"Not that I had thoughts of becoming a song and dance man, but, like most young actors, I did want to play a variety of roles. I remember walking down the street one day, mumbling to myself about the way my career was going, when suddenly I bumped into Will Rogers. "What's the matter, Duke?" he asked, and I said things weren't going so well. "You working?" he asked, and I said, "Yep." "Keep working, Duke," he said and smiled and walked away."- John Wayne

October 31^st: Happy Halloween from Baby Smurf. The nurses thought his Smurf costume was ADORABLE, and I must admit I was proud of it too.

            To get ready for Duke wearing his Smurf costume I got to give Duke his first bath by Grammy and I (he has been bathed before but it is by the night nurses.) I filled a little basin with warm soapy water and Duke went in. At first he wasn’t so sure, but he was kicking his feet a bit and afterwards was so relaxed he just melted into his blanket and took a nap.

            His feeds were 9pm 10ml, 3am 5 ml (he is not a middle of the night wake me up baby), 9 am 8 ml, 3pm (with mommy) his record 18ml. After his feeds mom and I needed to go home for dinner and the trick or treat kids, but Duke’s NG (feeding) tube got clogged. Guess who replaced it……me. I received training on it Friday and have to be able to do it before Duke can leave the hospital. Of course as soon as I said I would do the tube Duke smiled at me, which made me feel bad because little does he know what I was about to do. I pulled it out, which Duke didn’t fuss when I did Thank goodness! I wasn’t able to get it down his right nostril, but I got it down his left one and check to make sure the NG was placed correctly. Duke was a little fussy when we put the tape to secure the tubes back to his face, but did very well.

            Tomorrow is a big day, the plan goes into place on how long Duke is in Rehab so tomorrow we will have a date for Duke to come home.

"I'm an American actor. I work with my clothes on. I have to. Riding a horse can be pretty tough on your legs and elsewheres."- John Wayne

October 30^th:  Duke had his first 24 hours of getting bottle feeds every other feed. He took 10 ml each time except the 3am feed (the nurse couldn’t keep him awake.) Today Duke was a sleepy baby, but the nice sleepy where he was cuddly and content when awake. He wore his Pre-Halloween outfit with Tigger outfit and looked adorable.

"When people say a John Wayne picture got bad reviews, I always wonder if they know it's a redundant sentence, but hell, I don't care. People like my pictures and that's all that counts."- John Wayne

October 29^th: So I spent the first half of my visit talking to the doctor and nurse practitioner about how I was NOT PLEASED about multiple things and finally got some answers. Of course it took me seeing my son’s feed wasn’t connected to his NG tube in his nose but was leaking on his bed to get me to explain exactly how pissed I was.

Duke talking to his horse

            They weaned Duke down to .3 liters after making an attempt at having him completely off Oxygen and he wasn’t ready yet. I do believe it is worth trying and he was good for a while, but just couldn’t get back to where he was after 5 minutes. It was the first time I saw him without the oxygen tubes and it was lovely to see his face. They also agreed to start doing every other feed as a bottle attempt….Finally! This will get him more use to eating from a bottle.

            Pop Rock and I were trained on CPR (well dad re-trained) and how to place NG tubes for babies. I feel confident I could do either of these if they needed to happen, but I hope I never have to use them.

Check out the wiggle worm

"[on why he never wrote an autobiography] Those who like me already know me, and those who don't like me wouldn't want to read about me anyway."- John Wayne

October 28^th: Okay this blog will be in two parts. Part 1 will talk about how Duke did today; Part 2 will talk about how Mommy did today. So if you are here to read about Duke you should just read part 1. If you want to read about my hysterical fit I had today then read past part 1.

Duke- Today was Duke’s first full day at Rehab and he was his usual charming self. He cooed when the occupational, physical and speech therapist came, which they thought was cute, but excellent because he is finding multiple uses for breathing. He was observed by them and they were impressed by his movements for someone with low tone. Duke showed he is trying to center his head naturally than having it fall to one side or the other. He then proceeded to have a huge poop and the examination was over.

            Duke moved down to .5 liters of oxygen today and his vitals were crazy good. He hasn’t destated since coming to rehab. He has been breathing with a little more noise, but it is all him breathing. In fact they took him off the air for about 1-2 minutes and he didn’t drop his breathing or fuss during the move.

            Feeding went well today he was awake for most of the am feeds and got 6ml and was very awake for the afternoon and took 13 ml from the bottle.

Crystal- I hate this place! I feed like my parents just dropped me off at camp at a crappy camp after having me spend a week at the Ritz and I want to go home. I want to call them, have them pick me up and we better stop at McDonald’s on the way home.

            My day started by the nurses telling me Duke only at 2ml by bottle last night, which he hasn’t done since he started bottle feeding. I was told this was because he was sleepy. I asked why didn’t they wake him up…. They didn’t like that. The babies in the ward are criers and their alarms go off a lot.

            I was introduced to the speech, physical and occupational therapists at the same time. These 3 ladies were over my shoulder as I was feeding Duke all giving me their advice. Each lady told me what they would be doing for Duke for the next couple of weeks, and the next couple of weeks, and the next couple of weeks. I started crying because they were talking about weeks after weeks. I may have pissed off the speech therapist because when she was asking me questions while I asked her why she didn’t read the email the speech therapists from Children’s hospital send her. That didn’t go over to to well.

            While talking to the 3 therapists the hospital the hospital psychologist came in. I thought the psychologist was here for Duke….nope it was for me. She saw I was crying and told me crying was a sign of strength…………nope not to me. Then she started asking me questions and analyzing me, to which I said to her “B**** you don’t know me!” Okay I didn’t say it but I thought it and just started answering uh huh as she kept talking.

            Next the social worker for the ward asked me to come in and talk with her about when I was to set up the meeting for Duke’s plan. When I told her about plans if I did or didn’t have to go back to work next week I started crying she told me everyone cries and I should go back to work a soon as possible and just visit my son on the weekends. How can I not see my little bird every day?

            By this time I tried to get lunch at the cafeteria but they don’t accept credit card and there are no ATM machines. This place is from the Stone Age!

            I took a moment and ate some trail mix from the vending machine and took a moment outside the ward. When I got back I was determined to hold Duke and read our book together. Then finally someone came to progress my baby rather than just piss me off. Hello respiratory therapy. Two ladies came in to change Duke over into a new meter which will allow him to decrease liters by .10 percentages. These ladies talked to each other and not to me. I thanked them when they left and was so glad they didn’t want to talk, but made a change to get my baby home.

"The script really called for a younger guy. I felt awkward romancing a young girl at my age."- John Wayne about Donovan's Reef

October 27^th: I may need to clarify something about Baby Rehab. Duke is in a separate facility for Baby Rehab, not home and going back and forth to the facility, though I wish he was home. The place where Duke is now is the Hospital for Sick Children in DC, which sounds worse than it is. Where Duke currently is rehabbing is for babies that don’t need the intensive care of  a NICU, but still are not ready to come home. Duke qualifies for Rehab with his drinking problem (the rehab jokes are going to keep coming).

(Duke looks like my sister in this pic)

            Our day started off with getting Duke prepped for the move with packing up his room and the very cool things the ladies in reception have made him. We did our normal routine which was a little bottle feeding (5 ml) and ensuring he was clean before transport came. The transportation unit came to transport Duke to Rehab (a baby seat strapped to a stretcher…weird).  Duke slept through the ride and his vitals were up, it is like I said I knew he would be a good driver because this was when he didn’t kick me while I was expecting.

            When I got to Rehab I had so much fun….filling out paperwork and finding out how much my co-pay was. I then got to see Duke get an exam which looked painful but he had his eyes open and cooing at the nurses so it must not have been too bad . Of course he loves the nurses and the nurses love him. Then I spent the rest of the afternoon labeling bottles of breast milk (110 bottles).  Duke has 4 roommates, which leads to a more noisy room, but he slept through it. Duke seems okay with this place. I am sure to get use to this place, but Children’s Hospital was so amazing I am spoiled.

"Sometimes kids ask me what a pro is. I just point to the Duke [John Wayne]"- Steve McQueen

October 26^th:  Today was Dukes last full day in the NICU of Children’s hospital and he is off to Baby Rehab (or bottle boot camp as the Speech Therapist called it). Duke was crazy tired today so he slept for most of the day. He sleeps similar to myself on his arms and his hands over his face, which is hysterical. His feeds were good today with 5ml in the morning and 6ml in the afternoon.

            It’s funny when people at hospital say “We’ll miss you” I am not sure how to respond to that because….I am not going to miss being in a hospital or rehab. Dont' get me wrong the doctors, nurses, techs, receptionists and specialists have been WONDERFUL. I am sure there is proper leaving the NICU to go to baby rehab protocol, but they don’t make books about that at Borders (not that I looked today after leaving the hospital). Hopefully tomorrow I will have better responses because I know the intentions are sincere.

"Don't say it's a fine morning or I'll shoot ya." John Wayne (McClintock)

October 25^th: We talked today about what is going on with Duke’s oxygen levels and his feeding so the doctors increased his times again to over 30 minutes and he was struggled at first, but his feeds got better after the initial one.  It’s a tricky balance to get the right balance and position for my little bird as he eats. He defiantly knows how to let us know when he was uncomfortable and wanted to be held. This always calms him with a little reading and back patting.

(Ready for Halloween)

            The bottle feeding went well today. His first feed was 5 ml and he destated twice. The speech therapist gave me a recommendation for his next feed of doing 3 nutrative (deep) sucks then taking the bottle out to make him get a pattern of breath. The next feed he took 15 ml (HUGE!!!). He will have a good start of bottle boot camp at rehab.

“Women have the right to work wherever they want, as long as they have the dinner ready when you get home"- John Wayne

October 23^rd: This was my weekend to do the feedings without the speech therapist and Duke did well. He took 5ml for both of his feeds today. Mom and I went on a tour of the baby rehab, which is nice, but Children’s is 1 billion times nicer so it was an adjustment to see it. They moved his air pressure to 1 liter today and he didn’t care for that too much and we had to work a lot of position to ensure he was breathing deeply. Other than that it was a quiet day for Duke.

October 24^th: Went early to do the feedings so Duke was on schedule for feedings. Duke usually doesn’t do as well with his first feeds, but he took 11 ml on his first feed and didn’t destat more than once. He was very awake for the afternoon and very cuddly. He is a fan of holding hands and looking. His smile reflex is kicking in and he will smile which is heart melting. I haven’t caught a good one on film yet, but I will. His second feed he took 7 ml and destated twice. The afternoon was more challenging than the first because he was more tired because he was awake. I am going to talk with the doctors tomorrow about his breathing because if he is still struggling with 1 liter we may need to put off baby rehab for a couple of days to ensure he is 100% good off the oxygen. I would rather be safe than back at a hospital.

**Yes I know the quote isn’t kosher now a days, but I was his feeder today and thought it made the quote ironic**

“And to all you folks out there, I want to thank you for the last fifty years of my career. And I hope I can keep at it another fifty years - or at least until I can get it right.”- John Wayne

October 22^nd: So long Vapotherm hello regular hospital oxygen. Duke is down to 2 liters and 21% oxygen as usual. He didn’t enjoy the switch of machines at first because it is a more dry natural air, but he got over it after about a half hour and was content.

            Duke had two bottle feedings again yesterday. Both feedings he took were 5 ml and like before he does better with afternoon feeds than morning. He is a little more awake and consistent with his suck, swallow, breathe patterns. I was nervous about losing ground with Duke on his drinking over the weekend so the speech therapist and doctors agreed to let me do two bottle feedings over the weekend, but I must have supervision from the nurse to watch his vitals. I am getting to be a pro at balancing Duke, 4 wires/ tubes and a bottle while getting Duke out of his crib. The speech therapist always looks nervous, but I have to learn.

            Today was also Duke’s hearing test, which is nerve wracking when you see the lady watching a screen and your baby not move. Apparently the babies don’t react, just their brains. But in retrospect I shouldn’t have expected something like him raising his hand or jumping with loud sounds. They connect electrodes behind your ears and on your forehead. They place little sensors in the ears like headphones and they play a tone about the sound of a whisper. The sensors measure the brainwaves to see if they hear the tones. Duke passed, phew!

“Well, you like . . . each picture for . . . a different reason. But I think my favorite will always be the next one.”- John Wayne

October 21^st: There is nothing worse than a grumpy baby and that is what I had today. Duke didn’t want to wake up for his 9am feeding appointment with the speech therapist. He was fussy during all of his cares because we were waking him up. He hated his shots today for preventing RVP (preemies are prone to respiratory infections and this prevents them) and pushed my hand away when he got it (see below pictures). Finally for his 3pm feed he kept covering his face so we couldn’t count his sucks to see how he was doing. Grumpy Grumpy Grumpy.

[Holding my hand]

:( [He was over it 5 seconds later]

            The good news is Duke went down to 2 liters on the Vapotherm, which is excellent. He did well on 2 liters and didn’t destat once with the change. The doctor said he will move to 1 liter tomorrow if he can get this one down packed overnight.

            The annoying news Duke is not in need of intensive care anymore, but he can’t drink from a bottle yet. Therefore where does he go? It reminds me of what they say at closing time in a bar “You don’t have to go home but you can’t stay here”. Personally I want him to come home, sleep in his bassinet and hang out with me while I make dinner, but that can’t happen with him not eating from a bottle. They are probably going to move Duke to a Baby Rehab early next week where he will learn to drink (unlike Adult rehab where you learn not to drink). Duke will work with occupational and speech therapists to teach him to drink from a bottle which will allow him to come home. This was very tough for me to hear because I thought he would go right from Children’s to home, but for some babies drinking doesn’t come naturally Duke is just one of those kids.

“When the road looks rough ahead, remember the Man Upstairs and the word Hope. Hang onto both and tough it out.”- John Wayne

October 20^th: I didn’t have to lay the smackdown today because the speech therapist did that for me today. I got there before 9 and she walked in on time. She talked with me about the bottle and what I need to look at with him and some positions to hold him. When I did the first feeding with Duke today the doctors came for rounds and the doctor, speech therapist and nurse all heard what we are going to do. Speech therapist will work with Duke and I at 9 & 3 on his bottle feeding.

           

            During his 3pm feeding I was a little nervous because Duke woke up at 2 and didn’t go back to sleep until 10 til, and he likes to fall asleep when it is feeding time. Luckily he woke back up. Duke is his mother’s son because he isn’t a fan of strange people touching him. The speech therapist tried to get him to latch onto the bottle by putting her finger under his chin…Duke didn’t like it. Once she let go he started sucking on his own. The speech therapist made a comment that she guessed he didn’t like to be touched and I hide my smile.

            Pop Rock held Duke for the first time today (he was a little apprehensive because he has been so tiny), which he said made him feel, “like a gorilla holding a daisy.” Duke did great with dad he didn’t destat once during his time holding Duke (sorry Grammy you just take his breath away when you hold him).

“When you come slam bang up against trouble, it never looks half as bad if you face up to it.”- John Wayne

October 19^th: For those who know me are aware that I am an over-communicator. I don’t want to leave things out or miss things I am suppose to do. I talked with the doctor, the nurse and the speech therapist about how many times a day Duke is to practice his bottle feeding. Each one had a different answer…..not a fan. Tomorrow I will get a unified answer which will allow me to know where Duke’s progress is with feeding. Duke should be off the oxygen this week which leaves bottle feeding to get him home. Can you tell I want to bring my baby home?

            Other than me spazing about miscommunication Duke had a good Day. He is chilaxing at 3 liters on his vapotherm and the doctor said tomorrow we go to 2. He also was really working his pacifier today, which most moms think of a way to shut their kids up where with Duke it is a learning tool for him to get his bottle on.

“I drink for comradeship, and when I drink for comradeship, I don't bother to keep count.”- John Wayne

October 18^th:  Got some updates on Duke’s size today. My little bird is 19 inches and weighs 5 lbs 7 oz. His belly is now 27 cm around and he is still eating his 46 ml of breast milk. Non of his hair has fallen out (ha!) and his eyes are dark and I can’t wait to see if they go green, hazel or brown.

            Duke is more alert now and aware of his surroundings. He enjoys staring at his bear and reaching for him, but he hasn’t caught him yet. He also knows he has tape on his face and touches It frequently. It makes me nervous to see him touching it because I am afraid he may pull out something he shouldn’t. Mostly Duke and I read, make kissy faces at each other and play with his ever curious hands.

            The speech therapist came with him again today to work on bottle feeding. She said Duke has a strong suck and he ate 7 ml before falling asleep. She said he would do a great job eating if we could just stay awake.

“A man's got to have a code, a creed to live by, no matter his job.”- John Wayne

October 17th: Sunday's in the hospital are days when nothing happens.......but today Duke proved them wrong. He moved down to 4 liters on his Vapo-therm and was breathing BE-A-utifully! Tomorrow is Monday rounds where the talk about what he will work on for the week hopefully they talk about the big D word....Discharge.

"I'm the stuff men are made of!"- John Wayne

October 16th: Today Duke has been alive and kicking for One Month. As you have been reading Duke has had times of steady reactions and times of great strides. Each day I am amazed by how much my little bird has grown. As he gets bigger every day (if you consider under 6 pounds big) the closer he is to coming home.

      Today Duke had a photo shoot with Aunt Candi, she tooks some amazing pictures of Duke in his cowboy hat (inside it that is), in his pumpkin hat, some mommy son shots and nice face shots. Most of the pictures Duke looks pissed because we have him awake and aren't hugging on him. However my sister is a crazy amazing photographer and there are a lot of amazing shots. I am going through them now and find it hard to pick favorites becuase he looks so cute.

     Finally thank you to everyone for the love and prayers you have given to Duke and I over the past month. In the past month we have received amazing words of encouragement, support and . I will be continuing the blog, which according to blogspot I have had over 2,000 views since setting up the Blog for Duke. Thank you so much for the love and support.

"I don't act . . . I react." - John Wayne

October 15^th: Day two of bottle feeding. The speech therapist was to come by today to help evaluate what Duke needs to be able to bottle feed the best. When I got to the hospital it was about 2 hours until feeding time. Duke was more awake than I had ever seen him before. He was all cleaned up and his feeding tube was moved to his nasal cavity (which the nurse says is better for babies for when they start learning to bottle feed).  He was spending the first part of the afternoon looking around and at me. There were kissy faces, tiny sneezes and neck cranes for forehead kisses. When it came time for Duke to work with the speech therapist he was exhausted and wanted to sleep. I totally maned up (or mommied up) today and not only gave the eye drops today but also did his feedings with the bottleHe got a couple of drinks in and the therapist said she was going to bring in a better bottle for him to start working on with him on Monday since this one was a little too fast flowing for him.  .

            His oxygen pressure was moved to 5.0 liters and 21% oxygen on the Vapo-therm, which means he has moved down 3 liters and 15% oxygen in 5 days. Duke is determined to come home is what the doctors told me today. The nurse loved working with Duke because the new baby next door was a bit needy, where Duke is chill and not a crier.

            Funny story: His nutritionist asked me today what I call my little bird (John, John Wayne, Johnny), I told her I call him Duke. She laughed at this because apparently the residents on the floor have been calling him The Duke without knowing his nickname.