Savannah Elizabeth was born a ‘healthy’ newborn on December 20th, 2014. We were so excited to welcome her to the world after losing her sister at only 24 weeks. We had tried and waited for a long time and our miracle was finally in our arms!
When we brought Savannah home, she was not eating enough and did not have a coordinated suck, swallow, and breathe. She was not gaining weight, and was lethargic. Savannah was admitted to the NICU on December 30th. We worked on feeding her by bottle, but she continued to lose weight. The doctors decided they had to put in an NG tube, (a tube in her nose that went down to her stomach) to ensure she could get the calories she needed. Savannah remained lethargic, had very low muscle tone, and did not have more than 5-10 minutes of awake-time a day. We did a swallow study to see why she was having difficulties eating. The swallow study showed a narrowing in her esophagus so the doctors thought she might have a milk allergy and took her off of breast milk and switched her to a non-dairy formula. They tested Savannah’s blood for infections and diseases (common and rare), all which came back negative.
The NICU doctors then put in a neurologist consult to examine her due to her decreased alertness. The neurologist consulted genetics, and together they ordered a brain ultrasound, echocardiogram, brain MRI, EEG, more blood work, and even a spinal tap. Everything kept coming back normal, except the EEG. It was so abnormal the neurologist thought it was hooked up to her head wrong and wanted a repeat test. This is when things got scary! Savannah was thought to have a condition called Nonketotic Hyperglycinemia (NKH). The neurologist told us she likely had one month to a year to live. That’s right – ONE MONTH to A YEAR… They repeated the EEG and drew more labs. The EEG then confirmed Savannah’s brain had what is called a “burst-suppression” pattern.
At this point Savannah was transferred to the Madison Children’s Hospital NICU. She had an EGD, to further investigate her feeding difficulties, which also came back normal. Savannah stayed in the Children’s Hospital NICU for about 3 weeks, waiting for all the blood work and spinal fluid results to come back. It was also decided, Savannah would need a G-tube to eat due to her low muscle tone and risk of aspirating. (A g-tube is a small tube inserted through the abdomen that delivers nutrition directly to the stomach) After 36 days spent in the two NICUs, we were sent home without a diagnosis knowing Savannah was likely having seizures and they would soon become so severe they would take her life.
In March, Savannah was started on an anti-seizure drug to stop or prevent her from having seizures (No seizures had shown up on any of the EEGs). This drug was toxic to Savannah and on Tuesday, March 24th Savannah stopped breathing and needed CPR. We called 911 and had to go to the hospital. Due to Savannah’s weakened state, she came home on hospice and continuous oxygen. We said our good-byes every day that week and had our pastor come over to give Savannah blessings every day. Savannah had many apenic spells where she would stop breathing and needed stimulation to remember to breathe. She fought hard and surprised us; she made it to Sunday for her baptism. (Not many people know, but she stopped breathing during her baptism and we didn’t think she was going to make it).
Since March 24th, Savannah has needed 24hour care. She continues to have apenic spells several times a day. When she vomits, she turns so blue for so long we have had to give her rescue breaths 3 times to get her back. Savannah just doesn’t have the muscle tone to clear her throat when she coughs or vomits. On August 2nd, Savannah was admitted to the hospital for a double ear infection and pneumonia. She struggled to breath, had high fevers, her heart rate was high, and her pulse-ox was low. She needed IV antibiotics for almost a week before she finally started to feel better. These are scary times for us, where we fear the worst.
Savannah just turned 9 months old on September 20th, which is an amazing feat for Savannah. She continues to have seizures, but actually went a whole month without any! She is working with physical therapy and speech therapy and getting stronger every day. We are working on skills to increase muscle tone in her arms and legs. We are introducing new textures and toys to help Savannah learn and develop. She is working on tummy time and rolling over. Savannah is gaining some neck control, and is now able to turn her head from side to side while on her tummy! Every accomplishment may be small, but to us is so big! Savannah is becoming more alert and responsive every day. Her feet are so ticklish, she doesn’t like cold wipes for diaper changes, she loves baths but hates her face washed, she loves when people sing and read to her! Savannah now has 5 teeth. She has grown so tall she wears 18 month clothes!
We are saddened to think how some days we just pray and hope for an extra minute with her, praying for the strength that she will keep fighting. The daily struggles are real, but we don’t focus our lives on them! Our lives are better spent focusing on this beautiful girl, her strength, and her inspiration! She encourages us to be better people and to live each day for today! We don’t stress about things we can’t change. Yesterday’s worries are in the past – leave ’em there. Focus on today and what is in front of you now. Live today. If you want to do it, then do it! Make it happen! Don’t make excuses. Savannah may be critical, but we live, we LOVE, and we do our best to show her the world and make memories! We are blessed each minute we get with her! Don’t take life for granted – slow down and live. Enjoy your day and the time you have!
Jay, Rachel, and Savannah
A huge thank you to Alia Morgan Photography for these gorgeous images.