June Update

A lot has happened since the last visit with the NEONATAL doctor. We met with our regular OB doctor where he checked Lilly’s heart rate. It seemed when he listened to her heart it was slower and he listened for a longer period of time. This of course sent bells and whistles off in my brain even though he said she sounded great. At the conclusion of the visit he said he wanted us to meet with the fetal cardiologist at St. Joseph’s hospital and have an echo cardiogram on Lilly’s heart.

We had the opportunity to go to the Scott and Laura Eller Congenital Heart Center on Friday June 18^th. It was a long afternoon as we went from an echo cardiogram to meeting with the doctor to then meeting with the surgeon. Lilly hated the echo cardiogram test and so did I. She hated them pushing and poking on my tummy. They would push the ultrasound wand into my stomach and she would try to push them away. VERY VERY uncomfortable. During the echo cardiogram it was discovered that Lilly’s heart is not as severely damage as once was predicted. It is hard to explain exactly what is wrong with Lilly’s heart so I am going to try my best. It seems that the aortic valve is either too small, too thick or the valve is not open. Lilly also has an extra vena calva on the left side of her heart. There are other valves that seem to be small which can cause a problem once she is born. They said that it is possible that when she is born she will need a surgery within the first to second week of life to help manage her heart. Another surgery that will be more difficult but help repair her heart will be done between 4 and six months of age. A final surgery to finish the process will be done between 2 and four years old. At this appointment they mentioned that they needed a MRI done. The MRI would tell them more about her brain, heart, and kidneys.

Fast forward 5 day to Wednesday June 23^rd. I received a call in the morning asking me to come to the MRI office at St. Joseph’s hospital that afternoon. I was completely terrified as I am scared of small confined places. The test took over an hour. We had to redo shots because Lilly was having a tizzy!!!! She didn’t like it when they told me to not breathe. They said we would have results within the next few days.

TODAY:

Today I received some of the results from the MRI. The MRI confirmed that Lilly’s brain is abnormal. The extent of the damage is unknown at this time. They have a neurologist reviewing the scans and we will meet with her on Tuesday. I was sad but not surprised to hear that her brain was abnormal. The cyst on that back of Lilly’s head is gone. IT burst at some time since the last ultrasound. Lilly heart does have the tiny valves. Unfortunately both of Lilly’s kidneys are now struggling to do their job. It was a hard phone call.

We will be meeting with the neurologist next week and hopefully she will be able to tell us more about the damage to Lilly’s brain. Hopefully in two weeks we will have a meeting with the entire medical staff that will help with Lilly’s birth. At this meeting we will set a plan in motion and hopefully have date for the delivery. We do know that her delivery will be at St. Joseph’s hospital.

Thank you for your continued support and prayers. Check back next week for another update.

NEONATAL Meeting

We had the opportunity to meet with the NEONATAL doctor that will be helping with Lilly. He was a sweet gentleman with a positive outlook on what is to come. He went through every issue that the ultrasound has told us that is wrong with Lilly. For the cyst that is on the back of her skull he did confirm that because of the under development of her brain she will be special needs. He feels that her kidneys will be better diagnosed once she gets here. He said that it is too hard to tell if it is releasing urine or not. More than likely it will take care of its self. Worst case for her kidney would be they remove it because it is causing her to have high blood pressure. Amazing I had no idea that the kidneys and high blood pressure are linked. For her bone structure and feet, he said we will face that once she gets here and she shows us. The main topic was her heart. According to the ultrasound Lilly has a possible hypoplastic left heart with diminished left ventricle and hypoplastic ascending aorta. That’s a mouth full. The doctor said that the left side of her heart is very small and the valves are so tiny that they more than likely will have a hard time pumping the blood. The best way to check for this is to do an eco cardio on her heart. The doctor said that they can do that while she is in me. How in the world are they going to test her heart through me??? We are waiting to hear when we will do that. The doctor said the best hospital to handle her heart is St. Joseph’s in Phoenix. My favorite part of the meeting was being told that as long as she is not stressed we will be allowed to spend some time with her before she is moved to NICU. I have dreaded the idea of her being whisked away so I am excited that as long as she is doing ok we will get to hold her. So the plan for now is I will deliver c-section at Banner Desert then after some test are ran and depending on the results Lilly will be moved after a day or two to St. Joseph’s Hospital to prepare for heart surgery. Now this is just a plan for now and will more than likely change. We understand that although she has made it past the 28 weeks mark there is still a chance that she could return to our Heavenly Father prior to birth. Thank you again for your prayers and continued support. We feel blessed to be able to help bring Lilly to this earth to full fill Heavenly Father’s plan.

We had our bi-weekly doctors appointment today. Lilly was anxious to make her presence known and to put her mother's worry to rest. Lilly kicked the doctor as soon as he began to measure my uterus. Her heart measured at 143 which is in the normal range. We made plans to meet with the neonatal doctor that will be handling our case next week. Lilly continues to amaze everyone as she continues to grow and move forward despite what doctors have said. We thank you again for the love and support. Check back June 8th for another up date.