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 :)