April 30th Tyler gets a feeding tube

After 5 days of IV fluids only, the nurses started feeding Tyler milk through a feeding tube they had put into his nose (and into his stomach). They started off with a tiny syringe full of breast milk they had kept in the freezer for him... gradually increasing the amount of milk when they were more confident that his digestive system was handling it ok. Although we were trying very hard, Tyler showed no interest in nursing so all of his nutrition was delivered through his tube.

April 29th MRI results are not good at all

First a little disclaimer about this post...We were given this news almost 4 months ago (at the time of this post) and Tyler has grown to amaze the doctors that gave him this prognosis. He is 3 months old now and doing everything a 'normal' 3 month old should. He is currently not showing any signs of the injury the MRI showed. The human brain is a pretty amazing thing and because Tyler's brain was pretty much a clean slate when the injury occurred, it seems he has been able to 'rewire' things to the healthy parts of his brain and this has allowed him to develop normally to this point. There is no answer to what the future will hold for him, all we can do right now is be amazed and thankful for the progress he's made so far and hope and pray it continues. He has had many different follow up appointments and everyone that has seen him agrees there is no sign of any concern at this point. If nothing else, it has just made us appreciate the little things... and it's made us very aware of what a little miracle baby he really is. That said, here's how that day went... We had been dealing with Dr. Little for our entire stay up to this point and he was always so warm , friendly, and pleasant. We knew the instant we saw the troubled look on his face that the meeting he was about to call us into would bring bad news. We did understand that there was a chance of brain damage but were so hopeful that the 3 days on the cooling blankets had prevented any damage at all. We were by no means prepared for the results that were given to us that day. I believe the words that started off the meeting were 'we do not believe Tyler is going to die'... that certainly set the tone for the rest of the meeting. The MRI scan showed that Tyler's brain suffered a severe injury. The doctors used words like severe, profound, and devastating when describing the extent of the damage. Looking back through his medical records now, the doctors describe it as a loss of 'nearly the entire left hemisphere and patchy areas of the right'. In literally minutes, we went from wondering if there was going to be any brain damage at all to hoping that his brain would have the capacity enough to regulate his body temperature, allow him to breathe, or eat without a feeding tube. The doctors were painfully honest with us which we very much appreciated. They described what they felt would be a very poor prognosis for Tyler. We had several doctors, nurses, and social workers with us for this meeting and I don't think there was a dry eye in the room. Even Dr. Little who is a seasoned neonatoligist seemed shaken by the news he was delivering. Our only hope at the close of the meeting came from the fact that a newborn's brain is extremely resilient and capable of some pretty amazing 'rewiring'. The MRI scan showed the injury that his brain sustained but only Tyler is going to be able to show us what that means for him. I remember leaving the room thinking I'd slap someone if I heard the words 'time will tell' one more time. Tim, my Mom, Gram, and myself went back to be with Tyler and cried for what seemed like hours. We all kept saying 'how can anything be wrong with something so beautiful'. It was truly the hardest day any of us have ever been through but the love and support from the friends and family we spoke to on that day made us realize that no matter what, we were going to get through this.

April 28th Daddy gets to hold Tyler with NO ventilator

Later Wednesday evening, the doctors decided to try and remove Tyler's ventilator as it appeared he was breathing on his own with no issues. As wonderful as it was to know he was breathing on his own, it was quite scary not to have the safety net of the ventilator if anything did happen. They watched him closely but he continued breathing just fine without that silly thing... and we finally got to see all of his beautiful little face.

He was still very swollen and puffy looking because at this time his kidney's weren't working that great yet and he was retaining a lot of fluid. He still slept most of the time, wasn't real active, and didn't open his eyes yet. Tim finally got to hold him for the first time too. They suggested he take off his shirt so Tyler could feel the skin to skin contact they call 'kangaroo care'.

April 28th All warmed back up!

After 72 hours of 'chillin' at 91 degrees, Tyler was finally taken off the cooling blankets and allowed to warm back up to normal temperatures. The whole process took hours as they gradually warmed up the water circulating through the cooling blankets. By mid afternoon on Wednesday the 28th he was nice and warm and pink...at last! This also meant the end of the EEG monitoring so nurses came in and removed the 20+ leads that had been glued to his head (yeah --glued... like superglue). I had actually run downstairs for lunch when they removed the sensors from his head but Tim said they used something that smelled like nail polish remover to get the glue out of his hair. I can't imagine he was too happy about it. Once the EEG leads were off we could FINALLY hold him in our arms. He was whisked off so quickly the night he was born that this was the first time I was able to hold him for a few minutes. I'm so thankful Tim took this picture so I can remember that moment forever :) Tim didn't get to hold him until the next day but he did get to change his first 'poopy' diaper. While it was so nice to finally be able to touch him, it was still difficult to maneuver around the ventilator tubes. Later that afternoon, Tyler was taken downstairs for an MRI (brain scan) so the doctors could see the extent of the damage. At this time, we still had NO idea of the extent (if any) of the brain damage. We would get that news Thursday afternoon.

April 26th "Whole Body Cooling" in Lebanon

I was released from the hospital in Nashua the following morning and we immediately drove up to Dartmouth to be with Tyler. I knew that he would be hooked up to all kinds of monitors and machines but nothing really prepared us for the first time we saw the little guy in his bed. The lack of oxygen at birth caused a condition called Hypoxic-ischemic encephalopathy. Because of this condition and the damage it had done to his brain, he met the criteria necessary for a treatment called 'Whole Body Cooling" where they actually place him on cooling blankets (blankets with cool water running thru them) to keep his body temperature cool and prevent the brain from swelling and causing any further damage to the cells. The temperature of the blankets are controlled by a temperature probe placed in Tyler's esophagus keeping his internal body temperature at a cool 91 degrees for 72 hours. During this time he had sensors on his head for his EEG to monitor brain activity, a respirator to help him breathe, along with IV's, catheters, and all kinds of monitors for his vital signs. Between his low body temperature and the medication they had him on, he really wasn't moving too much. Tyler was also having some seizures which the doctors said was to be expected with the type of brain injury he sustained. We weren't able to hold him but we could rub his arms and legs. I have to say, I will never forget how strange it was to touch his little arm and feel him ICE cold :( We just had to keep telling ourselves that this was necessary to help him recover.

April 25th Ready for takeoff

Shortly before 5am, the helicopter crew wheeled Tyler into our room so we could see him before he was transported to Lebanon. It looked like something out of a hospital TV drama. Looking back now, I would have thought this would have been extremely difficult to say 'goodbye' but seeing how badly Tyler needed help, it was more reassuring to know that he was going to be getting the help he needed so quickly. We were actually able to watch his helicopter take off from the room and I just remember thinking "GO..GO...GO".

April 25th Tyler's Story ... from the beginning :)

Dad, Grammy (my Mom) and Nana (my Gram) were all there to greet Tyler when he FINALLY decided to make his debut into the world just before 2am on Sunday, April 25, 2010. During his 6 hour journey into the world, Tyler became very stressed and suffered from a substantial lack of oxygen. When he was born the doctors and nurses became very concerned as he was extremely 'floppy' and was having trouble breathing. They whisked him off to the NICU (neonatal intensive care unit) where they kept a close eye on him. Although he appeared to be doing better, the doctors there believed that because of the trauma, his brain might begin to swell (causing damage). A phone call to the hospital in Lebanon NH and they made the decision to air lift him up there to begin a body cooling process to prevent additional swelling and hopefully ward off any further damage to the brain. Less than an hour after his birth, we were told that he was going to be transported up to Lebanon.