Lily & Leo

“The greatest battle is not physical but psychological. The demons telling us to give up when we push ourselves to the limit can never be silence for good. They must always be answered by the quiet, the steady dignity that simply refuses to give in. Courage. We all suffer. Keep going.” – Graeme Fife

For Leo’s first week of life, he suddenly stopped feeding on his own and had to gavage feed since he wouldn’t take the bottle.  He would be wide awake and alert but after we do his mouth and gum massage, we would put the bottle in his mouth and he wouldn’t nipple and would just spit out the milk.  He was having a lot of emesis (vomiting) and so we thought maybe the acid from the vomit was causing irritation in his esophagus.  So they doctors put him on medication, Prevacid, once a day to help with the reflux.  They said it should take about 3 days to take into effect.  For the next few days, Leo continued to not feed on his own and he started to lose weight.  He was able to gain up to 5 pounds 8 ounces but then went down to 5 pounds 2 ounces in a few days.  He was also having a lot of residuals (food that didn’t get digested yet) in his stomach, almost half his feedings, so they would subtract that amount from the full amount of milk he needed to take in the next feeding, and feed him the remainder.  That also caused him to lose weight since he wasn’t getting the daily minimum amount of calories needed.  To compensate for that, they changed his formula to a higher calorie formula to 24 Cal instead of 22 Cal.  They also expanded his gavage time to 90 minutes to give him more time to digest his food, but he still continue to have emesis with almost each feeding.  It’s painful to watch him gag and throw up with each feeding.  I feel helpless being unable to stop the vomiting from happening and stop the pain he’s feeling.  They also redid his hearing test and he passed in the right ear but failed the left ear so he will have to have a consultation to retest his hearing in a couple months.  A couple days before being 2 weeks old, he got a blocked tear duct in his right eye as well, but it looks worse than it is.  We just have to massage the tear duct to drain it out and occasionally wipe the mucus off and it will clear up in a few days.  My poor baby just can’t catch a break.  Also, since he hasnt improved all week, a GI Specialist from CHOC (Children’s Hospital of Orange County) decided that it would be best to have him transfer to Choc where they can have a feeding team work with him 6 days a week (rather than 2-3 times a week with the occupational therapist at Hoag) and have a little surgery to put a peg/g tube (percutaneous endoscopic gastrostom or gastrostomy tube) in him to help him feed longer term, especially for supplemental feedings at home in place of the ng tube (nasogastric tube/nose feeding tube). My poor Leo, he’s going through so much right now, but he is such a trooper.

Leo 2 Weeks Old

On the morning of June 21st, I got a call saying they want to transfer Leo to Choc that day so that he can have the whole day to settle in and get comfortable at Choc before they do all the tests and scans on him on Monday.  The transportation crew from Choc arrived around noon, which was right at one of his feeding times, and so they strapped him into his intense travel pod and took him into the cute Choc ambulance and carefully drove him over to Choc.  We thought they were going to gavage feed him during the drive over to Choc, but they didn’t, so poor Leo was so upset and unhappy by the time he got to Choc because he was so hungry.  By the time he got settled into his new bed and got situated, it was about 2 hours past his feeding time, so poor Leo was starving and it took some time to finally get him to calm down.  My poor Leo!  By that evening though, he was comfortable again and back to his laid back, calm, cute sleepy self.  We will miss Hoag but we know he will have wonderful care and be in great hands at Choc.

It’s really sad and heartbreaking to see my baby in pain and unhappy.  It’s stressful and saddening too to come into the NICU everyday and not hear any good news, but keep hearing things are getting “worse” and not improving.  The thing parents do most besides loving their children is worry.  I worry if he will be ok and worry if he doesn’t improve, but then I just try to keep hoping that he does get better it’s just a matter of when.  I’m so tired from all the stress and worry, but that’s all that’s been on my mind 24/7.  I’ve lost so much weight from it, and I feel guilty for getting more than 6 hours of sleep because I feel like I should be awake at least every 3 hours and be with my baby to take care of him, change his diaper, feed him, cuddle with him, and just be there for him.  I feel unhappy and sad because I just want the best for my baby but there’s not much I can do besides wait and be there for him, and be there with him during this whole journey.  I feel helpless not being able to do much else.  However, I know that I’m still recovering, so I have to force myself to take it easy, otherwise I’d be useless to my baby boy.  It’s a lot of emotional conflicts going on during this tough time, but I’m trying my best to do the best thing for Leo, and for myself and my family.  The one thing that will make Leo’s move to Choc harder is that they don’t have the live stream cameras.  So that will be very tough since I won’t be able to see him whenever I want.  My patience has been tested for so long but I just have to keep on waiting because my little Leo is doing the best he can and that’s all that matters.  It does help to go see him and hold his little hand and let him know that I’m right there with him, and that we will get through this together.  I’m his biggest fan and cheerleader, I know he can do it!  You can do it Leo!

Progress at CHOC: On Monday June 22nd, they did some  examinations on him and a GI specialist decided to plan to put a gtube in him some time end of the week.  The GI specialist also wanted to put Leo back on the reflux medication, Prevacid, but up the dosage and give it him twice a day.  They said it will take more time to truly see the effects of it so they want to continue with the medication and see how it goes.  A feeding therapist started to work with him.  To my surprise, he started to nipple the bottle and drank about half of his bottle for the first time in about a week!  That’s such an amazing step forward and I was so excited and proud of my little prince Leo!  They gavaged the rest of his feedings that day just so that they don’t push him too hard, but he didn’t have any emesis since the day before too, so that’s also a good sign that things are getting better.  Leo also had to get an Upper GI X-Ray scan, where they feed him this solid substance and watch how it goes into his system.  Once again, they scheduled the x-ray when about an hour after this next feeding time, but he had to wait till the x-ray was completed before he can eat since he needed to have an empty stomach for the x-ray.  We waited for almost 2 hours before the transport guy finally came up to transport Leo to the x-ray room so you can imagine how hungry he was getting.  When we finally go him onto the x-ray table, he didn’t like it even more since we had to unswaddle him and pin down his arms and legs to take the x-ray pictures.  I had to help 2 other nurses hold him down, and watched him cry his poor little eyes out because he did not like that.  It was painful to see him so unhappy like that but it was over within 5 minutes and we quickly wrapped him up and put him back in the transport incubator and he was happy temporarily until he realized he was still hungry.  Once he got gavaged, he finally settled down and was calm again.  His x-ray results came back normal, thank goodness!  Also, he is much more alert now and I can just stare into his beautiful round eyes for days!

The next day on Tuesday, I got a call from his geneticist saying his chromosome macro array test results came back and it just confirmed that he does indeed have tetrasomy 18p.  I knew the test wouldn’t say anything different but I guess the geneticist wanted to really confirm his condition because he didn’t show any signs of chromosome problems besides the feeding issue.  So at least we know for certain, but that doesn’t really change anything for me.  He is still my sweet, perfect little baby boy and this feeding issue is just a battle he will win and soon enough, he’ll be able to come home and start many adventures together.  I did get a wonderful news that morning and it’s that he drank his entire bottle all on his own at the 5am feeding!!  I cannot believe how drastic he improved in such a short amount of time!  From the rest of the feedings he drank more than half of his bottle on his own, and finished another bottle in his late night feeding!!  Just look at his smile and his cute little content face!  His smile just lifts up my heart and fills it with so much happiness!  For the next few days he continues to nipple more than half of each bottle and would complete an entire bottle maybe 2-4 times a day!  By the end of the week, he would finish almost every bottle except for maybe one or two feedings, mostly because he would just poop out from working so hard and he would fall asleep.  I suggested to the GI Specialist if maybe we should put him on the regular flow nipple since the slow flow nipple might be making him work too hard and so he falls asleep.  He thought that was a good idea and will run it by the feeding therapist team and see what they say.  The GI Specialist said that Leo probably won’t need to get the gtube anymore, and that if he completes all his feedings 100% for 24 hours, then we can remove the ng tube!  Such wonderful news!!  I’m so happy and super proud of my precious Leo!!!

Leo got upgraded to a quieter room at Choc, so now he’s in room 210 instead of 208, and it’s suppose to provide a more “homier” environment.  They moved him due to staffing reasons, whatever that means, but this is nicer because it’s more quiet.  Also, there’s windows in this room for natural lighting, which I think will make him happier overall, and there’s recliner chairs (a plus for me!) and the pillows are fluffier haha, yes that makes a big difference to me (and him I’m sure)!  Leo has been doing so well in the past few days, and now weighs 5lbs 7oz.  He hasn’t thrown up since Sunday too!  He really makes me so happy.  It’s been tough trying to be strong and attentive to Lily, since she still needs me too, while trying to be strong and solid for Leo.  It’s a tough balance to juggle because Lily is so intuitive and smart that she knows Leo is “sick” and has to stay at the “doctor’s”.  When I’m sad, I try not to cry in front of her or show my sadness to her but she can sense it and will ask me why I’m sad.  I just want our baby Leo to be home with us.  Overall though, with Leo’s amazing progress, I feel like I can slowly breathe again and I notice that I am indeed happier and genuinely smile more as well.  When my babies are happy, I am happy.  I think that’s just how life as a parent works.  Trying to be positive and hopeful is really hard to do especially when things have been so challenging, but all the good vibes and happy positive thoughts are definitely paying off.   It also definitely helps at all our family and friends are wishing him the best of luck and sending him good vibes and prayers as well so thank you everyone for that!  I’m hoping Leo will be able to come home sometime next week.  He just needs to be able to feed on his own and they’ll do a final examination and hope he passes everything!  My precious Leo, your courage and bravery and perseverance through this tough time is inspiring and is giving me the courage and strength to be strong and happy for you.  Your love keeps me going, and I know you will be coming home soon!

Here is a video of Leo (18 days old) being so alert!  I’m so proud of you my little prince Leo.  I love you so much my little Leo!
Keep on fighting, you will be home soon my littlest love!