Month: March 2015

Today and yesterday we started to get some more help. People brought food and came and helped do things around the house. Even though many of the tasks were very simple, like washing bottles, it made a huge difference. Not only does it lessen the stress and burden, but it gives me more time with Hana. I’m really needing that right now. I feel like the last several weeks were so harsh that now we need some extra time to bond. Hana has also been very clingy to myself or Paul, so maybe she is feeling similarly, or maybe she is just going through what normal six-month old babies go through.

Hana, temperament and health wise, is about the same. She vomited last night and this morning, but I also think I’m starting to lose track. She does have smiles and giggles for us and that is a lot of fun. Today I talked with a nutritionist who had some advice about Hana’s weight gain and what solid foods to introduce Hana to. This morning we actually gave Hana her first official solid food – avocado! (Her first unofficial food was lemon juice!) She was very interested and licked it right up (and played with it and smeared it all over). We will try some more tomorrow! As for me, I’m actually much more well rested because I slept through one of Hana’s middle of the night feedings, so I got four hours of sleep in a row! It really made a difference!

Hana had a fussy night and I think I was up every ten minutes or so for a couple of hours. Maybe this is her new normal? Maybe this is her acting like the six-month old that she is? It’s funny, when we brought her home from the hospital, part of me thought we would be trying to get her back to the baby she was when all this started, forgetting that she is a month older! Of course she is going to be different, she is now six-months old instead of five.

It was a good day – she had smiles and laughs for us! She also had some major poopy diapers (the kind where poop shoots up their back). She also vomited before bed. So, I guess this is the new normal, another day with Hana. She didn’t nap well at all, one time she rolled off her bed (we have a lowbed, which is a infant safe mattress on the floor instead of a crib). She drooled a lot, so maybe she is teething again. She is a lot like a normal baby, with normal baby things and you could almost forget that she has a very sick heart.

I write the above sentence and it feels eerie, the part, “she has a very sick heart.” I wish I were saying, “She HAD a very sick heart.” When I see her doing so well I have confidence she is going to be fine. I don’t know if I am setting myself up for disappointment. I don’t want to take the wellness she has right now for granted. I don’t want to forget many of the things I’ve learned and discovered and felt and feel. We have her today. When I was putting her down for bed. I felt her little body under my hands as I patted her to sleep. I kissed her and I felt grateful that I got another day when, at one point, I thought I wouldn’t get one and I felt lucky and grateful that I had another day with Hana.

My mother left around 6am this morning. We are so grateful for all her help. I don’t know what we would have done without her. Some time after Hana’s 6am feeding and when I finally got up around 8am, she vomited in bed. I found a big wet spot later. But despite that we did okay today. I got to take a bit of a nap. It was really, really warm in San Francisco and we took some time to sit outside a coffee shop and talk. In the evening we did a lot of the daily chores my mom had been doing. Even with the two of us, it took quite a while. I think Paul especially was surprised how long it all took, since he had been working while most of that kind of stuff was being done. Today, I was feeling a little depressed about everything. I’m so grateful for all the help and support, but the whole situation is still daunting and, in some ways, we feel a bit trapped or tied down. It is kind of a big deal to go anywhere. It’s hard enough to get time to do things when you have a baby, but now, I feel like our radius from the house that we can travel is much, much smaller. I am determined not to let this get the best of me. I just don’t have the time or energy to be depressed right now. Do I get a choice?

Today started out great! We had a happy baby with lots of smiles! But she got really cranky as the day went on. She threw up a little, not too much. Paul spent the night with Hana in her room. I still got up every hour to get feeds ready, give medications, etc. but I felt like I got a lot more sleep than any of the other nights. I am still really, really tired. I’m so tired I can barely put sentences together to write this. But one good thing about today was I got a glimpse at how life might be like if Hana is not so cranky and that looks like a life where I could manage things by myself again. But Hana is obviously not ready for me to handle things on my own again. I don’t know if it is teething or gas or the MMR vaccine or something else, but she really turned into a stinker pot late in the day. For the record, I love that she is a stinker pot.

My mom leaves tomorrow! I can’t believe it! She has been so amazing to have here. It helps that she is a pediatric nurse and a good portion of her career included working in the Pediatric ICU. She is so great at jumping right in and finding what needs to get done. It also helps that she loves Hana so much and is deeply invested in her well being. We will certainly miss her.

Thank you for reading. Thank you for supporting us. Thank you for your thoughts and prayers. I am so tired now, good night!

I’ve always prided myself on being a very independent person. I would do my own thing, by myself, alone. Most of the time, it really didn’t even occur to me to ask someone else to join me. But sometimes I did want to prove that I could do it by myself, that I didn’t depend on anyone. Now, this sometimes proved ridiculous, like when I was carrying at least ten bags into work one day full of things for an office party. Some guys returning from lunch at the same time, offered to help, take a few bags, or at least open the door for me. I said, “What? Do I look helpless or something?” How insensitive and prideful of me to refuse help and to actually be a little insulted!

Oh how times have changed. As a new mom I wanted to do as much as I did before I had a newborn, even more! I wanted to prove to myself that I could keep up with everything, that I could still keep everything under control. But its funny how life is sometimes. Now, as much as I still doubt that maybe I could somehow do it all myself, I could just get even less sleep, I could never sit down to rest, I know that now I really need help. Now is the time that I need to ask for help. My mother is leaving on Saturday morning and for the first time in my life, I’m really not sure how I am going to keep up with everything that needs to be done after she leaves. It’s scary. Its a loss of control. Its a vulnerability.

People have offered help. It has been so wonderful to read and hear the offers. It feels warm. It feels so supportive. In the beginning of all of this, I had no idea what to tell them, how they could help. Now the dust is settling and things are becoming clearer. I need help and I would love it if people would help me. I’ll admit that it still makes me a little uncomfortable asking for help, and my mind keeps questioning myself. Do you really need help? Can’t you just get up earlier and go to bed later and still get it all done? Do you even deserve help? But I am going to ignore those questions of my mind. Yes, I need help. I need your help. Please help me.

Here is how I need help – I need help cleaning, not necessarily my house, but bottles and syringes and vomity baby clothes and sheets. I need someone to help pick things up and organize some of the chaos that builds from each day. I need someone to help me with meals and shopping. I need someone to help me get some things organized. I need someone to fill my water bottle because I desperately need to stay hydrated and I often don’t have time to get water. I need someone to hold Hana while I sit and pump, because its hard to hold a baby and use a breast pump at the same time. A few friends who are also neighbors set up a help website, where you can sign up to help.

https://www.lotsahelpinghands.com/c/726316/

Again, it feels awkward for me to publicize my need for help, but I really would be very, very appreciative. At least until I get used to this new routine. In the hospital, especially in the ICU, the nurses and doctors kept telling me to go and get some sleep because Hana was going to need me even more when she started to get better. I thought, how can I possibly sleep now? But they were right. It feels like a marathon. And, as someone recently described, now sleep is really more a series of naps. You never really get to lay down to sleep. The day is gone before you know it. It is mid-afternoon and I am still in my pajamas. It is 8:30 at night and I finally have to think about making dinner (in between giving evening meds, 9pm feeding, and breast pumping again). It’s harder than having a newborn because I feel there is a lot less room to let things slide. You can’t be too late giving medication. You have to pump milk for the baby to drink. You have to run the feeding pump by a certain time so that you get enough calories in her in a 24 hour period.

Hana was very fussy today. Very fussy. She really didn’t want to be put down at all, she wanted to be held constantly. She also had her six-month “well-baby” visit with the pediatrician, which seems so strange to have considering all that’s gone on recently. But we do need to take care of other things besides her heart. For example, she has a hemangioma on her eyelid (you may have noticed that one of her eyelids looks “swollen” in some of the pictures) that needs to be checked again. But, I’m not sure exactly why she is so fussy. It could be the top tooth that just poked through today, it could be that she seems to have terrible gas or it could be the iron supplement is bothering her stomach, or something else. Whatever it is, I hope it clears soon so that she can have some relief! I love that sweet baby.

It was a month ago today that all of this came crashing down around us. It has been the longest month of my life, by a lot. It’s almost hard to remember what it was like before all of this happened. But I do remember. It comes in flashes like the brief moment of jealousy I feel when I see a baby or a child, especially if they are Hana’s age, and think that they get to grow up with a perfectly normal heart. But I don’t dwell there. So many people have worked to get Hana to where she is and maybe someday she too will get to grow up with a perfectly normal heart. I remember thinking in the hospital how grateful I was, not only to all the doctors and nurses, but to all the people who created the medications and devices and even invented the materials used in the devices that were all working to save her life. That’s a lot of people. I am so grateful.

On the other side of things, there are a lot of people supporting Hana. I know I’ve mentioned this before, but I will never be able to say how much it means to us. Today, for example, we were brought lunch, dinner, friends took care of Poppy and organized getting help for us after my mom goes home, we received a fruit arrangement, offers for help, care packages and cards. I often wonder what I did in my life to deserve such amazing people. Nothing can prepare you for what happened to Hana and how it happened and yet, I feel like every moment of my life has somehow been preparing me for this. Somehow all these people who I have known in my life, some of them only in passing, some of the people I don’t know at all, but they are here now and they are cheering on Hana and holding us up.

It was a rough night last night. I found Hana lying on her stomach and crying, although not unusually crying, but I discovered that she had vomited. She hasn’t yet vomited alone. She vomited again later that night and then a little bit again today. She was fussy and clingy and seemed bored with all her toys or usual activities. I wonder how the trauma of all of this has affected her. She fell asleep sucking on her pacifier while I rocked her to sleep. It felt really, really nice. The days are long and fast and I sometimes wonder how long it will be before I get a moment to myself. Tomorrow is Hana’s six-month well child visit! We will be seeing a new pediatrician, since we are now Kaiser patients. I hope it goes well.

Today, Hana went a full 24-hours without vomiting. It’s strange to think that this is something to be happy about! The big event today was Hana’s first checkup at Stanford after being discharged from the hospital. As is the new usual, it took quite a long time to get out the door for the appointment. But we got there, got settled and one of the fellows from the CVICU walked in to start her exam. I was glad to see a familiar face. While she was doing the exam, Hana vomited! It got all over the front of my shirt. I really wasn’t that much vomit (well, not compared to the other times). I was actually glad she vomited, so that the doctor could see, first hand, what was going on.

After calming Hana down (not from vomiting but from getting her clothes changed) and completing the exam, the fellow physician left to talk to the attending physician. They both came back and we talked with them for a while. The conclusion for this visit is that Hana is still doing amazing. Everything looks great. She is gaining the right amount of weight (too little and it would be a problem, too much and it could just be that she is retaining fluid). We should treat her like a normal baby (except maybe avoid prolonged bouts of stressful crying, but what parent doesn’t want to do this? For me, this means we probably won’t be choosing the “Cry It Out” method of sleep training). She should do all the normal baby things (except breastfeed or take a bottle, but perhaps that will come in time). They will continue to watch her very carefully and when she gets sick, like normal children do, we may have to watch her more carefully than a normal-heart child.

On the topic of vomiting – it could just be part of her new baseline. Some kids throw up (spit up) a lot. It doesn’t seem to be caused by a failing heart. It could be her NG tube. It could be what seems to be a very sensitive gag reflex. It could be air from the feeding pump. They prescribed her some Zantac to see if that helps, but even if it doesn’t, they don’t seem to think it is a big deal. Other than that first night home from the hospital, the vomiting doesn’t seem to bother her, she goes back to being her normal self. Her lungs sound clear. They did go over the signs with us if things change.

We all felt relieved after the visit! It was a good day! The people at Stanford are really great! We all feel comfortable with my mom going home on Saturday. It is still going to be a lot of work as I get settled into a new routine, but I think if I can get some help in the beginning especially, it is definitely manageable.

Last night Paul and I slept in Hana’s room. She fell asleep early and we didn’t want to move her to the Pack N’ Play in our room. Unfortunately, she vomited again around 5am this morning, about an hour or more after her last tube feeding. The bag that holds her milk and the tube that runs from the bag to her NG tube was full of air and I wonder if it was pumping air into her stomach. The pump is supposed to stop and beep at you that there is some error and the bag is empty, but this didn’t seem to happen. It’s just a guess on my part, what do I know? (Actually, I am surprised how much more I know than I think. Who knows the baby better than the parents?) But I think I am also hoping that her vomiting is being caused by something other than her heart getting worse. One unfortunate thing about the early a.m. vomiting episode was Hana pulled her NG tube out! We left it out for a few hours and I had to put it back in time for her morning meds. It didn’t go as “smoothly” as putting it in when we were still in the hospital.

Today Hana had to have blood drawn down the street at Kaiser. The first person who poked her to try to draw blood was unable to get anything. She called another lady over who seemed much more experienced. She was able to poke her again and get blood right away, but then the blood slowed and stopped. They almost had to poke her a third time, but then the blood started flowing. Hana was really crying, but she was a real trooper! The whole episode kind of wiped her out and she took a long nap. Tomorrow we go back to Stanford to see her P.A.C.T. team doctor. I am actually looking forward to it because I need more reassurance that she really is okay to be out of the hospital.

We are still trying to get ourselves situated and organized and in a new routine. I ordered some things from Amazon. I had to rent a hospital grade breast pump today. I just am not going to be able to manage with the one that I have and it takes twice as long to do half the job and I already spend at least three hours a day pumping (which is the only reason I have time to write this blog). There are lots of other little things that I am realizing will always need to be chased after – calling the medical supply company about order issues, calling our case manager about problems, etc. But I guess that is the same as paying bills every month – they are never “done”, they keep coming each month!

One goal I have for this week is to mount the cards that people have sent on a board. Many of them are hand drawn cards by other children. I want to hang it up in Hana’s room. I think it will be a warm reminder of all the people out there who care and are wishing her well.

Hana loves being outdoors. When she was fussy, we could go on a walk and she almost always would calm down. She loves to watch what is going on around her. Being able to go out and walk in our neighborhood has been one of the greatest joys of being home and out of the hospital. Not only are we able to say hello to friends and neighbors and spend time with our dog, Poppy, but Hana gets to be outside! (And I get to be outside).

Hana had a fussy night. She also vomited a little in her bed in the middle of the night, so I had to change the sheets. I was up almost every hour and sometimes several times in an hour. I miss the days when I would let her fuss a bit and get herself back to sleep (she was actually getting pretty good at it). Maybe we will have those days again soon. For now, Hana is sleeping in the Pack N’ Play in the area between our bedroom and the living room (pocket doors are open, basically removing the “wall” between the two rooms). That way I or my mom, sleeping on the couch in the living room, can attend to her. Sometimes Paul is up too. It just depends.

We took Hana to church and the farmer’s market. It was nice to get out and see people I haven’t seen in weeks (feels like months). Everyone has been so supportive and amazing and caring. We got a surprise care package on our front step this morning from the people at St. Dominic’s. We’ve gotten lots of amazing care packages from all over. We really appreciate every single one! It truly is amazing. I will never be able to say thank you enough. Truly.

Unfortunately, Hana did vomit again in the middle of the day. This time it was a lot. My mom had and her and was calling for me to come help, but I didn’t hear her right away because the breast pump I use is so loud. Is it okay to talk so candidly about breast pumping? I spend three to four hours of every day doing it, so it is a big chunk of my daily activities. Anyway, Hana seemed okay after the vomit episodes, so I think we will wait until our appointment back at Stanford on Tuesday to bring it up again. Unless she seems to not tolerate it well, of course, but for now she is bouncing right back to her normal self.

Today we made some headway on getting a routine established and getting some necessities organized. I also took a nap (with Hana in bed next to me) it made all the difference in my day!

During the last few days in the hospital, Hana had been taking a bottle, or most of a bottle, several times a day. She also had been successfully breastfeeding once a day. At home, breastfeeding has made her vomit and she refuses to take a bottle. I went to Target and bought all different kinds of bottles, but she won’t take one at all. She vomited again this morning, although not very much. After all the fast improvements she made in the hospital I was hoping at home she would at least maintain where she was at home. Although her mood has certainly improved and she is certainly getting more and better sleep, it seems the vomiting and refusal to take the bottles are a backwards slide. This makes me sad. I wish it were better.

Sadness is something I am feeling a lot of. It is mourning. Mourning for the baby I thought I had. The one that I took to baby sign language class, took into the water at the public pool and carted all over the city on the public bus. It is mourning for the life I thought we would have, the kind of things I thought we would do, I would do, all of us would do together. There is worry, wondering if one day I will wake up and my baby won’t be breathing because her heart stopped. I feel sad. The amount of work to be done is also feeling overwhelming. My house is a disaster. Things are strewn everywhere. I can’t find a lot of things because they were grabbed quickly, or by someone else and have not yet made it back to where they belong. I have papers everywhere too. Just keeping up with pumping breastmilk, mixing formula, measuring medications, timing everything, giving her tube feeds is daunting. I am feeling discouraged that I will never be able to keep up, that I will continue to get further and further behind (and right now I have my mom here to help!). On top of that, I need some more sleep.

Hana looked into my eyes for a long, long time today and it felt like she was saying to me, “Don’t worry, I’m okay.” I know that is different from “I’ll be okay,” but for now, she is okay. I have to remind myself of that. Also, I have to remind myself to enjoy what I have today because I don’t know how long I will have it. Despite having a very, very sick heart, Hana manages to laugh and smile. She is still enjoying herself when she can and as much as she can. It is a joy to be her mother – to watch her, to hold her, to pat her to sleep. It is a wonder and it is wonderful.

Today we took some time off from everything and took a walk in the Presidio. Then we went and had sandwiches up at Alamo Square and enjoyed the warm weather and sunshine. It was a great break, especially after spending three weeks inside a hospital!