September 8th
Today was a better day for sweet baby Lilly. Yesterday was very traumatic with a chest tube inserted, no more breast milk, and waiting to hear if we would go to surgery. I am pleased to say that today is quiet and calm. Lilly is resting comfortably.
Chest Tube:
Yesterday afternoon they inserted a chest tube back into Lilly to help her drain the fluid that was around her left lung. Unfortunately when they did this it caused her right upper lung to collapse. The doctor assured us that over the next 24 to 48 hours they would do treatments to help that lung open back up. As of this am some of the upper portion of the right lung had opened back up. Yesterday evening the nurse went to check the chest tube and heard a pop sound. Lilly’s heart rate went through the roof and she turned beat red and started screaming (we can’t hear her cry but can see it on her face). The nurse noticed the tube started to drain again which means the pop sound was a clot that was blocking drainage from the tube. Lilly calmed a little when I started talking to her and rubbing her head. She received pain meds that really calmed her down. It was so sad. The good news is of this am x-rays a lot of the fluid has drained from her lungs.
Change of Diet:
Since Lilly had a lot of fluid around the lungs they feared it was fatty liquid. The test came back positive so Lilly is not able to take breast milk anymore for 6 to 12 weeks. She has to be on a low-fat or non-fat formula. Apparently this formula is very yucky tasting. Good thing Lilly gets it through the nose and doesn’t have to taste it.
Surgery:
As mentioned yesterday we have to have a central IV line surgically placed so we can give Lilly her heart medicine. After waiting all day to see if the cardiac surgeon could place the line he said he was not able to. We will be taking Lilly in for the surgery tomorrow with a general surgeon instead. We don’t know where the line will be placed. We hate to send Lilly back to the OR.
We have noticed today that Lilly seems to be more awake. She is opening her eyes and looking around. What a special gift it is when we get to see her pretty eyes and visit with her. Thank again for everything.

P.S. After 7 days apart… I finally got to hold my sweet baby Lilly!!!!!

September 9th
Lilly had her third surgery this morning. This surgery was to place a broviac line her upper right chest area. This centerline will help us to be able to administer medicine for Lilly’s heart and it is also used for blood draws. The great part about this line is that is can stay in her body for a longer period of time.

As we walked with Lilly to surgery she was sucking on her ventilator tube really loud. It made us all smile because she kept looking at us like where are we going and what’s for lunch. This sweet moment made going to surgery a little less tearful because we had something to laugh about. Lilly is now recovering from surgery. Her heart rate was a little high for a small period of time but after pain medicine she seems to be resting comfortably. (While continuing to suck on her ventilator tube) Don’t worry she will get some “lunch” in about 5 minutes and won’t be so hungry. For now we are going to let her rest the remainder of the day.

I got to play a little with Lilly today. We played dress up with her new bows. Notice we had a purple bow on her at the time of the picture. Thanks for your support and prayers.

Labor Day Weekend

It’s another day here in St. Joseph’s hospital. Lilly did ok through the weekend. Here is how the weekend went….
Saturday:
Saturday morning Lilly’s central line that was in her wrist stopped working. They decided to put in another PIC line. Unfortunately due to her swelling it was not possible to put one in. So they decide to use her neck line that was put in when they did the coart surgery. Unfortunately this line stopped working towards the evening hours and was leaking the medicine down Lilly’s back. They tried again to put in a PIC line but were still not able to. So we had to settle for an IV in the head. It was heart wrenching because they were not able to give Lilly any pain medicine so she was in a lot of pain. We stayed late into the evening talking to her, holding her hand and rubbing her head. While we were by her bedside she reached up and touched her daddy’s face. It was a precious moment.
Sunday:
We arrived in the late afternoon and noticed that Lilly was more swollen then the previous day. The good news was they were starting to come down on the ventilator support. They told us that their goal was to remove the ventilator Monday am.
Monday:
In order for the team to remove the ventilator they need to run several tests to make sure that Lilly was ready to do it on her own. Unfortunately these test provided several negative results. During Lilly’s echo they noticed that Lilly’s heart was having a harder time pumping and there appeared to be extra fluid around the heart. They also noticed something on her liver. They ran a test on the liver but we do not have the results yet. They ran a blood test which showed that Lilly’s heart is in heart failure. They think this is due to the extra fluid she is retaining. Because of these results we had to go back up on the ventilator settings and decided for Lilly’s sake we would not push to remove the ventilator.
Tuesday
This am they did an xray and discovered a large amount of fluid surrounding Lilly’s left lung. In order to help her lung, heart, and everything else it was recommended that she have chest tubes reinserted into her chest to drain the fluid. They put the chest tube back in at 2pm this afternoon. We also had to put her on higher ventilation mode to help her breathe. Because Lilly’s body is swollen she has a hard time maintaining IV lines. They will be putting another central line into her body either today or tomorrow. In order to do this it’s another trip back to the OR. During all this fun we had the pleasure of meeting Mark Reynolds of the Diamondbacks. He was visiting patients on our floor. He came into the room and I got to visit with him and his wife about Lilly. He gave her an autograph picture and cute stuffed puppy. Lilly slept through the entire visit. Chance of a lifetime Lil and you slept!!!!!
Although it seemed we played the one step forward three steps back game this weekend we are grateful that Heavenly Father has given us another day with her. We continue to pray that Lilly will get stronger and be able to jump the hurdles she is facing.
Thank you for your support and prayers.

Chest Tube Removed

Yesterday Lilly started to become extremely irritated. Nothing the nurse and I did seem to put her to ease. We tried medication, singing, rubbing her hand, and just talking to her. As the day went on her blood pressure continued to rise. They decided that it was time to take the chest tube out and this was probably the cause of her anger. Also she was not draining fluid so it needed to be removed. They removed the chest tube which was heart wrenching to watch. Lilly is not able to cry but her face tells us she is. After the tube was removed her blood pressure went down and she was more comfortable. She was finally able to rest. We also noticed that one of her IV lines they put in her wrist was oozing blood. I had to help the nurse remove the bandage and the blood from Lilly’s hand. I once thought I had a strong stomach but after watching your child go through medical treatments like this it makes your stomach very weak.
Today Lilly is stable. We are not going to push her off the ventilator anytime soon. We are giving her time to rest and heal. Also Lilly is more swollen today so they are giving her medicine to help her lose”the water weight”. We are also going to increase her feedings of breast milk. This is exciting because she has been just getting “IV Food” and 3cc of breast milk. They said that they will try again later next week to wean her off the ventilator.

Yesterday we received a special gift in the mail. Thank you to the person or persons that was so generous and thinking of us. We really appreciate it. Thank you.

Thank you for your continued prayers.

Surgery Update

Lilly has been slowly recovering from her Coartation of the Aorta Surgery. She has done pretty well. We are continuing to try and wean Lilly off of the ventilator. The actually removed the tube this morning but unfortunately they had to put it back down her throat after twenty minutes. Lilly is just not ready to try breathing without back-up support right now. Overall her kidneys look good, her blood pressure is a little high but expected, and her chest tube is draining the way it should. It’s unfortunately a wait and see game. They will continue to try to wean Lilly from the ventilator but there may come a time to explore other options such as a tracheotomy. This is a road we would like to avoid. For at this time Lilly is stable but continues to be closely monitored.
We discussed the results of the surgery…. unfortunately the doctor was not able to completely repair Lilly’s coart. Also Lilly’s aorta valve is leaking. Overall this means that Lilly will go back into surgery at some point over the next year. Unfortunately this will be open heart surgery. We are praying that Lilly will be able to grow and maintain over the next few months before we have to face this major surgery.

So we are asking that you continue to pray for Lilly and that she will be able to come off the ventilator and be able to grow, get stronger, and come home before her next surgery.

Thank you to everyone for the prayers, gifts, and simple acts of service.

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.