Baby Nolen Fights CDH
The diaphragm forms when a fetus is at 8 weeks’ gestation. When it does not form completely, a defect, called a congenital diaphragmatic hernia (CDH), is created. This is a hole in the muscle between the chest and the abdomen. The hole allows the contents of the abdomen (stomach, intestine, liver, spleen, and kidneys) to go up into the fetal chest. The herniation of these abdominal organs into the chest occupies that space and prevents the lungs from growing to normal size. The growth of both lungs can be affected. The result of this is called pulmonary hypoplasia.
Babies with severe CDH and very small lungs can have difficult challenges after birth, and some will not survive. These babies require very skilled intensive care to stay alive—things like high-frequency or oscillatory ventilation, inhaled nitric oxide and, in some cases, extracorporeal membrane oxygenation (ECMO). ECMO provides temporary support for lung failure by circulating the baby’s blood through a heart-lung type machine. It can be life-saving, but can be used for only limited time. This is all information given by doctors and this website, ( https://fetus.ucsf.edu/cdh) which does give more information if you are interested.
After the baby is born they will be in NICU for several weeks and will have surgery to repair the hernia.
Meanwhile Haley must stay by mayo clinic until baby is born because of the severity of baby's health.
On April 12 Haley and the baby underwent surgery to place a ballon in the baby's trachea to help the lungs grow. So far both are doing well.
Our goal is to help raise money to ease the burden of increasing medical expenses as Haley and the baby continue to go through multiple surgeries and hospital visits both before and after the baby's delivery.
All contributions will go towards medical bills as well as expenses for travel and housing in Rochester, MN.
We appreciate any and all donations to help this beautiful young couple and their ever-growing family.
I am now back at the Ronald McDonald House and was told I can pick up my daughter and even go out for walks. There were tears in my eyes the first time I picked up Hope as I had not been able to do this for almost two months. Hope was just as excited that I could pick her up, that she didn’t want me to put her down. For the next couple of days my daughter was glued to me and wanted me to pick her up every chance she got.
The doctors say we will deliver from any day to a couple of weeks. We shall see how long Faith decides to hang out before her big arrival. We are now in week 36 and so excited to meet Faith at anytime! Of course the longer she is in the better!!:)
Thank you again for all of your continued thoughts, prayers, and donations. God is good and shows us his presence everyday.
Tyler, Haley, Hope, and Faith Nolen
For we walk by Faith, not by sight.
2 Corinthians 5:7
Tyler, Haley, Hope, and Faith Nolen
We found out the begging of February during our twenty week ultrasound that we are having another girl. Her name is Faith and she has CDH(Congenital Diaphragmatic Hernia). This means Faith’s stomach, liver, bowel, and spleen have all entered her chest through a hole in her diaphragm, which has caused the underdevelopment of her lungs. We had our first in utero surgery, which placed a balloon down her trachea (FETO) on April 13th. In this procedure, the balloon is left in Faith’s throat to help develop more lung tissue. A few days after being discharged from the hospital following this surgery I started going through my discharge notes. My doctor had written in the notes that at the time of surgery, Faith was only given a 20% chance of survival. This chance would be the same if the surgery was not successful or if we had chosen not to do anything to help her until she was born.
Since surgery we are having weekly ultrasounds and doctor’s appointments until delivery. We found out from our ultrasound on Monday April 24th that Faith’s lungs are growing!!!! I was in tears while the ultrasound technologist was scanning and I could see more lung tissue. Wow! We knew that the surgery was suppose to help, but I was shocked with how little time the balloon had been in place and how well she was responding to it. A lot of the staff that have followed our case closely at Mayo were coming up to me and congratulating me on the success so far from the surgery. At this point I asked what percentage he would give Faith after seeing the numbers of increased lung volume from the ultrasound and he said she has a 40% survival rate now. Again I was in tears because in just under two weeks from the placement of the balloon her chance of survival has doubled! What a wonderful day Monday was. Give thanks to the Lord, and to all of you for all of your continued thoughts and prayers.
Because of the severity of Faith’s case, I am to stay located in Rochester, MN until delivery. We are scheduled to have the second in utero surgery to remove the balloon from her throat the end of May. My doctor says anytime after this surgery he would expect me to deliver. However, we are hopeful we will not deliver until close to our due date, which is the end of June to give Faith even more time to help with her lungs. After Faith is born she will be in critical condition and have to be intubated, ventilated, and have umbilical lines placed The intubation and ventilation will help Faith breathe as we already know she has underdeveloped lungs and will be needing assistance with this. We hope that with the in utero surgeries Faith will not need as much assistance as she would if we chose not to do anything until she was born. She will not be able to eat until she is stable enough for surgery to fix her diaphragm, which will take place anywhere from a few days to a month old. The umbilical lines will be there to help give her nutrients until after the repair of the hernia. There are so many unknowns until she is born that we can only take this one day at a time now, and probably moment to moment once she is actually in the NICU. We are being told that her NICU stay will be anywhere from a month to 6 months long.
Thank you again for all you are doing to help provide our baby Faith with the best chance at life. You are all helping us to provide baby Faith with the best care possible by allowing us to pay for things that we cannot afford by ourselves and won’t be covered by insurance. While you have all given us so much, we would ask for just one more thing and that would be to continue to keep our little one in your thoughts and prayers.
Tyler, Haley, Hope, and Faith Nolen:)
“For we walk by faith, not by sight”
2 Corinthians 5:7
Thx for your post, love the verse from Corinthians. Praying for you and baby Faith.
We are saying prayers everyday for all of you. Faith is already a fighter and with that bit of Nolen blood in her she will be one tough little girl. God bless you and your family only good thoughts coming your way during this difficult journey. Love this family.