Heart Surgery

We have had a very eventful day. This morning around 8:15 am I received a phone call from the nurse that was taking care of Lilly. She said they had just given her orders that Lilly would be going to surgery today. My heart sank. The doctors decided to repair the arch in Lily's heart. It was too small and would not allow blood to flow through it very well. The doctor had to cut the small portion of the arch out and basically reconstruct the arch with the remaining pieces. Just remember that Lilly's heart is the size of a walnut. WOW!!!! We had not expected the surgery to happen till later in the week. We made it to the hospital just in time to wait. But during this waiting time I was able to hold Lilly. We snuggled again for 2 hours. They came in at 12:30pm and said it was time to go to surgery. We were able to walk with Lilly to the surgery entrance where Grandma, Grandpa, Grammy, Grampy, Mom and Dad all kissed and said a temporary Goodbye. Lilly’s surgery went really fast. They told us the surgery would take 3 to 5 hours. Within two hours of us walking out of the surgery wing they told us she was done and being brought back upstairs. The doctor said everything went well and we were playing another wait and see game. While they were in surgery they placed two more lines. One line is in her right wrist this helps monitor blood pressures and blood gases. The second Line is in her neck artery. I have no clue what this line does. Lilly has a cut about 6 inches long on her left side/back. Hopefully the scar will fade with time. Lilly also has chest tubes in her side to help with drain edge. These will be removed within the next few weeks. Later tonight they will remove the IV line in her leg and the urine cath.

As I am sitting in the hospital room writing this Lilly is beginning to stir. If you watch carefully she is using her ventilator tube as a pacifier. Whenever the nurse touches, moves, or changes Lilly’s diaper she stirs slightly and sets her bells and whistles off telling everyone in the unit don’t mess with her.

Our next goal is to get Lilly off of the ventilator.

Thanks you again for your prayers and sweet thoughts. A very special Thank you to everybody that helped us today with our other children and everything else.

Monday August 30th

It has been a wonderful day!!!! I got to hold Lilly for two hours even though she was still hooked up to the ventilator. The nurse asked me when I walked into her room this morning if I was ready to hold my baby again after not being able to for three days. I started crying and said “Yes, Please!!!” It took three of us (nurse, me, and respiratory therapist) to move Lilly into my arms. Once she was there the peace I felt was over whelming. I know Lilly felt it too because the nurse commented on how she finally looked like she was at peace. Lilly did not trip her alarms at all during the time we snuggled together. While I was holding her I massaged her leg because it was so hard and swollen from poor circulation. I was able to get the hardness out and tickle her feet.

Lilly continues to be on the ventilator. They have attempted several times to wean her but she is not ready yet. Other than being on the ventilator she is doing very well. Hopefully tomorrow we will get a surgery date or at least a plan of action for the next week.

Thank you again for your prayers.

First Heart Procedure

It’s Saturday morning and I am sitting here in Baby Lilly’s hospital room. We had a very eventful and emotional day yesterday. Grandma, Grandpa, and Auntie Jeri and I arrived at the hospital at 6am Friday morning. I was very anxious to hold Lilly before she went into her procedure. It was the hardest thing when they came into the room and told me it was time to go downstairs. I struggled letting them take Lilly but knew this is what we needed to do to help her. We were able to walk with Lilly up into Cath Lab doors. When they told us where to go to wait my heart sank as I walked away from my baby. Josh joined me at the hospital about 3 hours into the waiting process. The procedure was to take 3 hours but ended up taking 5 hours. The good news is they got some pictures of Lilly’s heart and ballooned her aorta valve. We spoke with the doctor and he said everything went pretty well. Unfortunately they had to put her on a ventilator to help her breathing during the procedure. Although I knew she would come out of surgery with a breathing tube actually seeing her with it was enough to break my heart. Lilly did wonderful all day Friday and they began to wean her off of the ventilator. They told us she probably would not wake up till Saturday afternoon but she was squirming around by late afternoon. Unfortunately towards the evening she struggled to keep her blood pressure stable. After a review of her blood gases they decided we need to give her blood to help stabilize her blood pressure. Lilly also got an ecco cardiogram where they check to see if there was any fluid on the heart and to see if the valve was staying open. They said everything looked great and hopefully the valve would stay open once she started moving around more. It just another wait and see game.

When I arrived this morning Lilly’s blood gases looked great and they have started to wean her off the ventilator again. They have removed the belly button line and also the PIK line. She is receiving her meds through a line that they have put in her leg. Right now she is sleeping with her ant eater beanie baby. So cute.

On Tuesday the medical team will discuss the pictures and measurements they took during the Cath Lab. We are hoping that they will tell us our next step either sometime Tuesday or Wednesday.

Thank you so much for all the support we have received. We are so grateful for everything everybody has done for our family. Thank you for the prayers and fasting that many people have done for our family.

We are sorry that is has been a few days since we updated the blog. Josh turned the duty back over to me and well I just run out of time and steam by the end of the day. Lilly’s heart cath was canceled on Monday due to a possible infection in her PIK line. After they took the dressing off of her arm it appears only to be a skin infection but extremely close to the PIK line entrance. They are continuing to run labs to make sure that her body is not infected and she will be ready to handle to the procedure. Lilly continue to struggle to breathe so they started her on a nasal canula with room air being pumped into her system to help her not have to work so hard for air. She also had a feeding tube inserted into her nose and down into the tummy. This pumps breast milk into her tummy.

I got to hold Lilly yesterday for two hours. It brings my soul peace to have my baby in my arms. She slept peacefully during the time we had together. Lilly loves her pacifier and Whooshing bear (makes the sound of the womb). Lilly HATES diapers changes and vital checks. This is the only time she makes a peep. And it is a very loud peep. You can tell she is tired of being poked and jostled.

Thank you so much for the prayers, sweet thoughts, gifts, and everything else that people have done for our family. We feel so blessed to have this much love and support. Please continue to pray. We love you all.

Kim

It was another beautiful day with our Sweet Lilly. We spent the afternoon with Lilly up at the hospital. When we arrived the nurse was just getting ready to feed Lilly her 4cc of milk. As we waited for the nurse to prepare the bottle we talked to her and told we were there. She opened her eyes only when I would walk away. I still have not got a really good look at her eyes. She loves to tease her mother. The nurse and I worked together to feed her but she had a hard time latching onto the bottle. She also was unsure of the milk and kept spitting it out. We eventually got the bottle empty but I think most of it ended up under her chin. At Lilly’s next feeding she attacked the bottle and downed the 4cc of milk in no time. Guess she figured out that what is in the bottle is something yummy. I also got another chance to hold Lilly. I have not been able to hold her since Thursday and I know that this next week’s schedule will not provide opportunities as she will need to rest. She hated being moved but calmed once she was in my arms. It was hard to give her back after an hour of snuggling together. This week will be another big week for Lilly. Tomorrow morning at 9am she will have a heart cath/balloon procedure. This is when they go through a major artery in the leg up into Lilly’s heart. They will try to expand “balloon” the aortic valve. While they are in there they will take pictures of her heart to determine what procedure should be next. If another surgery is needed it will happen later this week. The heart cath/ balloon procedure will take about 3 hours. I will update as soon as I get information from the doctors.

Thank you so much for all of the prayers and fasting for our sweet Lilly. We have seen so many miracles this week. We are so grateful for everyday that we have with Lilly. Please continue to pray for her and our family.

Kim

8/21/2010

Lilly was moved to the Cardiac Unit last night at 11pm. She will stay in the Cardiac Unit until she leaves the hospital. The Cardiac Unit is very nice. Lilly has her own room where visitors are more than welcome to come see her. Lilly also got a Pick Line in her left arm and they removed a line out of her belly button.

Kim was release from the hospital today. She was glad to be able to be home and see her other kids but misses being so close to Lilly. Lilly is doing well and is getting rest for her procedure on Monday. We all went and visited Lilly this evening and will be back tomorrow to see her again. Thanks for checking in on her and we will keep you posted as we get more information.

Lilly 8/20/2010

Its 11:50am and we just heard some great news from the NICU Dr. They did a dye test on her kidneys and the results are in. Her right kidney(the bad one) extracted 5% of the dye and her left kidney extracted 95% of the dye. So she looks good on the kidney aspect and now they are going to transfer her to the cardiac unit. This is really a miracle that her kidney is doing fine. She doesn't have anything blocking the line in her left kidney as they thought she did. They said that if there was anything between the kidney and her bladder it is now gone.
So either tonight or tomorrow morning they are going to transfer Lilly to the Cardiac Unit and she will be there the remainder of the time she is here in the hospital. On Monday they are going to do a cardiac catheterization. They are going to balloon her aortic coarctation and also take pictures of her mitral valve and see how bad it is fused together.
Kim will either be release tonight or tomorrow morning from the hospital. Baby Lilly is a fighter and is proving she is here for a reason to these Dr.'s. Again thank you all for your prayer and we ask that you continue to pour your prayer toward baby Lilly.

8/19/2010 update

It is 3:45pm and we haven't heard anything new yet. Lilly did have her Kidney Function test this morning at 10:30am. We have been waiting for the results but we were just told that we probably wouldn't hear anything til tomorrow with her kidneys. We also haven't heard anything from the heart surgeon and what procedure they are going to do for Lilly. So we are now waiting for any information from both divisions and what they are going to do.

Last night was the first time Kim held Lilly. It was a very special moment. Lilly was crying and Kim was there rubbing her leg. The nurse then asked Kim "Do you want to hold her?" Then Kim said "Yes of Course!" Kim was bouncing up and down in her wheelchair as tears were rolling down her face. As soon as Lilly was in Kim's arms Lilly quited down and was very calm. She was in a relaxing peaceful state there in her mothers arms.

I will let you all know as soon as we hear the results from the tests of Lilly's kidneys and what the heart division says they are going to do with her.

Keep us in your prayers. We are grateful for all of the love and support everyone is giving us.

8/18/2010 Update

Within the last 24hrs we have been pretty busy. They have done many test on Lilly and unfortunately have found some more problems. I think I mentioned that her kidneys are not doing well. Her right kidney is completely disfunctional. It has turned into multiple large cysts. Her left kidney has multiple small cysts on the exterior but the internal structure seems to be normal. They did a test on her left kidney and they just told us that it is working properly.


We also found out that in her heart the mitro valve is extremely narrow and they are going to have to do a more intensive surgery. They still are going to have to fix the aorta valve(artery) that is above the heart but now they are also going to have to do a hybred surgery that is an open heart surgery. They will be doing this surgery next week.


This surgery will consist of stopping the heart, doing the surgery, then restarting her heart. The problem we face is when they restart her heart, there will be a rush of blood to her left kidney as well as the rest of her body and if her kidney cant filter this then there will be more damage to that kidney than there already is. Keep us in your prayers and I will keep you updated with any more news we get.


For right now her left kidney is fine.

Lilly is Here!

Lilly was born today at 8:41am. She weighs 7.2 lbs and is 18 inches tall. She has dark brown hair. Lilly's feet are swollen but the Dr. said within a couple of days the swelling will go down. Other than that her feet are fine and they said she will be able to walk. Her brain has a small cyst on the back of it. They didn't seem too concerned about it and it shouldn't cause any problems in the future. Her heart is still going to need the surgery on the artery. That probably wont happen til next week. The Dr.'s main concern is her kidney's. One kidney isn't there, it has been replaced with a cyst and the other kidney has cyst's all over it but internally the kidney is still there. We are waiting to hear from the Dr. now to see what they say and what we need to do next. Kim just received some morphine so she is doing pretty good. She is pretty tired right now. She didn't sleep well last night and now it is catching up to her. I will keep you posted on any news we hear. Thanks again for all of your support and prayers.