christmas.   Between running to doctor's appointments, caring for an infant with medical needs, and chasing a toddler, I rarely have time to sit down, let alone blog, anymore, though I've been meaning to for months. I've literally started this post 5 times and have been unable to finish, for various reasons.  As so many of you know, taking care of two small children all day is exhausting, especially when one of those children has extra medical needs.  I have so much respect for people with more than two kids, and even more so for parents of multiples. Since November, we have visited at least one doctor a week.  In fact, the weekly doctor's appointments probably started last May, so a year ago.  There have maybe only been a half a dozen weeks since we learned of Mireya's heart condition where we didn't have a doctor's appointment.  Add to that an active two year old that has play groups she likes to go to.   Busy!   About two months ago, there was a week where we had a doctor's appointment or visit from a medical professional every single day.  I felt pretty down that week, as it was a little too much, but mostly, it's just how our life is going right now.  I try to remind myself that it's not forever and how lucky we are to have doctors appointments to go to.  The alternatives are unspeakably worse.  

These two melt my heart with how much they love each other

I was so lucky that I was able to take the year off from work.  I don't know what I would have done.  I probably would have had to quit.  Like I've said in pretty much every blog post since diagnosis, the MAPCAs component really complicates things.  At this point post-op with Hope, life was pretty normal.  We were starting to drop specialists and were only going to the doctor once a month or even less frequently than that.  She was off most of her meds.  I was getting ready to go back to work.  While going back to work is finally starting to be on the horizon (more on that later), there is no way she would be ready to go off to daycare in a month, which is when Hope went.  Mireya seems to be adding specialists.  She is currently followed by cardiology, occupational therapy, otolaryngology (ear, nose, throat), genetics, nutrition, feeding, and we just added in gastroenterology in March.  It's a lot!  We are lucky, as she is not on a ton of meds.  We dropped lasix during her last hospital stay, so now all she takes is pantoprazole (for reflux) and aspirin for her heart, plus a multivitamin.    It seems like things are finally slowing down, though every time I say that, something else crops up.  Back in March, we saw cardiology, and he said he didn't want to see us again until June, when we have our next cath.  The following week we saw our pediatrician.  She didn't want to see us again until her regular nine month appointment, also in June.  We saw GI a few days later and weren't scheduled to see anyone until her next cath in June.  I thought maybe I could finally exhale and, now that the weather is getting nice, enjoy what is left of my maternity leave.  Well, a bunch of stuff cropped up.  A month ago, Mireya's sats randomly dropped into the 70s and that coupled with poor weight gain and blue feet, prompted us to visit the pediatrician two times in a week and then cardiology the following week.  Long story short, it was a fluke.  She had an echo and everything looks fine.  Three weeks  ago, while Chris was away on business, I accidentally pulled her gtube out at 9 at night - ER visit.  Then we all got colds.  A cold could be very dangerous for a baby with Mireya's condition and will often land them in the hospital.  I can't say I wasn't terrified.  Things got pretty bad Wednesday, two weeks ago, but the visiting nurse was coming on Thursday, so I thought I'd wait it out.  Then the nurse couldn't come, so I took her to the pediatrician instead.  Her normal pediatrician was not in, so we saw a different doctor.  This doctor leans on the conservative side.  He was the one that sent us off in an ambulance back in Dec.  I was pretty certain we'd be going to the hospital after seeing him, and had even packed a bag.  He wasn't exactly comfortable with her sats which were hovering in the upper 70s - low 80s, but he let us go home, with the condition that we come back that afternoon to recheck.  I explained to him that she is "permitted" to be in the 70s as long as it is not sustained.  When I went home, I emailed Dr Friedman to keep him aprised of the situation and make sure he agreed with the plan of action.  He responded with exactly what I thought he'd say - that low sats were not unexpected at the onset of a cold and as long as she stayed in the 70s, it was best to keep her at home.  I reported this back to the pediatrician.  Her sats hadn't changed.  He was slightly more comfortable (I suspect he may have read up on MAPCAs in the interim), but uneasy still, as her clinical presentation would result in hospitalization in a normal kid.  I assured him that I would get the nurse out the next day and would closely monitor her at home, letting him know if there were any changes.  Thursday night was pretty miserable as it was clear she was not feeling well.  The visiting nurse came out on Friday.  Her sats were still in the 70s, but she was clearly doing so much better.  Each day has been a little better since.  Of course Friday, i came down with the cold, but since I don't have time to be sick, it didn't slow me down and I was feeling pretty much normal again in a few days.  The nurse came out again the following Monday and her sats were back up into the 80s and she had gained 5 oz!  Then the cold came back, and once again, she was in rough shape.  She was coughing, which was causing her to vomit.  We went to the pediatrician on a Saturday just to check and make sure she was ok.  While the pediatrician said we did the right thing in bringing her in, there was nothing we could do but wait it out.  Somehow, by the grace of God, we got through it without going to the hospital.  At one point, we were looking at no doctor's appointments for over a month, but instead we only got two weeks.   She had her 9 month well visit this past Friday, which I don't really count.  So here we are on the eve of her next cath.  She had pre-op today, which we sailed through with no surprises.  Her lung function is down a bit, which really just indicates that it is time for a cath.  It is such a relief to make it to a cath without it being an emergency.  

To complicate matters, in addition to the cold, both Chris and I have each had our own little health crisis.  I have not recovered well from Mireya's birth.  I have had lower back pain on and off since she was born, with it getting pretty bad back in December, but with rest, it got better.  At the beginning of March, it came back, but this time, did not resolve with rest.  I tried stretching, that seemed to make it worse.  One night, the pain was so bad, I couldn't turn over in bed and when I got up in the morning, I couldn't walk.  I was having trouble dressing myself, picking up the kids, and doing anything around the house.  If I had had a cane, I would have used it.  That morning I called a chiropractor, who was able to see me later that day for an emergency appointment.  The chiropractor confirmed what I thought was going on.  My sacroiliac joint had locked due to a weak core, causing all the muscles to tighten and spasm.  She worked me over and got me to the point I could move again.  I was still in pain, but I could at least walk.  Each day, it improved a little bit.  I went back to her a few days later, on the day Mireya was supposed to get her g-tube and ended up in the ER instead.  Two more visits and I was feeling like myself again, though I still am not able to be as physically active as I would like and have earned myself a ticket into physical therapy.   I've been going twice a week for a month.  The physical therapist says that in addition to my SI joint being loose, which is a result of my ligaments being loosened by the pregnancy and breastfeeding hormones, that my inner core had essentially forgotten how to fire and we need to strengthen and reactivate it.  It has really cramped my style and has not been great for my quality of life.  I am a very active person.  This was so bad, I wasn't even able to do chores around the house.  I couldn't bend over to pick thinks up, I couldn't turn to my right side, I couldn't even put my shoes or socks on!  I was in better shape pregnant.  Forget any kind of physical activity, even swimming and the elliptical hurt.  My range of motion is fully back and I can now pick things up and turn to my side without any pain.  I have been able to swim regularly, so I am swimming 3 times a week.  I am also able to walk and use the elliptical.  I've been told no yoga.  My PT says I can run, but not to exceed my threshold, so if I have any pain, I am to stop.  So we are strengthening and it will be a slow comeback.  I'm finally back up to 2-3 miles at a time, and i even ran a 5k this past Sunday.  Recently, my PT just prescribed an SI belt to help hold my pelvis in place and i really think it is helping a ton.  I graduated from PT last week, mostly because she had done everything she could do.  She was proud of me and said I had made a ton of progress.  Like I said, this is 100 percent related to my pregnancy with Mireya.  My hips spread while I was pregnant with her.  They stayed spread for quite a while, but right around when my back started to really bother me, I also realized I was able to get my jeans over my hips again, meaning they likely shifted back.  This seems awfully coincidental that it happened at the same time as this back pain and both my chiropractor and my PT have confirmed this is the root cause.  I was starting to feel pretty good and then I tweaked it loading the plane to come home from Ocean City last week.  That set me back a bunch, but I'm starting to feel better again and even ran a 5k yesterday with minimal pain.  Unfortunately, I don't think it will truly get better until those hormones are out of my system, which may not happen until Mireya weans, which neither of us are in any hurry to do.  It's the only eating she liked until recently.  

When it rains, it pours.  As if having a two year old (who incidentally is potty training - more on that later), a baby with special needs, and a mama with a body that is completely destroyed by childbirth, Chris dislocated his elbow 2 months ago at his Krav Maga Martial Arts class.  This was so hard on all of us.  He was not able to care for Mireya at all for about three weeks, so I could not leave her with him.  He could care for Hope reasonably well, but could not throw her in the air like she loves.  And it's definitely cramped his style.  He hasn't really been able to work out at all and was in a sling for a good portion of his injury.  He has now been given the go ahead to resume normal activity and also just graduated from PT, where he was working on getting his range of motion and strength back.  He's doing pretty well and I know he's looking forward to getting active again.

Unfortunately, this is only my second post since Christmas so I truly am catching up.  There's just no time to write.  I'd love to do it at night, but in between bedtimes and sheer exhaustion, it just doesn't happen.  Hope has been in a very mama dependent stage, and almost requires I put her to bed.  This is hard because I also like to nurse Mireya right before she goes down.  It makes it really hard for Chris to help me, but we're finally back into a little bit of a rhythm where he at least gets her in her PJs and reads to her while I get Mireya settled.  

Baby's first Christmas

Since I haven't really updated since before Christmas, I'm going to try to recap all that has happened since then.  It may take a few posts because I am determined to get this up asap.  We didn't get many pictures on Christmas and when I look back I'm not really all that upset about it.  I was a frazzled, crazy mess and don't really care to remember myself that way.  We didn't get home until 5:30PM on Christmas Eve and while I was relieved to be home, everything felt very rushed.  On top of it, Mireya was not overly happy or comfortable.  She was refluxy and required being held upright during her feed, which ran for an hour, as well as an hour after her feed.  She was being fed every three hours, so it basically meant we could put her down for an hour every 2 hours.  It was exhausting.  We talked with our pediatrician and she agreed with us that maybe a bouncy chair would help her, so we went to our local consignment shop from the pediatrician's office and came home with possibly the best invention ever: the mamaroo.  They retail for about $250 and we scored one for $50!  We have gotten every penny's worth out of it, and I'm pretty sure we will be able to sell it for what we paid.  Christmas feels like a blur and in so many ways I feel like I was robbed.  We missed out on so many pre-holiday festivities and what we did get to participate in, I spent most of my time worrying about Miss Mireya.  My parents drove up for Christmas dinner at Chris' parents, that was pretty nice.  They stayed for a few days afterward and helped us out a lot as we adjusted to the new normal, which was so beyond helpful.  I don't know how we would have gotten through that first week home without them.  Things continued to be dramatic through the New Year.  The night before New Year's Eve, I went out for a glass of wine with friends, only to see Chris was calling me.  He had accidentally pulled the tube out.  The protocol for that was a trip to the ER :(. So I came home to hang out with Hope and he took her in.  That's one way of getting a daddy-daughter date.  

All cozy in her mamaroo.

We had a pretty quiet New Years Eve.  I took Hope to New Years at noon at the library.  She got some sparkling apple cider and we had a good time.  We went to my favorite Mexican restaurant for dinner (margaritas!) and then came home to relax and watch the ball drop.  Well, as the night went on, I felt worse and worse.  I got to see the ball drop, but a half hour later I was praying to the porcelain god, and not because I had had a fun New Years.  I spent the first day of 2017 in bed.  Seems fitting to say good bye to 2016 that way, and certainly didn't set the bar too high for 2017.  Chris got it the next day and we believe Reya got it in an upper respiratory form.  Hope had had it right before Christmas.  Fortunately, it was violent but short.  The year has more or less lived up to the standard set on New Year's Eve....lol,

New Years at noon

New Year's Eve at Jose's Mexican

We were grateful for a mostly quiet and mild January.  We were able to get outside a bunch and just enjoy being home.  I feel like I spent most of the month cleaning up form the mess of November and December.  On Jan 13, we went back to the hospital for Mireya's first post-op cath.  We were told to expect to end up in the CICU and that it could be a 5 day visit.  She was in and out in 2.  Everything went perfect.  It was beautiful.  I even took a picture of her numbers, they were so good.  We were home in time for the patriots playoff game, which we didn't expect at all.  Our visit was so short, we didn't even get to see any of our favorite nurses, or talk to some of the people we wanted to talk to (feeding, nutrition, lactation)

Playing outside on a warm January day

Little Reindeer

First time in the bumbo (which no longer fits!)

Big sister ready to go out in the snow

January

More winter fun

Resting peacefully the night before her cath

Look at those numbers!

Somebody was happy to get home in time to see the Patriots playoff game!

Party girl all dressed up for the SRR party 

After the mid January cath, we took Mireya on her first flight.  Hope got to ride as a big girl with a big girl headset for the first time.  She was delighted.  They both did great.  But life has been so hectic, The first time we've been up since was this past weekend, for a Memorial Day weekend trip to Ocean  City.  At the end of January, Hope had her annual cardiology visit, where everything checked out perfectly.  She has officially been cleared to do any activity she chooses.  She was a champ during the echo and ekg!  We also celebrated Christmas with the SRR family where Hope was the life of the party, dancing up a storm!  

Big girl ready for flight!

First flight for Reya

Checking in with cardiology

EKG time

Having her annual echo

February was another mostly quiet month, even if it started out kind of hectic.  We had plans to travel to NJ the first weekend of February for the Evans family Christmas.  The night before we were supposed to go, Mireya pulled out her tube.  It seemed that she had been nursing well, so we were willing to give her a trial, to see if we could ditch the tube, but it didn't go well at all.  I struggled to wake her at night to feed, she wouldn't take a bottle, even though it felt like we had made some strides a few weeks prior with the bottle, and it was just bad.  The visiting nurse came that morning and agreed that we needed to go get the tube back in, especially since we were traveling.  Meanwhile, Hope had some sort of bug and slept in until 1PM.  I had to wake her to take Reya in to get the tube back in.  I wasn't sure we were going to go to NJ until an hour before we left.  But we decided to go anyway.  It was Mireya's first trip away from Boston and my first time leaving New England since she was born.  It was great to get away and go home to NJ.  We had such a nice visit.  It was surprisingly lovely to celebrate Christmas in February.  Everyone was relaxed and not hurried at all.  There wasn't much traffic either, so another bonus.    We spent the rest of February hunkering down as we were hit with several big snowstorms.  It seems like every time I have a baby, we get epic snowstorms!  

"Look what I've got, Mama!"

It was nice to see that pretty face!

Dinner at our favorite restaurant in Philly - La Buca

Outtakes from the Evans Family Christmas

First happy meal

Cheering on the Pats at the Superbowl!  What a game and what a trooper!

The day after we came home from NJ, we saw the ORL doctor.  After doing a scope, he told us that her vocal cords were still compromised.  That, coupled with the failed trial from a few days before, was the confirmation that we needed to go forward with the g-tube placement.   I emailed Dr Friedman immediately upon leaving this appointment and asked him to schedule g-tube surgery.  This was one of my lower moments in Mireya's journey.  I was very sad to have to make this decision and mourned it for a few days.  My biggest fear was that our nursing journey was over.  I know now that I was wrong.  We have kept it up and it is something we both cherish.  A few days after this appointment, we had our first feeding team visit.  She really didn't show a lot of interest, so more confirmation that we needed the gtube. 

   

Trying to sit up

Getting ready for her first solids

Cereal

Two weeks later, on Valentine's Day, she pulled it out again.  It was clear that as she got better with her hands, this was going to continue to happen.  I can't even imagine having an NG tube with her grabby hands now!

The rest of the month was pretty quiet and uneventful.  My favorite memories of the winter were watching my kids bond.  As much as I am looking forward to going back to work, I am so beyond lucky to have this time at home with my kids.  Here are some photos:

Mutual admiration

Lovin on her baby sister

Lunch with my girls

First time in the jumparoo

Ready to play in the snow.  She was all excited until it actually came time to play in the snow...lol

Hope the mummy

Another trip in to the hospital to get the tube back in....sigh

Happy Valentine's Day from our favorite Italian joint

More feeding therapy

Avocados.  Wish I could say she liked them as much as it looks

My first baby

Playing with friends

Cruising in our pink bunny coat

"You want me to drink this?"

On the move and proud of it

We had some lovely warm days in February for which we were all grateful for.  It melted the snow and got us outside again.

Jumping is exhausting

We're so lucky to have this sweet kid in our life

Selfies with mama

My girls

Family time

So that pretty much sums up Christmas to February.  This was not one of my more cohesive writing pieces.  I really struggled, as there is just an overwhelming amount of content.  I plan to use the downtime at the hospital to catch up on March, April, and May, as well as an update from tomorrow's procedure.  Please keep us in your thoughts tomorrow as we head to the cath lab.  I am feeling positive and confident.  I am hopeful we will be home by Wednesday afternoon.  No surprises!