Another Bump In the Road

I jinxed us.  I will be refraining from phrases such as "we should have a pretty low key few weeks" for now on.  Over the weekend, Daniel started to get some slight congestion.  It was hardly noticeable at all, but we started taking precautions just in case.  On Monday night into Tuesday morning, the congestion became evident and things started progressing quickly.  Needless to say, I didn't sleep that night.  I noticed on Tuesday around 3am that Daniel's breathing was starting to pick up.  I closely monitored/snuggled him and noticed around 4:30am that I was starting to hear some wheezing.  Because we were told we might see a relapse of symptoms from the RSV as it died down, we decided to treat him as we had been instructed when we left the hospital.  But nothing seemed to maintain his symptoms and they continued to worsen.  

I began tracking his breathing and that's when I knew we were in trouble.  Daniel's breathing was at 73-84 breaths per minute.  Normal is below 60.  I called his pediatrician's office and was able to get an after hours appointment.  It didn't take long before they were calling Cook Children's again and letting them know we were in transport.  Cook's didn't like Daniel's vitals and required ambulance transport, but we had already left (phew).  But, this meant that as we got to the ER, we were brought right back to the triage room and they even had an ER room waiting for us.  After another long night in the ER, more tests and pokes, and a visit from his cardiologist, Daniel was admitted to the hospital.  His x-rays showed two areas of mass, which was believed to be one of three things- a virus, pneumonia, or his body manifesting further heart failure. He would need to be monitored while we awaited test results.  We got settled in our room around 1am and were all very tired (our amazing neighbor came over again so Mark could bring us a few things and visit Daniel).  By this point, Daniel had been on fluids, given antibiotics, and received an extra dose of his heart medicine.  He was already starting to turn a corner- in the right direction!  Yay.

Within the next 24 hours, we learned that Daniel had rhinovirus (basically, the common cold) and it put his body into further heart failure.  They also found early pneumonia.  So, he basically had a little of all three scenarios.  We stayed in the hospital Tuesday through Thursday and he was closely monitored before we were sent home.  Unfortunately, because his lungs were so compromised again, his surgery date has been pushed back to April 18.  His cardiologist told us it's just a vicious cycle at this point- he needs to be healthy to have the surgery, but he needs the surgery to stay healthy.  We're sad to have to wait even longer to fix his heart, but we are grateful for knowledgeable medical personnel who can help him and find the balance that his body needs.  We will continue to keep Daniel in isolation (he and I don't leave the house except for doctor appointments) and pray that he can continue to be healthy as he prepares for his surgery.  

With all that this little guy had gone through, he was still blowing raspberries and smiling for nurses.  His strength and attitude amaze and inspire me!

And, on a happy note: he's still growing!!  This should really help him to have a better recovery and be stronger for both surgery and the recovery.  Thank you again for your love and prayers!

The Life of Feeding

The past two weeks have been quite the rollercoaster!  The cardiology appointment I referred to in the last post did not go quite as happily as we'd hoped.  They redid Daniel's echocardiogram and x-rays since his RSV had cleared up so much.  Both showed that Daniel's heart and lungs were in about the same shape as when we were in the hospital.  The hope was that RSV had worsened things, but this was not the case.  The pressure in his lungs was still rather high and his heart looked about the same.  A possible second hole was also confirmed at this appointment.  So, Daniel's VSD (the large hole we knew about) is in the lower chambers of his heart.  He also has a moderate-sized ASD, which is a hole in the upper chambers of the heart.  The surgeon will decide the proper treatment for this on surgery day.  They will likely repair it or at least close part of it up.  Right now, it looks like the ASD may actually be helping to relieve some of the lung's pressure.  So, this might just be another blessing in disguise.

The cardiologist also expressed his concern for Daniel's weight and had us meet with a nutritionist.  If we couldn't get Daniel's weight up enough, he would need to have a feeding tube put in and possibly even be hospitalized until the surgery.  We definitely didn't want that if it wasn't necessary!  The nutritionist gave us a new feeding schedule to start which would give Daniel the maximum amount of calories from formula that would be safe for his heart.  She also had me stop nursing Daniel immediately (this was so hard for me emotionally) because it takes more calories than bottle feeding. But, she wanted me to continue to increase my caloric intake as well so we could mix it with the formula and add some more calories that way too.  So, feeding Daniel took over our lives!  Between pumping, feeding, and prepping for the next feeding, I felt like I only had a few hours every day to do anything else.

At Daniel's next weight check he had not gained the necessary amount, although he did begin gaining!  His doctors were still very concerned, but we still had our little celebration at home.  We were so grateful that he was at least heading in the right direction finally.

I spoke with his nutritionist that Friday and she was rather concerned with our progress.  She gave me a few specific meals to try and encouraged us to keep at what we were doing as best we could.  On Tuesday afternoon, I got a phone call from the cardiologist's office.  The cardiologist wanted us to come in first thing Thursday morning and meet with him and the nutritionist.  He didn't want to wait the full 2 weeks as planned to see Daniel.  I knew what this meant (feeding tube) and naturally was so worried.  But! Over the weekend, Daniel had increased his intake quite a bit!  So, we were very hopeful that it would be enough.  And, it was....just barely...but, it was!  We were overjoyed!!!  We left his appointment on Thursday feeling so much brighter.  I felt a huge stress lifted.  It had been the first appointment we left with good news in weeks.  Yay!

So, as long as Daniel continues to eat as much as he has been and none of his symptoms worsen, we should have a pretty low key few weeks as we prepare for surgery.  (I hope I didn't just jinx myself by saying that!)  The closer it gets, the more anxious we are to get on the other side of this.  I try not to think about it too much- the more I think about it, the more I worry.  But, we know it will be best for our little boy and we are so very grateful for the doctors and other healthcare providers who are knowledgeable enough to help him.

Thank you again for your kind words/texts, prayers, and love.  We have been showered with so many blessings, lots of help, and many, many prayers.  Thank you!  We just can't say it enough -thank you all!

Daniel's Focus- Gain Weight

We saw a lot of improvement this week! Yay! Daniel's oxygen levels stayed up and his lungs are sounding better! :)  But, he's still not gaining weight. :(  His pediatrician started us on a high calorie formula and I continue to eat enough for at least two people. Between the two, we really hope to get him back on track.  We'll have another follow up on Thursday. If he hasn't started gaining weight again his plan will have to be reevaluated because it means his heart is being too overworked.  Daniel also has his follow up with the cardiologist this week.  We're hoping to report all positive things next week.

As we've thought about the last few months, we feel so grateful and blessed!  It hasn't been easy (for those who don't know, Mark tore his Achilles' tendon just after my recovery from a not-so-routine delivery. He had surgery in December and was bed ridden.  That's a whole story in itself.), but we have felt and seen the Lord's hand and many blessings in countless ways.  Even just the timing of everything alone is a testament to us that our Heavenly Father is there and guiding us through it all. He has also blessed us with an amazing support system which we are also so grateful for.  Our testimonies of a Heavenly Father who knows us all and loves us have been strengthened, along with our eternal gratitude for families!

Here are a few fun pics to share:

First, a couple weeks ago, Maile decided to bring Daniel some toys and books and spend some time with him on the floor.  It made my heart happy!

Before School Dance Party...

You can see our happy baby is feeling much better...

These two have been such troopers through all of this.

 Love :)

Daniel's Story

There is so much to catch up on, which I hope to go back and do soon, but for now, we will use our blog to keep you updated on our sweet Daniel.  Here's the story for those who haven't heard and are wondering:

On Friday, January 20, we noticed Daniel was a little warm before going to bed.  Not enough to even be a fever really, just warm.  He woke up on Saturday morning and seemed his happy self, but sounded a bit congested.  As the day went on this congestion worsened, but he still didn't seem to be bothered by it.   But, that night around 8pm, things took a turn for the worst.  He started to act fussy and uncomfortable.  Around 2am we noted his breathing had become very labored and we began to really worry.

On Sunday, at 9am when they opened, I took Daniel to Urgent Care.  Upon arrival, we were pretty quickly sent back to the triage room.  When I opened Daniel's PJs for the nurse to get all his vitals, she immediately looked concerned.  She hooked him up to the machine and after taking a glance at it, walked out of the room and came back with another nurse.  I knew this was not good.  The next thing I know, we are being taken to a room, cultured for RSV, and quickly suctioned.  They got a fair amount out, but not as much as you'd expect.  Next was a breathing treatment.  Not to mention the constant visits of nurses (now three of them) coming in and out.  The breathing treatment seemed to help a little, but he was still breathing very hard and his oxygen levels (79-83%) were very concerning.  I asked if I could feed him since he could breath a little easier.  That seemed to help a little too, but again, not enough.  Next came the oxygen tanks.  After tank #1, they took him off and his heart rate immediately darted up and his oxygen levels plummeted.  This is when it was decided he needed to be taken to the Children's hospital for further evaluation.  

Cooks Children's wouldn't allow Daniel to be transported privately because of his oxygen levels so we had to wait for an ambulance.  Meanwhile, the RSV test came back positive.  He was now put in isolation.  When the EMTs arrived, they immediately noted a heart murmur and this is where the "cold", or RSV, became less of a concern.  Daniel was hooked up to machines, had an IV put in, and blood drawn.  They then put him in his incubator- a box that resembled a microwave- and we were on our way out to the ambulance.  That was the hardest part of the next couple days for me.  I could hear my baby crying and I couldn't do anything for him, but worse than that was seeing his little hand and feet pressing against the glass reaching out for someone.  And, I couldn't do anything.  That is a sight I will never forget.

Once we arrived at Cooks, we were met by a team of technicians, nurses, and a doctor all wearing masks, robes, and gloves.  Daniel was registered and the testing began.  EKG, x-rays, sonogram, more blood drawn, etc.  It was now around 2pm.  They told me they suspected a heart defect and were going to be evaluating him for a possible hole in his heart.  A couple hours later, or so it seemed, they came in to tell me they found a large hole in Daniel's heart and he was going to be admitted to the hospital.  We got up to our room at 6pm and were told the cardiologist would be in the next day to make a plan for Daniel, but that his hole would require repair.  It had been a long day and I knew it was going to be an even longer night.

Our sweet neighbor went to our house about this time and watched Joseph and Maile so Mark could meet us at the hospital, despite Joseph also being sick and all the nurses at the hospital guaranteeing he also had RSV if he had woken up sick.  We were so grateful for her and for the opportunity for Mark to be with us at the hospital for a few hours.  This was one of my favorite moments- Daniel and Mark's sweet reunion after our hard day.

Our home teacher and friends came to visit and gave Mark and I a blessing (Mark had already given Daniel one).  This brought us such great comfort and strength.

We met with Daniel's general care team and then the cardiac team the next day.  He was diagnosed with a large VSD.  Phase #1 of his plan is to get over the RSV.  Phase #2 is to stay healthy and allow his heart and lungs to regain some of their strength.  He will also have all testing repeated, plus some additional tests, in preparation for surgery.  Phase #3 is open heart surgery to repair, or patch, his VSD.  Phase #4 is a 6-week recovery, beginning with a 1 week hospital stay.

Everything is still a little surreal.  My mom flew up as soon as she heard and was here Monday morning.  We were so grateful to have her here.  I was able to hold Daniel most of last week and give him the extra attention and love he needs right now.  We spent a few days at his pediatricians office last week as his oxygen levels went down again and he started losing too much weight.  We hope to have a much less eventful week this week.  Our goal this week is to plump him up.  He's been struggling to eat so I have greatly increased my caloric intake to give him as many calories as possible at each feeding.  We are also giving him some formula supplements, although he really does not like that- Mark even tried feeding him with a spoon like the big kids.  It's been the most successful way thus far.

We have been surrounded by love, sweet messages, prayers, support, and so much more from our family and friends, and especially our ward.  We are so grateful for it all and have felt so loved and lifted through this.  In  hindsight, so many of our questions and concerns that we have had and asked from day 1 were answered this week.  Daniel is a fighter and has been patiently waiting for us to discover his needs.  We are so blessed to have his incredible spirit in our family.

We thank you for your continued prayers and love, and we will keep you posted through the next few months.  If you are local, please don't be concerned when you don't see Daniel and I for the next few months- we're keeping him as isolated as we can to help his body become healthy enough for surgery on March 9.

Baby Daniel

So, today was the day for baby #3 for us.  With this being a planned delivery, it was a very different feel than our other two kids.  You leisurely stroll into the hospital like this...

And before you know it, you're cradling a baby.

It all is a little surreal.  Anyway, all went well and mom and baby are doing great.

So, without further adieu, here is Daniel Maxwell Kaleo'okalani Brems.  While only weighing 6 pounds and 2 ounces and measuring 19 inches long, he is quickly becoming the center of our family.

June Birthdays

June is a busy month in our family; lots to celebrate  So, here's a little bit to get caught up on June before we're into July.

First, we have my birthday and I definitely got spoiled- check it out, a cake and pie.

I even got 32 candles on my cake too- not sure how much longer I'll be able to do that.  The kids definitely enjoyed helping me out with that challenge.

 Next, we had Joseph's birthday.  It's amazing that 5 years have passed by already.  He was definitely spoiled too with some great gifts- such as camping/fishing equipment, legos, and a new swim suit.  It doesn't get much better for a 5 year old.

For his party, Joseph wanted to go to the trampoline park near our house.  Maile and him have gone a few times before and have absolutely loved it.  Being surrounded by so many of his friends, Joseph was on cloud nine.

These last two pictures are some that I couldn't help but sharing.  In case you didn't catch on the news, we had been getting quit a bit of rain in Texas.  One weekend, I had just finished up mowing the lawn and Mailed brought her lunch out to the garage and it started raining.  So, we pulled out some chairs and watched the storm pass over while eating lunch.  Maile seemed to be fascinated watching the rain come down.

This last one came a couple weeks ago after church ended; I definitely a very lucky daddy.

Baby Boy or Baby Girl?

We're pretty excited for our little tiebreaker to arrive in October!  I had an ultrasound last week (at 16 weeks) and we were able to find out the gender!  Yay!!

When I picked Joseph up from school on Wednesday, I told him we were going to have a "baby party" that night and find out the gender.  He had absolutely no interest!  He was certain he knew the gender already (girl).  But, I still made him participate in our party! haha

First, the kids each had a cupcake to eat with frosting in the middle that would reveal the gender.  Then, just in case that was confusing at all, we had a present for each of them to open.  Keeping with tradition, right after my appointment, I went and bought our little one something.  Each of the kids had something to open for their new baby.

The reveal...





Yay for team boy!  This may be one of very few times in my life that I am okay with not being on the winning team!

We're excited to meet you, Baby Boy Brems!