It's been a year!

It has been just over one year since we found out that Selah has Spina Bifida.  It is amazing to think back over this past year and all that God has carried us through.  A few months ago, I was able to share my testimony from this past year with a group of women at my church, and I wanted to post it here, as well.  This does not include our three week stay at All Children's over Christmas and New Year's because I shared this testimony the day before we went to the ER.  I pray that the Lord speaks to each one of you that reads this.

Testimony

Friday, March 25, 2011, was a day that changed my life forever. My husband, Carey, myself and our daughter, Sage, who was two years old at the time went in for a routine 20 week ultrasound. We were very excited because we were hoping to be able to find out the sex of our little baby. We initially found out that we were pregnant in early December, and I spent about 6 weeks with constant “morning sickness”. I felt nauseous from the time I woke up in the morning until I went to bed at night. It’s funny to feel that awful all the time, just to have people constantly telling you that it’s a good thing because it means that you are having a “healthy pregnancy”.

We went in for the ultrasound, and right away, the ultrasound tech, told us that we were having a girl. I was very excited! I have two sisters, who I am very close to and who are my best friends, and I wanted Sage to be able to have a sister close in age to her, to be able to experience that sisterhood bond. Then, the tech began taking all of her measurements. She said that she weighed 12 ounces and had a strong heart rate of 150 beats per minute, but she spent quite a long time looking at the baby’s head, spine and tailbone. Then, she printed some pictures from the ultrasound and said that she wanted to go show these to the doctor and that she would be right back. As soon as she left, I looked over to Carey, and fear and worry began to fill my mind. I started thinking of the worst case scenarios.

A few minutes later, the ultrasound technician returned with the doctor, and the doctor proceeded to tell us that our baby girl had hydrocephalus (fluid on the brain) and a myelomeningocele on her spine. The doctor continued saying that she may not survive in utero or may not be compatible with life outside the womb or have very poor quality of life if she survived. She recommended an option to terminate the pregnancy, but being that Morton Plant is a Catholic hospital, we would have to go to another hospital to have the abortion. She then said that she would refer us to a Perinatologist in the area. Of course, I was already crying very hard by this time. This was such heartbreaking news, something I never thought that I would have to deal with. However, we knew from the beginning that terminating the pregnancy was never an option. We believe that life starts at conception and that no matter what, God is the giver and taker of life, not us.

Although the diagnosis of our baby took us by surprise and was definitely the hardest thing we have ever had to deal with in our life, God was not surprised. He already knew the diagnosis of our baby, because “He knit her together in my womb”. He knew her before He ever created her, and God had been preparing me to be her mom. For example, I spent three years while in school at USF, working as a nurse’s aid at Shriner’s Hospital for Children, which specializes in treating Spina Bifida and Cerebal Palsy children. As it says in Deuteronomy 31:8, “And the Lord is the one who goes ahead of you. He will be with you. He will not fail you or forsake you. Do not fear, or be dismayed.”

God was preparing me even up to the night before we found out the diagnosis. I had just begun reading the book, Fearless, by Max Lucado that night. In the first chapter of the book, Max describes the story from Mark 4:35-41 and Matthew 8:23-27, when the disciples got in a boat with Jesus and a huge storm arose on the sea, while Jesus was asleep. This story kept going through my mind as we left that doctor’s office and as we dealt with the heartbreaking news. Like the disciples, I had to choose between focusing on the storm around me and the waves that were sinking my boat or focusing on Jesus, the one who can calm the storm. I definitely felt the storm surging around me, and I felt like I was sinking fast. Thoughts of fear, guilt, doubt, worry and anger all flooded my mind, but Carey and I quickly chose to focus our eyes on Jesus instead of the waves crashing around us. It was like Jesus was talking directly to me in Matthew 8:26, when He said, “Why are you fearful, O you of little faith?” Then, Jesus got up and gave a command to the wind and the waves, and it became completely calm. That is what Jesus did in my life. He gave me a peace that is unexplainable from a human standpoint, during the most difficult time in my life.

I still went through those stages of grief and spent many days and weeks crying out to God, and Satan to this day still puts those thoughts of guilt, fear, worry and doubt in my mind, but it is a daily battle to choose to focus on God and hope in Him. I love the verse from Lamentations 3:55-57 that says, But I called on Your name, Lord, from deep within my pit. You heard me when I cried, “Listen to my pleading! Hear my cry for help!” Yes, You came when I called; You told me, “Do not fear.”

God had also revealed to me the story of Jairus that weekend, as we waited for our appointment with the Perinatologist on Monday. Luke 8:41-56 tells the story of Jairus, who fell at Jesus’ feet because his only daughter was dying. However, the multitude of people kept Jairus from Jesus and in the meantime, someone from Jairus’ home came and told him that his daughter had died and so not to bother Jesus. Jesus then heard this and told Jairus, “Don’t be afraid. Just believe, and your daugher will be well.” (Again, God was speaking directly to me.) Jairus had to choose between the hope that is in Jesus and that He could heal his daughter, and the despair that is of the world in that his daughter had already died. Like Jairus, I had to choose between hope and despair. In Jairus’ case, he chose hope and Jesus healed his daughter and brought her back to life. Choosing hope does not guarantee healing on this earth, but I know that someday, Selah will be made whole and will be healed completely, when she is in the arms of Jesus.

That Monday, we went to the Perinatologist, and the diagnosis of Spina Bifida was confirmed. Spina bifida is a congenital malformation, when the neural tube fails to close completely sometime during the 4-6^th week gestation. Thus, it usually happens before the mom even knows that she is pregnant. In Selah’s case, the neural tube did not close completely at the 4^th and 5^th lumbar vertebrae, which, “Praise the Lord” is fairly low on her spine.

The myelomeningocele is the “sac of spinal nerves” that does not have bone or skin covering it, so it protrudes from the back and is completely exposed. Usually the nerves at and below the myelomeningocele are then damaged and can result in loss of some sensation and movement and problems with bowel and bladder control. Hydrocephalus occurs in almost all cases of Spina bifida and is a side effect from the neural tube not closing. This causes pressure, which then blocks the flow of Cerebral Spinal fluid out of the brain. About 90% of babies born with Spina bifida end up needing
a permanent shunt that drains the fluid from the brain into the abdomen. The cause of Spina Bifida is unknown, and approximately 1:1,250 babies have Spina Bifida. It is, however, believed that the consumption of at least 400 micrograms of folic acid before and during pregnancy can reduce the risk of Spina bifida. In my case, I had been taking 1,000 micrograms of folic acid in a prescription strength prenatal vitamin many months before I ever was pregnant. However, I would still encourage all women of child-bearing age to take a folic acid supplement to reduce the risk of neural tube defects.

The Perinatologist gave us three options: to continue with the pregnancy and have a scheduled c-section at 38 weeks, to terminate the pregnancy or to pursue fetal surgery to repair the myelomeningocele, while the baby is still in the uterus. Through a lot of prayer, Carey and I decided that the best option for Selah was to pursue the fetal surgery, as we prayed for God’s will to be done and for Him to open or close the door to fetal surgery.

On Easter morning, in April, we flew to Philadelphia, Pennsylvania to visit Children's Hospital of Philadelphia, one of only three hospitals in the country that perform fetal surgeries. On April 25^th, we spent a full day at the fetal surgery center undergoing several ultrasounds, an MRI and other testing to see if Selah and I would qualify for the surgery. However, we found out that we were not candidates for the surgery due to the severity of the hydrocephalus and that she would still need a shunt once born. The doctors believed that the risk of the surgery was greater than the possible benefits Selah would receive from the surgery.

Although disappointed by the news, we praised the Lord for a clear answer, as to whether we should pursue the surgery or not. We spent the rest of the week enjoying family time with Sage in Pennsylvania. Then, we headed home to finish out the rest of my pregnancy, which included weekly doctor’s appointments and ultrasounds and much prayer and trusting in God. I believe that probably one of the hardest things a parent has to go through is knowing that his/her child is sick or hurt or injured and not being able to do anything about it. That is how I felt. However, I know the Great Physician, the One who can do something about it. Therefore, as Lamentations 2:19 says, I spent the rest of my pregnancy “pouring out my heart like water before the presence of the Lord; lifting up my hands to Him for the life of my little ones.” To this day and for the rest of my life as a mother, I will do that for my daughters.

Wednesday, August 3, 2011 at 10:20 AM, Selah Grace Bonham was born by scheduled cesarian section at Bayfront Baby Place. She weighed 6lbs. 1oz. And was 19 inches long. Her head circumference was 46 centimeters due to all of the fluid on her brain. She came out crying a lot and breathing completely on her own. The sound of her crying was the sweetest sound I have ever heard because there was a chance, due to the severity of her hydrocephalus, that she would have trouble breathing on her own. I will never be able to forget the sound of her first cries or the tears of joy that followed. I did not get to see her right away. My doctor handed her off to the Neonatologist and his team to evaluate her and bandage her back to prevent the myelomeningocele from getting infected or being damaged. She was then placed in an isolet and taken to the NICU. I was only able to see her for a brief moment before they took her out of the room, and Carey was able to go with her. Later, while I was in the recovery room, Carey was able to text me updates on how she was doing and send me pictures of her. It wasn’t until 7PM that night, that I was able to go up to the NICU and see her.

Thursday morning, August 4^th, around 10:00 AM, after having an MRI, Selah was taken to the operating room for her surgery to close her spine. The surgery went very well, and she recovered quickly. Then, on Friday, I was finally able to hold her and begin trying to nurse her. Even though it had been two days since she was born, Selah latched on immediately and had no problems nursing. This had been one of our main prayer requests, that Selah would have no issues/ difficulties with breathing on her own or sucking/swallowing, which can be common with babies who have Spina Bifida. It is such a sweet reminder every time I am able to nurse Selah of how awesome God is! She still continued to get most of her nutrients from the IV, because on Sunday evening, she had to discontinue nursing to prepare for her shunt placement surgery on Monday morning.
Once again, God answered our prayers, and Selah’s second surgery to place her shunt, which would drain the fluid from her brain into her abdomen, was successful, and Selah recovered very quickly. On Tuesday, she was back to nursing and after two more days of antibiotics, she was taken off of her IV and monitors. It was so nice to be able to see her and hold her without so many wires and IV lines hooked up. Over the next few days she had a few other tests and consults scheduled to deal with bladder and kidney issues, as well as her hip and feet.

Even being in the NICU, we saw many other babies that were in much worse situations, and we were very thankful for the blessings in our life. Selah was discharged from the NICU on August 13, 2011, just ten days after she was born and five days after her shunt surgery. It is so amazing to see how God has already answered many of our prayers. I have also learned the importance of thanking and praising God for the blessings He has given me in my life. It is impossible to stay angry or depressed or fearful when I am focusing on the goodness of God. God gave me this scripture verse the day after Selah was born: Psalm 59:16-17, which says, But as for me, I will sing about Your power. Each morning, I will sing with joy about your unfailing love. For you have been my refuge, a place of safety when I am in distress. O my strength, to You I sing praises, for You, O God, are my refuge, the God who shows me unfailing love.

After coming home from the hospital, we had about two appointments per week with different doctors. Selah was in a cast for seven weeks to correct her left, clubfoot and a harness to correct her left, displaced hip. Her left foot and hip are healed, and she continues to wear braces on her feet and a harness at night for her hip. Selah has been blessed with good function of her hips and knees and so doctors are hopeful that she should be able to walk as she gets older.

We also had to catheterize Selah four times per day upon leaving the hospital, because she couldn’t urinate on her own. However, just a couple weeks after coming home, her bladder and kidneys healed and she now voids completely on her own, and we no longer have to catheterize her. We still have follow-up doctor’s appointments with the neurosurgeon, urologist, orthopaedic doctor and developmental specialist, but her appointments now are every three months.

Today, Selah is four months old. She weighs 19.5 lbs and is 26” long, and her head circumference is 45.5 cm. She is such a good and happy baby. She loves to talk, coo, blow bubbles, smile and laugh. She is very attentive to her surroundings and loves to make eye contact with people. She is sleeping 10-11 hours at night and absolutely loves her baths. A therapist comes to our house once a week to work on her gross motor skills like holding her head up while on her tummy and rolling over. We don’t know what the future holds for Selah and doctors don’t know either. We are unsure of what, if any, physical or mental limitations Selah may have, but we are trusting God to work out His perfect will in her life. A mother of a spina bifida child wisely told me, when I was pregnant with Selah, to let God write His story for Selah’s life. God also gave me these words, when I was pregnant with Selah, “To live in total abandonment, to fully put my faith in God and trust Him to do His will-this is true Christian living. This is walking hand-in-hand with God, completely blinded and unable to see the next step in front of me. But this is also being in closer relationship with God and truly seeking His presence daily!”
This journey has truly taught me to take one day at a time. It can become very overwhelming thinking about the future, but I have learned that God's mercies are new every morning. He gives me just enough strength, grace and mercy to get through today and not another minute. At the beginning of this journey, God gave me the scripture verse of Lamentations 3:21-24, which has now become my life verse. The verse says: This I call to mind, and therefore I have hope: The steadfast love of the Lord never ceases, His mercies never come to an end. They are new every morning; Great is thy faithfulness. “The Lord is my portion,” says my soul. “Therefore, I will hope in Him.” We picked the name Selah Grace for our daughter because of the meaning of Selah. It is a word found in the Psalms and is thought to be used as a musical interlude. I have heard the meaning of Selah to be “to pause and reflect” or “to stop and think”. God blessing my life with Selah has definitely caused me to pause in my life and to reflect on the goodness and sovereignty of God and the hope that I have in Him. It has strengthened my faith and brought me so much closer to my Lord and Savior, Jesus Christ.

In closing, I would like to share with you that this hope and peace that I have from Him is real and only comes from having a personal relationship with Christ. I would encourage you if you have never accepted Jesus Christ to be your Lord and Savior to do that today. There isn’t a better time than right now to experience that hope and that peace that only comes from Him. I would also encourage you, if you do have a personal relationship with Him, to pause and reflect on your life and see if there are any areas in your life or the life of your children that you are holding onto, worrying or fearing about and give those over to God. He will give you such a peace that surpasses all understanding. Also, pause and reflect on the goodness of God and the many blessings and miracles He has performed in your life.

I would like to take this time to stop and pray for anyone, who would like to have a personal relationship with Jesus Christ. The Bible tells us in Romans 10:9 that if we confess with our mouth Jesus as Lord, and believe in our heart that God raised Him from the dead, we shall be saved.