Pediatrician

Today we saw Dr. B. He said that she looked great! He couldn't believe that she had surgery a week ago. I was a little concerned about some chestiness when she would breath but he said it was mostly nasal and the chest was due to her being intubated. She is definitely acting like her old self. Now, we just need to get her back on her routine, which is taking a lot of time. If we could just get her to go to bed without falling asleep in our arms and THEN putting her to bed, that would be great! Any suggestions?

She's Back!

So, Lo is pretty much back to normal. She's trying to climb and getting into things that she shouldn't be. We are still housebound but go to see Dr. B her pediatrician tomorrow and Dr. S her cardiologist on Wednesday! People have been great and I want to thank Shannon and Justin for the wonderful Chicken Divan and Brenda for Baked Spaghetti and Chicken!

We are still doing laundry and trying to get into a routine. Tomorrow Lola comes back and that should be interesting. I will update tomorrow after the appointment with Dr. B. Until tomorrow, enjoy these pics from the past few days! (Yes, she did have to have stamps on her foot!)

Fabulous Free Fridays

Ya'll, if you haven't checked it out yet go to seventhsmith.blogspot.com or to Evie under blogs and see what Evie's Momma gives away every Friday. It's fun! Take a look!

Home

We got home yesterday afternoon. Last night was a little rough and it took her a long time to settle down but Lo, John and I had a little sleepover in the living room. Trying to work on her routine today but John's parents are leaving this morning so it may be hard. I am going to be taking more and more pics as the weeks go on so I will posting a lot hopefully :O)
Thanks again for all the prayers! God truly does listen and answer! She is our miracle. Today is the Heart Walk in Charleston. We wish we could be there and wish our friends have fun! We will see them soon! Please also remember all the little ones down at MUSC that are fighting for their lives. They are all too cute!

Pictures from today

Here are some pictures from today and GUESS WHAT: we may be able to go home tomorrow! I don't want to jinx it but we are super excited!

Blanket finished

I can't wait to show her this tomorrow!

Day Four

We walked in to PCICU and found Lo eating eggs and grits this morning. She was so happy to have food! We also got to hold her! She is coming around to her old personality too! She has also eaten lunch and got her central line out. Dr Bradley is going to take out her chest tube this afternoon after he gets out of the OR. Then all we have to do is get her oxygen level to stay in the 90s on room air and we are good! I hope we will be out of here by Saturday but you never know. I will post pics later tonight of her eating and being a cheese ball! Thanks for all the prayers!

Progress

This is what I have done while I have been here. Just a few more rows and her new blankie will be done!

Before and After

After throwing up, feeling much better and watching Mickey Mouse, Wow Wow Wubbzy and Backyardigans.





























Before throwing up and the NEW way to wear a nasal cannula, can you see it on top of her nose??

Coming soon...

I will post later the new way to wear a nasal cannula, and some other pics if she will cooperate to get more pics taken today........

Day Three....

We got to see Lo this morning and she was awake, but groggy. She wants us to pick her up so badly but she still has her chest tube in so we will see. She had a good night and got to watch some TV. She has even had some milk.

The things that still need to come off or out: central line, chest tube, IV in foot and pacing wires. Then we hope for good eating and no fever! They are truly pleased at the progress she is making and she is ready to move up to the floor (7C) BUT they are FULL. No one is moving or going anywhere so we will probably be discharged from PCICU.

Thank you for all your prayers. I will try to get some pics today. She's not too happy but we will see, we did see a few smiles here and there. :O)

Day Two

Update: Lorelei is finally resting peacefully. They did take out the breathing tube and she was not happy, she just wanted to be on her belly where she is most comfortable! She was fighting sedation and finally Grandma Friedel held her and rocked her and she calmed down. (They don't normally allow it but it was the ONLY way she would calm down. She even tried to sit up at one point.) They took her catheter and heart wires out and also took the oxygen sensor off of her head. She has a heavier blanket on her now so she may have been cold too. But she's more comfortable now with some tubes/wires out.
The nurse said that they will try to wean her off her meds tonight, maybe try to get the central line out and maybe start her with some food. My mom, John's parents and us are going to eat and then will probably go back and visit her tonight. Sorry no pics today but she wasn't in the mood.
Also, there are 2 children ahead of Lo to go up to 7C and it doesn't look like anyone is moving up there so we may end up being discharged from PCICU. We will see. Maybe tomorrow she can watch some Mickey Mouse! Until tomorrow...................


We just went in to see Lo, her blood pressures are still up and she was trying to wake up. I had to walk out seeing her coughing and in pain and there was nothing I could do to help. They are now trying to take out the breathing tube to see if that will help. Otherwise she is doing well. Lets just hope the breathing tube coming out helps.

Warning: Photos after surgery

We got to see her for just a few minutes this afternoon. She is doing great! She is on some blood pressure meds but that is all. Here are a couple of pics I took while we were there to see her and a few I took of her when we got to the hotel room (she thought the luggage rack was COOL!) I will update tomorrow as I need some sleep tonight.

Surgery

Final update: We just talked to Dr Bradley. Everything went well, she did great through surgery. He said he got as much tissue out as he could without having to replace her valve. He said it "almost" perfect. Please continue to pray for a speedy recovery and that her valve continues to grow and the tissue doesn't grow back. We are going to visit her at 4:45pm and then we are going to let her rest. She's had a hard, traumatic day. I will update with pics tonight.

Fifth update: off heart lung bypass, and finishing up. Dr Bradley will come talk to us about revision when he is finished. I will update when he talks to us!

Fourth update: still working away in OR, ECHO came in and looked and there is still some pressure across the gradient so they are trying to get more out. She remains stable and it is not uncommon for them to have to do more work.
Please keep praying for our little girl.

Third update: still working away and she continues to remain stable :) I like smiley face pages, very comforting.!

Second update: just went on heart lung bypass machine and Lorelei continues to remain very stable! God is good!

First update: still cutting through scar tissue and she is stable. Will update with our next one!

So we just let Lo go away with the Dr for surgery. She did better then I thought (thanks be to Versed). She was a little bit drunk and funny. There was a sea horse hung from the ceiling and I would twist it around and laugh and laugh. We should've brought the video camera but thats ok. We should get updates starting between 9 and 9:30 and get one every hour after that. I will try to keep this updated as best as I can. She was holding her lovie and her blankie so that was all she really needed; besides prayers. Thank you all for those! We will talk soon!

Praying

Yesterday we went to MUSC for her pre-op workup. They started with the Chest x-ray which she didn't care for at all, as John and I had to hold her down for it. Then we went and got a function ECHO, she did ok (the tech gave her a sucker) and I held her for the first part and John held her for the second part. She enjoyed the EKG, she thought it was fun that they were putting stickers on her belly and then connecting them to wires. The worst was when they drew her blood. They wrapped her up in a sheet and she screamed bloody murder but then she was good and we played for a while. We talked to several people and they all listened to her heart. She even listened to her own heart. Her surgeon's PA Jennifer put her stethoscope into Lorelei's ears and Lo put it where it was supposed to go. She then put it around her neck like the Drs do. It was too cute!

The last person we talked to was Dr. Bradley who explained everything they were going to do and all the other stuff that could happen. (Not so fun!) Then as we were waiting to get our paperwork to leave another little girl coded in there. Please pray for the family as we don't know what happened to the little girl.

So now we are having a fun weekend before we go in on Monday. She is the first case Monday morning. Her surgery starts at 7:30 and we have to be there at 5:30. I will keep the blog updated as much as I can.

On the needles, finished and a cute pic of Lo...

The first picture is of a blanket I am knitting for Lorelei and hope to have done when she comes home from surgery. I am going to work on it while we are at MUSC.

The second picture is of a shawl I started knitting ages ago and hope to finish soon too!

The third is the cute sock monkey blankie I sewed for her. I made it out of flannel and minky dot fabric. Boy do I love the minky, it is so soft!

The last picture is of my sleepy baby that fell asleep on the couch really early after her bath. Apparently day care really tuckers her out! The yellow blanket is one that John's cousin, Jennifer knitted for her and she has to have it all the time! Well, that and her lovie which is probably under the blanket, but at least we don't have to take them both to day care, YET!

This weekend we will be getting ready for surgery and John's parents, again. Hopefully this will be it because I don't know that I can take another rescheduling! I have added a new blog to the ones I read. It's about Derrick, my friends Shannon and Justin's, baby who has several CHD's and is a total cutie. Check it out!

Now that I have my own camera and John has schooled me on working it and the laptop together I will be posting more pictures, if I can remember to take my camera with me everywhere I go! Have a great weekend!

Talking

Lorelei is saying more and more words! Her favorite of course is NO! But she also says mine, Hi, Bye, Wow and if you say One, she says Two, Three! Its really cute. Of course she says Momma and Daddy! She mostly just points and grunts and we try to get her to use her words but I know its coming soon! I think that once she starts she might not stop!

We are getting ready for surgery on Sept 21st. John and I will be going with Lorelei to MUSC Friday Sept 18th for her pre-op testing where she will have another sedated ECHO. Then we will return home and wait for John's parents to come in to town. Then all of us will travel back to MUSC on Sunday to prepare for her surgery on Monday!

Coming soon will be some pics of projects I am working on and completed before my sewing machine broke. I just have to get the pictures uploaded. I am very excited about these. Have a great day everyone! :O)

Happy Anniversary John!

So today is our 5 year anniversary! I can't believe its been 5 years. John has been the most amazing husband! He cooks most every night and loves me with all of his heart! We have stood by each other through Hell on Earth and our marriage has lived through! I am so thankful for him everyday! I love you!

Update on Lorelei's surgery....

Lo's surgery has been rescheduled for Monday, Sept 21. We have to be down there Friday, Sept 18 for her pre-op. When I get better details I will let you know as I will be calling MUSC tomorrow.

The Mullen Momos

Hey all! Just wanted to let you know of another blog I am posting. It's called the Mullen Momos. Emily is my sister, Jeannette's, best friend and I have known her for 22 years (Holy Cow! I can't believe its been that long!). She is pregnant with twin girls that are in the same sac and they are called Momo twins. She is 24 weeks and 2 days pregnant with them and has entered the hospital so they can monitor her until she is at least 34 weeks. Please pray for her, her husband and her baby boy Barrett, who may be having a hard time with her not being home, he's around 20 months.

Also, I think we are ready to hit MUSC! I have gotten everything I think I need for myself, John and Lorelei. I still have to call down there to get time details from them. John's parents are coming on Friday so we may do some last minute shopping this weekend. Lola is booked at her Pet Lodge, too.

I will keep everyone updated through here, facebook, myspace, and our Carepage: LoreleiElizabeth. Carepages are wonderful! Join if you can.

Please keep us in your prayers! Have a safe and fun Labor Day weekend!