Tuesday, April 30, 2013

Remember Me? :)

Wow!  I really wanted to post much sooner than this, but life around here is slightly crazy!  And I honestly don't think I would have it any other way!  There just isn't a whole lot of time to sit and post a blog...  But my hubs is away overnight for work, and the kids are in bed, and I really need to update!  :)

The kids had CI (cochlear implant) surgery on Wednesday, April 24th at Children's Hospital in DC.  Ella's surgery was schedule for 7:30am and had to be there at 5:45am.  She was having both ears done, and XJ was having his (what we were told til right before they took Ella, but they did his left) right ear done.

My mom had planned on taking vacation this week even before fully finding out the date, and it just worked out that it was the same week!  :D  Thankful oh so much she was here!

She got here Tuesday, and then we left about 4:15am to head to DC with XJ and Ella.  The whole time there XJ was all smiles and not a care in the world!  He is so trusting! While Ella, confused as to WHY I woke her when it was still dark, with only her and XJ, mom and dad and a backpack.  i could only think of the things she was thinking, she was clearly not too happy and very worried, UNTIL we pulled into the parking garage at DC, where she recognized the Bear on the garage. Only then did she FINALLY smile at me and was ok!  I kept turning around and smiling at her in the van, but she wouldn't really smile back.  I kept thinking, did they leave when it was dark from her foster care home before coming to where we got her?  What was she thinking?

Pulled in and got a spot VERY easy b/c no one was there!  Got registered and had to wait a bit.  Then they called them both back and had to get them undressed except for undies.  Trying to explain that the ties go in the back was quite fun!  HAHA!!!  Talking to the nurses there getting their vitals and asking us questions about history, we got to tell them we have only had them for 7 months, then yes we do have other kids at home, yes, we have SIX kids total!  :)  Curt was showing them our Easter pic!  They of course had to tell everyone who walked by!  I guess it was also VERY unusual to have a 2 kids from the same family go through the surgery at the same time.... :)

Finally got to the time where it was time for her to go back.  I was still doing ok at this point.  :)  The anesthesiologist asked if we wanted to give her some "sleepy" drink to calm her more so they could take her back and both Curt and I looked at each other like, uh..  I don't think so...?  So he said well let me see if she will let me pick her up.  And she went to him ok, so it was all good.  So come time to take her back he took her and let me kiss her, and I signed I will see you in a minute ok?  I love you! Gave her a kiss.  The whole time I'm smiling hoping I'm not worrying her anymore than what she is!  Then daddy gave her a kiss and off they walked.  She looked a little worried but she didn't make a fuss or noise.

Christina works at Childrens and happened to be working same time we were there, so she popped in to say hi for a few before she got back to work! So nice to see a face we knew!  :)

XJ did GREAT at waiting!  This poor kid has had absolutely NOTHING to eat or drink since 8 pm the night before!  Dr told us he would prob be done around 11:00-11:30 and then he said noon, so we weren't 100% sure!  But come 1:30 and I was like they should be done.  At this point XJ is starving, I know he is bc I was, and I knew he was thirsty! Finally Dr came around 1:15ish and said it took about an hour longer b/c they were on the phone with the Cochlear America.  Her left ear was great no probs and tested fine, but after they had sown up her right ear, and tested her, it wasn't testing fully.  I don't remember everything he said, but something about the electrodes, and I'm prob WAY off on that.... BUT CA and Dr were 99% sure it was nothing, and Curt said if it doesn't work...? Dr reply, we go back in and replace it, the inner piece is guaranteed for 10 yrs.  Curt and I both were thinking, but do you do it for free if you have to go back in?  ;)

I got to go back to recovery while Curt sat and waited for XJ to go back.

I got back to recovery and nothing could prepare me.  I tried to brace myself, I knew it was surgery, I knew it was on the ear, I knew they would be taking a drill to her cochlea, I knew she would be in pain, I knew she wouldn't understand what I just let the doc do, I just didn't fully know how bad it would hit me.

She was thrashing all over and the 2 nurses asked if she slept like that and I said no. I put my stuff down and went by her head that way she would see me when she fully woke up.  She was drugged, it was pretty obvious, a little more than I expected. Finally she woke up and wasn't too happy.  She started crying and I tried to console her the best I could.  finally they gave her another shot of morphine...  She tried to move her arm even more b/c she could feel it going in her IV.  Finally after a few minutes they asked if she likes to be held and I said yes, can I hold her.  So they got her wires and I picked her up and sat in the chair.  She was still not happy, and nurse gave her another shot of morphine to try and calm her down. Then Curt came in.

Nothing could prepare me.  I did think, "What the hell did I just do to her?!" (yes I did think hell..  but it's the only time I thought it in those exact words...) Just all the pain she was in...  Nothing will prepare you for that.  Pain of your child, and nothing you can do to help her... But as suddenly as I thought that, it left.  A peace came over me.

The nurse asked if she would want a Popsicle.  And of course that cheered her up a bit. Poor thing tried to lift her head and couldn't.  She was tipsy, quite tipsy. So she just chilled and ate an orange popsicle. As she was eating it, I could feel ALLLL color drain from my face and I was praying, Dear God, I can NOT pass out!  PLEASE give me the strength I need!  Curt took one look at me and asked if I was ok, and I shook my head no. The nurse asked if I needed some water, then she asked if I ate anything.  Um, no, I couldn't even if I wanted too, but I knew I needed to get some sugar in me.  I remembered I had a granola bar in my bag and I ate that while she went and got me some water.  A few minutes later my color was coming back...  Then Curt so lovingly started laughing at me b/c "I" was the one who was getting light headed!  I laughed and said yeah yeah yeah...  But it all came up on me.  Ella in pain, Satan putting those doubts in my head of you didn't do the right thing, and 2 shots of morphine, then seeing Curt finally...  Oy...

Pastor BJ stopped by and visited for a few minutes and then prayed for us.  Can't even begin to tell you how much that meant to us.  We've never had a pastor visit us when we've been in the hospital...

We were trying to figure if we could sneak away to see Pastor and Angela and their girls, but there was just no way we could escape and they were trying to do the same!  We both were a tad busy with our kids!  :)

I had to hold her a few different times, and then put her in bed, and then hold her again...  But she started getting sick. The 1st time she did, it was orange and red..  I thought ok, she had breathing tube in her and her tummy was pumped twice, that's why the blood.  I didn't worry too much.  The next time it was more, and all red. Alot. I was a bit worried but didn't show it, then the nurse showed about 4-5 other nurses and I was like ok, this can't be that good right? They say they all in all they gave her 3 different "no more puking meds" but I think it was 4...?  I dunno, it was alot.  Finally after the last one around 7, it worked.  She kept her liquids in her and around 8:30 I asked the nurse if she could have some Tylenol to her with her pain. She was afraid to give her anything, and I was kinda too, but she needed something. She did give her some and she kept it in her and slept pretty good.

By this time XJ had come back and b/c I was holding Ella, Curt was dealing with him.  He didn't want to wake up.  But I can't say I can't blame the poor kid, not enough sleep and not enough to eat.  he was beat!  He also had to have some help breathing b/c he didn't want too.  Plus they had to hold his chin shut. I didn't fully hear everything and I honestly didn't want too.  I knew what I just went through with Ella and didn't know that I had strength to do it all over with XJ. And the fact that I heard, not breathing on his own...  I looked at Curt and he kept telling me he was ok and just fine.  Just the way his neck and chubby cheeks are that they needed to keep his mouth closed... Curt can explain it better, but that's the jist.  :)

XJ finally woke up and spit his breathing tube out and then went right back to sleep.  The nurse closely watched him for a good long while...

Oh, when they were bringing him in, they asked if I wanted to have the curtain closed since he was in the room next to Ella.  I said that prob would be wise til he was awake and alert...  Well, Ella saw him, and she got a small smile in her eyes and said XJ.  I said yes, XJ.  :)

We thankfully had the same room, each room has 2 bed in it..  closed off by a curtain, and it was looking like we wouldn't get the ones next to each other, let alone Curt being able to stay.  SO....  They each had a different nurse so they didn't get things mixed up and that way Curt could stay too.  We also didn't know how long we were supposed to be there, but it was 23 hours...  I was ready to go home, but honestly thankful that Ella was there as long as she was, same with XJ.

The nurses were great there!  I didn't get much sleep, b/c of course when it was time to sleep, they would be waking up and starting to need to go to the bathroom...  Peeing in a bed pan and a jug...  so fun!  :)

About midnight they both were perky enough, and Ella looks at him and smiles and waves!  He waves back, so then she said I love you, he replied with I love you.  Then she holds up her IV hand and he does the same.  XJ then pointed to his ear, and then to her, and she signed yes. Then they both passed out asleep....  It was a long night, I am not going to lie, but it was good too.

We got discharged around 8. Doc came and looked at Ella and her ear muffs, which is NOT the medical term. Infact I have NO idea HOW they came up with the medical term for these things... Hers was good, then he did XJ's. The kids got a certificate about being good patients, then 2 small toys, and off we went!

Had to hit Target on the way home for their antibiotic...  I didn't want to take them in, but Ella had to go to the bathroom, so we went in.

The kids were happy and excited to be home and they all were happy to see each other!  :)

Fast forward....  Monday they had a follow up...  A bit frustrated with all that b/c I was told to call them for appointment.  So I did on the way home from hospital on Thursday.  Their computer wasn't booting up with the appointment page so she had my name and number and was going to call me back that day with a time.  I said ok.  Never got a call, so I called the number right away Friday morning...  Ok, it was about 10ish... I got a machine, so I left a message, and tired to call a few other times, and left another message. I finally emailed our audiologist on our way out.  My mom told Curt and I go out while we had a chance...  ;)  We still had 2 free movie tickets and then went to Genghis Grill. She emailed me and told me a time.  I then got a time from the automated line on Saturday with a different time, then Sunday night Dr Reilly called me with yet another different time!  I was like really?  I just need to know what time to go in!  hahaha!!!  I called first thing Monday morning and was told it was the time on the automated call.

Got there, which I don't recommend going to Fairfax Children's, at.all.  Dr Reilly came in and kept saying how well the surgery was, and again about Ellas ear, but was pretty confident that it would be working just fine!  :)  I sure hope so! He then said that we have such a beautiful family and the kids are so adorable, that he would like us to record their activation with our iPhone and give him a copy. He wants to use it as a study and then to show others how the CI really does benefit.  He made it sound like he would want a few updates on how they are doing as well.  Yes, he's seen the WHOLE family, and this is first time I didn't have all the kids with me!  :)

Activation day is May 20th at 1pm. It could take up to 5 hours...  SO will post as soon as I can that day.  :)  The reason they are waiting til then bc they need to let the swelling go down and they need to fully heal. With having a magnet in their head, and by placing the one on the outside, it could pull out if they weren't fully healed.

Ella does have some swelling on her left side, but he said that one was a bit lower than the right side.  She could be swollen up to the time of activation, but not to worry.  He said there is no infection, but to watch and make sure it didn't get red.  He told me to put some cream on the stitches...  So, after showers tonight I put that on..  Oy, that was fun.  I told Curt and as I was telling him, I was thinking, I could've used a q-tip!  Haha, oh well....  ;)

I have stopped giving them Tylenol.. I may give it to Ella just b/c the left side seems to be hurting her a bit, but that's just b/c it's still swollen.  They are still on antibiotic for a few more days, and then this cream for the next 2 weeks, once a day.  I did ask him if they could ride bikes, with their helmets, and he said absolutely!  I wanted to jump up and hug him!  HAHA!!!  He said just watch them, but don't tell them no if they want to play like that!  :) Guess what they will be doing tomorrow???  :)

I used to be in charge of the meals ministry with our church, but with knowing how many appointments are coming up, I knew I couldn't handle being in charge anymore. I felt bad for asking to step down b/c I signed on for a year, but just knew I couldn't fulfill my year.  I asked someone else to take over and she agreed!  :)  She's doing an AWESOME job!  She also got some meals lined up for us!  I was floored.  I kept saying I can do it, just provide a meal the day we get home.  DeAnna had asked me if I needed anything, and Curt kept telling me to ask for meals.  You know me, I am not going to ask.  But I had a friend that was bringing it Friday night, so if we had something that day that way my mom didn't have to worry....  So DeAnna brought some supper for us Thursday.  I also had gotten a text before surgery from Kristen asking about meals.  I said fine.  She said ok, we will do it for a week.  I said no need, just do Thursday and Friday, and I'll be fine. Then I get we will do it for a week.  I said fine.  Then a few hours later I get another text saying that they will cover everyday for a week since we have a large family, and prob no leftovers!  ;)  I said, fine.  She wrote back, haha, we won!  So I of course said was there a bet going on that I wouldn't accept?  She said well some didn't think you would!  HAHA!!!  I guess they know me too well....  ;)

I kept thinking, I got home from China and I got 3 meals, and I am SOOOO NOT complaining, b/c I was in charge, I didn't ask for more.  It was ok and we survived, so I was like, I got through jet lag and adoption, I can do this.

But I am not going to lie.  It's been a HUGE blessing!  More than I can say! It's just SO hard for me to ask, let alone accept.  BUT as we were talking in our small group and I've heard it before, don't let the blesser not be a blessing, you are taking that away from them. And more along those lines.  Also about being disciples and making disciples.  It all fit in, trust me!  :)  Also, how some people in our church, this is their ministry and how they aren't involved in anything else.

I've been blessed by my church family so much in these last few months!  Yes, after we brought them home, but even more so since surgery.  I'm just in shock that that many people wanted to cook for US! ;)  Blessed more than I deserve!

Sunday after church my mom left, and since Curt was playing keys he wasn't home right away.  Mom left, I fed the kids and got them down for their naps, and just laid on the couch.  Curt got home a bit later and talked a bit, and then I just lost it.  So he sat down and I just cried, off and on...  Finally I was ok.  Then I got a text saying to get some rest (after I was informed I was right on the gummy bears!  haha!!!)...  I lost it again... Curt drew a bubble bath and I cried the whole time I was in there! ;)  It just all came down on me.  Just feeling overwhelmed from surgery, to having the meals brought in..  just everything! Lack of sleep didn't help either...  ;)  At this point I still thought it was just a week of meals, but it slipped somehow at small group that night that I had meals every other night then til the 10th!  So on my way to the doc office for follow up, I cried more.  just overwhelmed with gratitude. Still couldn't believe that many wanted to cook for us...  a pretty big family!  ;)

I don't deserve these many blessings!  I don't deserve anything!  But God is gracious enough to bless me with my awesome hubs, my kids and my church family!  Totally feeling supported through this all!  :)

Praying that XJ's brain responds to the CI and he starts to understand noises and sounds and his brain doesn't shut them out or off. I'm honestly not too worried about Ella due to the fact that the hearing aides were working and she did hear us and other things.  It will just now sound a bit differently.  More computerized.  ;)

Both Curt and I at one point said, why are doing this if the hearing aides are doing their job?  Once she gets CI she won't be able to hear ANYTHING unless she has the CI on.  BUT, she is losing her hearing and she can't fully hear everything with the aides.  With the CI she will be able to hear all sounds!

I also thought too again later on Wednesday when the brought XJ into the room, why did I do them both at the same time?  What was I thinking?  But again, as soon as I thought it, it went away!  I won't lie, I thought that about 5 different times, but each time, it went away just as quickly as it came and the last time I thought it, I got a peace.  A peace that can only come from our awesome God!

XJ is doing GREAT and he was doing great with recovery while at hospital!  Ella still every now and there is a bit mopy... But I really think it has to do with her one side still swelling.

Riding bikes tomorrow FOR SHORES!!!!

Thank you.  Thank you all for your prayers and text/emails about how they are doing!  It means ALOT!  I'm seriously overwhelmed with gratitude and just don't know how to say thank you, and just how much it means to me! <3 br="">

1 comment:

Linda Mcneal said...

Hi Mandy,you are a wonderful mother and we all knew you would be. To go and adopt children with all the care they need is just awesome! I am soo proud of the woman that you have become and most of the the mother that you are,Brason had his appendicts out on Thanksgiving so I kinda know what you went through but with two oh my! I don't know if I would have been calm either. We spent the whole weekend in the hospital and Jaclyn and her family and Melanie and hers were here and had to fend for themselves with their dad of course but he was up at the hospital and back at the house several times visiting with them and us. I am sooo glad to hear that you all are doing good and u both are awesome parents!