Welcome Home Lily

Super Sweet Lily was discharged from The Children's Hospital of Philadelphia on Friday, January 15, 2010 just four days after open-heart surgery. She is our miracle angel and we are thrilled to start our life together as a family. THANK YOU for all of the prayers and positive thoughts each of you have sent to our daughter. We are eternally grateful and please know that each of you have made a difference. Thank you for reading Lily's amazing story.

The End or just the Beginning ...

Day 1 in the Step-Down Unit

Lily had quite a busy day today. She continues to eat well and this is such a positive sign. Today was the first day since birth that we saw a little irritability. It is hard for Lee and I to distinguish between typical newborn behavior and cardiac issues. We weren't sure if she was in pain or just fussy or a little of both. We had some difficulty consoling her today and she really did not sleep very much. It could have something to do with all of the interruptions. Doctors were coming in and out, we met with a lactation consultant, a social worker, physical therapy, and learned how to bathe her and care for her scar. One of the physical therapists was a friend of mine from Mount St. Joseph's Academy, Krista. It was such a nice surprise seeing her and having her help us with Lily. There have been a few small world stories surrounding our visit at CHOP. Our anesthesiologist, Dr. Steven, was referred to us by our good friend Evan's father. Dr. Steven took such excellent care of Lily and we are grateful for Dr. Davis' phone call on our behalf. I went to a dinner in December with a bunch of pregnant girls in the city. It's nice to talk or shall I say commiserate together on the ups and downs of being pregnant. I just so happened to sit next to Lauren, whose aunt Donna works at CHOP. Donna came down twice to check on Lily and talk with us. My very dear friend Eileen's sister-in-law was a nurse in the CICU for three years. Clare and I were able to speak this fall and she shared so many ins and outs of the CICU. It was SO helpful speaking with someone that works directly with the babies. Clare now works in the CCU and has already come to visit the three of us. I would love for Clare to be Lily's nurse before she leaves. The nurses in the CICU are incredible and all of them have a special gift. They've taught Lee and I a lot of tricks for taking care of Lily. My aunt Reenie's colleague's husband works at CHOP. Scott came down a few times to check on us and Miss Lily. Lastly, another anesthesiologist has children in the Lower Merion School District. She had a meeting at my school and the office staff noticed she was wearing scrubs. One of my colleagues, Karen, has a daughter that just started her career as a nurse at CHOP. They were talking and Lily's name came up and this doctor came to visit Lee and I too. It is so nice seeing a friendly face and having people "check-up" on you while in the hospital.

Lily's cardiologist continues to tell us how great Lily is doing. We should expect her home in a few days. Yes, that's right a few days. Lee and I were completely shocked to hear that news as it's Thursday and her surgery was just on Monday. We'll continue to keep everyone updated as this little peanut could be safe and sound at home shortly.

48 Hours Post-Op

We certainly have a strong little girl on our hands. Lily is making exceptional strides. The doctors removed her arterial line this morning. The dressing for her chest was removed. It looks so sore to me. The air is supposed to help heal it and we are not supposed to put anything on it. It will heal on its own. Her pain meds were gradually taken away and she was placed on Tylenol. The nurses and doctors can tell if she is in pain by monitoring her blood pressure, other vital signs, and irritability. Her nurse Emily said that she was only cranky when she was hungry or needed a diaper change. Everything looked good and she was doing what normal newborns do- eat and sleep. I got to hold her today and it was just glorious! We both just want to snuggle with her and hold her tight. By 5:30 this evening it was decided upon that Lily was ready to move down to the Cardiac Care Unit/Step-Down Unit. We really could not believe this incredible news. It was just 50 hours ago that she was in surgery. We were not questioning the doctors' decisions but we just could not believe that Lily was ready to be moved so quickly. She does not require the one-on-one care that the cardiac intensive care unit provides. My brother-in-law John calls her Super Lily and that's a perfect way to describe her. She is such a strong and determined little thing. We just love her so much. It's amazing how much love you can feel for someone. I guess it's a right of passage into parenthood but I never could have guessed it would be such an utterly amazing feeling.

We know that there are many people praying, sending positive energy, and keeping Lily in their thoughts. Perhaps this progress is a collective effort and our miracle baby will continue to surprise all of us.

I had a follow-up visit with my obstetrician this afternoon. We are going to monitor my blood pressure daily and keep close tabs on my headaches. My blood pressure was high again yesterday and I am still getting headaches. I am just so nervous that I'll get sick again and I know that it is imperative that I take care of myself. We may just have Miss Lily coming home sooner than we had originally planned.

Tuesday, 1/12/10 The Day After Surgery

Lee and I are truly amazed at the strength of little Lily. So many people have shared that babies are resilient but I guess it was something that we wanted to actually "see" for ourselves before believing. She had a great night and was able to come off the ventilator very early this morning. By the time Lee and I arrived this morning her chest tube was out too. People have shared that you'll know the baby is making progress when things (lines, tubes, medications, etc) are removed. She was still pretty sedated and out of it with all of the pain medication. We could tell she was struggling to open her eyes when she heard our voices but she's a fighter and eventually opened them to say hello. Lily made great strides today. By the early afternoon she was feeding from a bottle again. The doctors told us that this is huge progress for the day after surgery. We are so proud of her and all that she has been through. Lee and I kept saying all day, wow it's only been X amount of time since the surgery and look at her. We just marvel at her strength.

CHOP is one of the best hospitals for pediatric cardiac care in the world. Dr. Spray is the Chief of Cardiothoracic Surgery here and world renown. There is a hallway at CHOP named after him called The Spray Way. One of the reasons Lily has made such progress is because she's a fighter but another huge role is Dr. Spray and his team of doctors and nurses. At other institutions, babies would be on a ventilator for several days following open heart surgery and their chests may remain open too. Although this can happen at CHOP, it is not the norm. We are very thankful for the excellent care she is receiving.

Surgery Day

Today was the big surgery day. Dr. Spray performed an arterial switch open heart surgery to reposition the pulmonary artery and the aorta. They were in the opposite position of where they should be (transposed). When the aorta and the pulmonary artery are in the opposite position, the body receives unoxygenated (blue) blood instead of the oxygenated (red) blood it needs. The lungs receive the red blood rather than the normal blue. The arterial switch surgery moves the two main blood vessels to their proper position.

We got to the hospital at 7 am to spend some time with Lily before her surgery. Her surgery ended up being pushed back because of another case but that just gave us a little more time with her. We met with Dr. Spray prior to the surgery. I felt like all I did that morning was watch the clock with mixed emotions- part of me wanted the time to stand still while the other part of me wanted the surgery to get started. We've prepared and prepared and now it was here. Lee and I were able to walk her down to the OR and saying good bye may have been the single most difficult thing either of us has ever done before. I tried my hardest to be strong but that was just next to impossible. The next several hours seemed to last an eternity. Our nurse, Christine, was wonderful and updated us with every major development. It took an hour of prep work with Dr. Stevens and his anesthesia team to get Lily ready. The arterial switch itself with Dr. Spray took about two hours then another hour to close. We were updated throughout the surgery and met with Dr. Spray post-op. The surgery went well, there were no surprises, the coronary arteries (which are the size of hairs) did not present too much difficulty when they were repositioned, they were able to close her chest (sometimes because of bleeding they leave the chest open for a day or so), and overall things looked good. The next 48 hours are critical and Lily still is not breathing on her own. They hope to take her off the ventilator tomorrow. Lee and I got to see her tonight. Nothing can prepare you for seeing your baby the first time after heart surgery. Lily's machines around her crib had multiplied, life saving medication was being pumped into her body, a chest tube was draining from her chest, and the surgical band aides running down her chest were frightening. She looked so helpless laying there but I have to remember that all of this is there to save her life. I think one of the saddest things for me was seeing two little tears in the corners of her eyes. She definitely has the Devinney tear ducts. Lee and I would have traded places with her in a heart beat but we just have to keep in mind that she will not remember this day even though it's one we'll never forget.

Thank you everyone for keeping Lily in your thoughts and prayers. As I said to Dr. Spray, the words "thank you" just do not seem adequate in this situation. We are eternally grateful that he saved our daughter's life. We feel the same way towards all of you that have been closely following Lily's story and keeping her in your thoughts and prayers. Thank you.

Daddy & Lily

Update on Lily

Lily has had three great days and nights! Her oxygen levels are right were they should be, she's eating, and is doing really well. We are so thankful.

I on the other hand do not have such good news to report. Beginning on Thursday I just did not feel like myself. I thought it was probably exhaustion, I did just have a baby and am under quite a bit of stress. This is all new to me so I wasn't sure what was "normal" and what wasn't. Thursday and Friday I had a severe headache that I at first chalked it up to just delivering a baby and lack of sleep. I've had a hard time shutting my brain down even when I know I should be resting. I'm sure every new mom can relate. On Friday I decided to stop in at the Special Delivery Unit (SDU) where I delivered Lily just to talk to them about my headache. My head hurt worse than it did after pushing for an hour and a half during my delivery. My blood pressure was very high and they ordered me straight to bed to rest. I rested all of Friday afternoon but could barely sleep because my head was hurting so badly. I just knew something wasn't right. When Lee and I went back to the hospital that evening and I stopped in the SDU, it was decided upon that I needed to go to the ER. This is the unfortunate thing about the SDU. Even though I was just discharged less than 48 hours ago, they can not readmit me. They do not do see patients for any postpartum issues. So even though they all know me, my history, and are quite capable of taking care of me (not to mention my baby is down the hall) they could not help me. It was extremely frustrating. I had to go to Pennsylvania Hospital since that is where my regular obstetrician works. Lee and I spent the majority of Friday night at the hospital while they tried to figure out what was causing my blood pressure to spike and my headache. After getting my blood work back, it appeared to be preeclampsia. This is a disorder that affects 5-8% of pregnant or postpartum women. Severe headaches, blurry vision, swelling, high blood pressure are all signs. I would have to be on medicine and bed rest for 24 hours. This was just awful news being that Lily's surgery is scheduled for Monday, I wanted to spend every minute I could with her. I was just devastated. But I learned that preeclampsia is a very serious condition that could cause seizures and/or strokes and is not something to be taken lightly. I had no choice plus I was feeling very sick and needed some relief. I knew I needed to be strong for Lily and me getting sick would only complicate matters.

Poor Lee, both of his girls were in hospitals across the city from each other. Lee visited with me early Saturday morning but we both wanted him to be with Lily so my mom and Annie came to stay with me. I was mostly trying to rest and was finally able to sleep Saturday night. Lee had a pretty incredible day bonding with Lily. He was able to feed her a few bottles, change her, and even picked out a cute outfit for her. Leave it to Lee to have her first outfit an Eagles jersey ( even though it was size 6-9 months) he made sure she was supporting her team. He constantly sent me picture updates and I was just so happy he had such a special day with her.

I am feeling much much better now and am waiting to be discharged so I can see my baby girl.

Day 4

Lily had another rough night Wednesday night. Even though she had the procedure earlier that day to keep the hole in her heart open, her oxygen levels were still not high enough. It was decided that she needed to go back on a type of medicine called prostaglandins. We were hopeful that the ballon septostomy would eliminate the need for these medications as there are some risks. However, the doctors decided she needed the prostaglandins and started her on them last night. This caused her to spike a fever of 102.7. By the time Lee and I got in there today her fever had subsided and her oxygen levels were right on target. Lori, her nurse today, used Lily's blankets from her great grandmother (my mommom) to make her nice and cozy. All of the nurses seem to have their own little tricks for making Lily more comfortable and more at home. Lee and I brought her an angel stuffed animal to keep her company and a special gift from one of Lily's first "heart" friends, Camden. I've connected with Camden's mom, Patty, through an organization called The Children's Heart Foundation (www.childrensheartfoundation.org). Camden sent Lily a special dog stuffed animal and you can see it in the pictures- it's her watch dog, watching over her in the CICU. Camden is 6 and has his own incredible story to share when he was as little as Lily. It's been so hopeful to hear his story and his mom has been an amazing resource and friend for me.

Lily's coloring looked great and by the end of today we were able to hold our little angel for the first time. It was a special special moment that we'll always treasure. There was not a dry eye in the place.

Day 2

Lily had a rough patch last night. Her oxygen levels were dipping very low and were causing her to turn like Lee puts it "a blueberry". She is quite a wiggler and each time she dances around or kicks her little legs her oxygen levels decrease. Medications were initially helping correct this problem but they didn't seem to be doing the trick. Her team was right on top of everything and we had about 10 people discussing and making decisions with us last night. All babies are born with a small hole in their hearts called a patent ductus arteriosus (PDA) which closes itself shortly after birth. With TGA babies sometimes they need a procedure to keep this hole open to allow for adequate mixing of the red and blue (oxygenated/unoxygenated) blood. We were hopeful that Lily wouldn't need this initial surgery but things proved differently last night. Lily underwent a procedure this morning called a balloon atrial septostomy which keeps the PDA hole open to allow for sufficient mixing of the red and blue blood. Now that she had this procedure she should be stable and just fine for her big day on Monday. That is when she will undergo open heart surgery for her arterial switch (more on that later).

Lily did beautifully and her team is pleased with her oxygen levels. She looks great and check out her new hair bow!

Lily Colleen McManus Is Here

Lily arrived Monday evening, January 4th at 10:28 weighing in at 6 pounds and 8 ounces. We were scheduled to start induction beginning Monday evening but our baby wanted to make sure her grand entrance was on her due date. My water broke very early Monday morning and we arrived at CHOP by 3 a.m. Lily was born at 10:28 Monday evening. She gave us quite a scare with the umbilical cord wrapped around her neck twice but her neonatal team was right there to take over. Currently she is stable and in the CICU- the Cardiac Intensive Care Unit. We are waiting to see what day her open heart surgery will be scheduled. We still have not held her but are anxiously awaiting that moment.

The stars certainly aligned yesterday for us. To begin with my water broke on the day of my scheduled induction which was my due date. Only 5% of babies are born on their due dates, Lily and myself both hitting this stat. The staff at the Special Delivery Unit is just amazing and we can't praise them enough for their talent, dedication, and professionalism. When we checked in we learned that Dr. Zachian was the obstetrician on call. He is my close friend Jane's ob and delivered her daughter 16 years ago. My ob at Pennsylvania Hospital was his resident a few years ago too. This was a good sign for us. Then we meet our midwife whose name happens to be Lilly. Our private nurse is JoAnne which is Lee's mother's name. When it comes time for my epidural the anesthesiologist's first name is Leo, Lee's real first name. When the team of neonatologists and nurses came for the baby the head doctor looked identical to a colleague of mine from Council Rock, Keith Wigglesworth. Then he proceeds to tell us that his eldest daughter's name is Lily. Finally, Lily made her appearance at 10:28 p.m. with 10 being my college lacrosse number at Fairfield University and 28 being Lee's lacrosse number at Loyola College. We felt like everything just worked out beautifully for our daughter and couldn't be happier.

Baby Update

We had a successful appointment on Wednesday at CHOP. The ultrasound showed that the baby looks to be about 7 and a half pounds which may be off a pound in either direction. Ultrasounds this late are not as accurate because the baby is so big and there just is not a whole lot of room in there to get the most accurate readings. Regardless we are thrilled that I have made it to full term. I am scheduled to start my induction on Monday evening, the 4th, my due date. We've hoped and prayed that the baby would make it full term to have the best chance with the surgery. A 6 or 7 pound baby's chances are much much greater than a 3 or 4 pound baby's, so each week really has been a huge relief. Hopefully we'll have some exciting news to report on Tuesday, January 5th.

The 5th of January is Saint John Neumann's Feast Day. My Mommom, Mom, and I have visited his shrine twice within the past few months. He is a special saint since he lived right here in the Logan Square neighborhood where Lee and I live. Also, he is responsible for starting Catholic schools in the country. Another interesting fact is before he became a bishop of Philadelphia he was a priest at St. Philomena's parish in Pittsburgh. This was my mother's parish and she remembers as a little girl praying to him daily in school. It would be special for our baby to be born on his feast day. We'll just have to wait and see. Or she could be born on January 6th which is my Uncle Chris' birthday. That would be wonderful too!