baby – Page 2 – Hana's Heart

Cruising Altitude – Checkup At Stanford

Posted on May 13, 2015 by katmeander

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!

Plan For February 23rd

Posted on February 23, 2015 by katmeander

My dad left last night. I can’t imagine a more difficult goodbye. My mom is still here almost two more weeks. I don’t know what we would’ve done without them.

It took Hana a long time to get to sleep last night, it was midnight before we got to bed. She was still sleeping when I got up at 6:30 this morning. When she did awake around 8am, she was agitated and wanted to sit up. She was obviously still tired. It took a long time to get her to take a nap (which lasted less than an hour). I am so tired. We all are.

Hana seems like a teething, overtired, bored baby agitated by all the restrictions of tubes and wires attached to her. Today they will continue to wean her oxygen flow (she is on 2L). They will try weaning (I don’t know if they actually wean or just stop) her Heparin and start her on aspirin. They still need to get her diuretics right before weaning her down on the Milrinone (I suppose they need her electrolytes better balanced before messing with heart medication). She is getting 40mL of breastmilk an hour, which they will start fortifying tomorrow (for more calories without the volume). They talked about doing another echocardiogram. She has a standing order for Ativan is she can’t get settled. They are giving her Tylenol every six hours.

I heard the heart failure/transplant doctor say that 60-70% of dilated cardiomyopathy cases like Hana need a heart transplant within four months. Some percentage of those will need a heart transplant later in life.

Withdrawl

Posted on February 21, 2015 by katmeander

Today Hana has been very agitated. She has been awake since 6:15 without a nap. She has the shakes and is inconsolable. They believe it is from drug withdrawal from the morphine and Versed. Someone needs to constantly be with her to entertain, distract, console her and she is still crying (a strange cry/whimper like I’ve never heard from her before), kicking her legs and arching her back. We take shifts being with her. I’ve probably spent the least amount of time in her room. Between pumping breastmilk, trying to eat, drink water and go to the bathroom, there seems to be a shortage of time. Then I feel guilty. I am not doing a good job at taking care of myself. I am exhausted and copious amounts of coffee are only doing so much (and keeping me up too late). Thank goodness for my parents and Paul, who is so devoted.

They have her Ativan. Then more Ativan. Then they gave her a small dose of morphine. It wasn’t helping. Her heart rate was really high. Finally, they got the amount of Ativan and morphine right so she could rest. They also increased her high flow up to 10L and they increased her dopamine to 5. We will start again tomorrow trying to wean her off some drugs.

It was a stressful day. Poor Hana was the most stressed. It’s terrible watching a baby go through drug withdrawal. Nothing calms them. I hope her heart can get some rest from the last 12 hours of agitation.

I went for a jog in the evening. I was assured by a number of people that it would be good for me to get out. I need movement and fresh air. I need it to give me the energy to get through days like today – and I have a feeling there may be a lot more days like today. Towards the end of my jog I started to cry and I imagined holding my healthy baby in my arms. It’s hard to find peace and yet, I think if I can manage some moments of peace, I can find some more strength. I might just need to take more deep breaths. We go from holding our breath to letting go of a sigh back to holding our breath. That takes a lot of energy (as does feeling guilty). I need to move breath more freely.

I sat outside the hospital on a bench in my running clothes and cried into my hands. I kept thinking, “My baby, Hana. My baby, Hana.” Then I went inside.

Oh, my sweet Hana.

This is Hana as we are waiting for her new room to be ready:

This is Hana finally resting:

Good Night

Posted on February 20, 2015 by katmeander

Hana was wide awake for many hours today. She spent a lot of the time looking around. We tried to entertain her with toys, songs, games, books, music. She’s not quite ready to entertain herself, it seems. She isn’t quite looking or acting like herself yet. She will look at you for long, long moments.

I’m hopeful and then almost scared of my hope. I need to remain in the present moment. That is my coping strategy. My baby, with a very sick heart, is sleeping (hopefully) down the hall where a nurse is constantly watching her. That is what it is, presently.

I love Hana. She would not fall asleep tonight. Much like it would be at home, on a normal night, I finally had to tell her “Good Night” and leave the room so she would allow herself to fall asleep.

There are so many people to thank. I’ve had people tell me I am strong, if that is so, it is only because I have been carried by all the love, support, help, thoughts and prayers of so many people. Thank you. It has touched us so deeply.

Here are some photos from today:

February 20th Plan

Posted on February 20, 2015 by katmeander

Hana had a good night. Her heart rate is still pretty low but they are watching it carefully and so far everything else looks ok. When her heart rate is a little higher they will start her on beta blockers. For her breathing support, they will continue to wean her flow and hopefully get her on low flow (I think this is what it’s called) by tomorrow. They will wean her dopamine today too. The optimal plan, I suppose, is still to get her on oral medications and bring her home. There is still a slim enough chance that her heart could recover (although probably with decreased function), so we need to give that a try. But the next few days or week might tell us more if that is a possibility or if we need to get a Berlin heart for her or continue to keep her heart until a transplant heart becomes available.

Hana was quite active this morning! We sang and showed her toys. Maybe today we can even hold her.

Big Day Today

Posted on February 19, 2015 by katmeander

Today, after rounds maybe as late as early afternoon, they are planning to take the breathing tube out. They will do another CPAP trial before then just to make sure. This is big. If she can successfully come off the breathing tube, then we continue the course of lowering medications. If not, she may have to get a heart pump (Berlin Heart). After the last drama of this attempt we are all nervous (doctors don’t look nervous, at least).

Maybe I will get to hold her soon. I fear I am forgetting what it feels like to hold my baby.

It feels a bit awkward to mention this, but people have started asking – we have a fundraising page. My friend Alyx started it. When it went live last night I saw people had already started to donate and I cried for a long time. It’s not so much the money I see as it is the love and support.

http://www.gofundme.com/hanasheart

Here is Hana when we were at my parent’s house after Christmas:

CT Scan

Posted on February 18, 2015 by katmeander

So, we were kind of hoping that the CT scan would show something wrong with Hana’s coronary arteries because that is easy to fix (relative to a heart transplant). We knew the likelihood of all this being a coronary problem was very slim. As it turns out her coronary arteries are just fine, that is no longer a hope.

With all the unknowns, my dad keeps asking, “What should I be rooting for?” There’s a very slim, outlying chance that, given enough rest, her heart could recover. Or it could recover enough where she wouldn’t need a transplant for years. The mortality rate for transplant patients increases the older they get, so delaying it seems best. But, because she is so young, if she got the transplant now they believe that there is less chance of her body rejecting the heart, therefore making now more ideal. They don’t have enough data on transplants in infants to be able to say with certainty if now is for sure the best situation. So, it’s hard to know what to root for.

Here is Hana about three weeks ago:

It’s Hard On My Heart

Posted on February 16, 2015 by katmeander

Hana had a good day. They increased the amount of breastmilk they are giving her and they decreased her dopamine. She was very agitated throughout the day and they did end up giving her a small amount of sedative. She would wiggle around and try to pull out her tubes or rub her eye. She had a good chunk of time were she was alert and we read her stories and talked to her. She even tried grabbing at her hanging toys or the pages of her books.

The evening plan is to do a couple of CPAP trials in preparation for taking out her off the ventilator in the morning. That being said, her heart started being erratically but her blood pressure was ok. Doctors came in. They did an EKG. Meanwhile, they were cracking open a baby’s chest a few rooms down and installing an ECMO device/machine (an emergency procedure to take over the work of the heart). It felt tense. I started to cry. Again. It reminded me how hard this whole thing has been on my own heart. I love Hana so much and it hurts so much to see her suffer. Sometimes she tries to cry (but she makes no noise because of the breathing tube) and her face has the look of pain on it that breaks my heart. I want to hold her and cuddle her and soothe her. But I can’t, yet, and it hurts my heart.

I love this baby (and her heart).

A Meditation

Posted on February 15, 2015 by katmeander

The following is a Metta/Loving Kindness Meditation that one of my aunts sent to me and Paul. I find it comforting to read it several times a day.

May baby Hana feel safe and protected.
May baby Hana feel loved and held in gentle kindness.
May Hana be healthy, strong, and whole.
May Hana be free from suffering.
May Hana grow in joy and peace with her family.

May Kathleen and Paul be safe.
May Kathleen and Paul be surrounded by love, hope, and strength.
May Kathleen and Paul be free from suffering.
May Kathleen, Paul and Hana grow in joy and peace as a family.

Please keep sending us your thoughts, prayers, intentions they have been extremely helpful.

Here is a picture of Hana just over a month ago.