Give Me Strength

Baker had his surgery yesterday and he's doing fine. The doctor said he had some respiratory issues during the surgery so they confirmed that they were going to keep him overnight for observation. Unless you were looking in his diaper you would have no idea that he had surgery less than a day ago. He's kicking and laughing, he is such a little tiger. I'm so amazed by the strength of my little less than a year old son. Flashbacks have been very common for both Teresa and I, so it's been kind of hard reliving what we went through in the NICU. One little smile from Baker, or the cute little laugh he has though brings us back to now. We are so grateful and thankful for him, and its times like these that remind us just how grateful we are.

We share rooms here, and we are on our third roommate, the second one in a row that has had a fever and possibly infectious. I don't get who is in charge of picking our roommates but they sure have a sick since of humor. Since Baker was discharged we have been warned repeatedly to keep him away from anyone they may be sick because of RSV, which is potentially very dangerous for Baker if he should contract it. So by some sick irony, we keep getting new sick Babies that are possibly infectious – plus parents that are definitely infectious. I know that hospitals are the worst place to be if you don't want to come in contact with an illness, I mean this is where all the really sick people come – BUT you would think a little common since could be applied here. Let's see, you have to share rooms because you don't have a lot of beds. You have Post Op babies that can't transmit any bugs to other people, and you have infectious and possibly infectious babies that can transmit bugs to other people. You also have babies and children that have severely compromised immune systems, which fit into both categories. I had a chat with the Charge Nurse, that didn't get me anywhere – it was a "they" issue that was beyond her control and they were short on beds – so we just have to live with the risk. I don't get it.

Anyway so far he is doing great, and hopefully we'll be out of here today… Here are some pictures of the little man before and after…

Fire Drills Part II

O.k. I was a little delirious on my last post; this has been a rough week so here is the rest of the story… Last night we went to our local Emergency room, where we were told by his Pediatrician to take him and let me tell you, if Baker is immune compromised I'm sure he picked up something there last night. We were only there for five minutes. We were told to go to the special pediatric waiting room and sign in – it was standing room only. It was a small room filled with sick children; we had trouble finding where to sign him in. It was late, Baker was asleep so we figured we would give him a few more hours to sleep it off and hopefully have a bowel movement. We went home and despaired about the state of pediatric emergency care in our area of Tampa. What if Baker had a real Emergency, is an Ambulance ride the answer?

Teresa gave him more baby laxative before I got up. Baker was still in bad shape this morning, and for some reason an idea popped in my head – take Baker to All Children's Hospital in St Pete. Yeah it's about an hour's drive from our house (30 minutes if we go fast) but anything has to be better then our local hospital. We got there and it was like night and day (literally and figuratively). We were in a clean waiting room, with only a couple people waiting and were checked into a bed within 20 minutes. The staff was incredible, and of course Baker made friends right away. Baker for the first time, showed us the difference between Projectile Vomiting and spitting up shortly after we got to the room. The doctor that saw him was specifically a pediatric doctor so we were sure that he's dealt with inguinal hernias before. The Doctor looked at us and told us this is going to hurt Baker and that he hates doing this. (I'm going to get gross so if you don't want to read a graphic description this skip to the next paragraph) He had to push the intestines back in, and Baker screamed.

Again we were traumatized, but it only lasted for a few minutes after the Doctor was done he got everything back where it was supposed to go. Baker calmed down. He had a massive bowel movement shortly afterward and then returned to his happy self. We had to get him to drink a few ounces of Pedialyte and keep it down before they would discharge us. If he couldn't do that they were going to put him on an IV to replenish any fluids he's lost with all the spitting up and vomiting. He took down a little and threw it back up. They gave him some medicine and then he took a nap woke up and took down about 6 ounces of Pedialyte and started laughing and playing and looking at everything and being the old Baker that we all dearly love. The Doc came back we told him he was normal and they discharged us. He should be good until Tuesday… JJJJJJJ We are almost through the woods yet again JJJJJJJ Oh yeah Teresa and I are thinking about relocating, we love All Children's Hospital the care was excellent and the place was clean plus they had all the latest technology (I know I'm a geek but still)…

Fire Drills

Baker now has a true inguinal hernia. He was diagnosed almost two weeks ago by his pediatrician. He saw his urologist on Monday who said that surgery is necessary. He was more irritable then usual over the weekend and Monday evening he was in pain. He wasn't sleeping so we put him in the car seat and started to take him to the hospital, he fell asleep we brought him home and he slept for most of the night. Teresa called all his doctors that had anything to do with this and all they could tell us was to give him a laxative, give him diluted prune juice, and to give him baby Tylenol for the pain. They also told us to watch out for a fever and throwing up which would be signs that the hernia was incarcerated which could cause bad things for the Baker.

That Monday night we also talked to his urologist who was on call, who said that if he got a fever or if we couldn't calm him down take him to the hospital… (almost forgot to add that fact). Also that we were going to get him into surgery very soon, they just needed clearance from his pulmonologist. Well the clearance didn't come until late Wednesday afternoon and on Thursday we finally got word that the surgery will be on Tuesday the 29^th. So Teresa asked if we couldn't get him in any earlier since he's in periodic pain and they said no.

So we have to wait, and watch our son suffer – this has been a very frustrating week to say the least. I'm going to hold back, because this is a family blog. I am going to say a few things though that I need to get off of my chest. We were referred to a Complex Care Pediatric group by the hospital, which was supposed to be of great benefit to us being that Baker had multiple issues when he was discharged from the hospital. We were promised tailored care to his specific needs. We were told that if we did have an emergency, that for severely premature babies (like Baker) he would get special attention since he probably had a compromised immune system. One of the supposed benefits were having a pediatrician on call at all times so that we could meet there prior to intake into the hospital so we wouldn't have to wait in a waiting room and expose Baker to a life threatening illness on intake. We were also told that these were the best doctors for children like baker because they specialize in the unique issues that you have with an extremely premature infant.

Well actually what we got was, never seeing the same pediatric doctor twice. Anytime we've called the on-call they have no answers, and when we did ask if we could see them then they said no – take him to the emergency room. Every doctor they referred us to, has been marginal. The only good specialists he has were ones we picked out our selves. I know it's late and I'm frustrated, so I should quit there. I want to end this on some happy notes…

Other then the Hernia, Baker is doing fantastic. He can see, he's smiling and laughing when we get in his face – he loves to play with my beard and his mom's hair. Every day we see him do something different, if it's a movement or noise he makes or when he talks to us with this look that we should really know what he's talking about. He is such a joy and we are still amazed every day by his progress.

We took him back to the old hospital that he stayed at for the first months of his life and he saw his old Neonatologist. That was such a joyous occasion, she was so happy to see him and to see how well he's doing. We thanked her again for all she did for him, I can't describe how great it was being able to bring him back and show him off. We saw his day time primary nurse as well; again it was another proud moment in our lives. She told us that this was why she does what she does, well after holding and squeezing him for a long time too. We need to get him there to see his favorite night time primary nurse, but he usually goes to sleep before they start their shift. So to Baker's favorite night time nurse if you are reading this we really miss you, think about you all the time and will bring him up there soon after he recovers from the surgery… J

Here are some of the latest pictures…

The Videos on the Right Work Now!

Well after going back and forth with YouTube they finally got the videos on the right bar to work.

The Baker Progression

Click on the image to go through a short collection of photos to see Baker's amazing progress.

Grrr...