NG tube – Hana's Heart

New Bloodwork Results

Posted on August 3, 2015 by kathleenyago

This past week has been about the same. Hana had a cold with a runny nose and she really didn’t want to drink from her Milk Bear. Today she only drank two ounces although she’s been averaging 6-8 ounces. She was definitely more cranky and then I worry it is her heart. Maybe “worry” is the wrong word, perhaps its more like I’m on high alert.

One day last week, she vomited in the middle of the night and her NG tube came out. We decided to leave it out rather than place it again at one o’clock in the morning. The next morning we wanted to give her as much time free of the tube, so Paul went to work and I thought for sure I would be able to find someone to help hold Hana while I put the tube in. Well, it was getting late and I needed to give her medications (via the tube) before too much more time passed. I wasn’t able to find anyone around to help hold Hana. I was getting desperate so, of course, I called my mom.

My mom was able to instruct me on how I could hold Hana so that I could put her NG tube back in by myself. If you have not witnessed NG tube placement on a baby, I can tell you that it is very unpleasant. Hana is squirming, arms flailing, head going from side to side. She is screaming, sputtering, crying, choking and gagging. It’s awful and as the mom or the parent, it feels even worse. I had to take a few moments to take some deep breaths and psych myself up. I decided that if I couldn’t get the tube in, I was going to walk down to Kaiser and ask someone there to help me.

I swaddled Hana’s arms by her sides and then sat in an armless chair with her on my lap. I put one of my legs over hers and then had all the things I needed laid out on her high chair tray. It took a couple of attempts but I got the NG tube in and I managed a pretty nice tape job too. I don’t know if I’ve ever been more proud of myself. It was very empowering. I had thoughts of letting her go tube free more often, for several hours a day because now I could just put the tube back in myself. I don’t know if I want to subject her to that much trauma every day. I wish I knew which was worse – having the tube in constantly or getting a break from the tube but having to endure getting it put back in more often.

Last Friday we had to get bloodwork for our upcoming appointment at Stanford on Tuesday. From what I can tell, the majority of her tests were basically “normal” or at least the same. One test – BUN (blood urea nitrogen) was twice as high as the upper range of normal at 34. I know they talked about maybe having her level be close to 30, but then last time, when it was 15, they seemed satisfied. BUN measure dehydration. They want to keep her dry because it is less load on the heart.

The other test that was different was her BNP which is B type natriuretic protein. I’ve talked about this before. It is basically a substance that is secreted by the ventricles when the heart is in failure. It was going up and up and up since Hana was discharged from Stanford. At the highest it was 1055. Now is is at 589. I think that is great, but we’ll see what the cardiology team at Stanford says. I’m still happy that it is going down instead of up! (By the way, normal levels would be below 100).

Now we just need to get her eating! I’ve been researching a tube weaning approach developed in Austria called NoTube. They have a netcoaching program where they talk with you via web conferencing every day for an hour or so for three weeks. Apparently they have a high success rate. It does cost $4,000! What really turns me off is that they seem like really pushy sales people so I have a level of mistrust. Maybe it is just a cultural thing. I don’t know.

Her Happiness Breaks My Heart

Posted on July 15, 2015July 15, 2015 by kathleenyago

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!

Focused On Feeding

Posted on June 17, 2015 by kathleenyago

My sister Laura was here this past week. It’s been really good to have the extra help, especially when it comes to feeding. Especially when its Laura. She’s an animal whisperer. At least, that’s what I think. Our dog Poppy came from her and I swear she works magic on animals. I think that includes babies.

After our feeding specialist session last week, in which Laura came with me, we decided to focus her week here on getting Hana to eat and drink more. She got to see how the feeding specialist worked and we just took that home and tried to build on those techniques. So, three times a day we tried to get Hana to eat and drink for 20-40 minutes each session. That’s a lot of time and it requires a lot of patience. It also seems to work better with two people. One person entertains Hana and the other person tries to slip food into her mouth.

We’ve discovered that Hana really doesn’t care for anything sweet. That leaves all prepared baby foods pretty much off the table (literally). I made some whipped potatoes and whipped broccoli. I whipped them with greek yogurt – which is Hana’s favorite food. I also whipped up a very small avocado. We alternated between these foods, mostly choosing potatoes and yogurt. Hana will actually grab the spoon of yogurt and put it in her mouth herself, which is really amazing. The others she’s not so crazy about. The more yogurt it has in it the more she likes it.

After trying to get her to eat we try drinking. I bought something called a Mr. Juice Bear which is used for special needs. It looks exactly like a honey bear container except that it has a straw in the lid. You gently squeeze the bear and liquid comes up the straw. We tried it with the feeding specialist first. Hana was ok putting it in her mouth, which was the amazing first step. Then we squeezed breast milk up the straw into her mouth. She didn’t protest, which was also amazing. Throughout the week of trying this we found we didn’t need to squeeze the bear to much, Hana was sucking it up through the straw herself!

It felt like a breakthrough week! It was not without a lot of time and effort. Still, she is only taking about 10-20mL of food and 10-30mL of milk in each session. That’s still less than a tablespoon of food, more like a teaspoon. The milk is an ounce or less. But I am seeing progress, although it is painstakingly slow! I think once Hana can be off the feeding tube life will become a lot easier!

In other news, Hana is speech delayed, so we are trying to also focus on promoting more babbling and making consonant sounds this week. We’ve been working on sign language. I play the Baby Signing Times DVDs for her when I need to keep her still and upright. She loves them! I don’t know what we would do without them but Paul and I are really sick of the songs, but at least we know the signs too. Hana is waving and clapping and the only sign she has made with the DVD so far is “outside”. It was amazing to watch! I also use an iPhone app for additional signs.

I will say a few words about diaper rash. Almost every diaper is a poopy diaper. Is this too much information? This makes it very hard to prevent diaper rash. I should buy stock in Desitin (is that Johnson & Johnson?). Even with a thick layer of maximum strength Desitin and an equally thick layer of Aquaphor, her diaper rash persists! She cries during diaper changes. We finally got a prescription strength cream from the pediatrician, which I think is making the difference. I change her diaper whenever I think she has pooped or every 1.5 to 2 hours. I am hoping that we can eventually go back to cloth diapers! I wish this kid could catch a break! She has so many discomforts.

Tomorrow we have an appointment with the dietician and then later we have to go to Stanford for a clinic visit. Hopefully everyone will be pleased with her weight gain.

This is how we hook up Hana’s feeding pump (in the hanging black backpack) and keep her upright while it is running.