Update from Home

It’s hard to believe we’ve been home from the hospital with Emmett for almost 4 months now. On one hand, it feels like we’ve been home for longer, and on the other hand our hospital stay seems much more recent. He is truly the sweetest, most happy-go-lucky baby, and he teaches us the importance of appreciating each day and every moment. I wanted to share an update on life at home, partly for those curious and partly for myself so I always remember the hard days and can look back on how far we have come.

Leaving the hospital was like a breath of fresh air–we were SO ready to bring our little warrior home! However, with the severity of Emmett’s condition, they still want to keep a relatively close eye on him. Therefore, we left the hospital on the “Home Monitoring Program” for single ventricle babies. The time between birth and the second stage surgery (completed around 6 months) is the riskiest time in these heart babies’ lives. Which means they need careful monitoring and follow up with the cardiology team. Before discharge, we went through various trainings to make sure we felt comfortable taking care of all the heart related things at home. Riley’s Hospital gave us an infant scale, helped us order a pulse oximeter, and gave us an iPad on which to enter all the data that they need to see for him daily.

Each morning we give Emmett his medications (apirin and furosemide/lasix, plus vitamin D supplement). The lasix is a diuretic which helps prevent fluid retention especially on the lungs, and will likely continue until a few months post next surgery. The aspirin is to help prevent blood clots especially in his shunt, and is something that Emmett will most likely be on for the rest of his life. Each day we have to complete at least 2 pulse ox checks (O2 sats and heart rate), daily weight check, take a photo or short video of Emmett, track all wet and dirty diapers, track all feedings (including total minutes of breastfeeding and total volume from bottle feeding), and track any vomiting. I don’t think I will ever forget the stress we feel each evening at his daily weight check. Holding our breath as the scale gives us the number, checking and remeasuring to get an average, the temporary relief when it shows a weight gain, and the disappointment when it shows a stall or loss.

All of this data then gets entered into an app on the hospital issued iPad, where it is reviewed by our home monitoring nurse. She contacts us if she sees anything concerning, and we are also encouraged to call or text her with questions or concerns. It is comforting to know we have someone available to us so readily, although I would be lying if I said it wasn’t cumbersome to keep track of all of this information. We are constantly asking each other and ourselves “did you track that diaper?” and “can you start a timer for this feed?”. We have found it extremely helpful to use a baby tracker app (the one we use is Sprout) and from there transfer it to the Riley app. In addition to the home monitoring nurse during the day, if we have concerns past 9pm, we are instructed to call the on-call cardiologist fellow. So far we have only had to call once, due to a “concerning weight increase” which could potentially indicate fluid retention. Thankfully it was just a fluke measurement and we were not required to do anything other than continue monitoring.

Heart babies tend to have feeding and weight gain difficulties and for some, frequent vomiting can be an issue; thankfully Emmett does not struggle with vomiting and has only done that a few times. However, he was not gaining sufficient weight on breastfeeding alone. That was part of the holdup in the hospital prior to discharge, and ultimately we ended up at 6 fortified bottles per day when leaving the hospital. Fortified breastmilk is basically breastmilk that has been supercharged with a bit of formula to provide extra calories per volume. We were given a recipe for how to fortify the breastmilk (which is naturally 22 kcal) to 27 kcal. Our instructions at the time of discharge were to feed Emmett every 3 hours, waking him up if necessary, so that he got 8 feeds per day: 6 of those being fortified bottles and 2 breastfeeding sessions per day. This feeding schedule meant that we were in a never ending loop of pumping, washing the pump accessories, measuring out milk and fortifying bottles, giving him a bottle, measuring how much he ate, and washing the bottle and supplies. In those first few weeks at home, it felt like I barely finished the cycle before it was time to start it all over again. I’ve done the newborn phase with our other two kids, but this took it to a whole new level. Balancing this on top of caring for two other children felt impossible in the beginning. We were in the epitome of survival mode, just trying to keep our heads above water.

This schedule also meant that we were setting alarms in the middle of the night; Taylor would warm up a bottle, we would wake Emmett up, and Taylor would feed him while I pumped. It was absolutely exhausting. It also went against every natural instinct to NEVER WAKE A SLEEPING BABY. I felt so much frustration and sadness that I wasn’t able to just nurse him like I had done with our other two babies, especially with those middle of the night sessions where you feel the ache of sleep deep in your bones. Life has a funny way of putting you in your place and showing you that the things you once thought were difficult (like breastfeeding a newborn) could always be much harder, making you wish you could go back to that earlier stage that now seems easy in comparison. I’ve learned that with life everything is relative, with very few absolutes.

I also realize that plenty of other mothers pump instead of breastfeed either out of necessity or by choice, so in no way is this meant to degrade pumping. I personally felt like I was sacrificing much more when pumping compared to breastfeeding. This is simply to say that I would much rather breastfeed, and it was– and still is to a certain extent– a painful reminder of yet another thing of which CHD robbed me. In a journey where so many things are out of my control, feeding and nourishing my baby via breastfeeding felt like the one thing that I “should” be able to do and control. I was caught somewhere between mourning what I was barred from and feeling grateful that he did not come home on a feeding tube, as can be common with heart babies.

As the weeks went on, we were slowly allowed to reduce the number of fortified bottles and increase breastfeeding sessions per day. They kept a careful watch on his weight gain and once he did well for a few weeks, we were able to reduce again. We were also finally allowed to stretch the feeds out at night, and Emmett did beautifully with sleeping longer when allowed (thank heavens!). This made such a huge difference in our sanity and day-to-day functioning. As I write this, Emmett is now just under 5 months old, has been sleeping through the night for a while now, and down to only 1 fortified bottle a day! This decrease from 6 to 1 fortified bottles is a source of enormous pride for me; pride in Emmett for how well he is growing and gaining weight, and pride in myself for sticking with the pumping when it would have been so much easier to throw in the towel. So much blood, sweat, and tears went into making this amount of breastfeeding possible for us.

Since being discharged, we have had monthly cardiology appointments at Riley where at each visit Emmett has an echocardiogram and EKG as well as an appointment with his cardiologist. So far everything with his heart has gone as expected with no new bumps or surprises (we are so thankful!). His sats which they anticipated would trend downwards have been doing so, and are mostly in the 80’s now (with his current anatomy they would like his sats to be between 75 and 85). In addition to cardiology appointments, Emmett has to follow up with urology regarding his hydronephrosis (excess fluid in the kidneys) which is being monitored through ultrasounds. He also has had an appointment with the infant growth & development clinic to monitor for any developmental delays (common for babies who spent a lot of time in the hospital after birth), and was referred to physical therapy due to some tightness in his shoulder and neck. We have started attending physical therapy every other week, thankfully in Fort Wayne. In the next several months he will also have follow up appointments with Genetics and Audiology, which are routine for someone with his condition and extended neonatal hospital stay. In addition to his regular well-child visits with his pediatrician, we also go to his pediatrician’s office for his monthly Synagis shot, which is a medication to help prevent severe illness from RSV during the RSV season. Babies under the age of 2 with certain heart and/or lung conditions are at a higher risk of severe RSV and thus are eligible for this monthly shot. Finally, let’s not forget about the worry of Covid, as we tried to navigate the pandemic with a baby who is in a higher risk category because of his heart condition. Thankfully although the rest of our family did test positive/exhibit symptoms at one point this winter, Emmett somehow miraculously did not show any symptoms.

Looking Ahead: Emmett is scheduled to have his first heart catheterization at the end of this month (March). A heart cath is a procedure in which they insert a catheter through a blood vessel (in Emmett’s case through the groin) and guide it to the heart to check pressures in the heart and lungs, and learn more about his specific heart anatomy. This will be done under general anesthesia and may require one overnight stay in the hospital. If all looks well, then Emmett will have his open heart surgery at the end of April. This is the second stage surgery, and will be a combination of the hemi-Fontan and bidirectional Glenn (due to Emmett’s unique anatomy of having 2 Superior Vena Cava, SVC). During this operation, they will connect the SVC’s directly to the lungs, bypassing the heart completely. This will reduce the workload of the left side of his heart, which is under extra strain as it is currently doing the work of both sides of the heart.

Honestly, I can’t believe we are already to this point, discussing and planning for the next surgery. I can feel myself getting more and more anxious as it gets closer, and the memories are creeping back of the first two surgeries/hospital stay. I remember hoping naively that the first surgery would be the hardest because he was so tiny, and that somehow the subsequent surgeries would feel “easier” because he will be bigger and stronger and because we’ll have already gone through it before. Now that this next surgery is coming up, I’m afraid that I was wrong. We’ve now gotten to know him more, witnessed his personality come alive. Our attachment has gotten stronger over time, and our love for him has grown. I am absolutely dreading making the drive to the hospital, and every fiber of my being screams “no” at the thought of handing him back over to the surgical team. Yet I know that I have no other choice. I have comfort in the knowledge that Emmett is incredibly strong, and hold on to hope that he will come out victorious with one more surgery behind him.

“Warriors are not the ones who always win, but the ones that always fight”.