Emotional Roller Coaster

This week has been an emotional roller coaster... We were faced with a CT Scan and another blood test from an abnormal thyroid reading. The nurse from ACH called yesterday with the CT results. From what I can remember, she said the "fluid" had increased and the Neuro was very concerned it could lead to hydrocephalus, which would require a shunt. We talked about signs of hydrocephalus and what to look for. She asked if he'd displayed any symptoms and I kept telling her NO!! He's seriously the happiest baby. She wanted us back for another CT in a month. A month?? If something was wrong, a month seems like a very long time to wait... I was so upset and didn't ask any relevant questions. I usually have a list compiled! I hung up the phone and cried for an hour, called my family, and asked for prayers. I was so confused and needed an explanation of what was going on.I called the nurse again, but never heard back. ACH is an AMAZING hospital, but I feel like we're another number there. I'm not complaining bc we can be there in 5 minutes and I'm so grateful for that. People have to drive in from all over the state for their services. I often compare it to UAMS and I need to stop. We were seriously treated like royalty there.

I decided to call one of the Neonatologist from UAMS who does TONS of brain research for UAMS and ACH. Brilliant man!! He's been so helpful explaining Harrison's MRI and head ultrasounds. He called me back within the hour. How nice is that??? His explanation was TOTALLY different from what I had taken from the nurse. He pulled up Harrison's January MRI and CT Scan on his computer. Since he was one of Harrison's Dr.'s in the NICU, he's able to do that for us. Here's the deal...I thought the nurse was referring to an increase in the axial fluid on the outside of the brain. Wrong!! There was a SLIGHT increase in ventricular fluid inside the ventricles from January's MRI til now. He kept saying SLIGHT and from what the CT showed, a very LOW chance of developing hydrocephalus in the future. It could still happen, but chances are very slim. His ventricles aren't big at all and he's seen a lot worse for a grade 3 bleed. He had blood in both sides of the ventricles, that caused the ventricles to enlarge. The ventricles are essentially in the middle of the brain. The blood has been absorbed, but the ventricles remain slightly enlarged, likely due to some loss of brain tissue around the ventricles. The extra fluid around the brain is seen in ex-premature infants. Harrison could have that for the rest of his life. Right next to the ventricles are the spinothalamic nerves, that send nerves to all the muscles in the body. It is possible that some of the spinothalamic nerve tracts have been injured, but with early intervention it can be compensated!!! OVERALL, there is NO evidence of post-hemorrhagic hydrocephalus!! He said his brain looks really good and most don't have this kind of positive outcome!! Also, there was no shift of midline. I took a huge sigh of relief and really understoond what was going on. I'm so grateful for his explanation. So as long as there's no pressure being put on the brain, everything is fine. I'm praying that his next CT will show a decrease in ventricular fluid!

Now on to Harrison's thyroid. Dr. Roach reported Harrison's blood test came back with an abnormal reading. So they retested yesterday bc anytime there's an abnormal reading, another lab must be done for accuracy. He called this afternoon and reported everything to be NORMAL!! Praise God from whom all blessings flow! Prayer works and I'm so happy for the good news. Another sigh of relief. I didn't understand how my baby could possibly be developing hydrocephalus and have a thyroid problem. So thankful everything is ok for now. I know having a preemie there will be bumps in the road and challenges. We are ready to take on anything!

 I'm so proud to be Harrison's mom. I'm so lucky God chose me to take care of him. My favorite time of day is rocking him. I love to feel his little breath against my chest. I remember praying so hard for him to take a breath on his own in the NICU. We're so blessed to have this precious baby in our lives.

Finally, if you are ever blessed to have a preemie, I HIGHLY reccommend investing in a binder, tabs, and hole punch. I save everything! I get that look like...OMG, you're one of those moms. Ha! I break it out at every appmnt. It's the only way I can stay on top of everthing. I also reccommend saving every business card, taping them to a piece of paper, and store in a plastic sleeve. This is a great referrence when I need answers. I have the following tabs: ACH High Risk Newborn Clinic, Easter Seals Day School, Helmet Therapy Consult, Brain MRI, ACH Swallow Study, Eyes, Easter Seals Evaluation PT- Speech- OT, Pediatrician, NICU Discharge Summary, Immunizations, Medicaid, TEFRA, Hernia Repair, Brain Study, and Medical Receipts. There's more, but I won't bore u. Rozzie, this paragraph is for U! Thought u would  appreciate.