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.

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.