If at first you don't succeed, try, try, again...

That's right folks! Strike one, strike two, strike three times is a charm! That's my version of that saying or at least I hope three times is a charm. Let me explain. We went on our journey to the new improved part of the clinic at approximately 2:15pm to make our way over to Radiology to have Liliana's gastric study done. The total time of the test was about 1 hour once they got her suited up in her little vest to protect her from the radiation. She was such a good girl during the procedure. She didn't make a sound. She just laid there and chilled out. When all was said and done they will have to repeat the test again on Monday. They calm that the NG tube that they put in today was placed too far down in her stomach and may actually have been in her small intestine so they didn't get good results. They did say the fact that the first time around they put the solution in her corpac could actually give them some good information they could use for the study so I guess it wasn't all in vain. Poor Liliana, she just can't seem to get a break! Now we are back in her room and she got a diaper change, a dressing change on her line in her leg, and they removed the NG tube until Monday when she goes back for the study again. Wheww! It has certainly been a busy afternoon here at the clinic. I hope it is a peaceful night.

ND or NG tube? That is the question.

Hello All! Got here around noon today and Liliana was chillin in her crib. Heart rate looks good, oxygen saturation looks good, and no temperatures. Yeah! However, it always seems like there's always a but. She was taken down to have her gastric study done this morning and whomever was working down in Radiology put the formula/dye down the wrong tube. How you may say did that happen? Well, this morning our nurse put an NG (stomach tube) in the nostril that did not have the corpac in. Well, apparently the person doing the procedure did not know the difference and thus you know what happened. The resident came in and apologized over and over again. So, the new plan of the day is for Liliana to go back at 2pm at which that time I will be going down with her to make sure they put the solution in the right tube. Can you believe it? Poor thing can't eat anything until after the test is over. More about that later...

Let it Snow, Let it Snow, Let it Snow...

Wow! Have we been hammered with snow today! Thank Goodness I decided to spend the night and all day here today because it would have taken me 2 hours to get home for sure. Needless to say, it wasn't anything like the night before Christmas here in M40-03. You know the part where not a creature was stirring not even a mouse. There was a lot of stirring going on here between the patients whining on either side of Lily to the blood pressure cuff refusing to take her blood pressure and the nurse anxiously trying for like 30 minutes with no success. That was around 3Am. Oh, and did I add that they decided to weigh her then since she was awake. I got a lot of broken up sleep, though one of the nurse pratitioners came in and told me that she stopped by really early and Liliana was sleeping soundly and so was I. I bet I was snoring. LOL! Well I will stop my whining. Bill called this morning to tell me that Gwynny had a bit of a rough night. I took her to the pediatrician yesterday and found out she has an ear infection. Bummer! Well she gave us a really strong anti-biotic and hopefully that will knock anything out before our little lumpkin comes home. No word on when that will be. They want to do a gastric study on her to see how her digestive tract is working and whether or not she is emptying her food from her belly. They also would like to transition her from the ND (Corpac tube) to an NG (Stomach)tube. She has to be able to tolerate feeds again in her tummy so we will have to be patient and wait it out. I have made my requests very clear here so I am hoping that they continue to adhere to my wishes because if all goes well I will be at home in my bed tonight and Liliana will be asleep dreaming sweet, peaceful dreams.

On the Road Again...

Here I sit so downhearted, waiting to leave the place where everything started. Everyone in the PICU has been so great, but now it's time to graduate. A few more hours and away we will go, off to M40 to the pods that blow. The accomodations may not be great, but we'll make the best of it anyways. It's one step closer to Liliana coming home, to laughter, and good times, oh the memories we'll hold. We've made lots of friends that we'll never forget. We'll come back to see them on that you can bet. It's a happy, but sad time. A lonely, but glad time. We will miss our PICU nurses and docs but we will not forget how they helped us a lot. So off we go to the Pods in a rush, please get us home soon before our brains turn to mush. LOL! How'd you like my poem? Hee Hee! We are actually in Pod #3 and I made sure that they put us in one where I could at least see the tv from the couch. I plan to spend more time here if I have to because I want to make sure we do not have a repeat of what happened December 1st. I have insisted that some of the nurses that I am not too fond of not take care of Lily and they were really good about it. I also know what I can do if I have any issues with any of her care and I want to have a PICU nurse or resident check her out. This has been a big relief to me since last time no one said anything about. Strange. Well, on another note Lilians looks great! She is holding her own both with her oxygen and her heart rate. She shows no signs of distress. They increased her formula to 30 calories per ounce and she has been tolerating fine. So hopefully this will be our last stop before going home. Thank God!

One More Day in Paridise

Today has been an interesting day so far. Arrived here at the hospital around 12:30pm and Liliana was bright eyed and bushy tailed. She is looking very good these days. They have completely turned off her milrinone (heart med) and they want to watch her at least 24 hours to make sure that all is well. The plan is she will graduate to the Step-Down unit tomorrow as long as she continues to do well all day and night. She will be put on a strict med regimen to ween her off the heavy duty drugs they had her on. That regimen will have to be followed even when she eventually goes home. I came here today thinking that she would be moved because of all the talk yesterday but we get to stay one more day. As one of the nurse's here put it, it is bittersweet. That is a good way to explain it because the wonderful nurses and doctors here at the PICU have become like family to us. I wish she could just graduate from here to home but you can't always get what you want. On the other hand going to the Step-Down is just one step closer to going home.

How Does God Feed You?

Pastor Dwight gave an interesting sermon this past Sunday and I have been thinking about it a lot this week. How does God feed me? I think that God has definitely been feeding me through other people's kindness, generosity, and prayers throughout this whole process with Liliana. Every kind word, every kind gesture, or act that anyone has performed has given me the strength to go on. People ask me "How do you do it?" "I sure couldn't" I tell them that when it's your child involved you find a way to get through things. God gives you the strength to carry on when you feel like giving up and throwing in the towel. He says he will never leave us nor forsake us. It seems like whenever I have one of those moments when I want to start crying and just want to get as far away from here as possible someone crosses my path that day and either says or does something that let's me know that things are going to be alright. I also feel like I have become somewhat of an advocate for parents with children that have ds and a congenital heart defect. I have met so many wonderful families through my blog and through the Ds Northeast Ohio group. Some of the families I have met initially contacted me via email and wanted to know about the clinic and the surgeons and just what to expect from it all. I hope that talking about my experiences with others has helped feed them spiritually as much as it feeds me spiritually. I never dreamed that this experience would get this intense, but I know that living through all this has not only made me a stronger person spiritually it has helped me to look at life in a whole different way and cherish each and every day that I have here on earth with my family and friends.

All Dressed Up and No Place To Go!

Yesterday Liliana had a pretty good day and today she looks good too. Her stats continue to look good with heart rate in the 130's - 140's, oxygen in the 90's, and blood pressure in the 50's and 60's. Her biggest obstacle has been the drug withdrawal. You figure she has been on morphine for nearly 3 months and they have to start the weening process which involves a load of other drugs. She is also not too fond of her cannula for oxygen and her corpack (feeding tube). When she gets a hold of those puppies it's like a death grip! She wants those things out of there! She was so restless in the evening yesterday that I stayed with her later to try and help the nurse get her to relax and go to sleep. When I called back up at my usual nightly calling time (around 10pm) Amanda our nurse told me that she was quiet and finally fell asleep. She has been sleeping about 8 hours each night sometimes waking up briefly and then going right back to sleep. I am so happy because I really want to get her back to her usual sleeping through the night like she did before coming in here. She also is on the 24 calorie per ounce formula to help put some more baby fat on those bones! LOL! She must be having some wild dreams because she is very squirmy and occassionally she starts whining like she is going to start crying. I really have a good feeling about this time with her being extubated. Hopefully our little angel will be home before Valentine's Day!

Ooops I did it again!

Man, can we ever catch a break! Liliana has looked great all afternoon and now she spiked a temperature again so the nurses are back in here culturing everything. Dr. Goldfarb the infectious disease doctor came by and at first she said she was really pleased with how she looked until our nurse Steph told the docs that she had a temperature of 38.8 axillary. Bummer! Back to square one! Hopefully it's just from the trauma of everything besides the fact that she has been extremely active all afternoon like a little cheerleader! Well, I am hanging onto the fact that she looks good and her stats look good as well. It just has to keep getting better.

Free At Last!

Well, today was a glorious day for Liliana! When I arrived at the hospital this morning I was told that they would definitely be extubating (removing the ventilator) today! So far she is doing really good! Even Dr. Mc'Hugh came in and said, "She looks great!" He then jokingly said, "It's all me!" Ha Ha! Needless to say we are ecstatic! We are crossing our fingers that she continues to do well off the vent and makes tiny steps in the right direction. Dr. Mc'Hugh and Davis both assured me that nothing will be changed with her medications right now. They also have her on high flow oxygen for support. They want to give her the best chance possible so they don't want to push her too fast. That is completely fine with me. When she was pushed too fast before she failed. Daddy and Gwynny will be coming up later to help celebrate with me! We also got a visit from Kathie C. which was unexpected surprise! Yeah Lily! We are so happy we are getting our baby girl back. It has been a long time coming.

Anticipation!

Today was an eventful day at the PICU. Got to see baby Bayla in her cute little hat her sissy made for her, and I got to meet little Aiden who also had his surgery this week. Both of them are doing really well so maybe some of their good fortune will rub off on Liliana. Lily had a good day today. No fevers, (knock on wood), no positive cultures (knock on wood), and she is tolerating being weened from the vent little by little. Her color looks good and she is tolerating her feeds and they even were able to go up a little on those. Now for the plan...the plan is to try to extubate her on either Monday or Tuesday if her lungs look ok and she does not spike a temperature, or grow any more positive cultures. As the Nurse Practitioner told me, "We want to give Liliana the best chance possible of making it when she gets off the vent. This is why we are trying to dry her out as best we can before we try." We are praying that she continues to stay stable. She really needs to get off that 'ol ventilator! She has been on that thing since December 1st! Can you believe it! Time flies and I feel like it is moving along and I am missing out on the best days of my babies life! The time when you want to hold and play with them. The time when you want to dress them up cute and have a photo shoot or take them out and show them off proudly. It really stinks and it makes me feel very sad when I think about it for very long. Well, for now I will just settle for holding her whenever the nurses are willing and able to let me when I visit Lily at the PICU. I am most happy that my little girl is alive and lives on to fight another day!

It's Positive!

When I arrived at the clinic today I was told that Liliana's spetum (sp?) culture came back positive for pneumonia. I am sooo bummed! She already had pneumonia once in here. That's how things tend to go in this place. After you're here for so long and on a ventilator you can catch a lot of things. Everyone keeps saying that she looks good though. Her heartrate has been pretty good and her blood pressure and oxygen have been good as well. So now it will be at least 7-10 days of treatment with anti-biotics and then after that they will try weening her off the ventilator again in hopes of extubating her (getting her off the vent) to see how she does. She has so much junk in her lungs. On a different note...a little friend arrived here at the clinic today to have her heart surgery. A friend that I met here at the hospital that brought dinner up for my husband and I brought her daughter in for her heart surgery today. I can't wait till Liliana is well enought to have a play date with Bayla. I also had the chance to talk to Shosana, Bayla's mom and catch up on what has been going on and give them some support as they were waiting for updates on their little sweetheart. I know exactly how that feels and understand some of the emotions they were going through today because been there done that. Well, I also went up on the Rooftop Pavilion which is located in the new building and got a 5 minute chair massage which was very relaxing. I will definitley wander up there again in the future. It continues to snow and be very cold here in C-town which also makes it hard to get up in the morning and out the door. It also makes it hard to commute back and forth to the hospital. I'm hoping that things start going in the right direction again and soon!

It's a Mystery

Well, today we had a photo shoot with a group called "Flashes of Hope." They are a non-profit organization that takes pictures of chronically ill patients. Though Liliana does not fall into that category necessarily the social worker here at the hospital thought that we may be interested in participating in something like this because she has been here so long. They had me pose with Lily, leaning over the bed and putting my face by hers. They also did pics of me holding her little hand. It was so sweet! I hope that they come out good. The nurses here say that they do a good job so we will have to wait till they come in the mail. Lily had a much better day today than yesterday. Her heart rate has been much lower today as is her blood pressure. They have successfully been weening her off of the vent so if everything goes well they may extubate her tomorrow sometime. I'm not getting my hopes up too high though. One thing that was interesting was when the surgeon Dr. Mummtaz came in today and told us that her recovery has been such a mystery to them. Why does she do so well right after surgery and then all of the sudden everything goes bad? They can't understand why her mitral valve starts to leak so badly. They are still hoping that all will go well after she comes off the vent because even though the valve may be leaking more she still may be able to tolerate without having to go in and give her a replacement. We are still crossing our fingers that the echo reading was a fluke and that her valve is still ok, since she had a great day today!

Thank You Everyone! We Love You!

I would like to start out today by saying "Thank You" so much to everyone that has made a donation to Liliana, or helped out in one way or another. We have been so fortunate to have cash donations, help with childcare for Gwyneth, restaurant gift cards, boxes of food, and gas cards. The generosity of so many people has just blown my mind! We are so blessed and it has helped restore my faith in the fact that God will supply all my needs. We also are thankful for all those that have faithfully been praying for Liliana. Those faithful prayer warriors out there, and you know who you are, should be commended for your willingness and diligence in praying for Liliana on a regular basis. God recognizes your faithfulness and we do too! Thank you! Now about Liliana...I got to the hospital a little late today because I had to take care of a few errands and the nurse said that Liliana was beside herself this morning. Just crying and wiggling and carrying on. She had to give her some chloral to calm her down. Part of the problem is they are trying to ween her off of the morphine and she obviously has become a bit addicted to it since she has been in here so long. They have not changed any of her vent settings, but they did remove her folly (sp?) catheter. She has been having problems with her belly swelling up and not tolerating her feeds. They have stopped and started her feeds several times over the past few days. They are not sure exactly why she is having so much trouble but they have put her on a med called regulin (sp?) to help her digestive tract move things along. All her blood cultures for the infection continue to come back negative so we are thrilled (knock on wood)! They were even able to take her off of some of her antibiotics since the cultures have been coming back negative. YEAH! I hope I won't have to eat my words since I am posting this on my blog. The surgeon Dr. Mavourdis was in today to see her and so was our favorite cardiologist Dr. Qureshi. Dr. M said that her heart still looks good we just have to get her to start tolerating her feeds. Dr. Q pretty much said the same he also added that they would be checking her thyroid as well, to make sure everything is working ok because that could be contributing to her digestive problems. All in all Liliana is making progress slowly, but surely.

A New Line, A Fresh Start.

On New Year's Eve morning I received a call from the PICU that Dr. Mummtaz felt that Liliana's line they just put in on Friday, December 26th needed to come out because she had spiked a fever again overnight. There was some question about taking it out on the 30th because she started to have a red line appear on her right thigh along the surface of where the line was put in. They called to get our permission. This time they decided to take her into the OR to put in the new line where as the last one they did right in her room in the PICU. Over the last few days she has gradually been doing better. She is still having fevers but not as frequently. They started her feeds back up and she is tolerating well. She has been having some trouble with her blood pressure and they have had to turn her Nipride on and off over the past week as they are trying to regulate it. As of today it is off. She has been pooping regularly even though her belly looks like a Buddha's. LOL! The staff does not seem too concerned. In fact she has had some really BIG poops that had the nurses giving her a bath to get her cleaned up. The nurses love to make bows and put them in her hair. It cracks me up cause when I come in each day I never know what they may have in her hair for the day. So far none of the cultures have come back positive so we will take that and continue to take things slow and in baby steps. Things just have to continue to get better.