I wish I could say that Hana was continuing to drink 14 ounces of milk a day, but she has begun to refuse her Milk Bear and the most we seem to get her to drink is, on average, about 7-8 ounces per day. Still, that means that we don’t have to use the feeding pump until almost 4pm each day and that is a HUGE quality of life improvement for everyone.
With more freedom from the feeding pump, Hana has been able to do more crawling and standing practice. I love watching her move! It is so much better than keeping her in the walker! She is so much happier too. She is sleeping much better at night, which means I sleep better too. It is harder in that I have to give her Priolosec and then and hour later start her last feed and an hour later turn off her last feed, so I often don’t get to really sleep until 2am. But I nap in between, or fall asleep pumping…
I have been doing a lot of research and reading about these kids with feeding tubes and how people have weaned them off of their tubes. What I’ve learned is that it is:
1. It’s often the hardest thing a parent has had to do (other than having to see their child in the ICU, I suppose).
2. It is often a very long and slow process requiring a lot of patience. It is best to let the child lead you, instead of the other way around. It’s on their terms, not yours.
4. It is counterproductive to try to “force feed”.
5. It works better when you completely let go of expectations and do not put any pressure whatsoever on the child.
6. It works better to have peers “show”/demonstrate eating.
7. It works better to have a family mealtime ritual.
So, I can set up the baby Play Picnics at my house and have babies come over to eat and make messy play. Paul and I can sit at the table regularly and “eat” meals. These things do work, although very, very slowly. BUT, the part that is killing me is the letting go of expectations and pressure. I’m used to living life where hard work and sacrifice will get you a lot of things. But now, that is just not the case. What I need to do is to completely let go and trust that Hana will eat when she is ready and that no amount of effort or hard work on my part is going to make a difference, well, if will, it will just make it worse!
Hana had a bit of a fussy night and in the morning I found some damp vomit on her bed and pillow. It always hurts my heart a little bit to think that she vomited at night an no one came to comfort her. But maybe she really is ok with it and its just me. This is the third time its happened.
About twenty minutes after she had all her morning meds, all were given a little on the early side, I very quickly pulled out her NG tube. She cried a tiny bit. Then I took her to see Paul and drink her morning milk. Unfortunately, it seems that the first milk of the day comes right back up. At least it is an easy vomit, not like her really bad retching vomit episodes. Unfortunately, she vomited on our bed, which is not protected for baby vomit. She recovered quickly and was back to drinking milk.
All in all, Hana drank 14 ounces of straight breast milk today! That is three more ounces than yesterday! Tomorrow, I will start fortifying it just a little to add calories and hopefully get her used to the taste. We didn’t have a whole lot of luck giving her Lasix, which is the only medication in the middle of the day that really needs to be given at a certain time. I tried letting her taste the Lasix from the syringe and dropping a little bit in her mouth but she was gagging before the syringe even hit her lips! Then she vomited a mouthful and I decided to try another approach. We put the Lasix in some of her milk and she very slowly drank almost all of it. I don’t even know if you can give meds that way, but I figured trying it once wouldn’t be terrible.
The most amazing thing about the day was how happy Hana was most of the day. All babies have fussy periods of the day or a few moments of unhappiness when they don’t like something and Hana certainly had those. But she was noticeably a much happier baby all around. She laughed and smiled more. She was more active and playful. She babbled more. I really think she was so much happier not having the NG tube and not being hooked to the feeding pump. It breaks my heart to think that she could be this happy every day if only she didn’t have that tube. If only…
It broke my heart to have to put the tube back in before bedtime. It is traumatic every time you have to put the tube back in – she cries and screams and gags and almost vomits and squirms. Its terrible. I imagine for nurses that have to do it for babies its not too fun, but to have to do it to your own baby really sucks. On top of all that, it almost felt like I was forcing her back into this unhappy state. I hate it. Afterward, I cried a little.
But, we move on. She saw the feeding specialist again today who still thinks she is improving, although slowly. Her drinking is certainly very promising. Hana is definitely more interested in playing with food, even if she is not putting it in her mouth. She is beginning to mimic us when we eat. It will come. I know the day will come when she is eating and drinking and the only reason we have the tube is for her meds. Now if only I could get her to take her meds orally!
A few weeks ago the dietician at Kaiser wanted to change Hana’s feeding plan. This has caused a professional “conflict” between Kaiser and Stanford. At Stanford, they want to really move us towards getting Hana’s NG tube out and they try to accomplish this by reducing the number of calories that she gets in hopes that she will feel hungry and start to eat. At Kaiser or perhaps more with the dietician than anyone, they want to make sure Hana is getting adequate nutrition during this important period of her development. Of course, they would also like to see the NG tube go at some point but they would go about getting rid of it by reducing the volume of liquid she gets, while increasing the fortification of the breast milk she gets.
My default is to do what Stanford says to do. So, since the dietician was not returning the calls of the nurse practitioner at Stanford that very, very closely follows Hana’s care, I defaulted to what the nurse practitioner said and did not make the changes the dietician wanted. Let me wrap up this long back and forth story to say that, in the end, we are keeping Hana’s volume of milk at 800 mL and increasing the fortification to 30 kcal/oz. BUT, I am offering her straight breast milk first by mouth and whatever she does not drink I fortify and then run that through the feeding tube. Eventually, Hana will have to drink the fortified milk or start eating food! In addition, she is getting five feeds a day. A smaller 80 mL feed in the morning and then five 130 mL feeds that run over and hour and spread three hours apart. Three of those tend to be while she is sleeping – one while she is taking a nap and two after she has gone to bed. The best thing about these changes is that she getting fed a lot less at night. No more overnight continuous feeds and no more around the clock 3am or 6am feeds. I do have to do a midnight to 1am feed, but that’s manageable. Hana sleeps much better too!
I started this “experiment” kind of own my own on Monday. I got the “blessing” to do it after the fact. I figured one or two days was not going to harm Hana. On Monday Hana drank 9.6 ounces over the course of the day. The most she has drank before that was less than 5 ounces! Today, Hana drank 11 ounces! Overall she gets 26.6 ounces a day, so she’s not quite at half yet. She has drank all of it through her “Milk Bear”.
In the meantime, I am really trying to get her to become more interested in solid foods! We’ve sat and watched a couple of babies eat in the last few days and it has not really enticed her to eat more than a very small amount on a spoon. I’m working on setting up food play as much as possible during the day. Today I set up a sheet in one room with the inflatable kiddie pool and all kinds of food. I’ve bought some new tools too and I’ve stopped really trying to feed her. Instead I encourage her to try eating herself. I think she really took to drinking from the Milk Bear because she could control it herself, maybe it will be the same with foods.
Tomorrow we are going to take her NG tube out in the morning after her morning meds. Now we know she can go a good amount of the days drinking the milk she needs so it doesn’t seem as risky to take out the tube. There is only one medication that she absolutely needs to get in the afternoon that will be tricky to give without the tube. I gave Hana Tylenol for teething several times before she was ever in the hospital, but now her gag reflex is so strong, I hope she doesn’t vomit. Who knows? Maybe it will go great and she will drink so much milk and take all her meds by mouth that we won’t need to put the tube back in? That would be a small miracle!
Hana seems to be recovering from her UTI just fine. That being said, her weight gain has been off. First she gained 12 ounces in ten days. Then she lost 5 ounces in the week she was sick. Overall everyone is very happy with her weight gain and would like to reduce the volume of her fortified breast milk to see if she gets hungrier and starts to eat more. Of course the weight thing always makes me worry. On top of that, she seems to be vomiting more, but I kind of think that the antibiotic she is getting is upsetting her stomach.
Hana’s feeding of solid foods has been very stagnant lately. She is still drinking well out of her Milk Bear, but, in my mind, the solid foods are getting worse. Having Christine here last week helped a lot in that department. She helped me set up an inflatable baby pool that we put Hana in with a whole bunch of food to let her slide around and get messy with edibles (of course, there was no water in the pool!). It worked ok, but mostly Hana wanted to climb over the edge. The foods she did touch did not go anywhere near her mouth. I’ll keep trying this method, because I want her to learn that foods are fun.
The best luck we have with feeding solids is when Hana gets to watch a real, live baby eat right in front of her. She had the opportunity a couple of times in the last week. She easily ate more than any other time and without much of a struggle. Hana eating a lot would probably be another baby licking the food off their own face, but we are starting slow! Since we have had so much success with the Baby Lunch Dates I would love to get together with as many solid-food eating babies as possible. I will come to you. Please, if you are interested let me know! It doesn’t have to be a big time commitment either. We will come and then probably twenty minutes later we will go!