Following the hospital discharge...

So Alexis made it home safe and sound on Sunday. Monday I got a call from the nurse practitioner. She wasn't working on Fri, Sat, or Sun and wasn't expecting us to discharge before she returned to work yesterday. Needless to say, she was quite surprised to get to work on Monday and see that Alexis was gone. She made our follow up appointment for Monday morning. We will meet with her, the cardiologist, and the surgeon. She made sure that Lexi had pain medications (we have Tylenol 3) and gave us some directions: there are 2 immunizations she can't receive for 6 months due to having a blood transfusion, Alexis will need antibiotics if she should have another surgery of any kind in the next 6 months (let's pray NOT) and I was to remove her bandage today. Ugh. For the squeamish, proceed to the next paragraph. They had a clear bandage over her incision and the hole where her drainage tube had been. I was afraid to remove it for fear of great bleeding because the way it looked, one would think that the bandage would rip the scab right off. Thankfully, the bloody scab came off, but it's healed up underneath and the scar looks great! And Alexis didn't even flinch when I did it. I should be a nurse.

Alexis is doing great since coming home. Of course she's still healing and has pain issues and discomfort. When you look at her and she looks so great, it's hard to believe that in the course of a week she's had open heart surgery, been hospitalized and is already home. Who comes home from open heart surgery in 6 days???!!! She's my little miracle girl. Anyway, she isn't quite back to her laid back, easygoing ways. She's quicker to cry, she squirms more and needs to be held more. She is finally now acting like a normal baby. I was just spoiled before. I also realized, after a few tearful episodes (her, not me), that with a healed heart, came a bigger appetite. (A hearty appetite--get it?) She used to eat 3 ounces at a time, 4 ounces max. Now she can eat 5, sometimes 6. She naps very little during the day, but I'm not complaining because she's still sleeping all night.

Thanks for all the prayers. We are very blessed that Alexis received such excellent care, had the best doctors, and was in such a great hospital. Although we still can't believe Peyton never stopped by...

It's official...

...Alexis is being discharged!

Today just may be the day...

Alexis made it all night with no oxygen. Her last IV has been removed. (Alexis is happy that she can finally suck her thumb again!) The cardiologist was just in and thinks she looks good. He just ordered an echo which has to be done before they will discharge her and if it looks good, she can go home today!

Did someone say "home"?

I was greeted this morning by BIG Lexi smiles. My happy baby is BACK!

The cardiac surgeon came in and said that if she continues to eat well and is still without oxygen tomorrow, he saw no reason why she couldn't go home. Then, after he left I realized that he thought she was currently without oxygen because he was looking at the wrong oxygen tube, when she actually is still on a quarter liter. The nurse tried to turn off the oxygen again a while later but her sats dropped and we had to turn it back on.

Even if they can turn off the oxygen tomorrow with success, it wouldn't surprise me if they'd say, "let's wait another 24 hours to make sure she does okay". I'm totally guessing here, but I'm not holding my breath for a discharge tomorrow. I told the nurses that I prefer to be overly cautious. If they think they should wait until Monday, or even Tuesday, it would be okay by me.

I was so pleased that Lexi's pediatric surgeon from when she had her duodenal atresia surgery in the NICU stopped by. He was on the unit visiting another patient, happened to see us (one of the benefits of being located right across from the nurses station) and he came in for a visit. Such a nice man! He oooohed and aaaahed and asked about her and looked at her new scar and the old scar. He didn't have to stop by. What a good guy. It's a big loss for St. Vincent Hospital that he's moving to Colorado.

I don't think I'd updated about Mom's status, so here goes. The cancer is back already. She went in for her 3 month follow up and already there were 3 tiny tumors. Luckily, as well as the last surgery went and as quickly as she healed up, they've decided this time to do the surgery as an outpatient which thrills her. (Is it possible to be "thrilled" regarding having surgery??) So please add Mom and Dad to your prayer lists.

Movin' on up...

When I arrived at the hospital this morning, Alexis was down to one IV and was starting to wake up. The nurse said she hadn't had any pain meds since 4 a.m. and was doing well. She seemed relatively content and didn't have any pain meds until about noon. The atelectasis is clearing up but she still requires a small amount of oxygen through her nasal canula. The cardiologist says that her heart sounds great and he removed her drainage tube. Yeah! She has been eating well and they finally moved her off the PICU to the third floor pediatric unit!

The pediatric unit is great. It's brighter, happier, and bit noisier. It's not nearly as depressing as the PICU. And we are located right across the hall from the nurses station. Alexis has been alert yet has napped well. She's currently jabbering away and even smiled a while ago.

Happy baby=happy mommy.

Slowly but surely...

Every day gets a bit better than the last. The pain meds have been decreased a bit although she still gets Tylenol 3 and morphine. She's been a bit more alert. Her heart sounds good according to the cardiologist. I was hoping she'd be off the ICU by now and up on the pediatric unit, but they're still being cautious. The atelectasis is still in her left lung and is now also in her right. The doctor said he wants the atelectasis to at least start improving before they would move her to the pediatric floor and I am fine with that. I'm glad they're overly cautious. Her temperature has been fine today and she even started on formula. So if we can just get these lungs inflated, we'll be doing great!

PICU: Day 2

Wow. When they warned me that the couch in the room was uncomfortable to sleep on, they knew what they were talking about. Ugh. I was up about every half hour and finally at 4:30 gave up and got up. I should have just tried sleeping standing up. I might have been more successful. And the couch was made for short people. I had to turn at an angle just so I could hang my feet off the end. Okay, maybe not just my feet. If I angled just right I fit on the couch from about the middle of my head to my shins. Me Amazon Woman. Humph.

So Alexis is doing well: not great, not fair. Good. She slept well last night as long as she had Ativan in her system. One test they did indicated decreased hemoglobin so she required a blood transfusion which helped her right away. It wasn't surprising to me after seeing all the blood draining out of her little body through her tube.

She slept most of the day. When she would get restless they would either give her Ativan or Morphine and both seemed to help. A chest x-ray revealed atelectasis--a partially collapsed lung. Not a huge worry (she had this when she was in the NICU) because it will hopefully take care of itself. But to help out her lung and her breathing they wanted her more alert and more upright. It's a fine line. You want her medicated to dull the pain, but you don't want her too sedated because she'll breath better if she's awake.

She ate for the first time today. I gave her some of my Dunkin Donuts. She really likes the jelly filled donut holes.

Just kidding. Can you tell what I'm craving? But seriously, I was able to give her some clear liquids (pedialyte) and they will see how she tolerates that before starting her on formula. She had almost an ounce this morning with no problems. About 5 p.m. she woke up and was more alert than she'd been since her surgery. She was a bit fussy, but not terribly so. I gave her more fluids and she had almost an ounce and a half of a non-fat carmel latte.

It was really nice seeing a couple NICU people today. I got to see the NICU First Steps Coordinater and then one of our favorite NICU nurses stopped by.

There is a possibility of Alexis being moved to the pediatric unit tomorrow if things go well. Although between the lung issue and having a slightly elevated temperature (which went back down after a dose of tylenol), we'll just wait and see. She did get one of her 3 iv's out today and might have the drainage tube removed tomorrow. I was glad they changed her wound dressing today so she wasn't so bloody. The incision looked pretty impressive.

Jason and I got back home tonight in time to see the boys before they went to bed. They seem to be having no concerns regarding all that's going on. They are glad to know Alexis is okay, but I think they like all the attention of their grandparents, going out to eat at almost every meal, and getting to spend the night at Aunt Paula's.

Time to go to bed now. I'll head back to the hospital tomorrow after I put Nicky on the bus. This time I'm certain I won't have to work too hard to fall asleep. I'll just count donut holes...

Sleep soundly my little babe.

Alexis came off the vent this afternoon after waking up and staying pretty alert for a short while. I was even able to hold her. She had a hard time getting into a sound sleep, lots of fidgeting, pulling out her nasal cannula, and seeming unsettled. I was told she could have some extra pain medication every hour, but that didn't seem like enough to me since she still seemed uncomfortable. So they finally gave her some Ativan to calm her and she appears to be peaceful.

It's was cool to learn that our respiratory therapist today, who happens to be married to our nurse this evening, has a daughter with Downs.

I'm off to sleep on the hospital sofa. After two short nights, I don't think I'll have much of a problem getting a few zzzzzzzzz's.

I'm with my baby!

Alexis is still sedated, but you can tell she's trying to wake up. Once she's awake they will try turning off the vent and if all goes well, they will take the vent out. She has a bandage over the incision, 3 IV's, and a tube coming out of the bottom of the incision. Her hands are currently restrained and you can tell she doesn't like it. Once she wakes up she will probably not be very happy due to the vent, but she is still on strong pain meds to keep her comfortable.

It's a different world in the PICU than it was in the NICU. There's a tv in the room, we can eat in the room, and I can use my CELL!! YEEEEE HAWWWWWWW.

Surgery complete!

At 10:15 we were told that they were already closing. We were taken to the PICU waiting area (still here) and about 10:30 the surgeon came in. The surgery is done. There were no surprises, pretty much what they expected. In another half hour or so we will be able to see her. She will be sedated probably until tomorrow morning.

Oh the relief.

Pre surgery pictures

My heart hurts

Thank goodness we were able to feed Alexis up until 3 a.m. She took a good 4 ounces at 2:30 a.m. and stayed asleep during the whole drive to the hospital. She was all smiles as they checked her in, put her in her cute little hospital gown, and visited with her parents and grandparents. At around 7 a.m. the grandparents said their goodbyes and Jason and Alexis and I went with the nurse up to the surgery area.

Saying goodbye to her and watching them carry her off was awful. It helped that she was in good spirits the whole time. I'm a wreck. Guess that's to be expected.

The 4 grandparents and Jason and I are currently in the surgery waiting area at St. Vincent. We have a pager and a nurse who will keep us updated. It's nice that the cafeteria is real close and there are computers in here. I'm hangin' in...it's gonna be a long morning.

Pre-op

We reported to St. Vincent hospital today at 11 a.m. for Lexi's pre-op appointment. She had an EKG and an echo. Dr. K showed us the hole in her heart on the monitor and describes it as "moderate" in size. It's always been described as large before, so moderate is fine with me. The nurse practitioner spent lots of time answering questions and giving us info. We can feed her up until 3 a.m. tonight which is a huge relief to me. Alexis is always asleep by 9 p.m. and sleeps until at least 6 a.m., but I'll be happy to wake her up for some extra feedings if that will help her out tomorrow morning. We have to be at the hospital by 6 a.m. We met Dr. A for the first time and he will be the one performing the surgery. He discussed the risks. Not fun to hear. There is a 2% chance that she wouldn't make it through the surgery. The number might seem low to some, but when you figure that we had a 1 in 300 chance of having a baby with Downs...2% is not comforting. Not at all. But I still feel like she will be fine. We signed all the consent forms. (Paperwork for refinancing the house was nothing compared to this!) Alexis will have to receive a blood transfusion during the surgery. It's possible that they will have to put in some pacemaker wires. There was lots of stuff that made no sense to me, but I have a hard time taking my mind away from that scary statistic the surgeon mentioned. Everyone has said the surgery will take 3-4 hours. The surgeon predicted 2.5 hours. Everyone has said Alexis will be in the hospital for 7-10 days. The surgeon said a week, give or take a day. She will probably have her vent in over night. She will be heavily sedated for a majority of the first day.

We were then walked over to another area of the hospital for more paperwork. We walked a far way to get a chest x-ray, walked back to where we had filled out the paperwork, and then walked to the Children's hospital for a blood draw. I told them I do not want them trying to get blood from her heel. It never works and they end up having to put in a needle. So they did the needle instead. My poor baby. The turniquet really hurt her and then the first needle didn't cut it, so they had to start again on the other arm. And then they had to keep pushing the needle around in her arm to get the vein. My poor baby just screamed. I wanted to do the same, but held it together. I just keep thinking how I can't imagine going through all of this with a toddler or older child. At least Alexis will remember none of this.

3 1/2 hours later, we were on our way home. Ugh.

Now, on a lighter note: My aunt had heard of a website that is used for blogging when people have medical things going on with them. I just signed up for it to keep people updated on Alexis. I will cut and paste exactly what I'm writing on this blog but you may want to try the other site because a) I don't think you will have all the difficulties with making comments and b) you can subscribe to that blog easier and if you want to enter in your name and e-mail (under the "guestbook" tab and check at the very bottom that you want to receive updates), you will get sent a notification every time I update it. Just thought I'd try it to see how it goes. I will limit the new blog to only updates on Alexis, so you may want to continue checking in here for additional pictures or any news not related to Lexi.

The website address for the new blog is: http://www.caringbridge.org/visit/alexis2009

or you can go to www.CaringBridge.org and enter in the website alexis2009

Preparing...

My mind is pretty much consumed with Alexis's surgery this week: what questions I need to ask at the pre-op appointment tomorrow, what I need to pack for the boys when they go to Paula's house on Monday night, what I need to remember to pack for the hospital for Alexis, what I need to have ready for the boys this week...

I've heard a lot of people say what a wonderful place the Peyton Manning Children's Hospital is, and I know it to be true. But what I wouldn't give to be able to return to the NICU where I already know almost everyone. I miss my NICU family. It's a strange thing when you go from spending all your time with these people who you get to know so well and then suddenly all contact stops. It's kind of sad even. I sent an e-mail out to our former doctor and nurses to let them know of Lexi's surgery. Hopefully I will hear back from them.

On the plus side of going to the Children's Hospital instead of the NICU: there will be a tv in the room, a telephone in the room, I can eat in the room...still no cellphones, but I'll probably sneak a text or two from time to time. Unfortunately, since I quit my job at CICOA, I had to give back my laptop. So the updates won't be as frequent unless I can convince Jason to buy me a laptop tomorrow.

Tomorrow is our pre-op appointment. Jason's folks will be here to pick up the boys from school and watch them while we're gone. Mom and Dad will come in tomorrow also. The boys will go to Paula and Ron's on Monday night so that the grandparents can be at the hospital for Tuesday morning's surgery. Then Mom will be at our house for as long as we need her to be with the boys. I have the best Mom. We are so lucky to have such loving and available family to help out. And we have wonderful friends, too. So many friends have called to offer to do stuff for us while Alexis is in the hospital. We are blessed.

Thank you for your prayers and thoughts this week while Alexis goes through this surgery and heals. I'll keep you as updated as possible. We know that Alexis is a tough little cookie and she will be just fine. God is good.

5 months old

Alexis's surgery details

Yesterday Alexis had her cardiologist appointment. Since she's almost 5 months old and has put on a bit more weight (now at 10 lbs, 8 oz), Dr. K decided the time had come to schedule her heart surgery. (For those who don't know, a week before she was discharged from the NICU, she was diagnosed with a VSD--a large hole in her heart, that requires surgery to repair.)

I met with Sara, the nurse practitioner, who was able to tell me what to expect. On Monday, September 21, she will have her pre-op appointment where she will have some tests done (EKG), blood drawn, x-ray, and will be seen by the cardiologist and the surgeon. We will also have to sign paperwork and consent forms. It ought to take about 3 hours. At a later time we will be told at what time she has to stop eating on the night of the 21st. Ugh. She will be home with us that night and then report to Peyton Manning Children's Hospital (at St. Vincents) first thing in the morning on Sept. 22. Again, I don't know any times yet.

An hour or two before the surgery, Alexis will be sedated and they will then intubate her, put in any IV's, a catheter, etc. Family will have to wait in the waiting room but Jason and I will be able to go with her when she's taken to the surgical area. When she goes to the operating room, we will then be taken to the surgery waiting area. The surgery may take up to 4 hours.

After the surgery, Alexis will be taken to her private room in the PICU (Pediatric ICU). Hopefully they will be able to take out her ventilator later that day and maybe even eat later that day. I believe she is expected to be in the PICU for a day or two, and assuming everything goes well, she will then be moved to the Pediatric Unit. Most kids with this surgery stay in the hospital for 7-10 days.

One parent is able to sleep in Lexi's room with her. 2-3 visitors are allowed at a time but they may very well limit this with flu season approaching (who are we kidding. Flu season is here! Have you seen the news lately?) Siblings are the only kids allowed to visit. If you have even a hint of a cough or a sniffle, PLEASE DON'T COME!!! With Alexis expected to be in the hospital for only a week, I'm fine (again, back to that flu paranoia of mine) with no visitors coming (grandparents are the obvious exception) just to play it safe. Once she's healed and we're home, the masses are welcome. But I'm not cooking.

Typing in my sleep...

The surgery has been scheduled. Alexis will have her pre-op appointment on Monday, September 21. She will return home with us that day and then go back to the hospital on September 22nd for her heart surgery. I don't know times yet. I met with the nurse practitioner (loved her!!!) who gave me some details and some reading materials. I'll post more details tomorrow, but for now...

Good Night!

Insomnia

Maybe I'm a bit more anxious about today's cardiologist appointment than I thought. I've been awake since 3 a.m.

In my mind I have continually felt like the heart surgery is still months away but then it struck me last night, Alexis is just days away from being 5 months old and if they want to have the surgery done by the time she's 6 months old...they could very well tell us to bring her in next week for the surgery. I know it's pointless to stress about this kind of thing. "Put it in God's hands!" I keep trying to tell myself that, but easier said than done. Anxiety is exhausting! Thank God I have so much family available to me to help out with watching the boys. I can't imagine if on top of the stress of getting Alexis through this surgery and hospitalization, I also had to worry about the boys and getting kids to and from school and activities. I am SO blessed!

And speaking of anxiety, I may have to stop watching the news. All you hear about any more is this swine flu! Ugh! I usually have the mindset that the media is only going to make things sound worse than they are...never better. But you can't help but hear these numbers of how many people are going to be affected, how many people could die... I called the pediatrician's office yesterday to see about getting the flu shot but they don't have it in yet. I think I may take the kids over to the CVS minute clinic tomorrow and all 3 of us can get our shots. I'll buy them some tootsie pops first and they should be just fine. If not, we're off to the dollar store. I've never taken them there before, but what could be better for a 4 and 5 year old than to walk into a store and be told, "pick out anything you want and I'll buy it for you." My parents never said that to me when I was a kid. So I must love my kids more than they loved me.

Hmmmm....4:35 now. What to do, what to do...