Soul, Syringes and Successes

Let’s celebrate successes. On Wednesday, we had another feeding specialist appointment. Hana ate about two tablespoons of mango/brown rice puree. I was in shock. She just kept eating. Well, it wasn’t that easy. There were videos and music boxes and games and bubbles and dolls and singing involved. So, we know she can eat that much, now I just have to figure out why she won’t eat that much for me. I’ve tried since and its back to fits and crying. Her new game is taking the food in her mouth and holding it there, slowly spitting it out, a little at a time. But she is allowing it in her mouth, so that is a success!

I’ve been trying to track down the syringes I ordered on eBay. The tracking number said that they were sent back to Florida, then, out of nowhere, they arrived today. This is good because I was starting to get a little nervous about being able to draw up meds now that many of our syringes have outlived their usefulness (except as a water flush). We now have 25 new 3mL syringes. You know your life is different when you get excited about new syringes.

Wednesday night we also bought a car! We got a Kia Soul. We love it. I know many people are excited that we are not driving around in the 17-year old Honda Civic. The Soul is roomy for a small car. It has four doors. It drives smooth. It fits in our garage. It’s much, much safer. It is a real pleasure and we feel we got a really great deal. Unfortunately, from the time I left home with Hana to the time we arrived back home with the new car was five hours. It involved strolling to the MUNI stop, riding the trolley to BART, taking BART during rush hour to Oakland and then getting picked up by Paul for a short drive to the Kia dealership. I nearly wiped out on MUNI when it started to go. I also was carrying a baby, a feeding pump, a diaper bag and a folded stroller. A very nice person gave me their seat on the crowded BART car. Thank you, nice and wonderful stranger. I think I looked comical. I must have. It felt a little comedic.

Hana’s NG tube became blocked at the Kia dealership. Most of the iron I tried to give her just squirted out at me. It was time to change the NG tube anyway, since it had been in for nearly four weeks, so we just took it out. I tried giving her syringe-fulls of her milk instead and she probably took about 10mL. I was very impressed. I really think that she would take more by mouth if we could just do away with the tube, but we need her to take more by mouth before we can do away with the tube. Its such a Catch-22.

In other news, Hana had an echocardiagram and a cardiology appointment today at Kaiser. The echo didn’t show any change in her heart. The cardiologist went back into the echo room for more images because she wanted to look more closely at the apex of Hana’s heart, checking for clots. That’s mostly what these echos are for – checking for blood clots. Hana only gained an ounce in weight over the last week, which is not wonderful but the cardiologist doesn’t want everyone to get too stressed about it if she doesn’t gain a ton of weight one week. The Stanford team wants us to decrease the total volume of milk she gets by 40mL a day, which isn’t a huge change, but we’ll see if it affects her weight gain. The purpose of this decrease is to entice Hana to take more by mouth. The dietcian is worried she won’t get enough nutrition. I want to try it, especially after the encouraging feeding session.

Of course, feeding today was another battle. In addition, tube feeding was a battle too! Hana only got half of her overnight feed because the pump said she was done but half the milk was left in the bag when I checked it (too late to correct it). I’ve heard that these pumps do this sometimes. This is about the third or fourth time this has happened. Today, when Hana was taking a nap, the feeding bag came unhooked from her NG tube and the feed that was running created a nice big, sopping milk puddle on her bed. Oh well. I won’t even go into detail about the carvedilol problem. I’ll just say they couldn’t make this prescription because they didn’t have any techs working, so I guess the pharmacist made it, or not. They were supposed to call me when it was ready, but it never was. I think I have enough to get me through to Monday, when I can pick it up again.

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Bloodwork

I usually update this blog while I am pumping before bed. Lately, I have been too tired to write. I’ve actually been nodding off while pumping! I guess it helps that nothing earth shattering has been happening either.

Since the last post, we had a feeding specialist appointment, which went well – there was no crying, but it did not show any improvement, nor any regression, so I guess it wasn’t terrible. This week I’m really going to focus on this – even if it is just mouth swipes with tastes of food, just to stimulate her tongue and mouth. We go back to see the feeding specialist on Wednesday.

Hana also had bloodwork on Friday. This always makes me nervous – not the actual blood drawl, but the results. The actual blood drawl wasn’t so bad and we ran into some neighbors while we were waiting. They have a dog, which is how we met them – at the dog park. They also have a boy who is three months older than Hana. Anyway, her BNP result came back in a few hours. That’s the test that I get nervous about because it is used as an indication for heart failure and Hana’s results have been consistently climbing. This time, her result was only five points higher than 11 days ago, which is much better than the 150-200 climb that we have been seeing. The rest of the results were posted online the next day. Her Magnesium, CO2, Chloride,  and Sodium were all out of range, but they didn’t seem to be too much out of range. But what do I know? Maybe what looks slightly out of range is actually a lot.

The one number that didn’t seem to change much was her BUN. It was 13 eleven days ago, which is a normal number for a healthy baby. This time it was 15 and they would really like to see it at around 30. This is kind of a measure of how dehydrated she is and they would like her dehydrated so she has less fluid the heart has to work with. They increased her Lasix so I don’t know if she is supposed to have a higher BUN number because of that or how all that works. Hopefully we will get more answers today. But it does make me nervous that she could be holding extra fluid even with the Lasix increase.

Hana’s vomiting is about the same – once or twice a day. Sunday she didn’t vomit at all! The volume she vomits is not nearly as much as it used to be. She seems to be triggered by coughing or gagging. We’ve been trying to run her feeds when she is awake and not while she is sleeping, with the exception of her continuous, overnight feed. This is hard because there are only two hours between when one feed ends and another begins and her naptime sometimes runs into this. Her naptime is not on a strict schedule. I wish it were but with all the appointments, its hard to get on a really regular napping schedule. I don’t often have a lot of choice with appointment times either. I have noticed that Hana’s vomiting seems to be less when she naps well. I mentioned this to the feeding specialist and she confirmed my suspicion, saying that some recent research has been finding the same thing. We need rest to digest.

This week we’ve had the least amount of help, by far, since coming back home. It has been both good and hard. The amount of things to do is manageable, if I don’t have to cook, clean, shop or pay bills! We ate dinner after 9pm every night, except when we went out for my birthday! Luckily, we have a lot of frozen meals that we’ve started dipping in to. Paul has been doing most or all of the cooking. He’s pretty excellent at making pizza. This week we did have to make time to start shopping for a car, which is probably a sigh of relief for many people. Our car is a 1998 Honda Civic hatchback. It’s a manual transmission. It doesn’t have power steering and it only has two doors! It is a great city car if you don’t mind parallel parking on a hill with a clutch and no power steering. Actually, we drive with Hana so infrequently that it really hasn’t been an issue. But the time has come. The clutch badly needs to be replaced and we’d like something with more up-to-date safety features to drive Hana around in than a 17-year old car!

[I wrote this post two days ago and then never got a chance to post it!]

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GI Recheck

Yesterday was kind of crazy. Hana vomited three, technically four times. She napped very poorly and I am beginning to think that there may be a correlation between poor sleep and vomiting. It was not a question that I asked when we went to see the GI doctor in the afternoon.

When we go to see the GI doctor she really sees three people – the GI nurse/case manager, the dietician, and of course, the doctor. I keep forgetting that we have a GI nurse/case manager in addition to our regular Kaiser chronic conditions case manager which is in addition to our Kaiser Outside Providers case manager whom I never talk to because I’ve never had a problem with Kaiser and Stanford. But anyway, seeing the GI nurse/case manager reminded me that I have another source to go to when I run into problems finding syringes, NG tubes, etc. She understands exactly what I need. Our chronic conditions case manager did get syringes for us, but they were the leur lock tip syringes meant to work with needles and even if you take the needles off they don’t fit into the NG tube port.

The overall consensus was that Hana looked great. Her liver is still enlarged (I think that is what they are calling it) as it goes across her entire abdomen. But the cardiologists all feel her liver each time as well. Her weight gain has been great – about 10 grams a day. Her weigh yesterday was 7.87 kg. They don’t want to change anything. We talked about NG tubes versus G tubes. Problems with NG tubes long term (besides them irritating her and creating an oral aversion and not encouraging her to want to eat by mouth they are easy to pull out when she gets older). We also talked about vomiting, which they aren’t overly concerned about. No one seems to be concerned about vomiting if the cardiologists aren’t worried its her heart and she is still gaining weight like she should.

I forgot to ask some questions. There are more details but I’m so tired. I’m trying to get more exercise, even go to the gym and do some other “pamper myself” sorts of things. I had my first ever facial and pedicure in the last couple of weeks. I even played some guitar, playing “Blackbird” and trying to remember the chords to “I’ll
Follow The Sun”. Hana liked it. She is now nine-months old and finally likes hearing me play more than “Twinkle Twinkle, Little Star” on guitar.

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Little Things

Things have been going well. Hana still vomits once a day. Today it was in the morning and it wasn’t too much. I guess what makes her vomiting different, perhaps, from other kids that may vomit a lot is the intensity of it. There is usually crying, choking, and a lot of dry heaving. It is not like you look over and say, “Oh, she vomited!” It is usually much more dramatic. Not always, but most of the time.

I feel like things are really starting to come together. This is not without a lot of help and not enough sleep. What makes things busy for us, busier than a family with one baby might otherwise be, are the little things. It is pumping breast milk, washing pumping supplies, washing bottles, rinsing feeding bags, cutting bandages into ovals (and hearts), measuring and mixing formula, washing syringes, ordering meds, picking up meds, drawing up meds, ordering adhesive remover and NG tubes and feeding bags and syringes and adhesives and formula. It’s sending messages to doctors, logging when you fed her and gave meds and when she vomited and tried to eat solids. It’s starting her tube feed at the right time, but not when she is rolling around or when its time to nap. Its talking to the case manager about supplies and samples and breast pumps and prescriptions and what messages have come from Stanford and what echocardiagrams I need to take to them next time I am there and how much Hana weighs this week and how many times she vomited and when.  It is a lot moving parts. Not too many of them can slide, either. They all have to get done and by a certain time and not too early either!

This is why all the help has been fabulous, because keeping up with all the new stuff leaves little time for normal things like grocery shopping and making dinner and cleaning and paying bills and doing finances and taxes and laundry. But each day it gets better, mostly. Today was a good, low-key day. We took Poppy on two good walks and spent the rest of the day getting naps (Hana, not me) and attempting solid foods and bottles and giving tube feeds while she was upright and awake but still getting time to practice crawling on the floor. Tomorrow we go back to the GI doctor. I have a long list (in my head) of things to go over, like choices of medications, and weight gain and types and sizes of tubes and formula, volumes and rates of feeds and how much to fortify and when I should stop pumping breastmilk. There are more questions, I hope I can gather them all together before I forget!

Here are some photos from the last couple of days.

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Genetic Testing

So, I’m beginning to settle into a reality that Hana will vomit once a day. Since I’ve done so, it feels easier to manage. I will carry towels and a change of clothes (for both me and Hana) everywhere. I started keeping towels and basins handy for the unforeseen vomit. Yesterday she vomited all over me (and herself) while we were out and about and today she vomited on the carpet in her room. I just hope she is too young to be self conscious of it but I’m beginning to think not. Oh, my sweet baby.

Today my big project was chasing down one of Hana’s meds – her Lasix. I reordered it on Tuesday but it was still not ready and I realized I accidentally requested it be mailed to our house. Fortunately, the pharmacy tech only gave me a little bit of attitude about the whole thing. I hate asking for favors, especially when I’m to blame but Hana was completely out of Lasix so it must be done. I’m still learning how to manage all of her meds and I’m still learning the Kaiser system so I shouldn’t be too hard on myself. Right?

The other problem we are running into is our supply of syringes. I’m kind of amazed how difficult this is for people to grasp. I need syringes that can be used to administer meds into Hana’s NG tube. That shouldn’t be anything too special. But I guess it is. Or, it is hard for people to imagine that I’m only drawing 0.7 to 2.4 mL of liquid at a time. A 10 mL syringe is neither necessary or helpful since it doesn’t allow me to measure precise enough. There are more types of syringes than I ever imagined and you pretty much need a prescription in order to purchase them, that’s including the ones that don’t even work with needles! Our current supply we stockpiled after use during Hana’s hospital stay at Stanford. But now the plungers are wearing out and the numbers are wearing off.

The big news today was when the nurse practitioner from Stanford left me a voice message to call her about some new test results. I got very nervous and very confused since I had no idea what results they could have possibly received. It was the genetic testing results that were sent out two months ago just before Hana was discharged from Stanford. They tested 60 genes that they know of to look for the gene mutation that causes dilated cardiomyopathy. They found nothing. This doesn’t rule out genes but it does rule out a reason to do genetic testing on me or Paul. It’s possible that there is a gene they don’t know about. We still need to get our hearts checked every five years. For some reason, the news relieved me. Maybe it’s because I can have more hope that her heart may recover which isn’t really a possibility if the root cause is genetic.

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Cruising Altitude – Checkup At Stanford

Today Hana had her regularly scheduled checkup with her heart failure/transplant cardiologist at Lucile Packard (at Stanford). Her weight is up to 7.7 kg (almost 17 lbs) which is 170 grams more than last Tuesday. They were able to get her blood pressure (sometimes, most times, they aren’t able to get it) which was 108/55. They could her an intermittent gallup in her heart. They talked about her creatinine levels. They decided to adjust her Lasix so she is more dehydrated. She is more dehydrated than most normal babies, but too hydrated for a baby with a poor heart. But the overall assessment is that she looks great. They called this her new cruising altitude.

That means that we will watch the weight gain trajectory she is on. They will still be increasing some of her meds until they get to the levels that they want. We will watch the vomiting, since this is a normal occurrence for many tube fed babies, but there seems to be much hope that she will eventually take things by mouth and the tube can go. One vomit a day is not so bad, they say. She recovers well. They said we can all relax a bit more and just focus on enjoying our baby. The cardiologist said he didn’t even want to bring up “the transplant topic” on this visit.

They increased her Lasix from twice to three times a day. They doubled her Carvedilol again. They will wait until next time to increase her Enalapril. They want to do bloodwork again in a week to check how she is doing with the increase in Lasix. We will do another echo at Kaiser in a couple of weeks and we will go back to see them at Stanford in a month.

I am feeling much calmer and relaxed. They even said we could think about making travel plans, including a possible airplane flight. They said to just treat her like a normal baby. I can take her swimming again and they also said to go ahead and take her on the bus! I’ve been avoiding the bus because of small, enclosed spaces with lots of people, but it has kept us confined to walking distance from our house (and we only have one car which Paul takes to work).

I think we are really starting to get into a rhythm. We definitely need less and less help at home, most days. I could still use more sleep. Some of the conveniences that we pay for people offer to us are still making it manageable, but I definitely see a cruising altitude for all of us soon! We are so grateful for all of the support and help that we have received from so many people!

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Control

Today Hana vomited. There didn’t seem to be any rhyme or reason for it either. She wasn’t upset. She wasn’t fed too fast. She wasn’t fed too much. She hadn’t recently had her iron or other meds. She wasn’t squirming around too much. She wasn’t laying down. She wasn’t too tired. She didn’t cough or gag herself. But she still vomited. I wish I knew why so I could prevent it, because I can control all the other things, maybe not directly, but I can figure out a way to carefully tinker with the situation so that she doesn’t vomit. But not when I have no clue as to why. This is where I have no control.

When you spend a lot of time at home trying to juggle a situation with a lot of moving parts, you learn to try to control as much as you can. Or, at least I do. But this is a trap because it is a fool’s hope that you do, in fact, have control over a situation. It is scary and nerve wracking and promotes uneasiness to feel like you are not in control. Sometimes I freak out a little bit. Anything that gets slightly out of balance and I feel like the whole world is going to fall apart. (Okay, that is a bit of an exaggeration.) I keep trying to build it back up, to keep it on track. But this can create craziness and can make me a pretty unfun person to be around.

Today Hana had bloodwork done. I hate this. She hates it. It actually went pretty well and they only had to stick her once and the blood came quickly into the three viles. Then, this evening they had the results already, online! I checked them, feeling nervous. I’m searching for her BNP levels. My heart sinks. Now it is 1049, up from 899 last time, which was up from 696, which was up from 411 when she was discharged. I know, they say this is just one factor and is not necessarily a good indicator of the overall situation, but still. I still want the numbers to be going in the other direction, or at least staying steady. This BNP number is not something I can control. It feels scary and nerve wracking and it makes me feel nauseous, maybe I’m the one that could vomit.

I think of yesterday, Mother’s Day. I am so happy to be a mother. It is the greatest honor of my life. I don’t need a “mother’s day” to remind me of this, it is something I think about every day since Hana was born. I can cherish each moment with my baby that I love so much. I can live in the present moment. I can show her my love and care for her the best way I know how. Those things, I can control.

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