40 Days Old - News You Can Use

This just in. I am astounding. Feeding and baby skills I can now suck my pacifier while feeding. It helps me to digest my food. If I had a rough transition into feeding time, it is best not to give me a pacificer because I will freak out on you. I currently have to be in a good mood to use my "bink" effectively. I now eat 34 ml of mega-mommy's-milk every three hours. It is a special recipe of mommy's milk, extra calories, extra protein, extra calcium and a few dashes of other stuff for good measure. All the extra stuff is added so that I can grow faster and catch up on my size. This way when I am a toddler or teenager you won't know that I was a premie because I will be a more normal size. Breathing and lung development This is still my major challenge. I have transitioned from an oscillator to CPAP to nose cannulas. I do all my own breathing now, but I am not very effective at it. Sometimes I will breathe very quickly and that doesn't help my blood to carry the oxygen through my body. I try to breathe slowly and deeply but then I fall asleep and forget a breath and that's not good either. I need to grow new lung tissue (babies do that) so that I have lung tissue that has never been sick. Unfortunately, it takes time to grow lung tissue and so a lot of patience and understanding is required. While I don't A(apnea or stop breathing) and I don't C(Cyanosis or turn blue in color), I do D(desaturate or decrease blood oxygenation) which is very typical of babies like me. However, it doesn't make it any easier for Mommy and Daddy to watch me do it. I am currently on 1/2 litre oxygen at 50%. I have stopped taking inhaled steriods, but I might start up again because it helps me exchange oxgen with my blood.

.

Blood and heart

My heart is doing a great job. It beats normally for a baby 130-180 per minute. I usually increase my heart rate when I am filling my diapers or when the scary water faucet turns on. I'm a baby I get scared or startled. I seem to be sensitive to sound and tend to like things very quiet. Have to been to Mommy and Daddy's house? Then you know I will be just fine. They are very quiet. I do have small B's(bradycardia or drops in heart rate) which are very scary for everyone. But, none of nurses have had to coming running to save me, yet. I am usually able to self recover and they last a relatively short time. My "crit" is low and I need more iron and red blood cells to help the blood carry oxygen effectively. They are now giving me iron and EPO to increase the red blood cells. The EPO seems to be working because my "retick" is now 4 vs. 2 and I am aiming for 5.

Other Stuff Most of the stuff they are giving me causes other parts of me or my body fluids to go loopy. So the doctors are watching out for my potasium, sodium and electolytes as well as my blood quality and content. I haven't have any more IV fluids and I am finished will all my antibiotics for now. If I get an infection, all my progess could be wiped out. So, unfortunately when you visit me for now, you can look at my luscious hair, tiny fingers, "chubby" thighs and button lips, but NO TOUCHING THE BABY. Sorry, I am also sensitive to touch. I love Mommy's hands and fingers. I love to kangaroo on both Daddy and Mommy. And, I have a secret affection for some of my nurses hands. Otherwise, we are going to have to wait for a while longer before we get "skin to skin."

Weight and Length

Breaking news. I am 4 pounds. TA-DA!!!! Pretty soon I will be wearing "big" clothes. I am now 16 and 1/2 inches. I spend most of my day sleeping and growing and gaining weight. We have to be careful about gaining good wieght and not water weight. When I have water in my lungs, I take a dose of lasix and this brings my regular weight down a little bit, but I can breathe much better. They measure my head and tummy twice a week but I don't know why or what it means.

In Summary

I am doing well and as expected. The doctors still have concerns about my lungs and blood. My eyes are fine and improving in their ability to see and my ears are just fine for now. I am trying to grow new things and get bigger and gain weight. It is a slow process and very hard for Mommy and Daddy to watch because I am still not "out of the woods" or able to come home yet.

We love to be together, the three of us, and that's when I do best. Have a good weekend. I will be six weeks old on Saturday night. Have a cupcake to celebrate.

Good night.

36 Days Old - Doing What Comes Naturally

As you may have guessed, I don't have a lot going on right now. I sleep most of the day and then I can choose one of three activities 1) kangaroo with Daddy, 2) kngaroo with Mommy or 3) premie preschool with Mommy and my nursing team. I also eat 8 times a day and fill my diapers in between feedings. I have lab work and charting done by my nurses and I am still trying to improve my breathing and grow. It's not that interesting to photograph and write about. However, I will attempt to make this interesting. Doing what comes naturally is different for each of us. We are all different. I like to wiggle while I am sleeping. It gets me into trouble. Sometimes I get stuck against a wall or door (my nurses think I am trying to escape) . . . I also like to contort myself into interesting shapes. While this may look funny, it is great for my airway passages as they are fully open and unkinked in this position. For my fashion consultants, I am wearing a baby pink kimono shirt by Gerber in the up to 5lb size. It is soft and comfy and down to my knees. (currently) Natually, I also like to sleep and repose. I love to lay on my tummy and especially on my Mommy and Daddy. I am very possessive of Mommy and usually sleep in this position but turned over and on my tummy. I am too little to hold all of Mommy but as you can see, I am trying my best to get a hold of most of her. Did you notice something different on my face ? They moved my feeding tube. This is a great thing for me because it is more comfortable and out of my way. I can now reach my mouth with my fingers and I don't tongue my tube anymore and get myself in trouble. Pardon me, a yawn. For my fashion consultants, I am weaing a cherry pink animal friends bodysuit (onesie) by Little Me in the 0 to 3 months size which is two sizes to big for me. If I am too wiggly, I get my whole head caught in the sleeve. My CO2's get a little high and then my people notice that my head is missing.

Now, I am also working on breastfeeding and I am not taking pictures. We call it premie preschool because I am just getting familiar with the equipment and my natural instincts. I am too young and too little to even start attempting professional level breastfeeding. However, I would like to say that I am very good at the nuzzling when I have my teachers with me. I am not ready to go solo for several weeks. Now there was something else I was going to say. What was it ????

Oh yes. I m wanted to share this picture with the many past and present members of the quilt group. Here is one of the "machine quilting practice quilts" that we donated to the NICU for womb covers in use. Desmond (no last names) says Thanks.

Have a good week. I'll try to write something interesting a few times if I have the energy.

1 Month Old - Happy Birthday to Me

June 19th was my first month birthday. We didn't play pin the tail on the donkey, we babies don't like pokie things. We didn't play pinata, we babies still need help with large motor skills. We didn't play musical chairs, we don't use chairs yet. But, we did do a whole lot of other things. First, I graduated to a new isolette (bed). It does almost everything my old isolette (bed) did, but its a bed for big girls. This bed does not have an emergency pedal so that the whole beds opens instantly for the doctors and nurses to get at me quickly. I don't need that much help anymore. Second, I graduated to nose cannulas. These blow oxygen in my nose, but I take the deep breaths on my own now to fill up my lungs. I need a bit more oxygen now, but I am still getting better at breathing. My big problem now is remembering to breathe and heart beat at the same time. Sometimes, I get too tired and forget one or the other or both.

I like my nose cannulas because now my hands can find my mouth and I love to suck on my fingers and sometimes by thumb. My CPAP machine used to get in the way of my hand and I would get very mad.

Third, my head scan came back showing improvements. That's really good. For the medical folks out there, my ventricals are reducing in size and fluids are being reabsorbed into my body. All Stage 1 babies get some type of bruise inside their heads and now it's a waiting game to see how the bruise heals. I seem to be doing a good job right now.

Fourth, my feeding consultant says its time for me to play and learn how to feed the natural way. So, on Friday, Mommy and I will start playing at feeding. It's sounds like lots of yummy fun. I hope I don't get too tired.

As you can see, I am quite sleepy these days. I am working on growing, just like when teenagers spend the whole day sleeping and eating. (I am a big girl.)

And lastly, I spent more kangaroo time with Mommy.

I am bushed. Thanks for sharing my one-month birthday. See you later.

Oh, by the way for my Nintendo friends, Gavin is now my neighbor. He looks very strong and likes to kick his legs in the air a lot. His Mommy and Daddy look very tired.

27/28 Days Old - I'm a Big Girl Now

What is different about me today? Can you tell? Look at some of my early pictures and you may notice 1) my skin is starting to fit me better 2) I've lost most of my wires and 3) I look good on pink . . . And, there's something else . . .

I am wearing clothes now. That's really good cause now I can almost regulate my own body temperature. And, I can also change my "look" more easily. Did you see my "bunny toes"?

Here I am on Mommy in my bunny jammies with my green pacifier and nose cannulas.

Here I am on Daddy with my bear and ducky togs. This is a better picture of my pacifier. I only like to suck on the ball end, otherwise it is too much of a mouthful.

Have a nice night. I will try to write tommorrow.

26 Days Old - A Song For Daddy

I'm so glad when Daddy comes home, Glad as I can be.

Clap my hands and shout for joy,

Then climb upon his knee (chest). Put my arms around his neck, Hug him tight like this. Pat his cheecks and give him what?

A great big kiss.

Happy Father's Day, Daddy.

25 Days Old - Good Baby Day

Don't have ROP yet. If I do get it, then the eye doctors can do stuff and it most likely won't be a problem in the future for me. Head scan looks the same as it did when I was born. That's good for now. Shhhhhhhhhhhh! I am trying to sleep. No, I am trying to find my thumb. No, Grandma, I am not tiptoe-ing throught the tulips. Isn't this a pretty blanket though? I'm off my drugs now and didn't go into withdrawl because they weaned me very slowly. I have such good nurses who take great care of me. I am losing more of my wires everyday. Soon, I will be easy to pick up and hold. Right now, I have to call my team to lift me up and give me to Mommy.

Bye, bye for now. You will want to read about my tommorrow and see more pictures of my Daddy and me.

22/24 Days Old - Yahoo, Stage 2

Today I received my first official award. Isn't it beautiful with the purpley stars? I didn't want to tell you before, but I am quite certain that I have just passed from Stage 1 into Stage 2. I am right on schedule and have had 12 good days in a row. Let me tell you about Stage 2 This stage is all about growing and gaining weight and is generally for babies 30-36 weeks in gestation. I never would have thought that life could be so complicated. Some days I feel great and want to get up and look around. Other days I don’t feel so great and just want to sleep. If I am feeling really low, I may drop my heart rate a few times or forget to breathe a few times. Hopefully, I have better control over my heart rate and my breathing at this stage. I am off of my breathing machine and on CPAP working toward nasal cannulas. I am awake for longer periods of time and I am even more wigglely than ever before. I can scare myself by accident and my heart rate will jump really high. You have to learn how to help my calm down so that I don't burn up too many calories. I still can’t handle a lot of activity. I still like to do only one thing at a time. My bed is on a slant (helps with the digestion) , and I tend to slip down to the bottom of the bed. So , I have a diaper roll at the foot of my bed to keep my from sliding out of bed. I like boundaries, anywhere, anytime. If you are holding me, its best to lightly hold my arms to my chest (like I am hugging myself) with a light swaddle so I don’t have to wave them around. I really want to save my extra energy so I can gain more weight. I like to be held skin to skin a whole lot. Not for very long, but I helps me to calm down and to eat and to breathe and to sleep and to maintain a good heart rate. I only wear a diaper, so If you open up your shirt, I will snuggle into your chest. We can be together until I brady or desat (I'll tell you what that is later) , which means I want to be alone back in bed. I love to be held, but I also want my rest. I need to wear a hat to keep my head warm and to keep my CPAP mask on properly. I need head and neck support to help me breathe. I don’t want to get cold or get too fussy. These things all burn up extra calories. I want to save all my calories because I want to gain weight. When you hold me I want to look at you. I enjoy looking at you. But when you talk, I have to look away because I get overwhelmed. This is called gaze aversion. I’m still taking things slowly so I need a time out from the stimulation. As I adjust I maybe able to look back at you. Don’t take it personally; my immature nervous system gets in my way. I love looking at your face. My pacifier really helps me. It helps me calm myself and helps me organize myself. Let me show you what a great thing it is for me. I like to relax and curl my legs and arms underneath me. You can hold me in this tucked or flexed position. If I suck on my pacifier while I am being tube fed, it helps me digest food. Time to go, I have to eat some more and take a nap again.

21 Days Old - I Believe, I Believe . . .

I believe in Santa Claus, the Easter Bunny, the Tooth Fairy and the Birthday Bear. On Friday, the Birthday Bear came to my house and left a party for my 3 week birthday. Mommy's friends from Nintendo provided the presents, Daddy made the food and Mommy opened my presents. It was a great time. We had our friend come and take pictures.

My presents were wrapped in all my favorite colors. Lots of pink, teal blue and lavender. Very pretty and very baby. I don't know why but both Mommy and Daddy were teary eyed when they saw the pretty presents. They said "Oh My" alot of times.

Mommy is trying not to cry in this picture, that's why she looks so funny. LW did you know that everyone in all of my family is musical? They play instruments, sing, hum and whistle. Mommy thinks my hands will be big enough to play the piano. Thank you for the presents and the music.

Oh, yes, I will be very pretty in pink and white. Pink is my favorite color. SHS even gave me a hat to accessorize. (You go girl.) I love to wear hats. They help me maintain my body temperature. Did you know that this is one of my graduation requirements? Thanks for the pretty clothes, hooded blanket and big girl hanger.

I love pjammies. These are so soft and cuddly. Can you believe that Mommy even likes to see me in green? I guess I look good in most colors. Thank you for the sleepy time clothes, PB.

Hey beach buddy. I love the bibs and all the cool beach clothes. Mommy and Daddy love the bibs. I hope I wear the right bib when they feed me or they might give me icky food. Thank you for the fun presents, GA.

Oh my goodness, you found clothes that fit me right now. I just found out that I might be able to wear clothes when I am 5 pounds. My friend, Clay, just started wearing clothes. I am almost 3 pounds now. Thank you for the petite clothes outfits and the pretty purple dress, TS.

Who's your Daddy? This is my Daddy. Hopefully, he will be having a good hair day when he does my hair. (That's what my new shirt says.) I love presents that Daddy loves too. And, being the girl that I am, I also loved pile of presents, too. Thank you, KB.

Somebody went crazy at the baby shop. Thank you for all the many gifts especially the dipes and milk bags. Mommy says I will use a lot of these. Grandma Cathy really loves the strawberry dress with the bloomers too. I love and will really use this "huge" bag of gifts, KB.

Oh yeah, a swing with music and a light show and a little toy for me. I will be able to play safely while Mommy is doing chores. It's pink. Totally love it. I think this is from a bunch of people. I can't read yet, but that doesn't mean I can't say thank you for a whole lot of fun and relaxation. I love doing what babies do. It's a big step for me. Step, do you think I will be walking soon? :)

So, Mommy did not get her wish that I would be born fully potty trained. Thank you to the whole Nintendo gang for the warm "bathroom supplies" and diaper changing organizer. (I can't believe I am talking about "bathroom" stuff.

Do you think I will ever be as big as the baby in the picture? This looks like a very nice place to take my many naps. Did you see it is made especially for newborn babies? It is so nice of you all (group gift) to find baby-things that were made with my special needs in mind. It's not easy being small, but I am getting bigger everyday.

Our friend was nice enough to cut Mommy and Daddy's blotchy wet faces out of this picture. We all love this present. I will be too small to sleep in a crib when I come home. This will be my bed until I get too big. (hard to imagine.) With this sleeping place, I will be able to sleep in Mommy and Daddy's room. We will be a happy family together every night.

Thank you all for your presents, good thoughts and prayers on my behalf. I am very excited to meet you all later this year. I remember hearing all your voices in Mommy's office. Thanks again from me and Mommy and Daddy.

20 Days Old - Daddy and Me

Do you know my Daddy? Do you think he is coming to tickle me? I hope he waits until I am much older to tickle me. I don't think I can handle it right now. I will grab his finger and maybe he won't tickle me. Oh, his finger is very warm. Daddy has very warm hands. It will be very nice to cuddle with Daddy durng the winter months. This is very relaxing holding Daddy's finger. I think I'll just stretch out for a moment and enjoy his company. Did you notice that I have a lot fewer tubes and monitors on me now. I am feeling much better and getting a bit bigger. Not as huge as Daddy but bigger than I was before.

Oh no!!! The other babies warned me about this. Daddy likes to squeeeze the "cheekies". Don't do it Daddy. Just hold my finger for now and next week I promise to spend kangaroo time with you. Please let me hold your finger. It helps me to calm down and improve my oxygen saturation levels.

Good Daddy. Let's do this some more. When you look at me and Daady together, you have to remember that Daddy is huge and I am very little. I am not going to show you, but I wanted to let you know that my bellybutton is healed and I have an "innie". Some people find this information very interesting. I don't know why.

19 Days Old - Face Time

Before you see my face, I want to warn you that any place shiny on my face is below several layers of tape. I won't always look this silly, but I can't help myself from pulling on my feeding tube. I have tape on my chin and under my nose to protect my skin from the rubbing of my masks. Picture 1: I just spent an hour on Mommy on the right-side of my face, so it is very flat on that side and puffy on my left side. And, I have funny crease in my face where my CPAP and pads are so that my skin doesn't get damaged. So, I have one chipmunk cheek. You look funny in the morning when you wake up too. Don't you? Picture 2: I have lots of hair. Now that I don't sweat as much you can see that I have brown hair. My eyelashes are blonde. I am peeking at you through my left eye.

Picture 3: Hey, you moved. Now I am looking at your through my other eye. You look the same from both eyes. You are very big and blurry to me. Yes, I am wearing larger diapers now. Do you always ask such personal questions?

I think I am getting a little bigger and a little better. I will tell you about it tommorrow. I have another appointment right now.

What just happened? It seems like my face exploded and there's slimy stuff all over it. Note to self, sneezing and snot are not pleasant things.

17/18 Days Old - Baby Escapes

Tuesday , I went on a field trip for an hour to sleep on Mommy. We had really great cuddle time. I had really high staturation levels and didn't fuss at all. Mommy smells good to me and makes a lot of really wonderful noises. Her heart goes thumpety-thump and her voice makes her chest go buzzety-buzz. And then, we she burps, I know I am right at home. (Mommy had severe indigestion while we were together.) All these smells and noises give me very fond memories. If I am very good on my numbers for the whole day, then Mommy and I get to spend an hour together. Don't laugh at my funny-looking picture. I am wearing my nasal prong CPAP mask. I told you it was uncomfortable and not too attractive. But, I can breathe with it on and my lungs are learning how to work in this big world of yours. I am working on growing bigger now so that my lungs can get bigger too. Then, I should be able to breathe regular air.

As you can see, I highly recommend sleeping on the Mommy. It is very relaxing and comfy. Do you have a Mommy to sleep on? In my picture you can see my feeding tube. And that's just tape on my chin because I like to wrap my little fingers around the tube and pull. I can't help it. My arms and hands are sometimes not very obedient. Guess what I did on Wednesday. Yes, I went on a field trip to Mommy again. But, this time, we did kangaroo care time and we were skin to skin for over an hour. My Mommy needs a suntan. She is very, very white. That's my head-gear to keep my CPAP on. But, I am too wiggly and they have to replace it with a hat for me. I will show you pictures of me in my hat later. I want to tell you about kangaroo care time. It is very good for me and also for Mommy. In a place where babies didn't have incubators and they didn't survive very much, doctors asked the Mommies to wear their babies on their chests on tummies skin-to-skin 24/7 after the babies were born. The babies started to survive a whole lot more and so the doctors spread the word about how to help new babies get better, thrive and survive. So, now Mommy and I have kangaroo time and I like it very much. P.S. Today, during kangaroo time, I started to pat my Mommy and wiggle my little fingers. She is very warm and soft to my touch. And. tickle-ish too.