Sunday, January 1, 2012

Squashed Strawberries: An Update On My Daughter's Hemangiomas

When I last left you, I was waiting for my daughter's insurance company to approve the 3 night hospital stay for the propranolol treatment. CHOP had to fight really hard with the insurance company. They went back and forth for several days until the insurance company finally relented and agreed to cover the hospital stay, her prior appoinment and two follow up appointments as well as medication. Thank you sweet Baby Jesus. That was in the beginning of December.

We checked into the hospital on December 9th. I was told I was going to be in a private room, which is cool because I have oodles of social anxiety. Alas, they were wrong. We were to share a room with another little baby - the girl half of a boy/girl twin combo. We were only separated by a curtain. I was instantly overwhelmed. I was super emotional because I was spending three nights away from my sweet little boy. There was a scary metal cage crib for Little Lady and an uncomfortable sleep chair for me. I had about 4 feet of space, if that. There was one shared bathroom with no shower. There was a communal shower room in the unit. Within the first 15 minutes of being there, everything just started swirling around in my head and I freaked out. I called my husband, my mom, my dad and I ranted on Facebook. I told them I was giving up and leaving and that we would have to figure something else out for Little Lady. I was mad, sad and I had my period. I only had one bag of essentials - her diapers, my water bottle and a change of clothes - with me in the room because I couldn't carry it all with me when I registered. I was hungry. I had asked the intake nurse about food because I was told I could order food straight up to my room for $5.00. No. I had to go down stairs and into a different wing of the hospital and buy a voucher in order to be able to order food. Stupidest rule ever. So, I was tired, emotional, hungry and mad.

About 5 minutes into all of my ranting, the dermatology team came in and started to talk with me and we went over the plan. I calmed down and decided we would stay. They ordered an EKG for Little Lady and planned to started treatment once Cardiology cleared her EKG.

Aaaannnnddddd...5 minutes after that the nurse came in and started poking and proding at Little Lady. My poor little girl. She connected her to a heart monitor and a pulse ox monitor. She took her temp, her blood pressure and her weight. I was told I would have to keep all of her diapers so they could weigh them and determine her output. The nurse drilled me about breastfeeding, constantly asking if I was sure Little Lady got enough to eat when I was nursing. She kept saying she was "small." Little Lady was 6lbs 8 ounces at birth. She was 10lbs 13 ounces on that first day in the hospital, just shy of 4 months old. That's not too shabby, dear. I could tell she was one of those who didn't trust breastfeeding. I was asked if she nursed long each session and how many ounces she got. Uh...she can suck down and entire boob in 3 or 4 minutes or she can make it long drawn out process - it depends on her needs. How many ounces is she getting? My boobs didn't come with any measurement system. I know she's getting enough because she has the proper amount of wet/poopy diapers, she's growing, she's bright and alert and she is hitting all of her milestones and then some. This particular nurse was never satisfied with my answers. After she was done recording all of Little Lady's vital signs she started to walk out of the room. I asked if she was going to unhook her from the monitors. I was told prior to hospitalization that she would only be monitored every 4 hours. The nurse said, "No. She has to stay connected," and walked out. I cried. And cried. And cried. I did my best to keep myself from tangling her wires and held her in my arms and nursed her. And cried. And then I cried because I felt guilty for crying. I was at Children's Hospital of Pennsylvania and I knew there were some really, really sick children there. My daughter was there because they do this as a precaution. Other children were there because they were dying. The little baby in the room with us was alone. Her mom had left 20 minutes after I arrived. That little baby cried and cried and cried. When she was done crying, she would cry some more. And her monitors kept going off because she would fuss so much. And then Little Lady's monitor kept going off. The stupid pulse ox couldn't get a good read because those damn machines are only worth something if you are not moving. Little Lady moves. She's really into kicking her feet - and the monitor was attached to her heel. The nurse came in an adjusted things a couple of times and then eventually stopped coming. The alarms kept going off. I know my way around those monitors so I finally just silenced the damn thing. I sat and stewed in my anger, sadness, guilt and hunger. I started to grow weak from not having anything to eat. I fished a fruit leather from my purse, but those aren't worth shit when you're really starving. They just delay passing out by about 15 minutes or so. I was too afraid to get up and ask where the cafeteria was. I didn't want to leave Little Lady there all alone. She was awake and would cry after being alone for a few minutes. After hearing the other baby crying for 45 minutes straight, I knew there wouldn't be anyone coming in to hold Little Lady or soothe her. I don't believe in Crying It Out and certainly wasn't going to start right then. I was about to give up, again. And then a new nurse came in.

WHAT A DIFFERENCE! Our new nurse, I'll call her Anna, was a breath of fresh air. First, she disconnected Little Lady and said she absolutely didn't need to be permanently hooked up to anything. Second, she said she didn't need to check her vitals again for another 4 hours and that I was free to roam the hospite freeal and get me some damn food. Third, she pointed out a kitchen in the ward where there werbie juices, milk, cereal, ice cream and snacks. As soon as that monitor was disconnected I ran. I managed to find my way through the maze of the hospital (actually two buildings joined to the main hospital) and to the cafeteria. I was wearing Little Lady in my Slinglings pouch. I went into the little office next to the cafeteria to purchase a voucher in case I needed to order something to my room later. While there, a lady stopped me and asked where I got my pouch and how I liked it. She said she used a Moby, but wanted something different. She had a big tattoo on her chest. Yes. Someone like me. She walked with me into the cafeteria and we both ordered food. The cafeteria - holy shit. It is not your typical hospital cafeteria with your typical hospital food. CHOP is part of the University of Pennsylvania (it sits within the campus) and you can tell it's a rich business. They have their own fucking sushi chefs that roll sushi right there. Anyway, I got my food and paid. The other mom was in line with me and we walked out of the cafeteria together. Turns out her son was in the same building...same floor...same unit...just two rooms down from me. AND AND AND - she was a breastfeeding, non-circing, co-sleeping everthing like me mom. I had a hospital friend. Yay! That relieved my stress a billion fold. When I got back from the cafeteria and was happily fed, the nurse took away my yucky sleep chair and brought me a cot instead. Yay.

Our first night wasn't horrible. Little Lady had to be woken up at 3am for one of her doses of medication and a blood sugar check. I took her out of her crib then and nursed her in my cot...and let her sleep there. I was initially worried about co-sleeping at the hospital. I know they typically poo-poo that, but my new best friend told me she was able to do it with her son with no problem. Our overnight nurse was completely fine with it. Another stress lifted and we had fairly decent sleep.

My fav nurse, Anna, was back the next morning. Little Lady was monitored every four hours for just a few minutes. Her dermatology team came in and checked on her. We saw results almost right away. The hemangioma near her eye look a little lighter and the two nasty ones on her labia and inner thigh looked slightly better. Wow. They were pleased. Cardiology reported a little blip on her EKG that could possibly indicate biventricular hypertrophy, but they weren't concerned at that point and want to see her in the middle of January. EKGs are tough to interpret in babies and little little kids. I spent the day waiting for my husband. My parents had taken Little Dude to their house for the weekend. My Dad was going to bring hubby down to visit. CHOP had told me that only one parent can stay with a child overnight. My new best friend told me that her hubby was allowed to stay with her. I asked Anna who said it would be no problem as long as we didn't mind sharing a cot. I got breakfast and coffee with my new best friend and we chatted in my room. Sadly...well, happy for her...they were discharged that day. We exchanged numbers, though and I gave her the addy for this blog. :::waves::: Hubby and my dad came with food from Panera, cookies from my mom and one of those nifty knitter looms that my mom picked up for me. I've never used one, but I managed to make two hats during my stay. Woo-hoo!

Little Lady was enjoying herself. It sucked that she was poked and prodded often and that so many people got a look at her labia, but she was LOVING the attention. She loves people and it helps that she is so adorable and personable. During our whole stay, people would constantly stop me to tell me how cute she is and she would hold there gaze for a moment, make them wait and then break out this superstar dazzler smile and they would just melt. She had a lot of fun.

Hubby and I spent our time wandering the buildings, raiding the cafeteria and sitting in the chapel.

The chapel. It's tiny room with some chairs and pews with kneelers. It has a small stained-glass motif detailing the creation story from Genesis, a water fountain, a book for prayer intentions/praise and a small bookcase with books dedicated to almost every religion. They also had a few small prayer carpets. At one time, hubby and I were sitting there and a man came in and took one of the prayers and knelt down, head to the floor in the direction of the East. On another visit, a Muslim woman sat there saying prayers out loud. I was struck at how simple it was in those moments. A few parents of different faiths - me and hubby of Christian/Jewish and Pagan persuasion and the other two Muslim parents - praying just inches away from one another. No bullshit worry that one God was better or one religion was the right one. Just parents praying for the same thing - the well being of their children.

My Dad came to pick hubby up and bring Little Dude and my mom for a visit the next day. Hubby had to go to home since the following day would be a school day for Little Dude and he'd have to take him in. I was so happy to see my little guy and so sad when they left. Just me and Little Lady again. At least we still had Anna and then another cool overnight nurse.

Our last day finally came and I packed all my shit together after breakfast and waited for our discharge instructions. Little Lady had low blood sugar overnight, so they decided to skip one dose and then send her home at the lower dosage of her medication. Fine with me. I ended up, though, with the same nurse that I had when we checked in. Back to constant monitoring and keeping Little Lady tethered to the machines. At one point, Little Lady fell asleep and I put her down in her crib, on her side. She rolled over to her tummy, as she does from time to time, and I left her that way. Because she's 4 months old and can roll over by herself. Heck...she tried to crawl in her crib at the hospital (probably trying to get the fuck out). The "sleep experts" say it's okay to let them sleep on their stomach of they can roll themselves over. Well, the nurse came in and handed me a paper on sleep safety. I just looked at her. Then the monitor went off. Why? Because the pulse ox had slipped off Little Lady's heel. But the nurse said, "see! Her pulse ox is low because she is sleeping on her belly and she can't get enough oxygen." I then moved the pulse ox monitor and her numbers shot right back up to normal. "No," I said, "this fucking thing doesn't stay on EVER and that's why the number went down." Then I pointed to the part on the paper that said tummy sleeping is okay once they can roll themselves over. She then started grilling me on the last time the baby ate, how long she ate, how much I think she got and did I think she got enough. :::eyeroll::: Me and that nurse just weren't meant to be friends. I smiled and said, "she is four months old. She is an efficient nurser. That's common for a four month old, but she's been that way since birth. Oh, and I'm a breastfeeding counselor. I know what's normal." She left the room and was quick to get my discharge papers. God Bless her.

I said goodbye to the other baby in the room. That broke my heart. Her mama only came one other time during our whole stay and was only there for 20 minutes. Poor baby. There were so many times when she was crying that I just wanted to pick her up and nurse her or just hug her. Obviously, you can't do that, so I would just talk to her. I was sad saying goodbye.

It's been almost a month since her hospital stay and Little Lady is doing well on her medication. Her labial hemangioma has been the fastest to respond and looks 75% better. The ulceration has healed almost 100% and she no longer screams at diaper changes. I'm so happy that she feels better and look forward to more healing and eventually getting off this medication all together.

If you had made it this far, then bless you. I needed to journal it and I appreciate you for reading.



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6 comments:

Alesha Lane said...

I laughed and I cried reading this. I just wanted to say thank you for sharing and to wish you and your little one the best.

Funky Little Earthchild said...

Thank you for reading, Alesha.

DonnaLee Stickle said...

Thanks for sharing! My daughter has a "strawberry" on her labia as well, at 3 months old, and we are on our way to CHOP in a few weeks..wish us luck! Hope your Little Lady is just fine now!

Funky Little Earthchild said...

Good luck to you and your little one, DonnaLee! You guys are in good hands. I hope she feels better quickly!

Anonymous said...

Hi, just read your story.
We are going through the same with our daughter (labia and ulceration and hemangioma)

May i ask how ulceration was treated? Any specific creams / medicine? It is such a difficult area that we don't know how to cover it and ease the pain (every time she pees,it is a horrible 5 minutes for her and us)

Thank you for sharing your story.

Funky Little Earthchild said...

Anon - we were prescribed metronidazole and lidocaine topically. But it's the propranolol that made the biggest difference.

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