So many of you know we had some health issues with Madeline when she was first born. I wanted to elaborate on that and get out the whole story.
The day after Maddie was born, June 24th, started out as the best day! We were over the moon to have our little babe and didn't even mind the zero hours of sleep we got the two nights before! We had a fun day of showing her off to her grandparents and just staring at her perfect little face - she was so beautiful! That evening, the nurse noticed her temperature was a bit low so we wrapped her in extra blankets and did more skin to skin. After a while she would get really warm and clammy so I would unwrap her a bit...but then her temp dropped again. This cycle repeated a few times and so the nurse put her on the heating table and took some blood to see of there was an infection. Throughout all this, no one was overly concerned.
After a while they found she did have a bit of an infection so they started her on antibiotics. They decided to take her to the nursery for this. While the nurse was sitting with her in the nursery, she noticed that she was having some apnea episodes where she wouldn't breathe for about 20 seconds and that's when her temp got all weird. They came back to our room with a doctor and informed us that our one-day-old daughter was having seizures and would need to be transferred to the local Children's Hospital. They hurried to discharge me so we could go with her and we showed up at the NICU around 1am.
They had Maddie hooked up to an EEG to monitor the seizure activity. She was seizing almost nonstop. Apparently in newborns, seizures are hard to detect just by looking at the baby. They put her on IV meds to try to stop the seizures and we went home for a few hours since we hadn't slept in three days. That's got to be one of the worst feelings in the world: going home without your baby. We were like zombies.
It took them a whole day and three medications to get the seizures to stop. We were told getting them to 'break' is the hardest part and that it's much harder for them to start up again. We can happily say thats the last seizure she's had. She was basically sedated for the next 3 days due to these meds. Since she had no seizure activity, they were able to start weaning her off the sedative. They wanted her completely off this med before getting an MRI so that took a few days. It was then a waiting game for another day and a half to get the results.
On July 1st, they told us they had the results of Madeline's MRI and scheduled us an appt with our medical team to discuss them. This was the first red flag. They came in our room, closed the door and told us that the MRI showed that Madeline has severe/profound brain damage. My stomach hit the floor and my brain basically shut off. All I can really remember from that meeting is the look on our Neurologist's face as she spoke. It was a look of pure pity. Never in my life has anyone ever looked at me that way. That look will forever be engrained in my mind - I will never forget it. We pretty much crumbled after that and could not even really stay to hear the details. We basically ran home and fell apart. We did not know anything at that point as far as where we would go from there.
The next day we were a bit more 'together' (barely) and both of our parents came to the hospital to be there with us. We had another meeting with our doctors to better understand the situation. At some point in the final two weeks of my pregnancy, Maddie suffered a loss of oxygen. It happened multiple times and this caused the damage. We have no way of knowing exactly how it happened but most likely she was on her umbilical cord and blocked the blood flow. There was nothing anyone could have done to prevent it - it was just a freak accident.
Her official diagnoses is Hypoxic Ischemic Encephalopathy (HIE). As far as how this will affect her, no one really knows. Newborn brain injuries are extremely hard to predict due to the brain's plasticity. Most babies with damage like her's require ventilators and feeding tubes - neither of which Madeline ever needed. So the doctors have been very positive. We will just have to wait and see how she progresses and develops to assess what areas will be affected. The MRI is just a picture and really does not tell you much of anything in regards to the outcome for babies with this injury. The doctor said he had been surprised many times by babies doing much better than expected.
On July 4th we were discharged and we took our little girl home after a 10 day stay in the NICU. She is still on some medication for the seizures as a precaution but we are hoping to start weaning off of those in the next few months. Since coming home, Madeline has been an extremely healthy thriving baby! She is doing everything a typical baby would do with no issues in sight. She is now holding her head up, tracking things with her eyes, kicking her legs, and eating like a champ! She has even started giving us some adorable smiles. :)
We have been able to get started in the Early Start program through the state of California. We will have a developmental therapist come weekly to work with Maddie to make sure she is meeting all her milestones and get her extra help if any issues arise. I'm so happy we have this so we can tackle anything that comes up before it's a problem.
We have been so thankful for the love we have felt from all of our family and friends. It has gotten us through a very tough time and we are forever grateful for such supportive people in our lives. We are taking a positive outlook on this whole diagnosis. We have heard so many stories of great outcomes and are hopeful. Regardless of how Maddie develops, we are so in love with this perfect little girl and could never imagine our lives without her. She is a miracle and has already shown us a strength we never thought existed. While this is definitely not the outcome we had planned for and expected, we know that we are blessed with this beautiful girl and will give her the best possible life we can. I am so lucky to be her mom and I can't wait to share this life with her <3
