One Year Ago

It is hard to believe that it has been a year since Lilly completed her mission here on Earth. It was a year ago today that Josh and I held our sweet baby during the final moments of her life. It has been the hardest trial we have ever experienced. We have experienced many tender mercies over the past year. These moments come at a time when we need to feel our Heavenly Father’s love the most. We have both experienced special dreams of Lilly. We take these precious tender mercies and treasure them. My favorite dream was of me holding Lilly against my chest and she was smiling and giggling. I can hardly wait for the day when this dream will come true. We have been blessed with amazing family and friends that have supported us throughout the year. We feel so blessed to have them apart of our lives.

We celebrated Lilly’s birthday 1^st birthday in August. It was a day of bittersweet memories. We laughed how Lilly entered the world screaming. How Josh and I cried because she was alive and breathing on her own. My girlfriends and I released balloons at the time she was born. They were our way of sending hugs and kisses to her in heaven. Later in the evening our family gathered with us at Lilly’s grave. We sang Happy Birthday and Summer and Bryson blew her candle out. We ate Great-Grandma’s Hot Water Chocolate cake and sweated our guts out. Lilly was always dressed for every occasion and a princess crown seemed the most fitting for her on her birthday. We placed the crown in her flowers and had to laugh. It was sooo Lilly.

We thank Heavenly Father everyday that he gave us twelve beautiful weeks to be with our baby. We had begged Heavenly Father to please allow us to hold our baby alive for an instance. We had been told we may only get a small moment in time with her but Heavenly Father granted us twelve beautiful weeks. We will treasure every memory we have of that time we had with Lilly.

We are so grateful to everyone. Everyone has been so supportive, loving, generous, kind, and wonderful to our family. Thank you for everything that has been done to help our family get through this past year.

We have a Lilly & Nathaniel & Reese Team. We race again in Ethan’s Run 2012. It’s a great family event that raises money for Scott & Laura Eller Congenital Heart Clinic. If you would like to join our team please feel free to contact Kim.

We have kept the blog up so people could remember our sweet baby. We understand that her blog has touched people across the world. Lilly had a special mission here on earth. We are grateful that we were able to be her earthly parents.

We love you baby Lilly. You are an amazing little girl.

Ethan's Run

It has been three months since we lost Lilly. Although we have returned to a somewhat normal life we definitely feel heart ache everyday for our sweet baby. Summer and Bryson had a wonderful Christmas. Thank you to all who generously and anonymously dropped gifts at our home. The kids loved everything. Josh and I feel so blessed to have sweet friends who help during a time of need. Josh and I continue to struggle but that is to be expected. Our hearts ache for our baby but we are at peace that she is no longer struggling and finally is free.

On Saturday morning a group of us will be walking in Ethan’s Run in honor of Lilly and Nathaniel’s memory. (Nathaniel is my friend’s grandson who also died of Congenital Heart Disease). Ethan’s Run benefits the Scott and Laura Eller Congenital Heart Center at St. Joseph’s Hospital. If you would like information about this precious event or like to make a donation to help families who are walking down a path that Josh and I have walked please visit http://www.ethansrunaz.com. We are excited to participate in something so dear to our hearts.

Thank you again for your love and support.

Two Weeks Later

It’s the early morning hours of Thanksgiving Day and my heart is full as I reflect on this past year. I have so much to be thankful for. I am so thankful for my family, friends, and the opportunity I had to be Lilly’s mother. I am so thankful for the outpouring of love and support that we have received during this difficult time. We feel so blessed to have such an amazing support team. We are so grateful for the generous donations that have been made to help ease the financial burden we are facing. Thank you to everyone that was able to come to the funeral. We appreciate your willingness to come and support us. Thank you again for your love and support. We feel so blessed.

It has been a little over two weeks since we lost Lilly. The pain is sometimes unbearable but with heavenly father’s gentle loving arms around us, we are able to continue forward in our lives. Taking everything one step at a time. This thanksgiving we are giving thanks for the twelve wonderful weeks we had with Lilly. We have been asked was it worth it? Yes she was worth it and we feel so blessed to have had that amount of time with her. She taught our family so much in just that short amount of time. The lessons she taught us we will carry with us for the rest of our lives.

How are Summer and Bryson? Summer returned to school the Monday after the funeral. She seems be her normal bubbly self. Her teacher and the social worker at school are keeping close tabs on her. They say she seems to be handling everything wonderfully. This is a huge relief to Josh and I. Bryson is well BRYSON. He continues to just play with his trains and loves to tease his sister. Every now and then he will tell us that Lilly not at hospital but with Jesus then he will continue to play. He is very excited for his birthday.

Josh and I continue to struggle. We have good days and bad days. We both miss her so much. Our lives have changed dramatically. We went from running a hundred miles an hour to having a lot of time on our hands. We are both adjusting and using the opportunity to do special things with the kids and also being able to become closer as a couple. We both have returned to work and are grateful for that distraction.

We hope you have a wonderful Thanksgiving. Please know that we are so grateful for everything that everyone has done for our family. Please continue to pray for our family. Happy Thanksgiving.

Funeral Services

Please joins us as we remember Baby Lilly

Friday November 12, 2010

The Church of Jesus Christ of Latter-day Saints

1100 N Cooper Rd
GILBERT, AZ 85233

Visitation 9:45-10:30am

Funeral services 11:00am

Graveside Services: immediately following funeral service

At

Mariposa Gardens

400 South Power Road

Mesa, AZ 85206

Sweet Lilly

Lilly Grace Jones returned to her Heavenly Father on November 8, 2010. Lilly was wrapped in her parents loving arms as she completed the final moments of her mission. Lilly’s room was filled with grandparents, uncle, and priesthood authority during those precious moments. At this time Josh and I are filled with peace as Heavenly Father has wrapped his loving arms around us filling us with the knowledge that Lilly is finally at peace. We have been so blessed to be her parents her on earth for this short time. We look forward to the day when we will be reunited with Lilly. As details come together of Lilly’s funeral we will post them. We hope you will join us as we celebrate the life of Sweet Baby Lilly.

Many of you are wondering what has been happening with Lilly over the past several weeks. We are sorry that it has been awhile since we have posted but as you read further you will see we were going through a major struggle with Lilly.

The Neurologist have said that they do not know if Lilly is going to have a quality of life. The MRI scans of her brain look normal (except for the cerebellum) and they said that she could possibly have a quality of life except that they can’t tell what these De Sats are doing to her brain. When she holds her breath they can’t see what that is doing internally to her brain. So the Neurologist unit said “She could possibly have a normal quality of life and she could possibly not we don't know."

The Cardiac Unit is saying they don’t think Lilly is going to have any quality of life. They are saying she will be facing multiple surgeries and they aren’t sure if she will be able to make it through all of them. The Cardiologist Surgeon is willing to do the open heart surgery but is very hesitant. If we decide to go ahead and do the surgery Lilly will have multiple open hearts surgeries within her first year of life. They will need to replace her Mitral Valve with a mechanical valve(this will be done several times as she grows), they are going to replace her Aortic Valve with her Pulmonary Valve, they will need to put a machanical valve in place of her Pulmonary Valve, and lastly they will need to fix her Coarch of the Aorta. Again these are very major procedures that our little Lilly is facing. This is a huge decision that Kim and I are going to have to make whether to continue to put Lilly through these surgeries or as the Cardiac Unit has said we let Lilly rest and return to our Heavenly Father. We are stuck between a rock and a hard place on these decisions. We feel at times Father has said its time for Lilly to come home and other times we feel that he is trying to teach us that if we have faith in him he will continue to show us miracles with our little Lilly.

We were able this past Halloween to have one of our dear friends the Washburn family come over and take some wonderful family pictures. Here are a few of them. We hope you all love them as much as we do. We were able to put Lilly in a dress for the first time and she behaved very well throughout the photo session. We again want to thank you all for following this Blog and all of the love and support that each and everyone of you has given us. We know there are many of you out there that are praying for Lilly and our family, more so than we could ever imagine and thank you! Please pray that Kim and I will be blessed with wisdom on the decisions we are facing. Lilly is in liver failure so time is of the essence. Thank you again!

Jones Family

It has been a extremely long and stressful week for our family. On Thursday afternoon we sat down with the doctors and had a very long and emotional meeting. We sat and listened as the doctor explained that Lilly’s heart would need a very complex open heart surgery. The doctors feel that this procedure and the recovery process may be too much for Lilly to handle. They have ordered a neurologist to look at a MRI scan of Lilly’s brain to determine if Lilly will have any quality of life. After the results come back from the MRI we will once again sit down and talk to the doctors about what would be best for Lilly. Please PRAY for us that we will make the best choice for Lilly and our family.

Lilly had her heart cath this morning. It was a stressful drive to the hospital because there was alot of traffic and I wanted so desperately to hold Lilly before she left. We made it to the hospital at 9:15am and the nurse told us they were cleaning the cath room and it would be only a few minutes tilll time to leave. BUT.. Lilly need to be moved from her bouncey chair to bed so if I just happen to hold her while they did that it would be OK! Thank you NURSE!!! Lilly was in my arms for only ten minutes but it was enough to calm my nerves. We walked with Lilly to cath lab were it was a tearful goodbye again. I hate watching her go into these procedures. Lilly came back to her room a little after 2pm. The dr was able to balloon the aorta valve and the coart arch unfortunately he is not sure it will work. They were both extremely tight and he did not want to push her too hard. The mitro valve is moderately tight and he said the only way to repair is to do open heart surgery. He is going to take the pictures and measurements to the team tomorrow and hopefully they will come up with a plan of action. I am happy at least some ballooning was done but sad that he was not completely confident that it won't work. We are praying that we will get answers and begin moving towards the next step.

When Lilly came back she struggled to keep her oxygen level up. I was a nervous wreck and began to pace like a caged momma bear. The staff and I have become so close as we have spent the last two months together. they would send reassuring glances or mouth she is OK to me. Then afterwards they would come up and hug me telling me we are going to get through this. By the time we left Lilly was stable again and I was no longer trembling.

Thank you for all of your continued prayers. When we get information from the doctors we will post what they feel is the next step for our baby Lilly.

It’s a very quiet day here in Baby Lilly’s room. Even the hall ways in the unit are unusually quiet. No alarms, no hustle and bustle of staff members, and no crying babies. A sense of calmness is in the air. Lilly is sleeping peacefully in her crib. Lilly has struggled again this week. On Sunday evening we received word that Lilly has spiked a fever. The fever came and went for three days. Lilly had an infection in her trach area according to the swipe and blood tests they performed when she spiked a fever Sunday evening. She was started on antibiotics to help her fight this infection. Lilly’s blood count has been extremely low so we have spent the week trying to figure this mystery out. They called in a “blood” specialist to help them locate the problem. They are nervous that Lilly may be internally bleeding somewhere. They have scanned almost every inch of her body trying to locate a bleed but have not been able to find anything. Lilly gave us a very big scare on Thursday. While PT and OT and I were working with her on holding she got very upset and dropped her heart and oxygen levels to a very dangerous level. The room quickly filled with staff members as she was taken from my arms put back into bed. They immediately began to bag her trying to get her to oxygen levels up. This was not as ugly as the code blue incident but it was close enough. I stood back and trembled as I watched our baby fight to breathe. Once again I was completely helpless. When Lilly gets upset her lungs clamp down and she has hard time getting oxygen into her lungs. They refer to this as a bronchial spasm. It takes medicine and breathing treatments in order to get Lilly’s lungs to open back up. Lilly spent the rest of the afternoon on Thursday trying to recover from her “spell”. On a more positive note Lilly has started “feeds” again on Friday evening. We are at 3cc every hour. Lilly’s color looks wonderful and she is snoring (air leak from her trach) softly. Lilly is putting her hands up by her mouth and she grabs at her trach lines. Although this is not a good idea for her to grab we are excited because it shows some fine motor movement. After being told she would not have fine motor skills last week I am excited to see even the slightest thing. I did the happy dance when I saw her do it for the first time.

Lilly will be going for her heart catherization on Monday morning at 10am. We are hoping this will tell us what our next step will be and what we can do to help her poor heart. Josh and I both very nervous for this procedure because Lilly is extremely fragile and we hate seeing her have these procedures.

As we continue to be here in the cardiac unit we have met some amazing families. We have had the opportunity to bond with some of these families. We visit each other in the hospital rooms. We laugh, cry, and support each other. I am so thankful to have met these amazing families. To hear their stories and the trials they have overcomed are just incredible. I know heavenly father has brought them into my life to help me learn from their personal experiences.

We continue to feel Heavenly Father’s loving arms around us as we continue down this bumpy road. I have felt his loving arms around me when I have been alone at the hospital with Lilly. We are so grateful for the meals, phones calls, and continued prayers. We understand that Lilly has a very special mission here on earth. We love the sweet tender moments we get with her. I love when she grabs my finger or snuggles into my arms when I get to hold her. Please continue to pray that Lilly will begin to heal and overcome these challenges. Thank you for everything.

Bath Time

It continues to amaze me who much I miss the normal things about having a newborn such as the cuddling, nursing, diapers changes, dressing, and baths. On Saturday night we got another precious moment with Lilly. I got to give Lilly a bath. I was nervous with all her medical lines and trach starring at me but I quickly got the hang of it. I love washing her hair and rubbing my hand through her dark hair.
Many people already know that we rushed Bryson (our two year old) to St. Joseph’s hospital Wednesday evening. Bryson had been running a fever, vomiting, and lethargic for over a week. We consulted with the pediatrician who took a blood test. The blood test numbers came back very high saying Bryson had an infection somewhere. The pediatrician was very concerned and told us to take him to the hospital for further testing. Once in the emergency room at St. Joseph’s hospital they recommended that we do a spinal tap. It was so hard to stand by and watch another one of our children suffer from medical issues. The test came back negative thank heavens. While we were in the emergency room Lilly was upstairs causing her own set of problems. By late Wednesday evening both children were doing better. Bryson was released to come home and Lilly finally went to sleep.
We got the results of the neurology MRI on Thursday morning. The doctor said that because of the cyst on the back of Lilly’s brain in pregnancy it caused her cerebellum to not develop all the way. Her cerebellum is underdeveloped and smooth. He said her prognosis for the future is she will never walk, sit up, and fine motor skills such as eye contact will not be possible. He feels this is why she has no control over her eyes now. He said she will be mentally challenged. I was devastated. I walked back to her room numb and stood at her bed side and sobbed. After a good temper tantrum I remembered he doesn’t know my Lilly. For heaven’s sake she yanks her own chest tube. He doesn’t know how she was given a 5% chance to make it to a live birth. He doesn’t know our Lilly and her strength and courage to overcome all that she has so far.
We are continuing to rely on Heavenly Father for the strength and courage to face the trial. We are so grateful for this opportunity to grow closer to him and our family and friends. Thank you for all the prayers and support.

BIG GIRL!!!

It’s another beautiful day here at St. Joseph’s hospital. A lot has happened over the past week. Although they are minor milestones we still do the happy dance every time we accomplish one of them. Lilly is 7 weeks old now and weighs in at 11lbs 6ozs. Since Lilly is getting so big we moved her into a “BIG GIRL CRIB”. It makes it a little harder to reach Lilly but she has more room for herself, her friends, and all her equipment. Lilly will get to start eating formula again today 1cc every hour. This is a test to see if her tummy is healed and able to handle food. We are trying to get Lilly out of bed more this means holding, bouncy chair, or just sitting her up. Today it took 5 people to put Lilly in my arms. We were tummy to tummy. The look on her face was “What in the world?” We all laughed because she was just completely puzzled about the new position. I got to hold her up close to my face and talk to her. I couldn’t help but cry when I got to kiss her face and feel it close to mine. It was a very special moment. I also got to do my first trach change. This means I put the trach into Lilly. I was shaking but the respiratory therapist and nurse were there to assist. It’s a nerve racking process but something I need to learn to do without shaking like a leaf or wanting to pass out. The doctor came into to talk to me today and mentioned that Lilly is not tracking with her eyes so they have ordered a neurology consult. I have noticed Lilly’s gaze has changed over the past week so I am anxious to see if it is the medicine or maybe a neurology problem. We are so grateful to see Lilly making a little bit of progress. We love days like today when we get a smile or a chance to hold and love on Lilly. Thanks you for your continued prayers and support.

Weekend

Lilly unfortunately had another rough weekend. Lilly had several “spells” where she would drop her heart rate and oxygen level to a dangerous low. Every time the staff was able to “bag” her and bring her oxygen levels back up which helped her heart rate. This has been very frustrating for the doctor and us since we cannot figure out why she is doing this. Before when this would happen it was because she was mad. When it happened this past weekend she was asleep. Lilly has received two more blood transfusions hoping to increase her blood levels that have been low. The “nec” problem in Lilly’s tummy seems to be getting better every day.

Lilly continues to grow everyday despite the challenges we face. I love to watch her sleep and see the peaceful smile she gets on her face. We pray that the heart/oxygen spells will decrease and we can turn our focus on getting her strong enough to come home.

Thanks for your prayers and support.

Tummy Ache

Yesterday evening we received word that Lilly had a tummy infection referred to as “nec”. The doctors noticed on Lilly’s x-ray that there were gray spots inside her tummy. They immediately started three types of antibiotics and inserted a tube through her nose down into her tummy to suck out the yucky stuff. She will have her new nose accessory for several days as it removes the infection out of her tummy. Lilly is off of feeding for 7 days. She will continue to get her nutrition through the IV fluids. Lilly continues to keep the doctors scratching their heads and the nurses scared to disturb her during her beauty rest. Lilly will smile on a rare occasion which melts her mommy and daddy’s hearts. She loves having her binkie and being tucked in tight. Please pray that Lilly will overcome this infection. We are so grateful for the medical staff at St. Joseph. They are doing all that they can to help our sweet Lilly. Thank you again for the prayers and sweet thoughts.

First Trach Change

Lilly had her first trach change this afternoon. This was a nerve racking process for mommy even though the surgeon came and did the first change. He put a bigger trach in to help Lilly resolve her “air leak” problem. It took the surgeon, nurse, respiratory therapist, doctor, and nurse practitioner to perform the procedure. Even though it was just the nurse and the surgeon doing the work everyone was on standby just in case Lilly pulled one of her tricks again. The trach was changed successfully performed without Lilly having a meltdown. Lilly is still having some issues with keeping her food down. She threw up two times this morning so once again she was taken off formula while the doctor tries to solve the mystery. Lilly is still getting the IV fluids even though she is not allowed formula. Lilly weighed in this morning at 9lbs 8oz which amazes us since she is getting hardly any formula. Lilly looks so peaceful and beautiful today. Lilly has been in a great mood she has not had any meltdowns or holding her breath incidents. Thank for all your prayers and sweet thoughts. We are so grateful for everyday we get with our family.

A lot has happened with Miss Lilly this past weekend.

Friday:
On Friday morning Lilly had a CT scan. During the scan they looked at Lilly’s heart, lungs, kidneys, liver, and stomach. Lilly appears to have some fluid in her tummy, there is fluid around her heart, her lungs looked good, her liver still has the blood blister but appears to be the same size as in the previous scans. They became concerned when they saw a mass in Lilly’s left kidney. (This is her good kidney) The mass appears to be either a cyst or a fungi ball. They took blood cultures to see if it is really a fungi ball. The doctor believes it is a cyst and is waiting for official results for the radiologist. Lilly is becoming very accustomed to these medical procedures and feel she can perform her own procedures. Dr. Nigro said he wanted the chest tube removed on Saturday morning. Lilly decided she was done with the chest tube and removed it herself an hour after the doctor left on Friday evening. When the nurse went to change Lilly’s diaper she noticed the chest tube had slide out and was by the diaper. This caused a great alarm but thankfully the chest x-rays came back OK. We are happy to report that Lilly won best chest x-ray on Friday.

Saturday
Lilly looked so beautiful on Saturday. She had a round face, great color, and she seemed at peace. It was great to hear the nurse say that we were having a great day. We don’t hear those words very often so when we hear them we do the happy dance.

Sunday
It is one step forward and two steps back. Lilly threw-up on Sunday afternoon. This caused Lilly to choke and drop her heart and oxygen rates. Once again they had to “bag” Lilly to help her get oxygen. Since she threw up they stopped her formula again to give her tummy a rest. Even though she had a little incident in the afternoon she looked great by evening time. All evening Lilly held my finger. I would talk to her and she would make those cute baby faces at me. At one time it looked like she was smiling. What a sweet moment. I loved seeing her awake and trying to interact with me.

Monday
When I called at 3am this morning I got the distributing news that Lilly had dropped her heart rate and oxygen levels again requiring the poor nurse to “bag” her. My heart sank that was twice in 24 hours. Lilly had decided she only wants to lie on her left side. When the nurse tried to lay her on her right side Lilly had a melt down and this caused her to get into trouble with the oxygen and heart rates. We are trying to figure out why she does not want to be on the right side. We need to keep rotating her so she doesn’t get stiff muscles and her head shape doesn’t get deformed. They have decided to start feeding Lilly again which is good news but a little nerve racking that she might throw up again.

It is hard to believe that sweet Lilly is a month old. Thank for supporting our family during this trial.

Trach

Today Lilly had the tracheostomy. We asked the Dr.'s this morning if this is the best solution for her and they both said that is was. The surgery went very well with no complications but since her neck is thick they had a hard time getting the tube adjusted to the right area. They had to go in deeper than they usually do is what they told us. It is sad to see our little baby girl with a tube coming out of her throat to help her breath. Kim and I are having a hard time with this and feeling absolutely helpless. She has gone through so much and continues to but we know through faith and prayers she will make it through any obstacles life with throw at her. We thank you all for all of your prayers and support. We do know that your prayers are helping our little Lilly. Thank you!

Straw that broke the Camel's back!

Lilly had a very bad day on Friday. When I arrived at the hospital early Friday morning I noticed her ventilator tube was very loose and we could hear a very loud air leak. The doctor wasn’t concerned since we were getting ready to take the tube out. I was so excited she seemed to be handling the weaning process and with the air leak it was a positive sign. At 3:20pm the respitory therapist came in to turn the ventilator down again. Before she did this she suctioned Lilly’s lungs. This caused Lilly to throw a temper tantrum. While she is crying the therapist turned down her ventilator methods. This was too much for Lilly and I watched her turn blue before my eyes. Her monitors started to go off. They nurse and doctor came in and started “bagging her” which means disconnect the ventilator connections and started hand pumping oxygen into Lilly. After a few minutes she was pink and her numbers were good on the monitor. The doctor and I talked afterwards. The doctor felt that Lilly could not handle breathing on her own. The doctor said she would talk to the heart surgeon but felt we need to go ahead with the tracheotomy. I stayed longer than usual. Every time I thought about leaving I didn’t feel right and decided to stay a little longer.

Towards evening time Grammy and Grampy came to visit Lilly. As we sat and visited both Grammy and I could her Lilly make a very faint moan. About 8:30 Grammy and Grampy left and Grandma and Grandpa came in. Just as Grandma and Grandpa sat down the nurse came in and started to suction the bubbles out of Lilly’s nose and mouth. Lilly started to cry and drop her heart rate again. The nurse worked with her for a few seconds and then started asking for help from other staff members. The doctor came in and called a “code blue”. Staff members came running in as Grandpa rushed Grandma and me out. It was hard standing outside my baby’s room and watching them begin CPR on Lilly. Lilly was limp and blue. They inserted a new ventilator tube and were able to get Lilly oxygen. After several minutes her numbers on the monitors started to look better. After the entire event the doctor and I once again talked… Lilly’s first ventilator tube had come loose and was not positioned low enough. It had worked its self up her throat. They inserted a new ventilator tube with a cuff so it cannot work its self loose again. This event showed us that Lilly is not able to be weaned from the ventilator. We will more than likely schedule a tracheotomy surgery next week. Maybe with a tracheotomy Lilly will be able to start on the road of recovery and coming home.

Lilly is still struggling. She had to be placed on a cooling blanket to help prevent the blood rushing to her brain and causing brain damage. Lilly continues to drop her oxygen level every now and then but the nurse is watching her very closely. All of Lilly’s labs, ultrasounds, xrays, and echo appear to be ok after the major event.

This event reconfirmed how fragile Lilly is and how important it is to take the simple moments and treasure them. Thank you to our entire family for their patients, love, and prayers during that stressful event. Thank you to the Jensen and Mayer family for coming to Josh’s rescue so he could come to the hospital. Thank you Mom and Dad for comforting and reassuring me during the entire event. Thank you Josh for coming to the hospital and comforting me.

Thank you Heavenly Father for giving us another day with our sweet Lilly.

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.