1 Week Old

Leah is 1 week old today – by God’s hand alone we can celebrate this milestone. She has the cutest litte hiccups, cries when she leaves Mommy's arms, looks adorable when she stretches and yawn and is simply the easiest baby in the world to love! She passed her hearing screening, so we've been reading books to hear, praying with her and just loving on her as much as possible!
Currently Leah’s condition has been evaluated by our Neonatologist, an Endocrinologist, and a Nurologist, who have categoized her challenges as being in the VERY SEVERE range. They are using the MRI, Brain Waves studies, along with many blood tests, and most importantly Leah’s actual symptoms. Her current symptoms include: No Pituitary Function (lack of ability to produce Thyroid, Corisol, Growth Hormones, and all other basic hormones required for survival. She is unable to regulate her body temperature or blood sugar levels (they have been VERY low). The challenge is that low blood sugar can cause even more seizures, which brings us to another of Leah’s huge challenges. Her brain is not properly formed in the front, a nearly fused single hemisphere, rather than two separate hemispheres which should be connected by three ventricles. Her brain does have a lot of matter, meaning that it is trying to sent electrical messages back and forth but there is not the means to do so. This is causing VERY frequent seizure activity in the brain, however she is being given the two types of anti-seizure medications at the same time to help control these seizures from being manifested in her body. She is still having noticeable seizures, but the neurologist said without the medications, she would be having them very often. It is unknown how well or how long these medications will continue to suppress her body’s seizures. As of now, this is the highest level of treatment for her seizures, and the most that is able to be done to help control them. To treat her low blood sugar levels, the Endocronologist is giving her daily doses of Cortisol replacement therapy. This alone hasn’t helped to stabalize her sugars, so they are starting to put sugar into the milk she is receiving through her feeding tube.
The doctors say they have done all the assessments and tests that they are able to do. They are treating each symptom to the best of their ability. The results of each treatment have not been perfectly successful due to the severity of Leah’s condition.
To come home this next week, Leah needs to stabilize blood sugars so she can come off the IV – we’re trying the Cortisol replacements and adding sugars to her milk to help accomplish this goal.
We would be providing the same level of care at home that she is receiving in the NICU, including feeding her with a feeding tube through her nose, dispensing her daily doses of Cortisol replacements, thyroid replacement and anti seizure medications. (we’ve also been trained to give Leah intramuscular injections in the event that she vomits and cannot receive her meds through the feeding tube).

The doctors have been honest with us that due to the severity of Leah’s condition her expected lifespan is very brief…however they cannot predict if that means days, weeks or possibly longer. Thus our desire to have her home with us where we can hold her while caring for her around the clock becomes so strong. As we’ve now spent a week up at the hospital, most of our 8 hour days have only allowed us to be by Leah’s side for a few hours, and we’ve only been able to hold her for minutes a day. She needs our love in addition to all her treatments, and so we’ve set a VERY tenative date of Tuesday to bring her home. She cannot come home with an IV, so her sugars will need to be better than they’ve been. We’ll get to monitor them every three hours with a diabetes monitor (see there was a reason I got gestational diabetes, as this little blood draw is no big deal to me now), monitor her body temperature every 3 hours, feed her every three hours and Love her every minute.
Your prayers are truly sustaining us during this time. God has been so gracious in answering so many of our prayers and in such specific ways. To Him be the Glory for Leah’s life, and our family’s ability to care for Leah. This road ahead will be possible as our Lord leads us along!