Dealing with Chronic Lung Disease

It's been a crazy week at the Sanchez household.  Feeling again like I am drowning in sickness.  The kiddos have been coughing (nothing new) but a week ago, it started interrupting Marco's sleep again.  So there we were again, pulling out the nebulizer and doing late night/early morning treatments.  We finally made it to the doctor on Tuesday morning, and sure enough wheezing, and now his 2nd (or 3rd) round of prednisolone.  He was a little bit happier in the middle of the week but still having lots of wakings at night. He has been sleeping in the swing for part of the night and then ends up on daddy's chest or our bed.  He has also discovered how good it feels to sleep on his tummy, making me very nervous to let him do this in his own room.  He has been very congested as well and just plain mad at times, and lots of crying in his sleep.

On Thursday, we drove an hour to Oakland for Sofia's ENT appointment.  Our pediatrician and pulmonologist both agreed that it was the next step since she does not always respond to steroids and albuterol and continues to wheeze all the time.  She had a laryngoscopy done to check for upper airway blockages.  Not fun to watch at all.  She was swaddled on this board and then had a thin tube (camera) down her nose.  The whole procedure took a little over a minute but I was a nervous wreck and she hated it.  She gave everyone dirty looks afterwards.  The good thing is that everything was normal, and her chronic wheeze continues to be attributed to chronic lung disease from being born at 25 weeks and being on the ventilator for 6 weeks.  That evening I could tell her wheeze and cough were getting a little worse and sure enough on Friday morning her respiratory rate was pretty high.  She threw up the first bottle of the day.  I did albuterol every three hours, she responded in the morning and was able to keep her mid morning bottle down.  She threw up again around 1:30pm and then took a long nap.  Around four o'clock, I had to wake her.  She ate and threw up again.  At that point, I began to panic a little bit.  Her respiratory rate was in the 80's and she was not herself.  All she wanted to do was sleep.  She had a fever of 102 which ibuprofen quickly brought down but after talking to the advise nurse and the on-call pediatrician, we were advised to take her to the ER.  This is ER visit # 2 with Sofia after her admittance in January for RSV.

I stayed home with the boys and Isabella while Daddy and Sofie headed to the hospital.  She was observed for a few hours and her chest x-ray showed early stages of pneumonia.  We are so glad we took her in and caught it early.  She got a shot of steroids (again) and an antibiotic.  She was released and seen again on Saturday.  She improved a bit but still requiring albuterol, and just as her rash was beginning to heal from antibiotics a couple of weeks ago, a new rash is well underway.  The probiotics aren't helping that much and it breaks my heart to have her go through so much.

Marcos and Carlos continue to cough and I won't be surprised if we find ourselves back at the doctors office sometime before their Thursday appointment for their Synagis shot.

Not really sure how we are getting thru each day on such very little sleep, but we are.  It feels like Isabella has been eating pop tarts, pizza and fast food all week.  Somehow she has made it to school every day.  Each night, we hope for a good night, but when you have three with a chronic cough, chances are one or two, or three will be up coughing and wheezing.  We continue to pray for good health, new lung tissue and mostly strength.   I will admit that sometimes I close my eyes and ask God for at least 4 hours of consecutive sleep.  Hopefully tonight is the night, and if not...I know God will continue to watch over me when taking care of the kiddos tomorrow.

10 month update

On March 17, the babies turned 10 months (adjusted age: 6 months, 2 weeks and 4 days to be exact!! I was cuddling a baby that morning at around the time they were born (4am) just thinking about the day they were born...

Weight Check
Carlos-13 lbs. 9 oz
Marcos-14 lbs. 14 oz
Sofia-14 lbs. 4 oz

All three are smiling and laughing and are quite ticklish.  All three are thriving and all of their doctors are so happy with their progress.  We had our first developmental follow up appointment on February 25 with our NICU and it went great.  I was a bit nervous but was happy to hear all their positive comments.
I realized that they can do more than I give them credit for.  I guess that comes with the multiples territory. My forgetfulness and/or lack of individualized attention and time.
All three are reaching for things, tracking big and small objects, holding toys, starting to transfer from one hand to the other....All three can roll from their tummy to their back, and with a lot of encouragement they can roll from their back to their tummy.  It doesn't happen too often but I know that they can do it. They are still figuring out what to do with their arms and tolerating tummy time more and more each day.  Sofia is able to move her arms and legs while on her tummy.  She is very curious and wants to touch everything.  Everything is so exciting to watch.  They can be entertained for a few minutes with different toys and they are starting to sit on their own for a few seconds at a time. We have lots cooing and some babbling, they definitely let us know when they don't like something.  They are getting better at solids each day.  Sofia is definitely more alert than the boys and wants to grab everything in sight.  They are receiving physical therapy once a week and our PT is very optimistic about their development and progress.  She is happy with their muscle tone and movement so far.  As of today, she has no major concerns and is very helpful in explaining that micro preemies often have their own timeline and how they often do not follow developmental milestones in order.

Unfortunately, we have been dealing with lots of sickness since the beginning of the year and Sofia's hospitalization for RSV.  This includes lots of wheezing and coughing disturbing everyone's sleep.  We had gotten to the point where ALL three were sleeping through the night but now that awful cough seems to wake one, two sometimes all three at around 2 or 3 am.  Mommy and Daddy have been trying to juggle everything plus quite a few doctors' appointments, breathing treatments, and inhalers with little sleep.  Marcos also has a bad case of thrush that lasted way too long and Nystatin (medicine prescribed) did nothing.  Just this week we were prescribed Fluconazole and I am praying this gets rid of it for good.  Poor guy screamed each time his cheek was swabbed. Never did I know I would become such an expert in administering medicine.
Ending on a positive note...Grandma and Grandpa got the trio the triplet table and on they tried it out on their 10 month birthday!

We are so proud of Isabella for being such a great big sis.  She has become such a good helper and our official diaper stocker and often does her chore without being reminded!

9 month update

A brief update...

We have all been sick!  Big sis had pneumonia last week and spent five days with an on and off fever, terrible headache, earache, and cough.  She stayed in her room for days.  Thank God she can be entertained by watching movies. All she wanted was some cuddle time.  She was lucky to get five minutes here and there because the trio has also been sick.  Though they did not swab for RSV, the doctor is 99% sure that this is what they have.  Possible that Sofia had not fully recovered from the first time.  Awful cough, lots of wheezing, nebulizer treatments and inhalers for everyone and 2nd round of prednisolone for Sofia.  Daddy was sick, grandparents are sick and of course now it's my turn.

 I've had my moments of weakness and moments of anger.  Why do things have to be so difficult? Why do I have to administer so much medicine to my precious babies? Haven't they been through enough? Why are they sick again? When will this end?  Is this what I have to look forward each winter?  

It is the saddest thing to see a baby cough so much that they end up throwing up.  And even more sad, Carlitos's voice sounds almost gone, meaning when he cries, I can't really hear him.  That sure does not help me sleep at night. Did I mention that Marcos also has a bad case of thrush?  It's almost gone but I've been giving him medicine for over 7 days now, having to swab his cheek four times a day.

RSV has been tough.  We were warned about it and have known that it can be deadly to a micropreemie.   The only place the babies go are doctors' offices.  We wash our hands and sanitize often.  I am doing the best I can.   I really am.  Big sis is constantly washing her hands and she does understand why and everything but she is five!  It's really tough to keep her away from the babies sometimes and having three babies makes it tough.  I can't keep my eyes on her at all times. Thank God for synagis.  According to the doctor, these are mild cases.  All three sat in the high 90's, meaning no hospitalization.  There has been concern for Sofia's rapid breathing.  Her respiratory rate is often  in the 60's and she may need to see a pulmonologist.

Today, the babies had their 9 month check up.  Of course they are developmentally behind...but each time I hear it, it gets to me.  It felt like I answered "no" for every question I was asked.  So to wrap up our long appointment, our doctor said they are lagging behind even for a 4 month old.  She did have some great things to say, they are smiling and laughing and squealing and grabbing and cooing and babbling and tracking...but their gross motor skills need a lot of work.  She didn't even think they should start solids yet until I told her that Sofia watches me eat like she wants some and that Marcos really looks like he enjoys eating his medicines.  Another thing that is worrisome is that Carlitos's weight gain has reached a plateau.  We have been so lucky in the gaining weight department that I'm kind of in denial.  Sofia now weighs more than him.  It's possible we may have to fortify again to add extra calories if he doesn't gain this month.

Their weights

Carlos: 12 lbs. 14 oz

Marcos: 14 lbs. 4 oz

Sofia: 13 lbs. 6 oz

A couple of milestones

Marcos has found his feet and can roll from his back to his tummy. 

Sofia is holding her bottle more and more and starting to sit unassisted for a second or two.  She has also been cluster feeding at night, eating very frequently from 6pm to 9pm, taking about 12 or 13 oz in small increments during those hours.  Tough on mama but she has slept from 9 to 6am two nights in a  row!! Big!!! Now her brothers need to get on that schedule.

We have the trio's first follow up appointment with the NICU clinic next week and I must admit that I am a bit nervous on what they will say but I am looking forward to seeing some of the doctors that were in the delivery room when they arrived.

Great morning!

Daylight savings started yesterday.  Being from AZ, the only state that doesn't participate, it is a pretty crazy concept for us.  The day started a little out of whack, with us not really knowing what time it was and the kids, all 4 of them, waking up around the same time.  So glad it happened on a Sunday and not a weekday.  The day dragged on and on.  To me it felt like it should be later than it was. Daylight savings or not...I think we are turning a corner, reaching a milestone!!!! The boys had a bottle around 6:30pm, and did not need another one until 1am!! 1am!!  And I think they were both asleep by 8:30ish last night.  Sofia is still getting her tummy aches (gas/colic/who knows) but she took a good amount around 8ish and also lasted til 1am!!! We are so very ecstatic!! It gets better. Then after the 1am feeding and lots of burping, they all went down and started waking at 6am!! 6am!! I am doing a happy dance! I was waiting for them to get up, I even pumped prior to them waking! And all three slept in their cribs, the whole time!

We've had a hard time getting them to sleep on their backs so they have all been sleeping in the 

Fisher Price Newborn Rock n Play Sleeper...it looks like this:

But last night, they liked their cribs.  They looked so cute, three babies, three cribs.  And to top it off,big sister woke up in a good mood.
Her sweetness is often hit or miss these days,but it was a very pleasant morning.