This Scar

This scar will continue to tell a great story of life and healing. Everytime I look at Ella, I'm reminded of the greatness of God. He is so good to his children and he has surely taken care of and blessed our family immensely over the past several months. Our journey began as we learned about Ella's congenital heart defect in February. It continued as we learned to trust God in such a bigger and deeper way than we ever have before. Some people have asked, "Why didn't God heal her before she was born? Why did she have to go through the surgery and hospital stay?" I believe that God is powerful enough to heal in the womb, however He allowed us to go through this experience so that we would grow and learn a new appreciation for life. Marcella's heart defect has turned into such a blessing, and I'm glad that I had this opportunity to need God. I continue to lift up prayers of thanks for our daughter and for the scar that will always be a reminder of God's grace and healing in her life!

9 Weeks Old

Time is flying by so quickly. Can you believe that Marcella is now 9 weeks old? She is having longer awake times and is starting to show her personality. Her favorite times of the day are waking up after a long nap and smiling happily at me - very contented. Sometimes she thinks I am so funny that she giggles. She also loves bath times in the evening. I've never seen a baby so excited to be in the water and splash around. She even tries to catch the water in her mouth and drink it??!!! A good night for us is Marcella sleeping 7-8 hours. If she does awaken during the night, she has learned how to suck on her hand. This pacifies her enough to put herself back to sleep. In the evening, she loves to ride in her stroller as we walk around town. Thursday nights, there is always a concert on the riverwalk, and she enjoys meeting new people and listening to the music. And, let's not forget her long naps. What baby doesn't like to sleep? It's during this time that she is growing bigger! Some of her 0-3 month clothes are starting to feel snug.

14 Babies!!!

These are many of the teachers that I work with at Chandler Woods Academy. There were 14 babies born this year and two more are on the way! We made the local tv news on Friday and we will also be featured in the Grand Rapids Press. It was a big day for Marcella. We had to get ready and at school by 9am! Then we stayed to talk with other teachers and have a barbeque lunch from Sandman's. I'll be going back to work part time in the fall and job sharing with Kristy Mitchell (in the front row with the baby in red). The good thing is that the state of Michigan passed a new law that schools cannot begin before Labor Day. This is to increase tourism. Yeah! I'll get a longer summer and more time with my daughter.

Something the Lord Made

Tyler and I watched a great movie this weekend called "Something the Lord Made." It's about "blue babies" who don't get enough oxygen because their heart formed wrong before birth. In the 40's, babies with heart defects had a 100% mortality rate and doctors said nothing could be done to save them. How sad! Two doctors, Alfred Blalock and Vivien Thomas from Johns Hopkins Hospital, began researching babies with heart defects. Using innovative methods, they performed the very first heart surgery in the world! It was amazing to hear the true story of how these men went against all odds to save babies suffering from heart defects. Their work opened the door to continued medical research and future heart surgeries... and look what doctors can do today! The Lord made a way for Ella's broken heart to be fixed! Thanks for recommending the film, Kyle and Abby!

Relaxation

This is how Ella sleeps at night, with her arms up high. Really! They say it is a sign of contentment and relaxation. She takes several long naps during the day, however she hasn't yet learned how to sleep through the night.

I'm learning how to relax, too. No longer on a busy daily schedule, I'm enjoying an occassional nap and lots of time with my daughter. This afternoon, we sat on the porch and observed the power of a thunderstorm as it blew into town. Every day, we also check on a nest of baby robins housed on our front porch. It is the second nest we've been able to observe this spring.

The Doctor Says...

This is Dr. Schneider, the cardiologist who diagnosed Marcella with the congenital heart defect. He visited her when she was at DeVos and will continue to provide care for her as she grows. We went to his office yesterday for Ella's 2-week post operative appointment. Another ECHO was done of her heart to determine how it is healing. Everything looks great!

Dr. Schneider explained how complicated the surgery was, even adding information we didn't know. For example, Ella's arteries were very rare and complicated... not at all normal for this type of surgery. During surgery, when her heart was revealed, Dr. Bove found that the VSD (hole in her heart) was bigger than thought. He also found that her left pulmonary artery was smaller than expected. In addition, the coarctation of the aorta was very severe. Even with all of these complications, Ella's heart is now fixed and working really well. We are so thankful that God has blessed our surgeon, Dr. Ed Bove, with skilled hands and lots of experience.

Dr. Schneider removed all restrictions including no more medicine. Marcella is our healthy baby girl now! We rejoice that she is doing so well. And, she is gaining weight and up to 9 pounds! We'll visit Dr. Schneider again in 3 months, and then again in 6 months. After that, she should just have a yearly visit to the cardiologist.

Memorial Day Weekend

We had lots of visitors this weekend! Helen and Dave drove from Michigan. Pictured are Keturah, Heidi, Helen, Dave, and Betty.





Then my brother Ryan and his wife Michelle came for a visit. They brought us lunch and enjoyed some time with their new niece.

Next we made our first trip out with Marcella to Kyle and Abby's for a cookout. Several Keystoners were there to meet the miracle baby! It was great to finally get out of the house.





Monday, we were joined by friends and neighbors for the Memorial Day parade in Lowell. It went down our street so we watched from the porch. Marcella slept through her first parade and the ceremony afterwards.

My little girl

It is a true joy to have my little girl home. I am really enjoying fatherhood and seeing my girl progress in her life. It seems like it has gone by so fast even though it has been just a few weeks. I am so thankful for all the prayers and words of encouragement from all our family and friends. You all have been a great encouragement for Christy and I to help keep us at peace with all that we have gone through with Ella. We still need your prayers even as she is getting better for us to raise her as Godly parents and to bring her up in a Christian home. Thank you again, We know all your prayers made Ella a miracle baby from her surgery.

This quilt was made by our good friend, Lisa Johnson. What a powerful Bible verse! Marcella is definitely strong with God as her father! She has a great future with the Lord by her side.

8 pounds!

Our nurse put naked, screaming Ella on the scale today to reveal that she has gained weight and is now 8 pounds! She continues to get stronger and is developing a big appetite. Tyler and I are adjusting to parenthood. We love holding Ella and looking into her big blue eyes. Tyler is so enamored with little Elle that he doesn't even mind changing her dirty diapers or getting poop on his hands. I, on the other hand, find it disgusting when Ella has explosive poop, pees on me, spits up on my shirt, or leaks milk down my chest. I hope I get used to this soon. Teaching fifth graders is a lot easier than taking care of a baby.

My mom spent the past week with us and we were sad to see her leave today. Not only did she enjoy caring for her first grandchild, but she took care of needed housework like laundry and dishes. There are many new flowers out front planted by Mom, too. Thanks for helping us this week. We love you!

No More Feeding Tube

Ella is doing very well. She is getting so much stronger that she can drink her whole bottle easily without getting winded or falling asleep. Look how she is even trying to hold the bottle herself! She is also waking before her feed time and letting us know she is hungry. Yesterday, Tyler took out her feeding tube! Yeah! Her face is still irritated and red where the tape was on her cheek. She has very sensitive skin.



Ella has graduated from sponge bath to a real soaking bath in her little tub. She actually liked sitting in the warm water. Check out how her chest is healing. The sterile strips should fall off on their own next week. As Ella grows, her scar will get smaller and fainter.

We're Home!

How exciting to be discharged from the hospital and finally be at home! Three weeks have past... 2 days at DeVos Children's Hospital, 6 days waiting for surgery at Mott Children's Hospital, 1 successful surgery, 3 days recovering in ICU, 5 days to grow stronger at the hospital, and now 4 days home in Lowell. The time has flown by so quickly!

When we arrived home on Thursday afternoon, we were surprised at the welcome-home decorations. Thanks to Kyle, Abby, and Ashlyn for decorating with streamers and balloons! Then, we found food to eat in our refrigerator. Thanks to our generous neighbors, Randy & Ginny and Mike & Karen, for shopping and baking so we could have food to eat. And another surprise... Abby and Julie made meals for us at Main Dish Kitchen! Thanks friends. We feel very loved!

Ella sleeps a lot! She is getting stronger every day and we are using the feeding tube less. First pediatrician appointment went well. Ella weighed in at 7 pounds, 11 ounces, an increase of 4 ounces since birth. They hope for her to gain about an ounce a day. We have a visiting nurse that comes to our house a few times a week and will be monitoring her health and recovery.



















Our dog, Grayer, didn't acknowledge Ella's presence for the first 24 hours. Then, he caught her scent during a diaper change and started to be curious. He has been very gentle and a good big brother so far. Look at how nicely Gray is cuddling with Ella and Papa!

Tyler and I are trying to adjust to the lack of sleep. Ella is a night owl and has some of her most awake times between 9pm and 1pm. Grammy Sandy is staying with us this week to help with care of Ella and housework. There are so many baby things to wash and sterilize.

Last Day at Hospital

It is almost time to go home. Ella did gain some weight overnight and she continues to eat well. She has started nursing a little, and a lactation consultant is working with me on this. We weigh her on a special scale before she eats and then again after she eats to get an estimate of how many mL she took in. Our nurse practitioner said we could stay for one more day. It is really nice having the extra help and care here in the hospital. We can take Ella home tomorrow (Thursday), probably in the morning. And we have scheduled her first pediatrician appointment for Friday.

A Healing Heart

Ella is wireless! No more tubes, cords, or lines. No more oxygen. No more monitors. Now we can pick her up and hold her and move her around the room easily. This morning we took her down to the first floor where she had an x-ray and an echo ultrasound of her heart. Although her heart is still a bit swollen from the repairs, it is working well! Her valves are leaking a little blood, but the doctor said it was "trivial regurgitation." Also there is a small hole in the bottom of her heart that was not reparied in surgery, and this should heal on its own as Ella grows. The main part of her heart that our cardiologist in GR will continue to monitor is the repair of the coarctation of the aorta. This main vessel was enlarged, but could change as she grows. Because of the good tests, and because she is now wireless, Ella will go home soon!!!! The last thing her nurse practitioner needs to see is that she is gaining weight. She is currently under her birth weight. We are mixing powdered formula into my breast milk so she gets more calories each feed time. She still sleeps a lot and gets tired easily. But, she is a healthy little girl, and we are eager to take her home soon!

Mothers Day

Ella is still doing great and Christy and I are enjoying spending Mother's Day with her. My parents just left and now it is us and Ella. The Grandparents loved spending time and holding her since they live so far away. Ella is sleeping good and just starting to learn to eat from a bottle. She is having a little bit of a hard time learning to breath, suck, and swallow, so we have to use a feeding tube to give her what she doesn't eat. The nurses say with time she won't have a problem, but keep her in your prayers for this b/c she doesn't like the feeding tube. The great and amazing news is that she will probably come home Wednesday or Thursday so long as she stays on the same projectory. This is completely amazing since she had surgery only one week from then. The doctors are truly amazed at her recovery, but we all know how the power of prayer works. Thanks for all the emails, responses to posts, and calls. They are greatly appreciated by Christy and me. Your prayers keep our good spirits and attitudes up and Ella's great recovery moving along.

Amazing Recovery

"Enter his gates with thanksgiving and his courts with praise; give thanks to him and praise his name." Psalm 100:4

Today, our hearts are encouraged and filled with joy! We have so much to be thankful for. The doctors and nurses keep telling us that Ella has gone through major, complex surgery. They expected problems in her recovery. They expected complications and a long stay in the Pediatric Cardiac-Thoracic Unit (PCTU). God is showing his healing power in Ella's life and surprising everyone. Her heart is beating strong and her body is healing quickly. Friday morning, her breathing tube was removed! Overnight, her art line that was hooked to her umbillical cord was removed. Then, her chest tubes that were draining excess blood from her chest cavity were removed. The nurse, Jim, also started feeding her. He started with Pedialite. Then he gave her my milk mixed with water. By the time we got to the hospital this morning, she was in the process of being moved from the PCTU to the floor. We didn't expect this at all and thought maybe she would go to moderate care or the floor on Monday.

The floor is the final step in Ella's recovery. It is here that I will learn how to feed her and take care of her. There is even a place for me to sleep in the room with her. I have no idea how long our stay will be now, but guessing about a week more. It really depends on how well she learns to eat. So keep praying! God is hearing you loud and strong! Pray that Ella would learn to eat and eat enough each feed from a bottle. The nurse will set a goal for each feed. Whatever Ella is not able to eat on her own in the allotted time, then we have to feed her through a nose tube. I think that is really gross. The nurse is going to teach me how to insert the feeding tube and how to use it... but I sure hope she won't need it for too much longer.

Some of you have asked how you can reach us here at the hospital. Address is below.

C.S. Mott Children's Hospital
5 East Box 0236
200 East Medical Center Drive
Ann Arbor, MI 48109-0236
Unit Telephone Number (734) 763-4387

Little Warrior

Marcella is our little warrior, fighting hard to recover from her surgery. It takes the first 24 hours for babies to come out of anesthesia and stabilize their body systems. Ella was really groggy and mostly slept yesterday and last night.

She started going into JET, which is where her heart rate increases and her blood pressure drops. They stabilized her heart rate by starting the pace machine. Tyler was interested in knowing how that machine and others worked. She came out of JET and never went back or had to be treated with medicine. She came off of the pace machine.

Today, she opened her eyes a while. She's starting to move around more, bending her legs and squeezing our fingers. She sucks on her tounge and the breathing tube. Her heart rate and respiration rate and blood pressure were all stable today. She is peeing off lots of her extra fluids and her chest tubes are almost done draining.

The doctors tried to SPRINT her today which is the first step towards removing her breathing tubes. This is where they change the settings on the breathing machine so that they can test how she can breathe on her own. This went well, her lungs kicked in, and she breathed on her own for a one-hour test run. Then they did a blood test to see how that looked after the test. It was perfect and the nurse and doctor were impressed and really excited! They will SPRINT her a few more times tonight and should remove her breathing tube her first thing in the morning.

This is super fast recovery. With her breathing tube out, we may be able to start feeding her tomorrow. I know she is really hungry from not eating in 9 days. Although she was getting nourishment from her IVs, she still was having hunger pains in her stomach. So... all is going fantastic here! We give all the praise and glory to God for answering our prayers and helping Ella to heal. Please continue to pray that her heart rate, breathing, and blood pressure would remain stable and that she will be able to have her breathing tube removed soon. I'm sure that it is really uncomfortable for her. She has even tried to pull it out this afternoon.

Successful Surgery!

Praise God! Ella made it through the surgery! The doctor said that everything went well. All of the repairs were made successfully and her chest cavity was closed. We get to visit her soon and will give more details later.

Preparing for surgery

Thanks for all of your encouraging words! We love reading your posts and appreciate your continued prayers. We are filled with peace and hope as we trust our baby in the hands of our awesome God. There is nothing to fear and no need to worry. We have a good God who wants to bless his kids!

We are loving our baby Ella and are trying to spend a lot of time with her before her surgery. She is sleeping a lot more. Her respiration rate is increasing, and that tends to tire her. Also her blood prepressure has been lower. The doctors gave her some diuretics, which help her get rid of water retention. That seemed to help a little bit.

We met with her doctors today. The plan is to spend a few last minutes with Ella at 6:00 am before they prep her for surgery. During the surgery, a nurse practioner will give us an hourly report on how everything is going. After surgery, it will take about an hour to get her settled into the ICU again and then we will be able to visit her.

I'm not sure if I'm prepared emotionally to see her hooked up to all of the extra machines. She will be intabated and that will remain for hours or days as needed. She will also have a catheter. Her chest cavity may need to remain opened until the swelling goes down, but it will have a sterile covering. She will also have several chest tubes.

Moderate Care

Marcella was moved last night to the moderate care facility. The staff at the ICU said since she was doing so great they could move her. She is in her "tanning bed" getting some light to improve her jaundice. They had to put her into an incubator for the bilirubin to keep her from being irritated by the lights. I asked the nurse that was watching her if they named the bilirubin after a person I thought Billy Reubin. Apparently she thought that was the funniest thing and couldn't stop laughing, I guess she never had to answer the question before. Now I have a feeling she is telling all the other nurses. Oh Well.... The great part about being in the new place is we are allowed to hold her every three hours or so, to take the place of feedings. So Christy and I are able to bond with her more now. Christy and I are also doing good. Christy is tired a lot of the time and needs to take naps to keep her energy up, but she is doing great for just having a baby. We are staying at the Med Inn which is connected to the hospital, we just go down two hallways and we are at her room. It is so close by so we are going back and forth to the room and Ella's frequently.

Update from U of M

Marcella is in stable condition and is able to be moved from the ICU to the moderate care unit. Currently, there are no beds available in moderate care, so she will continue to stay in ICU for awhile. Her first nurse, Cindy, said that she was a "boring" patient and really didn't need one-on-one nurse care. Praise God for her strong body and stable condition. Her little heart is getting enough oxygen to her organs and she could remain stable for weeks, even months if they keep her on her medicine (prostoglandin?). She sleeps well when she is bundled in a blanket and she likes to suck on her pacifier. She cannot eat until after the surgery, so she is being nourished with an IV that is hooked up to her umbillical cord. She mostly cries when she has a dirty diaper or when she is hungry. A few drops of sucrose in her mouth, called "sweeties," often calms her down for a while.

The docs met to discuss her condition and schedule her surgery. This is tentatively planned for Wednesday at 7:00 am. Because of her good condition, if another child needs emergency surgery, they might give away her spot. Hopefully, she can still have the surgery as planned. Dr. Bove is an expert at the arterial switch surgery and estimated time is around 4-5 hours for the surgical repair. In addition to doing the arterial switch surgery and closing the hole in her heart, another repair needs to be made. She also has coarctation of the aorta, which is a narrowing of the aortic vessel as it leaves the heart. This vessel will need to be enlarged so the oxygenated blood can flow out of the heart easier. It complicates the surgery a little, but Dr. Bove is confident in doing all of these repairs in one surgery.

Thanks for your continued prayers for our daughter!