Monday, August 24, 2015

Why won't my baby eat?

While we were in the hospital with Luca, he wasn't really allowed to eat until many days in. He got maybe 5 mls in a bottle, two to three times a day for the first week and the rest of his nutrients were provided through TPN. We were told that heart babies, in general, have a tough time eating. This is mostly due to their hearts working hard and them not having the energy to eat. This wasn't the case for Luca, due to the way his first surgery went, but we had a tough time with his feeding overall. When we initially brought him home, he was probably eating somewhere between 15 mls - 30 mls of milk (1/2 of an ounce to an ounce) each feeding, which wasn't nearly enough. So we started feeding him more often, we started a feeding schedule of feeding him 8 times a day. We had a strict feeding schedule going, every three hours (when I told people this, they looked at me like I was crazy) to make sure that we were at least attempting to get him to eat and that he had multiple chances to eat every day. I had a google spreadsheet (I didn't know about baby apps) that had all of his times he ate and how much down to the milliliter. We eventually had to increase his feedings to every two hours and forty minutes, then to every two hours and thirty minutes at one point, just so that he had more chances to eat.

As we continued with his feeding, we found he had an allergy to soy, dairy, and egg from encountering blood in his stool, but the hardest part about his feeding started around September/October where he would literally refuse to eat. Every time we would try to feed him, he would cry and scream and it was like wrestling with a screaming monkey every feeding. Those dolls that they sell in the store where you give them the milk and the milk just goes away are all lies! Add on the fact that we were feeding him 9 times a day, so there were 9 wrestling matches a day (maybe actually 7, he would fight us less during his sleep feedings) and add on the fact that he is a heart baby and weight gain was very important for him to get ready for his second surgery and the stress level of the situation was extremely high. I spent countless days/nights, literally googling "why won't my baby eat?" and many variations of the same question, and surprisingly I didn't come across to many people actually writing about their own experiences. The short answer to the question is that he had/has severe reflux. We tried everything, from changing different bottles, different formulas, different positions, trying to distract him (we sometimes had to feed him walking around the house), spreading out feedings (yes, there can be more! at one time we were up to feeding ten times a day), and not much seemed to make a difference. For what we were able to get into him, he would often throw it all back up. You can imagine how stressful it can be to wrestle with him to eat, and finally get him to eat, only for it to all come back out ten minutes later. I had alarms set for all times of the night, because feeding every two hours and thirty minutes means you have to be awake every two hours and thirty minutes just to try to feed your baby, even if he's not awake and even if he won't eat!

Just to give a rundown of everything we tried:

Bottles: We started off with Dr. Brown's bottles from getting those initially at CHLA. Other brands we tried: Avent natural, Joovy boob, Tommee Tippee, Comotomo, Playtex dropins, Mam, Born Free, Lansinoh, and Life factory. We tried multiple variations by switching parts out. We were using a Mam nipple, doctor brown vent, on a born free bottle but eventually, we found what worked best for us was using glass bottles but with a wide Dr. Brown nipple. So we are currently using a Born Free glass bottle with a Dr. Brown vent and nipple.

Formula: We started off with Enfamil's infant formula. Once we found out he was allergic to dairy, we changed to Nutramigen (he was on this in the hospital), when the blood didn't go away we changed to Puramino, the lesser known elemental formula. We also tried Elecare at one point, but Puramino seemed to work best for him.

Thickener: This was the game changer for us. Doctors seem to generally advise against putting cereal in baby bottles, so we never tried it. I had read about other thickeners that had issues in the past and was a little scared. I read on one forum about a thickener called Gel Mix. ( We put that in the bottle once, and it was AMAZING the difference we saw in him. Feedings that took an hour previously, he took down in 10 minutes and with no fight! We were a bit amazed at how much time we gained back in our lives when we started using this. His feedings seemed like an endless cycle, because they were so close together (two hours and thirty minutes in between and if it takes an hour to do one feeding, you really get about an hour and thirty minutes) and we (I) felt like we were trapped in our home because we couldn't go anywhere because of his feedings. During this time I was also pumping about 8 times a day, so between feeding and pumping, it seemed like an endless cycle. I remember one time taking him to the mall and the mom staring in the Nordstrom lounge at my baby that was screaming and crying because I was trying to feed him.

Luca is 13 months old now, his reflux has not gone away, BUT it is definitely 75% better than where it was before. I also don't believe that he is the average example of reflux, I think in many cases reflux resolves itself by a year old (I have no facts to prove this though, just based off of what I've read and have been told).

I really don't think anybody actually regularly reads this blog, but I'm posting this in hopes that if someone out there is googling "Why won't my baby eat" for countless days and nights, they will read this and realize that they are not alone.

Also, there are reflux groups on Facebook that I found much later in all this, that have been fairly helpful as well. :)

Monday, February 2, 2015

Luca's Heart Story

I think anybody who is expecting imagines what the day they bring their baby home will be like. Getting the thumbs up from the doctor that everything is good to go and everyone goes on their merry way. I'd be lying if I said I didn't think about this every single time I go to the hospital where Luca was born and see the people parked in labor and delivery and wonder if they were lucky and able to get to go home the day(s) after their baby is born.

The day following Luca's birth at the Kaiser in Anaheim, the doctor found a heart murmur when she came in to do the physical exam. I can still remember my eyes immediately filled up with tears when she told us that he would need to go tot he NICU for further testing on his blood oxygen saturation levels. When they found that they were lower than normal (normal is between 95-100), an echo cardiogram was done on his heart. We sat nervously in the NICU with Luca all day waiting to hear back on the results. We were told the cardiologist was not there yet and that we would hear back later that day. Finally, we were advised that Luca had Tetralogy of Fallot. We were devastated, not knowing what it meant for our baby. Later, the cardiologist had the echo cardiogram redone due to the first one not being done correctly. We sat there hopeful that what they initially found was wrong, that our baby boy was actually going to fine and could go home. Once we actually met with the cardiologist, he confirmed that Luca did indeed have Tetralogy of Fallot but also with pulmonary atresia. Devastated again, we were not sure what this meant for Luca or for his future, the cardiologist explained the difference between a normal functional heart and what Luca has and then proceeded to explain what this meant as far as next steps. We were told that Luca would need surgery within the next week or so  and would also need a couple more surgeries after that, typically between 6 months to a year and then at an older age depending on how Luca grows.

Later that night, the nurse told us Luca was going to get transferred to Kaiser on Sunset shortly via helicopter. Watching our almost exactly 24 hours old baby boy get loaded into the incubator and whisked away to the helicopter was one of the most emotional moments I have ever been through. I just remember Jason and I holding each other and sobbing in the hallway of the NICU after we watched him get taken away. We debated if we should go to see him that night or if we should wait until the following day to go see him and decided to get some rest and go the following day.

Living in Anaheim, the drive to LA can be easy without traffic, but the 5 is typically not anybody's friend. The days following Luca's birth, we were waking up very early to try to beat traffic to drive to LA, would spend all day in the NICU with Luca, and then would go home to do the same thing the next day. Initially we were told they were not sure when his surgery would be and a couple days in, were told his surgery was scheduled for 07/30. We met with the surgeon, where he explained the procedure and all of the risks. It's already a difficult thing to think about your baby having heart surgery, and then even more difficult when you add on that there is increased risk because he will only be a week old and around 5 lbs. His surgery was scheduled to be done at CHLA (but with a Kaiser surgeon) due to the type of cardiothoracic unit they have dedicated specifically to heart babies. The facility and staff there was amazing and I am so glad that he was able to have his surgery there.

The hardest part about this time for me was when we went home and to think about the fact that I was no longer pregnant, but didn't have our baby at home with us either. We also had the dogs at my parents house during this time, so our house felt very empty. Recovering after giving birth can take some time, but add on having to walk far distances (from the parking structure at Kaiser to the hospital and up and down Sunset to go eat since parking was $15 a day (!!!) at the hospital with no ins/outs) was pretty tough. My feet/ankles didn't swell at all during pregnancy but ended up super swollen in that first week from all the walking. I/we didn't really tell anybody during this time what was going on with Luca because talking about it seemed like it would make the situation more real. I also felt like it would be hard to cope with the questions at the time of what was happening and if he was going to be okay.

We were lucky and got into one of the Ronald McDonald houses close by CHLA the day before Luca's surgery so that we would no longer have to do the drive everyday and could be close by to him while he recovered. His surgery was scheduled for very early in the morning on 07/30. The night before his surgery we sat with him in his room and I stared at him and wondered for the hundredth time that week if we would ever get to take our baby boy home. The following morning we saw him before his surgery and they said that we could walk with him to the operating room, but I really couldn't do it. I couldn't bear to see him get taken away. We waited in a waiting room on the same floor to hear from the nurses on how it was going. I had never been so scared for anything in my life. We finally heard that the surgery had went well and that he would be put in a room shortly and we could go see him. After hearing the news, the tear floodgates opened for me, just hearing the confirmation that he had made it through the surgery. Just thinking about this moment still brings tears to my eyes today. Seeing him for the first time was a little bit shocking, he was intubated, had a chest tube, an arterial line, an IV, and a PICC line (and I was complaining about having to have just an IV in the days prior to going into labor!). He was originally supposed to only have a BT shunt but due to the way his blood oxygen saturation level changed, he also had a portion of the second surgery done. The days that followed were a blur while we watched Luca recover from surgery. Sitting in his room all day and watching his monitors and stats go up and down was somewhat nerve wracking in the beginning, but we slowly got used to it. It felt good to watch that every couple of days they slowly took away one his tubes and/or lines and know that he could possibly go home soon.

Once Luca was transferred out of the CTICU and to the step down unit, we were able to stay with him 24 hours a day. We lived out of his room during this time and were able to participate more in his care for giving him baths and starting on mouth feeds. (Previously, he had only been fed either through his IV or NG tube through the nose).  They told us that the mouth feeds were typically the part that is the most difficult and that babies can have a hard time due to the amount of energy it takes to feed.

Our sweet boy the night before surgery

The days following his surgery, we chose not to take pictures when he had all of his tubes and wires around. I know you might be thinking he still has tubes/wires in the pictures below but it's nothing compared to what he had coming out of surgery!

The overall experience of this was/is definitely the most emotional thing I have ever been through, I'm definitely not looking forward to his second surgery that will be coming up in the coming months and know that because he will be so much bigger and more aware that I will need to be way stronger than I was for the first one. Yes, he will need more surgeries and yes, he does require more care than your average baby but even after all that we have been through, I know that we can still consider ourselves to be one of the lucky ones because.... he is here. Although underweight at this point, he is here and is still hitting many of his milestones...rolling, smiling, and laughing.

February is American heart month.

Becoming more aware by being a part of different heart parent groups is actually what helped me realize that Luca will be okay, I had never heard of anyone with a heart defect previously and honestly wasn't even sure what to expect once we were able to bring him home before starting to hear about other parents' experiences with their own babies with the same defect (who would have thought that hashtags, specifically #tetralogyoffallot, could be so helpful). Babies are not always tested prior to leaving the hospital and some CHDs can go undetected for weeks or months and some parents/babies are not as lucky as we have been and they are found too late. California passed a law in 2012 for hospitals to start implementing the pulse oximetry testing prior to babies leaving the hospital in starting July 1, 2013 but 100% participation by hospitals is not required until December 31, 2016 and not every state has this type of law in place. While the exact cause of congenital heart defects is unknown, spreading awareness of the most common type of birth defect (1 out of every 125)  can help new parents become more aware of the birth defect and to request for the testing prior to leaving the hospital to decrease the risk of babies being sent home with CHDs undetected.

I know my Mom will read this so I'd also like to acknowledge that I would not have been able to make it through the past couple of months without her. She has helped us in so many ways and to say that I am thankful for both her and my Dad does not even begin to describe the way I feel. If having a heart baby is stressful, having a heart baby that also will not eat (literally refuses) is ten times as stressful. Grandma seems to have the magic eating touch with Luca. 

Moments after Luca was born, my Mom asked the nurses why his hands and feet looked bluish and they somewhat waved her off and told her he just needed time to warm up when that should have actually have been a sign to them that something was wrong. My Mom always used to tell me that Mom is always right and I've learned throughout the years (after much denial in my teenage years) that she is right.