A New Day!

Liliana actually woke up yesterday appearing to be a new baby. She seemed more alert, less irritable, and definitely more herself. She has been reverting back to her old behaviors. She is holding up her hands and looking at them again, she is putting her hands together, and she has made her voice known with wonderful little cooing sounds. It is precious to listen to! Yesterday PT came to the house and today our Intervention Specialist came and they both said she still needs work but they were very happy with how well she was doing and how much she had retained given all she had been through. Our biggest hurdle definitely is getting the strength to hold her head up and getting used to being on her tummy. She hates that! Imagine how much this has boosted my confidence in her! I feel like I am getting my beautiful baby girl back and she is back and ready to learn! Yeah Liliana! Tomorrow is our big trip back to the clinic for follow-up with the cardiologist so I will keep you all posted.

Wearin' the Blue!

Life on the Homefront

Well, first let me say I am sorry I haven't posted sooner so that everyone knows that we are all right, but we have been hanging in there. I feel like I have been going nonstop. I actually feel like a 24 hour nurse. It seems like there is very little time for much else except giving meds and starting feeds for Liliana. I am so jealous of all you mommies out there that have babies that can eat from a bottle and aren't on any medications or are on very few. I just keep telling myself that it won't be forever. It could be worse, she could have came home on oxygen. Just like a mom worries about their child I am very worried about Lily. She seems so delayed in all areas. She can't eat like a normal child. Her feedings through the NG tube have been both good and bad. At least once a day she starts gagging during her feed and spits up both mucos and formula. She also was constipated for two days and I ended up having to give her an enema to help her go. I just feel so bad for her, she has been through so much! She doesn't really smile, in fact she has been acting almost paranoid. Every little thing scares her. I mean even putting her on the changing table of my pack in play scares her and she cries. She does that same thing when being picked up sometimes. When she is sitting in the bouncy seat and it starts to bounce, sometimes she cries and throws her arms out to the side like she is going to fall. I also feel like she doesn't really know me because for the majority of the 3 months she was in the hospital I was not able to hold her. I feel like she totally lost that need for bonding with others, especially me her mommy. I hold her and it's like she is looking at me as if I am a stranger. When I talk to her and try to calm her down she usually cries or gives me her pouting lip. It is so heartbreaking. We had our first PT visit last Wednesday, and we have another one today. She is so low. She can't hold her head up very well at all and she absolutely hates being on her belly. She is almost 9 months old folks! I read other peoples blogs and their babies are doing so much better than Liliana. Some of them also went through open-heart surgeries. It just has to get better, right? I just want her to be at least a little bit further along than she is. I am very concerned about her eyes as well. They have improved since she is basically off of the heavy duty narcotics she was on but she still has issues. I wonder just how far she really can see? They did a bedside exam of her when she was in the hospital and told us that she can see but that they would need to do further testing in their office. I need to get her in there asap I guess. Also the neurologists examined her and said that she doesn't appear to have a neurological disorder but the moving or roving eye movements that she has are probably nystagnos (sp?). So I guess that was good news, but I feel like it is always something. We go back to the clinic to the cardiologist on Friday and I definitely have to discuss all the issues we are having with them. We just need a lot of prayers and support to get through this one day at a time. I will keep everyone posted as much as I am able. More later...

I'm Goin Home!

Yesterday was the day that we had prayed for, waited for, longed for, for the last three months! It had been 105 days to be exact! Man, I can't believe it now looking back on everything. Liliana is doing great! She looks healthy, acts healthy, is eating healthy, and just all around is more and more like a normal healthy baby. We are so thankful! God is so faithful! Yes, we had to endure a lot but I feel like it has made me a better person. I feel like I have a much different outlook on life and God has really worked on my heart. I feel like I truly have connected with so many families that have either gone through what we did with Lily or who were going to go through what we went through. It gave me such strength and joy inside to be able to advocate for downs children with congenital heart defects. It is a very scary and life threatening situation for these children and for their families. Any type of support system that any of us have is critical during this time. On the days when I thought I just couldn't go on someone would cross my path with a thoughtful gesture, words of encouragement, or an ear to listen. God says that he will supply all our needs according to his riches in glory. He took care of us financially during this time of our lives and we know he will continue to take care of us now that Liliana is home. We have been so blessed and we are so thankful for all of the great and wonderful things that happened in our lives during this time. I dedicate the song "Home" by Chris Daughtry to you because I think it says it all right now. Though some of the lyrics in the song don't make sense in regards to our situation most do apply especially about the places and faces getting old (that would be the Cleveland Clinic), and the part about loving the life he chose for me. We love the fact that we were chosen to be Liliana's parents even though it is a big responsibility we have been able to meet the challenge. We now can close one chapter of our lives and start a new one full of fun, excitement, hope, peace, and family times together watching our little angel from heaven grow up into the beautiful woman that God intended her to be. We love you Liliana and we always will!

The Results Are In!

Took Gwynny back to the doctor today and found out she has a staph infection and a double ear infection. How in the world she got the staph infection is beyond me. We actually think she probably got it at the hospital while visiting. She is now on a different antibiotic for the staph infection and continues on the other for the ear infections. It's crazy! The positive side of everything is that Liliana continues to do well and after talking to the doctors at the clinic she will be able to come home tomorrow. Well, it sure is hard to be optimistic anymore. I am really sick and tired of all the disappointment. It seems like we just keep getting handed more and more junk on our plate. We really have had enough. I know that God knows how much we can handle but we have had more than our share of heartache. Well, I better get going to prepare for tomorrow. So much to do...

Hug Me, Hold Me, Kiss Me!

When I arrived at the hospital today Liliana was sleeping. She was having a little trouble with her oxygen dropping so the resident came in and checked her out but she just is going into a very deep sleep. The nursing assistant and I got her up and gave her a bath. She hated that! We washed her blond head of hair and I put two little clips in it. She looks soooo cute! We then put on her red onesie from Aunt Libby that says, "Hug Me, Hold Me, Kiss Me!" Everyone that has come in to see her has commented on how cute she looks. So then I had to have a photo shoot. She was pretty worn out by the time I was taking her picture so that is why her mouth is wide open and she looks a little out of it. Can't wait to bring you home so we can do just what your shirt says, "Hug You, Hold You, and Kiss You!"

Our Valentine Couch Potatoe

Anyone that has been following my blog knows that you never know what is going to happen from one day to another with the Rees clan. Today was no exception. Let me start out by saying that Liliana is doing very well and is just waiting to come home. We can't complain. On the other hand, Gwynny continues to struggle. She has been sick all week with a cough and off and on fevers. We took her to the doctor on Thursday and they put her on an antibiotic just to be safe and also because Liliana is expected to come home soon. The doctor suspected it was just a virus but sent her to get a chest x-ray just to be safe which came back just fine. Thank God! Upon waking today Gwynny came to Bill and I crying complaining about her bottom hurting. Long story short, she has a huge red spot on her one butt cheek and the center is almost purplish red. It definitely looked like some type of infection to us. Bill and I were very concerned. I phoned the pediatrician as soon as they opened and they were able to get her in around 10am. The doctor took a look at it and put her on Benedryl for the allergic reaction part and a different antibiotic for skin infections. She also did a culture and we dropped it off at the lab so they can determine exactly what she has. We have to wait till Monday for the results of that. Depending on what we find out from that will determine whether or not Liliana can come home at the beginning of the week. The doctor kept asking us if she got burned by bath water and we assured her that that did not happen. I swear she made us feel like such horribly bad parents, like she was going to call children's services on us or something. Anyways, she then thought that Gwynny probably got bit by something, like a spider. I'm thinking what in the world would be alive and lurking around mid February? If anyone has any input on that please feel free to leave your comments. We were so bummed! I know that God has a reason for everything that happens so I am just trusting that his will be done through this whole thing. We were so excited about spending Valentine's Day weekend together as a family for the first time. Well, it's not going to happen in 2009. So, Bill is at the hospital visiting with our little valentine angel and I am at home taking care of our other coach potatoe valentine. Hopefully, we will be able to at least order some take-out and enjoy a quiet evening at home. Happy Valentine's Day everyone and God Bless you! Thanks again for all your love and support as we have gone through this difficult time in our lives.

Who Threw a Monkey Wrench in the Plan?

I will tell you who threw a monkey wrench in the plan...Gwynny.  Yes, Gwynny is the reason that Liliana is not coming home today.  After telling the doctor and nursing staff about Gwynny having a terrible cough and fever they decided that if Liliana were to go home today that it could be detrimental to her health.  I totally agree with that but I am still disappointed.  Another weekend to spend here at the hospital...WhooHoo!   I mean that sarcastically.   Happy Valentines Day!  Well, I won't have a pity party for myself.  Today was pretty uneventful.  Since Gwynny wasn't feeling well I stayed home with her so Bill wouldn't have to take another day off from work.  We want to try to save his vacation time for the day she comes home and hopefully to take a family vacation this summer.  Bill is convinced that all his vacation time will have to be spent on taking care of sick kids.  I wish he wasn't so negative sometimes about it.  I came up to hospital this evening to see our little angel.  She is doing great!  Looking good and eating good too!  I can't wait till I can take her home and put her to bed in her own crib.  I am bursting with anxiety for that day to finally come.  I hope it will be soon.  

No More O2!

That's right! She is off the oxygen support! Strange story behind that one...the nurse that had her Sunday night into Monday morning weened her off the 0.1 liter she was on over a 2 hour period early Monday morning. When I came in on Monday she still had the nasal cannula in her nose so I assumed she was still on the O2. As it turns out, they left the cannula in just in case she would need it turned back on, and the O2 was off the entire day Monday and the day nurse never said a word. The same nurse that had her Sunday into Monday was back on Monday into Tuesday so I talked to her before I left that evening. She told me about how she had weened her and she was shocked when I told her she was still on the 0.1 liter. She said, "You're kidding me! I weened her off it last night!" Turns out that the oxygen really was off the entire day Monday so she was officially weened! Talk about a lack of communication. I often wonder about this side of the hospital. Anyways I am thrilled beyond belief that she is off the O2! We will not have to worry about where to store the extra tanks and all the other safety precautions that you have to remember when we go home. Yeah! Oh! and did I mention that Liliana is scheduled to come home this Friday! Yep! I didn't stutter Friday! We can't say that too loud around Lily though so she continues to stay on track. LOL! More later...

Don't Scare Me Like That!

Last night we had a bit of a scare. I was out with my friends at a Scrapbooking Crop and I called the hospital around 8:30pm to check in on Liliana. The nurse told me that she was ok, but really fussy for some reason. We talked for a few minutes more and I asked her what Lily's heart rate was. She said in the 150's. Typically when Liliana's heart rate starts to creep up it means she is about to spike a temperature. I asked the nurse if they had taken her temp lately. They just so happened to be doing her vitals when I called and I requested they take her temperature rectally. Sure enough she had a temperature of 38.9 (can't remember what that is converted but I know that it is high). The nurse was like, "Yep Mom you were right." What do they always say about mothers...Mom always knows best. Well, she told me that they would give her some tylenol and not to worry about coming up because they had plenty of staff here to sit in with her and just to call back in about an hour. So I went back to my scrapbooking a bit worried but continued on until it was about 10pm. This time when I called the nurse told me that she was settled down and asleep. Ahhh! That sure eased my mind, but being a mother I just needed to call back one more time before I went to bed so after I left the crop I called again around 11:15pm in route home. They say three times is a charm, well it wasn't a charm but she definitely was not a happy camper. The nurse told me she was stable but that they had to increase her oxygen and that she was once again irritable and her heart rate and breathing were slightly elevated. I decided after going home and attempting to talk to my half asleep hubby to come up to the hospital. When I arrived she was asleep. She slept most of the night, but I didn't. To make a long story short she had received two different vaccines over the past two days and the docs and nurses are thinking that she probably had a reaction to them. They don't want to rule anything out again so they sent off cultures again just to be safe. She also has a very swollen little thigh were she received the shots so they are using hot and cold packs to help bring down the swelling. They turned off her feeds last night and put her back on IV fluids but this morning they are putting her back on NG feeds continuous for today. Wheee! That is it in a nutshell! What a whirlwind ride this entire journey has been. At least I think we are still headed in the right direction.

Goin on a Field Trip!

Today I came in early to go with Liliana to her swallow study. She failed it unfortunately but I kind of figured she would. However, she was able to eat some applesauce because it's pureed. She loved it! It was so neat watching her gobble it down. When she was tested with thinner liquids in the bottle that was when she had some trouble. So the docs will keep her nothing by mouth for now, though she may be able to take some Stage 2 baby foods by mouth. They haven't completely decided yet. She still is having trouble with that 0.1 liter of oxygen, but we will keep trying. On the other hand, we went for an adventure today in the stroller and got to visit our PICU friends. Yeah! The nurses really enjoyed seeing her again and raved about how good she looks! Dr. Dan thought she looked good too! We then ventured down to M33 by the big fish tank and I pointed out all the cool fish down there to Lily! She seemed like she was actually trying to look at them a little bit. Our trip wasn't too long but it was nice to get out of the room and show her off a bit. Hopefully in the days to come we can take her out again and maybe a little farther.

On the Road Again...The Road to Recovery that is!

What a day! Liliana has had a busy day! I arrived here today and my friend Cindy and her daughter came up to visit and have lunch. I also got to see Patti and Marissa that we met last week. Boy, does Marissa look great! I spoke with the Nurse Practitioner and Infectious Disease doctors and they told me that Lily had a positive culture from her urine but they do not know yet which bacteria it is. They have already been treating her with antibiotics so it should cover whatever it is that she has. She started bolis (stomach) feeds today and so far she is doing ok when they initially run the feed but then about an hour later she did throw up a bit but it was mostly mucos. She also threw up her NG tube so the nurse had to place another one. She is in the process of taking her second NG feed right now so we will see how it goes. She also went to have an echo done today but no results back yet on that one. They will continue to try and ween her oxygen so that hopefully she will not have to come home with it. She passed her gastric study that she had earlier this week that is why they are feeding her with an NG again but tomorrow she will go for a swallowing study to see if she could begin taking very small amounts of formula a couple times a day. The bottom line is that she is really making good progress and they are talking about letting us take her home sometime next week. Yeah! I hope it really happens because this journey we have been on has been a very, very long one and I am ready to have it come to an end and be home. I'm sure that Liliana is ready to come home too. As Dorothy said in the Wizard of Oz, "There's no place like home!" and she was right.

Well, we're movin on up, movin on up! To the top!...

That's right folks! We are moving to Bed space 19 which is a private room. Why you ask? Because our little angel may be contagious. She had several diahrea diapers last night and this morning so they cultured her stool to make sure that she doesn't have Rota virus or another virus that I can't remember the name. Anyways, they don't want her to contaminate other patients but what kills me is they decided to do all this this morning and she has still been in pod 3 all day so if she is contagious she already has been spreading around her germs. Daaaaaa! I often wonder why they do things the way they do. So I am waiting here with Liliana hoping they will move us soon before it gets too late. Otherwise, Liliana had her stomach study again today and passed it with flying colors! Yeah! She will now be started on NG feeds instead of ND feeds and then eventually when she tolerates that they will put her back on boulic (larger amounts all at once) feeds before she comes home. We are thrilled! So slowly but surely she is making great progress. The downside of the whole moving thing is kind of sad because we actually have gotten to know our neighbors on the right and they are really nice people. Also there is no guarantee that Liliana will stay in the private room. She may eventually be moved back to the pods and I hope she is not in a different set of pods with new neighbors. We'll see what happens.