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.