*We took Travis to his 8 month developmental appointment last week. I was totally expecting them to say that he is right where he needs to be (with regards to his milestones). However, they said that Travis IS behind in Gross Motor skills. The say he is at about 6 months with that. I was a little disappointed to hear that. I really shouldn't be disappointed by that......ALL babies develop at different rates. The good news is that they are going to finally give him some physical therapy to help him learn to crawl. Roger and I have a theory that he doesn't like to tuck his knees into his chest because his sternum is sore and it may be painful (from the surgeries). Maybe physical therapy will help!!! As far as fine motor skills, he is doing great!! He is right on track!
*We changed up the nipples we were using for Travis' bottles (to level 4....we had NO idea they had a level 4) and Travis seems to be doing a bit better. We even had to bust out the 8 oz bottles for his night time feed (he drinks 5 oz at night)!! That is good news! Since he was released from the hospital a few weeks ago, he has been gaining weight at a steady pace! Yay!
*We had a follow up with the urologist last week to check out his infection. The swelling has disappeared on one side of his testes but he has a tiny bit of swelling in the other one. The urologist is going to follow up with an ultrasound in four more weeks. He again mentioned that it is EXTREMELY rare for a baby to get epididymitis. Just our luck, right?
*We have (again) moved Travis out of our room and into his crib (he was sleeping in his bassinet still since his last surgery in May). He does *okay* in there. He wakes up a couple times a night still to eat and he cries because he definitely prefers to snuggle with us in our bed. Eventually we need to get him to fall asleep on his own. He still needs mama or daddy to snuggle him to sleep! I have to admit, I really enjoy that part!! However, I know that in a few weeks when I go back to work I will need to time to get things done around the house, etc.
*We see the cardiologist again at the end of the month and I want to get a better understanding of if Travis is considered "medically fragile". HLHS babies are generally considered their most fragile between the Norwood surgery and the Glenn surgery. Since Travis did not end up having the Glenn (they did a Norwood Part 2 instead) we are not sure if he is still lumped into this group. Most babies have there Glenn by 6 months so we are not sure if the medically fragile label includes the risk that comes from just being a newborn with an underdeveloped immune system. We definitely have been pushing the boundaries and taking Travis out and about more than we did early on but we are still very careful with him. I guess we will see what he says.....
*THE BEST NEWS EVER = Travis said his first real word the other day.....it was MAMA. He has been making Ba, Ya, and Ma sounds for several weeks but he makes them in succession (MAMAMAMAMAMA, YAYAYAYAYA, etc.). The other day, he said Mama all alone with no other sounds while I was feeding him cereal and talking to him. My heart leaped out of my chest. Yay! He loves me the best (just kidding Roger)!! He probably has no idea that I am Mama but, I like to think he does.
*I start back to school in a few weeks and I am becoming a nervous wreck about it! I am starting back at a new school were I really don't know many of the staff and I don't have a relationship with the principal. This is particularly difficult for me since I have been out so long and I will be leaving my special needs baby at home. It would be nice to at least have the support of the old staff that I was used to. I am hopeful that the transition from Stay-at-home momma to working-mama is smooth....but, I know there will be tears! Thank GOD my mom is going to be watching him.....at least I don't have the worry of a stranger taking care of my little buggie!
*Travis can now stand if he has something to hold on to! He can't yet pull himself up to a standing position but he sure likes to stand and hang on to things. He loves to hang onto the dog crates (when the dogs are in there sleeping) and stare at them. He LOVES watching the dogs these days. They are quite fascinating to him!
*I had to give Travis another haircut the other night. It was just getting too long. I tried my best but I really am no good at it. When all was said and done he looked like Lloyd from the movie Dumb and Dumber :( To make things worse, Roger didn't want me to cut off the hair in the back that is beginning to make little curls so his hair is short on top and long in the back......mullet, anyone? Next time we are taking him to the professionals!!!
*Since we found out about Travis' condition we have used the internet to connect with HLHS families all over the place. In the beginning Roger loved to reach out to these families and use their experiences to educate us. I, however, did not want to read the stories because along with the success stories came the sad ones. I steered clear of blogs and other heart mommas until long after Travis first hospital stay. One by one, I became internet friends (and some real life friends) with some of these amazing women! It has been a privilege to watch their babies succeed and I hope I have given out some tidbits of advice that helped them when needed. The problem with support groups like this is that you have to take the bad with all the good. I can handle hearing the ups and downs of surgery but I really have a difficult time handling the passing of a beautiful HLHS baby. I think this is the reason I steered clear of it all in the beginning. I just kind of wanted to focus on our story and not think of Travis' mortality until the time came. In the last few months, 4 of the babies that I have read of and/or got to know have passed away and each time it is like reality socking me right in the gut. When you hear of these Angel babies you wonder....how is their story different? Can I prevent that from happening to Travis? It really forces you to focus on your baby's illness. It is so difficult.....It makes my heart so heavy, not only for the families of these babies but also for our reality!!! I try to force the bad thoughts out of my head but they sneak in ALL.THE.TIME. and they sometimes hang around...even during the great days! I wish my brain had an off button. I just want to focus on the good things and enjoy every minute we have with our little buggie!!!!!! I guess the big lesson in all of this is to never take life for granted.....use every minute to make those memories with your loved ones because life is NOT A GUARANTEE!!