I was going to post this earlier, but life has kind of gotten in the way. I was also going to post a catch-up on Shut-In Saturday, but this is why I didn't.
Saturday afternoon, Princess came home from her visit with her dad and took a good nap. She slept from about 2:30 until about 4p. When she woke up at 4p, she should have been hungry, as she hadn't had a bottle since 11a, but instead, she was still sleepy. She dozed on me until 4:30p. When she woke up from that, she puked on me. This was true puke, not spit up. I didn't freak out initially, outside of the fact that I had to go change her and myself. But then, while I was changing her, she puked again. And then she did it again. At that point, I had pretty much made up my mind to take her to the ER, but called Dr. K. Even though he's her cardiologist, I know I can get a hold of him. He said that she needed a work up. So off we went to ER at 5p on a Saturday.
We were checked in and barely sat down before they called us back to a room. We were hardly checked in there before a nurse was in to see us. The nurse wasn't even done with vitals before the doctor was standing at the door. Her heart rate was in the 140s and her blood pressure was 124/62. (YUCK on both accounts!) I was so glad I had a hot sheet for her listing her meds, docs, and diagnoses. It made things so much easier. After filling them in on the PHA2 (lots of "what is that?") and the fact that she is currently getting Synagis (more "what is that for?") and the LVH (they all knew that one!), the doctor decided to do an electrolyte panel and give her a shot of Zofran. Zofran is an anti-emetic that they started using with cancer patients and have now approved for kids as well. So the doctor was only out of the room for a few minutes before the lab tech was there. It took me laying on her, a nurse holding her head, a nurse holding her arm and the tech to get the blood, but he got it first time! He took a little extra just in case they wanted to run a couple other things. Turned out they did, but I was glad they got it all in one draw. Then the waiting began.
The doc called the hospital we had been at to see what they wanted to do. He was waiting for them to call back. Nurse change over happened. The nurse came in and told us the electrolytes looked good: Sodium was 139 and Potassium was 4.9. Both in normal ranges! Her white blood cell count was elevated slightly, but that could have been from the puking. While we were waiting, Princess took a nap and when she woke up, she was definitely feeling better. She was looking around and wanting to play again. I knew she was probably hungry too.
The doc finally heard back from the hospital. It was Dr. F, the doc who's admitted us twice now. Doc came in and said that we had the choice of either being transferred or going home. We picked home. She was obviously doing better. The only concern I had was what to give her. I was advised to start with juice, but not apple. And if she kept that down for about an hour, to try again. And if she kept that down, try formula. So we left there about 8p.
When we got home, we did some white grape juice diluted with water. She took that. An hour later, we tried some more. No puking! So we went to bed. Princess slept in bed with me and we slept all night with no puking! The next morning, we took it easy with her bottle and food and by Monday we were back to normal bottle amounts and Tuesday normal food amounts.
I kind of had a feeling something was going to happen. Why? Well, I had heard "We Won't Be Shaken" by Building 429 like 3 times in the past few days on the radio. I hadn't heard it on the radio in quite a while and we only listen to KLOVE in the car. I had heard "Overcomer" by Mandisa a bunch but not "We Won't Be Shaken." I had a feeling this was God telling me that something was going to happen and not to worry about it. Well, trusting Him, things worked out okay.
Having a child who gets labs done about once a quarter and shots every month right now, it was inevitable. Princess bled all over her clothes during her latest Synagis vaccination. Okay, so I wasn't worried. We'd done the whole blood on the clothes before. When she was in the NICU, one of her little outfits got blood on it when they were doing a heel stick. I had used OxyClean spray. It had taken about two or three washes before it came out. I figured I would use that this time.
But upon getting home, I decided I should look it up. After a quick Google search, I had a plan of attack. This is NOT new, but I created an image for all you Pinners out there, in case you wanted to Pin it!
After getting Princess out of her clothes, this is what I did:
I ran the area that had the blood on it under COLD water. ONLY use COLD water, never hot.
I then poured some hydrogen peroxide in a bowl and soaked the area for about 15 minutes. It immediately started fizzing.
I then put the article of clothing in the wash with a load of Princess's clothes. I sprayed the area with OxyClean spray, but honestly, it didn't need it. I washed her clothes in COLD water wither her normal detergent.
Finally, I put the load in the dryer and dried it on LOW, just in case there was still some blood left in it. When I came back to get them, there was not a speck of blood on it!
Okay, I'll be honest, I wasn't sure the hydrogen peroxide was going to work. I feared that it would bleach some of the color out of her clothes. It didn't do that at all. Now, Princess has to have her clothes washed separately because of her sensitive skin, but you could do it with any load that you're willing to wash in cold water. I'm sure had I consulted any of my special needs groups, they would have suggested something along these lines. I also saw shampoo and vinegar. But I liked the hydrogen peroxide idea.
Recently, all of a sudden, Princess decided to roll over from her back to her tummy. She'd done it a couple times but last week, the light bulb just went off and she was off and rolling!
This is what she had been doing:
She had just about gotten it. All she had left was that last shoulder. Then she figured it out!
Then, just randomly, she started grabbing the little puffs we'd been putting on her tray. She's managed to get a few of them to her mouth. So I watched her, and yes, she did have a pincer grasp!
So when we went to the grocery store, we got her Cheerios! (She's special and gets the chocolate ones!) And this little girl may not have a tooth in her mouth, yet she is chewing EVERYTHING up!
I can't believe I haven't posted this yet! So here it is!
Jingle has gone back with Santa. Santa came to our house early because Little Man will be spending the night at his father's house. So Jingle got picked up by Santa after he delivered gifts
But since the last update, Jingle has gotten into some things.
For one, he tried to hang from the chandelier in the dining room.
Then, he actually brought Little Man a book: The Polar Express. It was a little above him, but we did things in Playschool about it, so it all worked out.
The next night, Jingle climbed to the top of the bookcase and left a note.
He then got in the candy the next night.
Then, I guess he figured it would be a good idea to lock Little Man in his room. (Yes, that is a baby gate on his door. It's not to keep Little Man in; it's to keep the dogs out of his toys at night.)
Then, the last night he was here, he left them his goodbye letter and a couple of gifts.
Inside were new jammies for both kids to wear to bed, "A Charlie Brown Christmas" DVD and hot cocoa.
Am I really that different than any other person going through a difficult time? I don't think so.
There's a video going around Facebook. It's from a lesbian, Ash Beckham, who is talking about how everyone has a closet that they are in, whether they are gay, getting divorced, or dealing with an illness. The tag line is about how she answers a 4-year-old's question about her being a boy or a girl. But there's a line she says in there about how "It's not harder, it's just HARD." (Here's the whole video.) It really stuck with me. What I'm going through is no harder than what anyone else is going through. It's all hard. What is different is what we do with those hard times. Do we lose our faith? Blame God? Question God's plan? Or do we keep our faith and trust God? I told a friend recently that losing faith is easy. Keeping it is harder. I truly believe this.
People have told me that I must be so strong to handle what I'm going through. That they could never go through all that I have gone through. I usually don't know what to say to that. Maybe because there isn't a short answer. The truth is. You don't know what you can go through until you are there. I never thought I would be a preemie mom. I never thought I would be a heart mom. I never thought I would be a special needs mom. But yet, here I am: a mom to a special needs preemie with a heart condition. I never thought I would be strong enough to deal with 3 weeks in the hospital. I never thought I would be strong enough to handle having a child in the hospital for nearly 3 months. I never thought I would be strong enough to handle having to hold my child down while they got an IV in her or drew blood numerous times. But I am.
There's a lie everyone feeds you: "God won't give you more than you can handle." It's a TOTAL lie. It's nowhere in the Bible. In fact, God routinely gives you MORE than you think you can handle. He does this so that you learn to lean on HIM. He's going to pull you through it, if you trust Him. In life, there will be lots of tests to your faith. It may be a sick child. It may be losing a loved one. It may be a car accident. Think about the book of Job. Job lost EVERYTHING and his friends even mocked him for his faith. But did he lose faith? No. He kept on believing that it was God's plan.
There's a blog entry that was just posted to one of my many support groups. It's about What Not to Say to someone who is dealing with a family member with an illness. It really got me thinking of writing this entry. It's been on my mind for a while, but what this mom said is true. My mom posted something very similar on our CaringBridge journal, except it was specific to a preemie. I may repost it here soon. In my mind, I don't think I'm going through a lot at all. Maybe it's because I see these things as blessings and not a struggle.
When the PHA2 diagnosis gets me down and I don't know what to do about my child having a rare disorder, I remember that things could have been so much worse. I've posted before about why Princess was born premature. I've been thinking about that a lot lately. I know now that Princess's placenta was abnormal and that is why it started tearing away and probably why my water broke early. There's no test right now to find out if the placenta is normal or not. But I don't ask why Princess was born premature. I know why. Princess was born premature because if she wasn't, she wouldn't be here. She NEEDED someone to be watching her blood pressure constantly. The only way that would happen would be if she was born early and in the NICU. Had she not been born early, her heart could have gotten so enlarged with the cardiomyopathy that it would have stopped. Her potassium could have gotten so high that she died. I still worry now, but nothing like those with little or no faith. I know God has her, no matter what happens.
When I'm medicating Princess during the day and I get down on how many medications I'm giving her and how hard it is sometimes, I think about kids like Owen. He just had a heart transplant at 5 years old. He's on like a dozen different medications. Princess has now gotten so good at taking her medication. She opens her mouth like it's food or something. Yes, there are days where she still dribbles nearly the whole thing down her shirt and I know I can't give her any more, but it has gotten better.
I also think about Owen when I think about how many appointments I have to go to and the distance I travel. He and his mom spent MONTHS away from home at Stanford and STILL have to travel there monthly. My two hour drive every so often is nothing. Our appointments have spread out too. I looked back at the calendar and between the time she came home June until now there were some weeks that we went every week to a doctor appointment. It's nothing like that now. Okay, so we are going every month for her Synagis shots, but we can deal with that.
When I the idea of Princess needing therapy came up, I didn't know what to think. I'll be honest, it scared me. But then I think about kids like Tripp. He has a traumatic brain injury from a freak accident of nature and has to go to therapy nearly daily to relearn things he already knew, and he's only 3. Princess needing therapy once a week right now is nothing. And even if, later on, we have to transition to needing PT, OT or Speech and be on an IEP, it's not a big deal. We'll get through it.
When the idea of being a single mom becomes overwhelming I think about Mabel. Mabel is eventually going to die. We all are, but Mabel will go sooner than we will. I think about her mom, who is a single mom to three. Seeing how she is giving her children all that they need and deserve, despite the fact that Mabel is going to one day die, gives me the strength to face one more battle for these two kids of mine.
When everything comes at me at once and I just feel overwhelmed with it all, I think that it could be so much worse than what I am going through now. I lean on God, knowing that He is going to give me the strength I need to get through whatever it is I am going through.
About a week before I left my (ex)-hubby, I turned on Good Morning America. I don't usually get to watch it in the morning and usually forget that it's on even. But that morning, they were premiering the video for Mandisa's "Overcomer." I initially thought of Princess when I heard the song and saw the video and was moved to tears. It wasn't until a few weeks later when the song came on the radio that I realized the song wasn't for Princess. It was for me. God was reminding me about all that I had already overcome not only with Princess but in my own life and that He was going to help get me through this. I broke down in tears in the car. (And am in tears now as I write this.) I'll be writing more about all that I have overcome later, but know that Princess's initial journey is very similar to my own, except her odds were WAY better than mine. That song still resonates with me now, as it has become my theme song for this period of my life.
This is nothing new. God has given me songs for periods in my life. When Princess was in the hospital and we didn't know what was wrong with her, the song I was given was "We Won't be Shaken" by Building 429. There have been other songs along the way, and I have downloaded them and put them in a playlist for Princess. They are there when I need them. When the insurance issues just become nightmarish. Or the transitional issues with Little Man and him dealing with the separation wear on me. Or I'm just tired of everything and want to curl up into a ball and hide. I know God is there. He's watching over us. We don't need to worry. Losing faith is easy. Keeping it is so much harder. But if you do manage to lean on God through all the tough times, the'll be sunlight on the other side.
I'm reminded of when Jesus walked on water out to the disciples:
Immediately Jesus made the disciples get into the boat and go on ahead of him to the other side, while he dismissed the crowd.After he had dismissed them, he went up on a mountainside by himself to pray. Later that night, he was there alone,and the boat was already a considerable distance from land, buffeted by the waves because the wind was against it.
Shortly before dawn Jesus went out to them, walking on the lake.When the disciples saw him walking on the lake, they were terrified. “It’s a ghost,” they said, and cried out in fear.
But Jesus immediately said to them: “Take courage! It is I. Don’t be afraid.”
“Lord, if it’s you,” Peter replied, “tell me to come to you on the water.”
“Come,” he said.
Then Peter got down out of the boat, walked on the water and came toward Jesus.But when he saw the wind, he was afraid and, beginning to sink, cried out, “Lord, save me!”
Immediately Jesus reached out his hand and caught him. “You of little faith,” he said, “why did you doubt?”
And when they climbed into the boat, the wind died down.Then those who were in the boat worshiped him, saying, “Truly you are the Son of God.” -- Matthew 14:22-33
As long as we keep our eyes on the Lord, he will not let us fall. He will quiet the storm and keep our head above whatever stormy waters we are facing.
