Our HLHS Journey: Big Changes

There were many BIG changes in our lives this week. 2 of them are pretty major and have their positives and negatives and were dealing with both.

1. Jasiu has been off of the NG since July 30^th

2. I’m back at work since August 1^st

Jasiu –

At our last appointment as I explained we were given the green light to remove the tube and let Jasiu show us what he can do with the bottle. His minimum requirement by cardiology was 16-17 ounces in a 24 hour period. Last tube feeding was just before midnight on Friday and out goes the tube !!! First feeding on Saturday was around 6 am and Jasiu did his usual 2 ounces. I was happy but not thrilled… He continued to “sip” this entire day at a rate of 1.5 to 2 ounces at a time for a grand total of 17.5 ounces... Yejjjj we met the goal, but I’m still not happy with the “snacking” that is going on. The next day Jasiu takes in 20 ounces total, an improvement in total feeds and somewhat in the snacking… the next were back down to 18.5 and Tuesday to 20… So it’s an uphill battle. We are trying to refrain from feeding him every hour because he won’t learn true hunger and that the bottle will satisfy it but learn to continue to “snack” which is not healthy for him in the long run. He does his best eating in his sleep which for a baby that is pretty normal, however at the unconscious state, again, he’s not realizing what is happening and were back to snacking. HOWEVER, I am more than thrilled that he is able to take in as much as he is. There is only a small issue here, at the rate he is going, not taking in more than 20 ounces of his already 24 calorie fortified breast milk, he is NOT GAINING WEIGHT. As any Heart mom knows, this is a BIG deal. Next to heart issues, GI and weight are the close second . He has not lost weight, but not gained any in over a week either. We are working on picking up the volume or maybe cardiology will suggest picking up the calories per ounce we will see what they say at our next appointment. My biggest fear is that they will tell us to put the tube back in and that will be terrible for all parties involved and we start the vicious cycle once again.

Another great side effect of no tube, is there is also no throwing up. Since Jasiu is not throwing up, we were also OK’d by cardiology to discontinue as a trial run the stomach medicines, so no more Prevacid and Zantek for the last 4 days either. Since we discontinued the meds and took out the tube, I have not seen any signs of reflux yet which I firmly believed all along was caused by the NG. Jasiu is still taking the Enalapril for his blood pressure, but it’s such a small amount that by the time he realized he was given meds, Jasiu already swallowed it with barely gagging at all. I hope that his BP will continue to stay down and he won’t need any larger dosages of that medicine. Our great pharmacist made it banana flavor so it’s helping a little bit J .

This first part was written on Wednesday, today is Saturday, and we still have a snacker on our hands. No more than 2.5 ounces will go in at one time L. We also saw Speech therapist on Friday and they think that he still does have reflux, just silent reflux where we don’t see him actually throw up but has wet burps and is starting to make a cranky face when he does burp. This is not good either so we were suggested to do an upper GI test and that is next Friday.

In the 20 weeks anticipating the Jasiu’s birth and knowing that this journey will be a hard one, never even for a split second did I think or know that feeding will be one of our worst challenges. You can not teach someone to eat nor can you force someone to eat . As every doctor tells us, there is no magic pill we can give him or know why he refuses to take in larger amounts or even small amounts more often. The NG or even the G tube should be temporary solutions while the baby somehow “gets it” and I really wish Jasiu would do this soon for his sake, so we don’t have to put the NG back and for my sake so I don’t pull out what is left of my hair.

We are all praying that this trend continues uphill and as we all know that you don’t just run the marathon in on e day, this will require a lot of practice and patience which we must all deal with, in “we” I mean ME, and my husband , my mother in law and my mom. This brings us to the second BIG change…

Back at work -

As of Monday August 1, (actually great timing work wise because it’s the beginning of our fiscal year) I am a WORKING mother. I have been working after Emily was born and though that transition was not easy, it’s SOOOOO much harder this time around. My husband on Mondays, mother-in-law on Tuesdays and Wednesdays and my mom on Thursdays are all capable of taking care of Jasiu and Emilka but it’s still hard to let go. I am a completely crazy control freak and I hate not knowing what is going on over there. Grant it they have succumbed to writing down a lot for me, like the time he’s feeding, how much and how many wet diapers. I don’t expect them to tell me exactly how much he slept or cried or played, etc.. For the 5 months I was with him, I was tracking most of this to try to make sense of it all or try to see a trend, I will have to let go of this. The only good thing about work being so busy as it is, is that time flies very quickly and though I feel like I have not enough time to get everything done there, I feel like I get to see the kids quicker too. Since I’m back , the “pump” is going back. I tried pumping twice a day, but it’s harder than I thought and with 4 freezers full of BM, Jasiu is more than well taken care of. If he was nursing it would be much easier, however before and after work I have to be away from him to do it so that is an extra 15-20 minutes that I lose with the kids. So I decided to quit. As sad as I am about it, it’s like a weight lifted off of my shoulders and I am starting to feel much better about my decision.

Back to Jasiu –

He is also a very happy baby lately. He is sleeping in his own room, though we miss him in our bedroom 2 feet away. We are doing belly time and he can flip from his belly to back but not back to belly yet. He’s close but not yet. Today he got really close, see the pics below. We also pulled out the Extesaucer for play time and he loves it for a little but is still wobbly in it. What a big difference two surgeries make. Emily was in the saucer at 4 months old already, but we know he’ll get there also. Jasiu is also experimenting with solids. I don't have a pic of the first time because it was with the speech therapist and I was not ready with the camera at the hospital on Friday, but the first time at home was with me. It's quite funny to see his expressions but the good part is that he was not gagging at the taste and texture and he can swallow it. He must have had two or three spoonfuls total in very very small quantities, more like dips on the spoon, but this is a major milestone in our lives. I hope he grows to like apple sauce and the many foods we will introduce as time goes on. The face expressions are priceless.