Sunday, October 30, 2011

October 30, 2011 - Day 29

4 months, 3 weeks, 4 days since diagnosis
day #38 of current hospital stay

I decided to go home. I haven't been home in over a month. I have only seen my husband twice since I left and I have only seen my daughter 5 times in that same period. I simply cannot miss Valentine's third birthday. I've already missed so much. I think it's tragic that she's gotten used to having me down in Boston. Good under the circumstances but still terribly sad for me.

The got a ticket for the 6:45 train out of Boston. I was going to travel in the morning and keep my trip shorter but there were no trains available. The train coming in from Portland was delayed by 4 hours, delaying my train by over 2. Of course, I got to North Station an hour early so I sat their for 3 hours. My phone was dead in the first 1/2 hour. I can't believe how easy it was to sit there for 2 1/2 hours and do nothing in a cold train station on a hard bench. Sitting around in hospitals have made waiting around for a train very easy :) It's a lot easier than waiting for test results while you listen to your baby moan and gasp for air.

I did not decide to come home lightly. I really struggled with the decision. Riker needs me. But Valentine does too. I didn't want to miss Riker's first Halloween. And there's always that voice in the back of my head, what if it's her ONLY Halloween?. But I didn't want to miss Valentine's birthday. I've already missed so much. Then there's the house that Jon's already put a bid on. It's a short sale, so, even though the sellers have accepted the bid, the bank still needs to. However, it could happen. I'd like to see the house before we move in. And if things move quickly, I need to sign power of attorney paperwork so that the documents can go through while I'm away.

So, here I am, riding in a train, headed to Portland. It'll be closer to midnight by the time I arrive but that's ok. I'll get to sleep in my bed. I'll get to feel the warmth of my husband. I'd be woken up by the pitter patter of my toddler's feet. What a birthday present finding me there will be for her.

The Child Life staff at the hospital was really great about helping me out with my Halloween dilemma. They had costumes and other Halloween items (blankets, pillowcases, onsies, booties, bibs). I had a little Halloween before Halloween :) Those pictures mean a lot to me. I kinda got to have my cake and eat it, too.

Riker's "cold" seems to be getting better. She's still sleeping a lot, though. Healing up, I hope. We've moved from a constant pump running morphine to a dose of .6 every 6 hours. In a day or two, we'll move to .8 every 8 hours before eventually weaning her. Those doses can be converted over to oral as soon as we're ready to go home. Just one more piece in the puzzle.

They've also

The eating still isn't working out, though. Getting answers from the doctors is like pulling teeth. It's never been more apparent to me how different I am from other people, specifically, the other parents they are used to dealing with in BMT. JUST TELL ME, PEOPLE! I CAN TAKE IT! So, I asked a dozen different ways. How long will we wait for her to eat? what's the next step if she doesn't eat? what are we doing to do next - is this normal? will she continue to stay on TPN or will we take other measures? Will she just stay in the hospital forever if she doesn't eat? Will we try an NG tube here in the hospital - I'm not taking her home on one. Will you eventually put in a G tube? Finally - yes. OK FOLKS Why are we playing 20 questions, again?

So, they finally "confessed" that they were waiting to see how she did over the weekend and then they would revisit the issue on Monday. (They promised to wait until Tuesday since I won't be there.) Ok... if they already knew that, why didn't they share. Because other parents don't want to know! I just cannot imagine. Other parents sometimes think they want to know but cannot handle the answers and worry excessively when given time to think. Other parents don't ask these questions that I ask. Other parents haven't already thought about G tubes. I feel like either one step ahead of the medical staff or walking side by side with them for the most part.

So, I think we may try the NG tube again in the hospital. If we can get a couple of feeds in her, maybe we can get her hungry again? I will not bring her home on an NG tube and the doctors agree. She's a Houdini when it comes to that tube. She's strong and fights it... then has it pulled out in under an hour no matter how well it's taped down. I've watched 3 nurses hold her down while they put on in and tried to tape it down. I cannot do that on my own at home.

If that doesn't do the trick, the next step is a G tube. I think that's where the medical staff is leaning, too. It takes the pressure off of her and I to get her eating. We can enjoy food time without all the urgency. She'll eat eventually. Eventually, she'll be a normal, cancer free child. Plus, it is crucial that we get her to take all her meds and there will be a lot when she goes home. She's a pretty good med taker but that's part of the problem, I'm sure. Who wants someone going at their mouth 20 times a day with unwanted syringes full of fowl tasting liquids?

So, now I can do what I do. I can process this information and make peace with it when the time comes.

There was another big decision made today. One I made for me. I am no longer pumping. Let me confess, the guilt of this decision is overwhelming. I am still pumping plenty - I didn't dry up. But I'm tired. I'm so tired. I think I have enough to get her to the crucial day 100. I have to be supermom all the time and this is one thing I don't have to do. I feel like I'll disappoint my "lactation" friends and support. I feel like selfish, especially when so many mothers struggle so badly with just making enough for their healthy child.

I pumped more than 1/2 time since my baby was 3 months old when she was diagnosed. I pumped through the most stressful days of my life and I really did struggle with supple for a few weeks. And I've pumped exclusively for 2 1/2 months - since my baby was 6 months old. I have to hold on to that. I think I have something to be proud of.

I think I'm going to cut my milk with formula, too. My instincts have been good up until now. I am not confident that giving Riker only frozen milk and irradiating it keeps all of the nutrient properties of breast milk intact. There's no research showing this, however, I have learned so much about what we don't know about breast milk. Because of this, I actually think it might be good for her to get some formula. Now may be the best time to start this, too. Her taste buds have been completely wiped out and nothing tastes the same to her.

So here I babble... I rationalize because I feel so bad. I feel the need to apologize to every mother who struggled and couldn't keep their supply up because I still have my supply. I feel the need to apologize to Gloria and Vicki and all the wonderful girls in my support group who've been there for me through the worst of this. I feel like I need to apologize to Riker who never gets what I was able to give Valentine who was exclusively breastfed for 15 months. This is truly one of the hardest decisions I've ever made.

Those of you who know me well, know that is when I babble the worst... when I just want someone to tell me over and over again that it's ok... that they understand and they'd do it, too, if they were in my shoes. So... I'll stop... or risk going on forever in this circle talk.


  1. I'm not a mom. I can only hope to be one day. But if that day ever comes I can only hope to be half the mom that you are. I only hope that every decision I have to make for my child has half the thought in it that your decisions have had. In my heart I want to tell you it will all be okay. Not because I have some ability to know this but simply because I believe it. I dont post much or often but I think about you and Riker and your family everyday with all the positive thoughts and energy I can muster. In my most humble of opinions I think that it is evident that the decisions you are coming to are ones that you have given a great deal of thought to and that only you truly knows what is best for you and your family. A lot of love goes oit to you and your family and a great deal of thanks as well for being a source of strength to those of us who do not know what it is to wrestle with the monsters you have had to tackle.

  2. You've done amazing! There are so few mothers who would have kept up with pumping as long as you did. Riker will benefit sooooo much from all that breastmilk in that time. Don't feel guilty at all. Things happen all the time, even to healthy children, that cause the mother to stop breastfeeding. Don't feel the need to apologize. She is the luckiest little girl in the world to have a mother like you. So is Valentine! She is going to be more than thrilled to see you for her birthday. You have no idea how many mothers look at you in awe for all you have done for your children. There is no mother I have ever admired as much as you. You give me strength everyday for all the little things in life. Don't apologize to anyone. You sound like you are doing everything right.

  3. I feel stupid sharing my own struggles with motherhood because despite the fact that my son has had severe health issues, I can not compare my experience with yours. I was so exhausted, mentally, physically and emotionally depleted (I had severe post-partum depression to top it all) that I realized I could not be supermom unless I started taking care of myself. You deserve to take a break. Your husband and Val deserve to spend time with you. Recharge and re-energize so you can come back to Boston and feel like you can start all over again. Riker will benefit from having a rested and more at peace mom.

    I have been praying for you guys and checking your updates often. I am confident she will heal- it will only take some time.

    You are amazing. You are a warrior. A friend once told me: "A brave person is not one who is fearless, but one who can overcome his fear". You will feel overwhelmed and even break down from time to time. That is a sign you have been strong for too long.

    Hope you get home safe and sound. Take care and the rest will fall into place.