Surgery. Recovery. Home.

Everything happened so fast. Though our hearts were broken with Miles’ tuberous sclerosis diagnosis we rejoiced that we didn’t have to have heart surgery creating another disease for life. We were home; we were healing emotionally and learning to live with a paradigm shift.

But if the last few months have taught me anything, it’s that as soon as I feel like I have things figured out things go wrong.

Shocking us to the core, two and a half weeks ago we were admitted for surgery. We were terrified we were making the wrong decision. By putting this baby through surgery we were exposing him to a lifetime of horrible pain, hospital visits and heart surgeries. With all the other things going wrong in this little guy, was this really the right decision? We discussed this question with many doctors and they told us if we didn’t do the surgery he would live a painful life as his heart got worse and worse but wouldn’t pass away until he was a toddler and at that time his heart and many other organs would be irrevocably damaged. Heart surgery was the lesser of two evils and so after a sleepless night at the hospital as we wrestled with this decision (and a fasting baby) Miles went to the operating room.

The procedure lasted 7.5 hours and didn’t quite go as planned.  They hoped to be able to simply remove the tumor to get his heart working well again. Unfortunately his aortic valve was damaged and needed replacement. They removed his functioning pulmonary valve, placed it in the aortic valve’s position and replaced it with a cadaver valve.  During the process they severed a coronary artery that they discovered had grown inside the aorta wall in a very unusual way that would have lead Miles to sudden death most likely as a toddler with overexertion. Miles went on the bypass machine three separate times, had multiple blood transfusions and enough liquid pumped into him to offset some blood pressure discrepancies that he looked like a water balloon about to burst. Even his head was swollen and was reminiscent of that 90’s classic: Coneheads. It was a rough night for Miles Ray Dipo but that was just the beginning.

Because of the challenges of his surgery, he ended up being intubated for 9 days. While intubated, they needed to sedate him and so he became addicted to the sedatives and painkillers they provided. After about a week of fasting they gave him an NG tube that allowed breast milk to go straight into his tummy at a very slow rate.  We spent 11 days in the CICU then transferred to the “floor” to start weaning him off various medications, IVs, oxygen and increasing his food intake. I swear they would have kept us there for two more weeks at a minimum but at this point I had lost my patience with the hospital and began pushing hard to send us home and let us administer and wean the meds and monitor his nutrition intake. We pushed and pushed and finally, yesterday afternoon, they allowed us to go home with an NG tube still taped to Miles’ face (which he will likely need for another month or two) and a suitcase full of medicines.

The reality of our situation hit us hard when we got home. Miles needs around-the-clock care with medicines and his feeds (he does about 30 minutes of oral feeding through a bottle and the rest of his nutrition is pumped into him over another hour)- every three hours. We have medicines to inject, weaning schedules to juggle and a baby with severe reflux and withdrawal symptoms so we need to hold him and burp him for hours to help keep his food down. Meanwhile I’m pumping breast milk around the clock, trying to find some time to sleep and oh by the way we have to manage a very energetic toddler. No wonder they wanted us to stay in the hospital… Fortunately, Morgan is staying home one more week from work which will hopefully be enough to get us into a better routine or at least a little more used to the new normal.

The worst part is we aren’t anywhere near done. Aside from the other tumors throughout his body and whatever challenges that will bring, Miles will have many more heart surgeries throughout his life. Most likely he will have a cath procedure at age 1, another a few months later, the open-heart surgery at age 2, and then various cath procedures until he is about 8 when he will have another major surgery. Following that his heart maintenance for life will include cath procedures replacing his valve every 7-10 years.

Though its overwhelming (biggest understatement ever), being home with my giggling, joyful sweet two year old is a welcome distraction from this emotional and trying time even if it adds another level of complexity. It has taken days to write this blog post and considering our new time demands I’m not sure how often I’ll be able to post from here on out, but I’ll try to keep you updated as major things happen.  We are so grateful for the love and support you have all shown. From encouraging messages of support, hospital visits, countless meals, gifts and the most incredible family members putting their own lives on hold, we have felt very loved and supported.  Now I’m not sure we will ever leave our house ever again but we will love having visitors as long as you don’t expect a clean house and good food… I’ll get to that in a couple years.

Hospital - Round 2

After a very beautiful Tuesday we enjoyed as a family of four at home (our first full day with no parents and no doctors since Miles was born), Wednesday was a horrific reversal. We came to Seattle Children’s yesterday for his short weekly heart check-up, and are still here as of this posting. The obstructing heart tumor has reduced in size, but is now replaced by the much bigger problem of an aortic valve that is suddenly leaking a great deal, and will need to be repaired or replaced via surgery. The working theory right now is that the tumor was ironically helping the function of the aortic valve, and now that the tumor has reduced in size, the dysfunction of the valve is suddenly apparent. But the doctors won’t know anything for sure until his surgery that is now scheduled for this afternoon. The most likely outcome is what is known as the Ross Procedure (look it up), and perhaps the best case scenario is that they are able to repair his aortic valve independently. He will be sedated for a few days afterward, and is then looking at 7-10 days or more in the hospital, not to mention likely follow-up heart surgeries as he grows into adulthood and other potential complications and/or surgeries on other organs related to his tuberous sclerosis diagnosis.

The miracle is that Miles has had the chance to grow a little these past three weeks, and has made it to this point without much medical intervention. In fact, he looks like a totally normal newborn on the outside, which we attribute to our friends and family keeping us in their thoughts, prayers, good vibes, etc. We are being well taken care of by very loving parents and fellow church members, but if you want to continue to help, all we can ask for is that you keep the prayers coming. When Jenny asked the head cardiac surgeon here what we should be doing to help Miles prepare for this daunting surgery, his immediate and emphatic response was to be positive. He said that in his experience, he can almost always tell going into the surgery how it will turn out based on the attitude of the patient, parents, family, and friends. Call it faith, placebo effect, or whatever, but he said that it makes a definite difference in the outcome. But we are also prepared for the worst.

True to his name, Miles is a soldier, and this soldier has a ton of fight left in him.