Wednesday, August 31, 2011

Quick Update-Prayers Needed

Today was eventful, in both good ways and bad.

Good: Lily was extubated (got her breathing tube taken out) today.

Bad: Since she is no longer sedated, she has been super squirmy. This evening she pulled out her arterial line and one of her IVs, leaving her with only one remaining IV. That is simply not enough for all the medication she is getting, so around midnight they did a procedure to place a new central line in her thigh. Poor thing. They tried so hard to get IVs in ANYWHERE else...but it just wasn't happening. She cried pitifully the whole time they tried (about an hour). She also has congestion in her lungs and they ended up giving her a few breathing treatments plus "chest PT", a fancy name for thumping her on the back :). They've been suctioning her nose so much that she's having constant nosebleeds now.

Rob's mom is spending the night with her while I get a few hours of sleep back at the Ronald McDonald House. We didn't expect to have to switch to "shift duty" today, so please pray for us and for Lily.

Monday, August 29, 2011

A Private Room And A Few Less Tubes

This morning we got moved to a private room in the PICU--Yay!! This means we can spend more time with Lily, and that's just what we did today.
Here's Lily this morning:
And here she is this evening:
Do you notice anything different between the two pictures??? Look carefully at Lily's belly...no more chest tube or pacemaker wires!! Those were the (good) highlights of the day.

The bad highlight of the day was a bacterial infection in her central line. She is now back on antibiotics and they removed the central line altogether. Hopefully they won't need to put one back in. She has been spiking fevers all day, and pretty high ones too...around 103.

We also saw a lot of these:
Beautiful blue eyes!
She did have some bad moments this afternoon. At one point she was upset, she stopped breathing to try to cry (which is hard to do with a breathing tube in!), her eyes rolled back in her head, her whole face turned PURPLE and in rushed the respiratory therapist to work on getting her breathing again :(. I must say, that is something I NEVER want to witness again! She also had a period of time where it was very clear to me that she was in a lot of pain: all four limbs were tense and straight, she was shaking slightly and her face was in "cry mode". That was really hard, too. I asked the nurses to increase her morphine, which they did, but that also depresses her respiratory system.

Ok, specific prayer requests:
  • That she would get OFF the breathing tube tomorrow! It's kind of a long shot at this point, but I'm still hoping for it.
  • That she would not need another central line.
  • Healing for her bacterial infection.
  • No more fevers.
  • That she would not be in pain .
  • That she would not stop breathing again.

Sunday, August 28, 2011

Post-Op Day...What Day Is It Again?!

The days are all running together.

Weekend recap: more fever spikes, but no signs of actual infection. This morning they took Lily off the medication keeping her paralyzed, but she woke up instantly and tried to pull the breathing tube out. Her O2 sats dropped to 12% (!) so they quickly put her back on the medication. This afternoon we just happened to be around as they were changing medication and she woke up a little bit, opened her eyes, moved her arms and legs, and tried to pull her NG tube out a few times :). This happened right before Rob left for Blacksburg so it was such a gift for him to see her beautiful eyes open.
She *might* be moved to a private room tonight!! Please pray that this happens so we can spend more time with her in the hospital. They don't plan on really waking her up and extubating her until at least Tuesday.

Right now Rob's mom is staying with me at the Ronald McDonald house. I'm so thankful she was able to stay so I'm not by myself (and without a car)! Rob and his dad will come back on Friday evening.

Saturday, August 27, 2011

Post-Op Day Three

(The internet went down after I typed this last night so I'm posting it this morning...)


This will be short and sweet.

  • No pictures today, Lily looks the same as yesterday.
  • She is still sedated, still intubated, and expected to be that way for most of the weekend. 
  • We'll definitely be in the PICU all weekend still. We are praying she gets to wake up before Rob has to go back home on Sunday :(
  • We got a room at the Ronald McDonald house today, so that's where we are staying now. More about that tomorrow.
Some prayer requests:

  1. That we would get moved to a private room in the PICU. That's the main reason we don't spend more time with Lily at the hospital, there just isn't room.
  2. That Lily will be extubated and woken up before Rob has to leave.
  3. Stabilization for Lily's blood pressure, heart rate, and fluids.
  4. That her fevers yesterday and today are not due to any infections, and for her to stay healthy.
  5. Healing for her pulmonary hypertension.
I realize not all of the above makes sense to everyone, but God knows what we need. Thanks for your prayers!

Thursday, August 25, 2011

Post-Op Day Two

Today was a pretty uneventful day. We didn't spend much time at the hospital because Lily was sedated all day (and will be all night...and probably all day tomorrow...etc). In a weird way it feels like we're back in Ukraine: Lily is in the hospital, we are visiting twice a day, we're not able to do much during visits, she's not aware of our visits...lol. I'm sure it will be a different story when they take out the breathing tube and wake her up, though.

The major event of the day was that she developed a fever. This could be due to an infection or simply her body reacting to the surgery. They took blood and urine cultures to test for infections and are giving her broad-spectrum antibiotics, just in case, plus tylenol to bring her fever down.

Her new blanket is courtesy of the Linus Project:
Pulse oximeter on one foot...
IVs everywhere...hands, feet and neck....
Chest tubes 
Sweet angel face :)

I am still planning to write a post about the sleeping/attachment thing. I've been reading "Parenting Your Internationally Adopted Child" and that's where I'm getting most of my information. It's a great book, I HIGHLY recommend it! Maybe if tomorrow is as uneventful as today I can get that written :)

Wednesday, August 24, 2011

Post-Op Day One

Lily made it through surgery just fine, though it did take longer than expected. We got to talk to the surgeon afterward and he said some of it was "tricky" and that her VSD was, "huge, Huge, HUGE!". He closed the VSD with a Gore-Tex patch. He stitched the ASD together since it was a smaller hole, but left a tiny little opening to relieve any built up pressure. The PDA he closed just by clamping it. He also did some work on the tricuspid valves and mitral valve.
Lily's favorite pre-op activity...chewing on bars!
Ready for surgery...
Around 9pm we were finally able to visit her bedside in the PICU. We are in the same room as last time, sharing with two other babies. They are keeping her sedated while she has the breathing tube in, which could be for another 24 hours. She was fighting the sedation, though! They told us to be prepared to see her looking "rough" but honestly I thought she looked beautiful...
If you look closely you can see her wrists are tied down in case she wakes up...so she can't pull the breathing tube out. Little stinker!
We decided that since they are keeping her sedated all night, there was really no reason for us to stay at the hospital overnight. So we came back to the hotel and will be going to bed here shortly. Tomorrow looks like it might be a pretty boring day if she stays intubated and sedated, we'll just have to see how things go. I can't wait to get out of the PICU and into our own room...

Thank you for all the prayers, please continue to pray for a speedy recovery! 

Tuesday, August 23, 2011

Not Perfect

One reason for my lack of posts lately is that I often want them to be "perfect". So if I don't have enough time to make them perfect, I just don't write. All that to say, tonight's post will not be perfect, but I'm trying not to let that stop me anymore!

~~~I got several comments and emails about Lily putting herself to sleep being a good thing. I have a whole post (in my head) to reply to that...someday...lol! For now, I'll just say that it's an orphanage behavior and shows that she is not very attached to us yet. She feels alone in the world and doesn't get anxious or worried when we leave her sight. So, for a while, we WANT to have her clingy at bedtime because it will indicate she is forming a stronger attachment. Of course, then we will start working on her putting herself back to sleep on her own again :)

~~~Lily's surgery is tomorrow morning. They will be repairing her VSD, ASD and PDA. It's open heart surgery and she will be put on a heart-lung bypass machine for a while. For the actual procedure they stop her heart completely. Everything should go well, but of course there's always the potential for complications. I feel pretty peaceful about it, which is good. I'll keep ya'll updated on here. For anyone in Charlottesville who wants to visit, send me an email... :)

~~~My friend Christie is adopting Andriy from the same orphanage Lily was in, and they are leaving SOON. Probably in a few weeks. They are still $3000 short of being fully-funded. If you could help them out with any amount, large or small, I know it will be greatly appreciated. Go here to donate (tax-deductible)!

Wednesday, August 17, 2011

Bonding

I've been kicking this post around in my head for a while now, time to get it out there!

Shortly after we got home from Ukraine, someone asked me what has been the most surprisingly difficult part of the whole process. I immediately answered: bonding with Lily.

You see, silly me, I didn't anticipate that I would have trouble feeling bonded with her! I knew it would take time for her to bond with us, but for some reason I didn't realize that it's a two-way street: if she doesn't have a bond with us, then it's very difficult to feel bonded to her (some may disagree with me here, I'm just stating my own personal experience). That really threw me for a loop.

I will never forget the evening of our Gotcha Day. Lily and I were on the bed in our apartment (Rob was at the grocery store trying desperately to find something that she would eat); she was crawling around, crying and screaming...I was crying and having my first real, "What have we done?" moment. This little stranger had suddenly invaded my life and she wasn't going away! We were stuck with her!

For the first few days I really wanted nothing to do with her (doesn't that sound terrible?! Honesty post, here!). Rob did everything: he made her food, fed her, changed her, held her, etc. I just did my best not to cry as we flew through the rest of our adoption process and made it home in record time.

I had done plenty of reading about attachment and I knew what the experts said to do: hold her constantly, have only one person feed her and change her, rock her to sleep, don't let anyone else hold her aside from Rob and myself, no visitors for a month, cosleeping or having the crib in our room, etc. I had great plans of doing this perfectly and having a secure attachment after a few weeks...HA! We didn't do any of that. We just couldn't. I couldn't. Lily couldn't. It was too much for all of us.

So we let other people hold her. We had visitors the day we got home and most days since. We started off feeding her in a chair with her holding the bottle. We let her rock herself to sleep. She's slept in her own room since Night 2.

I am happy to report that things are getting easier. Lily is showing more signs of attachment to us, and I am feeling more bonded with her. She wants to be held more. She prefers to be held by us, although she will let anyone hold her for a short time. I feed her in my arms now, holding the bottle for her and making lots of eye contact.

Lily still puts herself to sleep and sleeps in her own room. I think all three of us need that right now. I feel confident that there will be a time when she can't fall asleep without one of us in the room with her, and that will be a good sign. I feel like I will be ready for that when she is; none of us are ready for it now.

I hope that this post will encourage any other adoptive (or biological!) mommies who are struggling with bonding. It does NOT always come naturally, and that is ok! It will come. I no longer think of attachment as something you either have or don't have; rather, it is a continuum that you slowly move along from one side to the other. I am happy to say that Lily and I are on the move :)

Saturday, August 13, 2011

And The Next Surgery Is....

.....scheduled for Wednesday, August 24! So my Secret Plan didn't quite go according to plan, but I am still very happy about how things went at UVA. Just hearing the surgeon tell us his initial doubts about Lily's case, what he expected to find (not a candidate for repair surgery), and how surprised he was that she IS a candidate for repair surgery, is a true miracle.

So we will be headed back up to Charlottesville on Tuesday, August 23 for a pre-op appointment with Lily's surgeon (different from the one who did the cath). We did find out that it will be open heart surgery. She has three holes to repair: her VSD, ASD, and PDA. It was a little weird to say, "See you in a few weeks!" to the nurses in the PICU!

As far as recovery goes, they told us to expect Lily to be in the hospital for 2-3 weeks. We are trying to get reservations to stay at the Ronald McDonald house, and Rob may have to go home during some of that time to work. He is blessed to have FMLA leave, and a very understanding workplace, but it is still unpaid leave.

Now I will leave you with a few pictures to make you smile. Lily has been smiling a LOT since we got back from the hospital. I imagine her thinking to herself, "I've hit the jackpot with these people; we always go back home and there's always enough food!"

Ready...
Set....
GLEEEEE!!!!!!!!!

Thursday, August 11, 2011

Post-Surgery Update

Whew, what a day....

Brief recap: Lily's surgery was scheduled for 9:30am. We arrived at the hospital at 8am. Around 9am we learned that they planned to admit Lily to the PICU after surgery and keep her at least overnight. This wasn't really a surprise to us. The problem was, there weren't any available beds in the PICU. So, Lily's surgery had to wait until a bed was available for her. Thus, other surgeries went ahead of her and took a lot longer than originally planned. To make a long story short, she didn't get taken back for her surgery until after 3pm! Lily hadn't eaten since 8pm last night, so as you can imagine she was not a happy camper. The anesthesiologist allowed her to have about 4oz of apple juice around 1pm, which really helped settle her down enough to sleep a bit.

Surgery results: Everything went really, really well. Unfortunately, Lily's ENT was unavailable to do her bronchioscopy because of the scheduling. The whole procedure took about two hours, so around 5pm we got to talk with the surgeon. He told us that he had expected to find that Lily was NOT a candidate for repair; however, he was pleased to be able to give us the news that, despite Lily's age and severe heart defects, she IS a candidate for repair surgery and they are going to schedule it sometime in the next few weeks!!!! PRAISE GOD!!!

Make no mistake, this is a risky surgery. Nothing is set in stone. But without this surgery her life expectancy is only a few decades. In her case, the benefits outweigh the risks. We are praising God tonight because this is a TRUE MIRACLE!!! I don't know yet if it will be open-heart surgery or if it can be repaired with a device through a catheter. Hopefully we will know more tomorrow.

Lily is sharing a room in the PICU with two other very sick babies, and there is just one chair by her crib, so Rob is spending the night with her while I get some sleep back at the hotel. I'll be getting up before the sun to head back to the hospital so Rob can get some sleep. She should be discharged tomorrow, hopefully in the morning but we'll take anytime!!

Thank you for all your prayers...they WORKED! Please continue to pray and I'll continue to update on here. Thank you!!!!

Wednesday, August 10, 2011

A Pre-Surgery Update

Hello from Charlottesville!

Lily did great on the trip here. It's about a 2.5 hour drive from Blacksburg and she slept for most of it! This was our first "long" trip with her in the car seat, and she usually doesn't fall asleep in the car. She also took a bottle that had NOT been warmed up! I know that may not seem like a big deal to some of you, but for Lily that is huge. When we first adopted her she wouldn't take any bottle that wasn't VERY warm. Now she will take room-temperature and even cool!!

We went straight to Lily's ENT (Ear, Nose and Throat) appointment and we REALLY liked the doctor. He has experience with children with Down Syndrome, so he was able to compare her to other kids with DS and not just other kids in general. This was really helpful for us. We learned that Lily's ear canals aren't terribly small for children with DS, and he didn't see any problems. Her sinus congestion is typical for her small sinus cavities, and may also be related to her elevated thyroid levels. They are going to follow up on that for us. He is also going to perform a bronchioscope tomorrow while she is under general anesthesia, just to get a good look at her throat and make sure there are no problems.

Then we went to the hospital for Lily's pre-anesthesia appointment. Our ENT assured us that there should be no problem sedating her, but the doctors we saw at the hospital were being very cautious and took some time examining her to make sure everything would be ok. In the end she was cleared for surgery, and we will be back to the hospital tomorrow morning at 8:30am!

Please pray for her surgery to go well tomorrow. Also please pray that they determine she IS a candidate for repair surgery! (And if that repair surgery could be performed ASAP, that would be wonderful, too :))

Saturday, August 6, 2011

Lily Smiling: Caught On Video!

I couldn't capture any good still images but the video is still cute :)
video

Thursday, August 4, 2011

My Secret Plan

I want to share with you my Secret Plan. My Plan for Lily's heart surgery next week. See, it goes like this...

When they do the heart cath they will check to see if Lily is a candidate for repair. The Plan is for the doctors to see that, not only is she a candidate for repair, but she needs the repair ASAP. The doctors will consult and decide that she must have surgery immediately, no more waiting. They will schedule the repair surgery for the next day.

The Plan continues with Lily having repair surgery next Friday, followed by a speedy recovery.

Will you join me in praying for my Secret Plan to become a reality? I guess it's not so secret any more...so SPREAD THE WORD!

Wednesday, August 3, 2011

Scratch-Me-Not

We've had to break out the big guns:
To help Lily's ears heal...
Her new ScratchMeNots:
We've even added the no-no's under the ScratchMeNots.

Poor little girl. Poor little ears. Poor Mom!