Lily & Leo

Home is wherever I am with you.

Since the last update, a lot has happened. After a few days of making such progress, on Friday June 26th, Leo started to slow down on his feeds and started to finish only half of his bottles and sometimes less. Friday night he even had to gavage one of his entire feedings because the nurse thought it would be best to give him a break and let him rest. I felt saddened by this because I feared he would be regressing again and the prospect of him coming home was within reach and now I felt like it’s so far away again. I also felt like because of his move to the new room, maybe the new nurses aren’t as familiar with his situation and decided to go easy on him rather than trying harder to see what he’s capable of. Overall it was just very frustrating. The next day he continued to do about half or less than half his feeds and he would just be unmotivated to continue eating. The GI doctors told us the next day that they will reconsider the gtube again and that on Monday they will have a meeting to schedule the surgery and plan a course of action for Leo.

Leo 3 Weeks Old

Hearing that made me devastated because of my hope for my little Leo to be home keeps getting bounced around and I can’t seem to get a firm hold on it. I didn’t understand why he suddenly didn’t feed as well, there could have been many variables and many reasons, but I had no answers. The unknown is frustrating and the unknown of the future is even more frustrating and stressful. All I knew was what was happening at the current moment and I wish I could do something to help him, but I felt so powerless. How could he go from almost removing his feeding tube to the possibility of a gtube? It’s so hard and stressful. I wish I can take away his struggles and give him the best life possible. I know he’s doing the best he can though, so I am proud of him regardless.

Here is a video of Leo (3 wks old) smiling in his sleep! His arm broke free from the swaddle too and he just looks so cozy and comfy. I can watch him sleep all day. I bet he’s dreaming about coming home to his mommy! He looks so happy and peaceful; it warms my heart! I love you Leo so much!

Leo having sweet dreams.

Sunday he continues to take less than half his feeds, but then come monday morning, he finally finished an entire bottle again!! My dear Leo, you are so unpredictable and sure like to play with your mommy’s emotions! He then continued to finish more than half his feeds and finished a couple more bottles on his own! One of the GI doctors came by and asked me how Leo was doing and told me that Leo’s feeding tube is probably very uncomfortable and told me I should just pull it out. I thought he was joking, but he said he was serious and that he doesn’t need the feeding tube anymore! I was in shock and asked “Are you sure…right now?” So he went to confirm with his Neonatologist (Dr. Bixby, also from Hoag!) and a couple hours later, I got to witness them take Leo’s feeding tube out! It was really quick, only a few seconds once they got the tape removed from his cheek, but those few seconds made such a big difference in Leo’s accomplishment as well as his comfort. I was so happy for him and in disbelief at the same time! They’ve been telling us that he had to finish all his bottles for at least 48 hours before he can have the tube removed but he only did it for maybe half a day and the tube is now gone…I’m so confused but I will celebrate anyways!

No more feeding tube!

Leo & Mommy

The next few days, the plan is to have him on a quota where he needs to finish a minimum amount of milk by the end of each shift (12 hours). If he keeps this up for a few days, then he can come home, and if he’s unable to reach his quota and start to slip again, then they will schedule the surgery for the gtube. I like the quota system a lot better because if he doesn’t finish a bottle in one feeding, he’s given the chance to make up for it in the next feedings. This seems much more natural and a lot less stressful and pressure for him to finish. Leo did really great and surpassed his quota each night and we started hearing talks about Leo being discharged! It’s a good sign when they start giving you papers to sign!  Dr. Bixby (one of his Neonatologist) said that Leo’s weight gain isn’t where it should be on the curve, but that could be due to his underlying chromosome disorder, but as long as he’s making his own progress then it’s ok, and it won’t keep him in NICU longer than necessary. His pediatrician and genetecists with be monitoring his weight gain once he’s out of NICU.  As of Thursday July 2nd, he weighs 6 pounds 3 ounces!

Stay with me mommy.

On Thursday, the nurse told me that the GI specialists feels like there’s no need for Leo to be in NICU anymore but the Neonatologist on call, Dr. Sun, wanted to give Leo another day to make sure he’s feeding consistently.  The nurse started to check things off the list to get ready for discharge and had me sign a couple documents too.  I had to make sure I didn’t get too excited due in case something changes.  The emotional rollercoaster I’ve been on have been crazy and so I wanted to try to keep my emotions in check and not get too carried away.  However, all I can think about is the possibility of my Leo coming home the very next day.  Well, it is now Friday and we came in and the nurse said Leo will be discharged today!  The word “discharged” has never sounded so good to me ever!!  Haha!  I still tried really hard to keep my cool, I’ll jump for joy once I leave the hospital with him by my side.  The nurse went over some documents and things we need to follow up on once we leave the hospital, and we finished signing all the discharge papers.  After he leaves the hospital, we just have to do his hearing test (since he failed it in his left ear) and bilateral hydronephrosis ultrasound follow up (due to fluids in his kidney) follow up along with his usual pediatrician and geneticist appointments.  We had to wait for his medication to be filled at the Choc Pharmacy and then a volunteer will take us and Leo down to pick up his medication (Prevacid for his reflux) and then we can go home from there!  We got to take off all his leads and wires, he was finally free!  I put his Little Ass Kicker onesie on him that I purposely bought for this occasion, and then we waited.  It was an anxious wait but after a half hour, the volunteer finally came.  We had to put Leo in his carseat and then we put that in the wagon that the volunteer will use to transport Leo.  We got down to the basement level where the pharmacy is, and while waiting at the counter to pick up Leo’s medication, I got teary eyed because I can’t believe this is happening, and that my Leo is finally coming home!  Once we got to the parking lot, we got to put him into the car and we were ready to go home!!

He was so alert during the whole transport to the pharmacy and then to the car.  It was so cute because he was so calm and just sort of looked around at all the new surroundings.  I realized that he hasn’t really seen much of the world besides the NICU and the hallways of the hospitals and inside an ambulance.  I can’t wait to show him all the wonders of the world and go on many wonderful adventures with him.  I sat in the back seat next to my precious Leo and held his tiny hand and watched him slowly fall asleep.  We started our drive home and I just got so overwhelmed with happiness that tears started to flood my eyes and stream out of my eyes, I started to cry tears of joy.  All my feelings of anxiety, stress, and worry just came pouring out of me and I felt a renewed sense of relief, serenity, and happiness.  My heart feels so much fuller and so much lighter.  I still can’t believe that this day is finally here.  I waited 27 long hard days for this day.  It’s been such a rough, crazy, and emotional journey.  I’m just so happy that I can finally start living my life with my Leo.  I’m so proud of my little prince, he is such a brave little fighter.  He’s definitely beating all the odds and will continue to leap over hurdles and show the world how amazing he is for the rest of his wonderful life.  I love you so much Leo, you make me and everyone around us so happy!  Welcome home my sweet precious Leo!

My heart’s at home when my hand is holding yours.