As soon as the tube was out, however, Noah went on a bit of a hunger strike. He refused to drink anything from his bottle. We tried everything to get him interested — multiple different nipples attached to the bottle (thanks Nana for getting them), waiting longer between feedings, I even switched from breast milk to formula to see if he would like that better. Nothing worked. Unfortunately after 24 hours of very minimal eating, we put the NG tube back in. He is now eating around 30 ml from the bottle and the rest is pumped through the tube.
At around 9:00 p.m. I decided to lay down in preparation for waking up every three hours to do diaper changes and get ready for feedings. There is a large vinyl chair that folds down to a "bed". It is definitely larger than a twin but I don't think it's quite a full. Kc was not tired at all, so he stayed up and read for a bit. About every 15 minutes there was some disturbance — alarms going off, nurses coming in to check said alarms, kiddos next door crying, nurses coming in to "take vitals", other nurses coming in to take blood samples, and pump machines making beeping noises. Noah was amazing and seemed to sleep through the whole thing. We, however, did not.
At midnight, after NO sleep, Noah's pediatrician came in to do rounds. He asked about how Noah's feeds have been. I told him that two days ago, because of the concern with how much Noah was spitting up, one of the hospitalist increased the time that his feeds are pumped through the NG tube. Instead of the typical thirty minutes, they increased his feeding time to ninety minutes. Because he is fed every three hours, he would feed for an hour and a half and then digest for only an hour and a half before feeding again. The feedings were so long that Noah was not feeling hungry and therefor stopped bottle feeding. I was unable to get him to take more than 10 ml the past two days and his OT, Sandy, couldn't do any better. Noah's pediatrician, Dr. Fields, immediately called a nurse in to the room and had her stop his pump feeding through the NG tube. He said that in order for Noah to go home, he needs to learn to eat, and in order for him to eat, he needs to be hungry. Dr. Fields then told me to bottle feed him every three hours. I am proud to announce that my little man has taken three bottles of 75 ml each over the past three feedings. He has not had any milk put on a pump to go down his NG tube. What do you know, a hungry boy will eat.
Kc left for work at 6:00 a.m. after a combined total of about one hour of sleep. He went in early because he needed to come back to Children's Hospital today at 10:00 a.m. for Noah's second trach change. Nana, Papa and Kc all got to practice putting in a new trach. Right before that, Noah had his first cast change. The nurse practitioner who changed his casts told me that "his legs are looking great".
Hopefully tonight will be a bit more calm and we can get some much needed sleep between feedings. Either that, or we'll be so exhausted that we'll sleep through all the beepings and interruptions.
Yesterday morning, Dr. Gerardi came in and put Noah's casts on. He used a special dressing that was developed by NFL trainers. They look like fiberglass casts, but they hardened in less than two minutes and are fairly flexible. Noah doesn't seem to mind the casts which is a good thing. He will have his casts changed weekly for aproxiamately a month before he has a minor surgery on his achilles tendon. He will then be casted for about two months before he graduates to braces.
Kc, Nana, Papa and I all took an Infant CPR class that focused on trach babies. We practiced placing a "bag" on a trach and giving two breaths before giving 30 chest compressions. We also learned the four symptoms of a choking child — crying without any noise, excessive coughing or coughing without any sound, high pitched voice or gurgling sounds, and a bluish tint in the face. Because of Noah's trach he shows three out of four symptoms at all times, so I suppose, if he is choking we will just be looking for a blue baby. I guess dressing up as a Smurf for Halloween will not be an option!
His feedings are going well. He is now bottle fed every other feeding and has increased his milk intake to 45 ml. He will continue to increase 1 ml every feeding until 50 ml. When Noah is able to drink 70 ml the doctors will decrease the fluids given to him through his PICC line (a deep IV line that goes through a vein in his arm towards his heart). Eventually the PICC line will be taken out and he can go home. Noah is still spitting up during every feeding, but I am confident that he is just a "typical boy" who loves to spit.
Late in the afternoon, Noah moved to another room. 
He was transferred from Room 1 to Family Care West. It is a larger room with more babies. We were told by the nurses that he is now "one step closer to going home".
It is quite an ordeal to move NICU babies around. Noah has six wires/tubes connected from his little body to different monitors in the room. When he moves, all of those wires/tubes need to be disconnected from the old monitors and reconnected to new monitors in the new room. It's a good thing he's such a little guy in a big crib, notice the "mess" he has around him. 
We received a "care package" in the mail yesterday from our good friends Robyn and Ira. They included some treats for Kc and I as well as the cutest "Team Noah" shirts for the three of us. Noah will have to grow a bit to fit into his, but I was able to smuggle it into the NICU for a picture. Thanks so much you guys!
We got the results of his MRI back today. We are very thankful that his brain looks normal, and as we expected, his right eye is underdeveloped and will never be functioning. Tomorrow, Noah will have yet another test — an upper GI study. The doctors are concerned with the amount and frequency that Noah is spitting up (more like throwing up). They will be injecting him with a dye through his NG tube to get an idea what is going on in his tummy.
Noah and I had an opportunity to read some more books today. I pulled out a book by Mo Willems, one of my favorite children's authors. The students in my class love the Pigeon, Duckling, Elephant and Piggie (main characters in Mo's books) and I am thrilled to introduce them all to Noah. As you can tell, he loved them too.
After much cuddling and sleeping, Noah had a visit from Dr. Kelly, the ophthalmologist. Her second examination of his left eye was encouraging. Noah's retina looks good but his cornea is swollen and becoming cloudy. She has increased the eye drops that he is given in hopes of preventing any more damage to the cornea.
We said a sad farewell to our friend Mia today. She has left Valley Children's Hospital and transferred to a hospice home for young children. We have all been touched my Mia and her parents, Sarah and Bryce. They are walking down a crooked path full of uncertainty but are trusting in the Lord to comfort them along the way. We thank them for shepherding us through the trials of tracheotomies and will pray for them in this new chapter of their lives.
The first stop on our tour is the upper West Wing. My Mommy and Daddy come up here a few times a day to gather gear and prepare for my trach suctioning. I don't spend too much time up here alone when the nurses are around because it seems they frown on the idea of me performing my own trach suctioning. I tried to argue the subject, but apparently it's written in the Room 1 association fee contract.
Second stop is the basement. Most of the other cribs I had my eyes on had basements, but this one was especially large. The nurses and I are able to store our equipment, personal items and fish (sterile saline drops). I apologize for the mess.
Adjacent to the basement, Nurse Lourdes installed a new jacuzzi. Today was my first dip in the water since my birth date. I can't say I enjoyed it, but Mommy mentioned how good I smelled after I spent time being scrubbed. I suppose this is why people call it a chick magnet.
Just south of my crib I constructed a wonderful lounge area where Mommy, Daddy and I spend quality time while we eat, rock and take wonderful naps together. From the lounge and my crib, the view out the window overlooks the valley and the snow capped mountains. It's absolutely amazing.
Thank you for stopping by to check out my new crib in the NICU.
Soon after Kc and I got in this morning, our Case Manager came in to talk to us about what life will be like with Noah at home. We will have suction equipment for his trach that must be with him at all times as well as a monitor that keeps track of his heart rate and breathing rate. I will have a large duffel bag to store his "travel" equiptment along with a diaper bag to take with me whenever we leave the house. Short trips to the market will be a thing of the past.
Noah's colostomy doctor, Dr. Hodge, came by early in the morning and told the nurses that "Noah needs to eat". Once they got approval from his primary care physicain, we were able to feed Noah 15 ml of milk through his NG tube every three hours. If he can get his breathing rate under control, Noah will be able to feed from a bottle. We're hopeful that will happen in the next few days.
After lunch, Noah had his first visitor. Joanie, a very close family friend, came to say "Hi". She brought in some books to read, but unfortunately Noah slept through her whole visit (I think it was his first food coma) and didn't get to hear any stories. After Kc and I had lunch in the hospital cafeteria (thanks to a generous gift card from our Church Staff), we returned to the NICU and Kc read a few books to Noah. That put him right back to sleep. Nana and Papa came to visit in the early afternoon. We took turns cuddling and rocking Noah, something he LOVES!!!!
Kc and I changed several diapers, emptied out the ostomy bag a few times, suctioned twice and watched the nurses replace his "split 2 x 2" (the gauze that is between his trach and neck). All in all, it was the best day we have had in the past week.
After pulling out his OG tube (the tube that leads down his throat to his stomach) for the fifth time, the nurses decided he just didn't like it gagging him constantly (how intuitive of them). They changed it to a NG tube (going from his nose down his throat). He seems to tolerate that much better. To help with his acid reflux, Noah is feeding much slower (only 3 ml every hour) and is given some meds. Unfortunately, this means he will not be bottle feeding any time soon. Kc and I were hoping that we could start feeding him in the next few days, but that dream will have to wait.
Tomorrow, we should have some results from the voiding cystogram (pee test) and spinal ultrasound that were done today. Once again, we cannot thank you all enough for your love, prayers and support. We feel as though we have been out of touch for so long. Our days are spent morning to night in the NICU. This blog allows us to keep everyone in the loop without multiple phone calls. What started out as a way to share thoughts and pictures with out of town family members has grown into a phenomenon known as "Team Noah". Our little man has touched our lives and reinforced our faith. We are humbled to know that his story has touched so many of you. THANK YOU!!!!!
Later that day, I moved yet again. This time my ATV drove me up to a cold room with a long table which had a giant metal arm attached to the ceiling. As soon as we entered and parked, my nurse moved me onto the table. She grabbed a tiny tube and slipped it into a place where no man wants a tube. I was not happy with that. It entered my bladder and made me pee. It was so embarrassing. Then, to make matters worse, liquid rushed into my bladder and then they started to take x-rays of what happened. It comes out! That's what happens! It comes out! I'm only a week old and I know what happens. As soon as that debacle was over, I drove back to Room 1 and took a long well deserved nap.
Soon after that, my Mommy and Daddy walked in and they both got so excited when they saw I had a second nose. I said, "I know, it's a nose...on my throat!" We all had a laugh. I was so proud of my comedic timing.
The rest of the afternoon was full of pokes, prods and pricks from the nurses. Multiple times mind you. Obviously, that was not my first option. After all that was finished, I was so very tired and Mr. Sandman was knocking at my door with a full bag dust. Hey, Mr. Sandman! You are no match for my Mommy's arms.
Right now, Noah is still hooked up to the respirator, but will be weaned off it over the next 48 hours. Although the trach is a bit scary now, it will enable Noah to be held, move to a crib and feed from a bottle. Kc and I are looking forward to what the next several days bring. We have so much to learn but are confident in our teachers at Children's Hospital.
Before Mom left today, she placed a doll from Threads of Love next to me. Now...I DON'T play with dolls! Check out my new shoes. They have cars on them. That's what I like. I must admit, however, that this doll isn't that bad because it smells like my Mom. I guess she puts it in her bra when she's not with me. Strange, but I feel so much better when the doll is next to me.
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