DEECON MOVES INTO A COTT

What a big boy.. we came into the NICU today and had to look twice. Where his incubator stood, there was a cott in its spot. It was a immediate sense of pride, my little man was now 1855grams which is 4 pounds 1 oz.. I so look forward to bath days to find out how much he has grown.. With each weigh in he growns so much, which in turn keeps his feeds increasing. He is now at 32cc's every hour and a half. They have been making his feeds larger at the same time as putting it in his belly over a shorter period of time. This is called bolus feeds. It helps Deecon prepare for regular full term feedings every 3 hours. The doctors have now challenged Deecon by finishing his Aldatizide meds for his fluid on his lungs as well as his sodium shot. Deecon did not like this challenge at first. He fell into a pattern of desaturating a lot, which made them have to increase his oxygen from 50 to 120. They say that this is just a rebound from the major medicine changes recently made, especially him not getting his Aldatizide. They say that it gets worse before it gets better, so we will patiently wait for the better to come. Deecon has previously been at high risk for a disease called Cogenital Adrenal Hyperplasia, it is an autoimmune disease. This is one of the 26 disorders that are tested in the new newborn screening tests. He had a high count during the first screen and we were awaiting the second test results. In my heart I feel that it is negative, he does not show any signs of this disease. So we waited for almost a month patiently for the results and again the second test came back positive. They still have not made a confirmed diagnosis, they now are testing him for a third time.. They are thinking as I am that he does not have it. This testing system can give false positives, and I am in hope's that my son is one of them. Sometimes babies are stressed out and they can produce high readings for this testing. So in another month we should get that last final negative result. I can't wait. This disease effects one in 10, 000 babies and my son is not one.. Some good news is that Physiotherapist came in today and said that his muscle tone and movement looks good and he is making his milestones so far.. she will continue to examine him and make sure continues to develop according to his age. Today was another bath time, boy do I love bath times. He is just a doll in the bath tub. He loves it soo much and is so awake and aware during and after. We usually kangaroo to get his temperature back up. Rub a dub dub.. my baby loves his tub:)

DEECON'S FIRST BREASTFEEDING ATTEMPT

We have been able to handle Deecon a lot lately. Whenever possible we are caring for him, changing diapers, getting him dressed, bathing, cleaning his face etc. We've been holding and kangarooing him a lot lately as well. When Mommy was kangarooing last week Deecon started to pick his head up off my body and he seemed to be trying to flip it from side to side. The nurse said that that was the beginning signs of him rooting for my breast. He has been showing major signs of rooting and showing interest in breastfeeding, sucking on his fingers and thumbs. Even when Daddy was kangarooing Deecon seemed to be rooting. He actually had his first head flip while kangarooing with Daddy. It was so exciting :) What a big boy.. flipping his head on his own for the first time already.. With the rooting signs my nurse Diane, which is also my lactation nurse, decided we should try to breastfeed Deecon for the first time.. As she said it tears filled my eyes. It was now Mommy's turn to take over and it all started to feel real. I have worked so hard over the last 60 plus days to get my milk supply in and keep it strong, now an amazing 1200ml/day. So the moment came and I sat there as Diane showed me a couple of options for baby positions, in front on my lap or a football hold. She showed me how to get him interested and to be aware of when he is rooting so that I get a good latch from him. Daddy laughed as we all did, as Diane had to forcefully push Deecon to me to latch. He actually did excellent his first time. She got him to latch numerous times and he did suckle and swallow milk.. I noticed that he would latch, suckle, swallow then it was so cute because he would have to take lots of breaths in between. It was hard work for him, he was so used to getting the food directly delivered into his belly with no effort, by tube. Diane said it was good to be observant because that is just how preemie babies breastfeed at first, with lots of breaks for breaths. So that was sooooo exciting. I was so happy that it was a positive experience because I was so nervous of how he and I would do. Diane actually said that he did way better than she ever expected because he was only 33weeks old gestation. She said some babies don't catch on until even after 36 weeks. I am so impressed with Deecon and his first try, so we are going to try again tomorrow and next week we are going to try at least once a day. Diane is off next week so I am excited to try and do it all by myself :) We are not actually weighing him and seeing how much milk he is getting yet, we are basically just introducing it and getting him to practise the latching technique. What a big boy he is, making Mommy and Daddy so proud. Mommy can't wait to feed him everyday by herself and bond with him.

DADDY'S HELD DEECON FOR THE FIRST TIME

Daddy was so excited, he was finally able to hold Deecon like a real baby. It is so special to be able to do this. Daddy was able to look his son in his face and talk with him. Deecon has been looking around and has been more observant, as well as has been showing more facial expressions. It is so precious to hold him and listen to his cooing sounds. It's simply priceless. While holding him we are able to touch him and kiss him which is such a great feeling. His ears are beginning to gain more cartilage and take shape. He definatley has his Daddy's ears:) Next Daddy was able to give him a bath. This time Deecon's face was simply adorable. He frowned at his Daddy for the first time, but soon fell into his hands and loved his bath as usual. We love bath time too because we have his full attention and he is always nice and awake and aware. It is also an opportunity to see his cute naked face. :) Every bath day is an opportunity to weigh him, he has been doing so well with his feeds and therefore packing on the pounds. As Daddy would say What a fatso and Aunt Tissy calls him a little piggy:) He is now an outstanding 3 pounds 10oz.. :) They have now changed his feeding schedule to what they call Bolus feeds. This means they are feeding him three hours of feed over a two hour time frame, which is 29cc's every two hours. He is tolerating his feeds very well, what a good boy.. Mommy and Daddy are so proud of him. xoxo

DEECON'S IMMUNIZATION SHOTS

Mommy can't believe it's already immunization time. It's a pretty scary decision to make when Deecon is only 1500 grams, approx. 3 pounds and 5 ounces. We had so many questions about his immunizations. It was two shots, one in each leg.. which the doctors described as the meaty part of his body. I thought what meaty part, even though is reached double his birth weight he is still so tiny. One of my main questions was do they give the same dosage of immunization to a preemie baby as they do full term babies. Her answer to this was yes they do, they don't change the dosage. That to me was a scary answer. We were really hesitant, but the doctors assured us that they do these immunizations all the time. Still we weren't on board right away, for fears of autism and other major side effects. The doctors made light of the autism claim and explained that the study that tried to link it to immunization was an old study and was inconclusive. The two shots were immunizing for Pertussis, Diphtheria, Tetanus, Polio and Infant Haemorphilus type B, and the doctors pointed out that the slight side effects known of these shots, swollen red spot or increase in temperature far out way the chances of getting any of these serious infections. Pertussis or other wise known as whooping cough, and may cause serious complications if contracted. Diphtheria is a disease of the nose, throat and skin, killing 1 out of every 10 who gets the disease. Tetanus or lock jaw is a serious disease that even with the immunization kills 2 out of every 10 people gets it. Polio is a dangerous disease you can contract through eating and drinking anything containting the germ, which can cause nerve damage, paralysis or even death. Haemophilus influenzae type B also know as meningitis, which is a serious infection effecting the fluid and lining that is covering the brain and spinal cord. This causes developmental problems, deafness, blindness and death. Epiglottistis is another infection that it can cause which is an infection of throat near the voice box, causing infections of the lungs, bone and joint. When looking at the big picture, and trying to forget the unknown side effects we decided that it was in our best interest and Deecon's to proceed with the two immunizations. He got them in the morning of the 8th by the time we got up to the NICU. We were warned that he may be lethargic because of the tylenol that he was given and perhaps not himself but in fact he was wide awake and his cute self. After this we met with the endocrinologist to discuss his results from his blood tests, testing again for CAH -Congenital Adrenal Hyperplasia. She informed us that they had sent the blood away and that the second test unfortunately came back high in testosterone levels and produced another positive result. With Deecon being off of his Alactizide medication his sodium level has been much better and they have had to lessen his sodium shot and it is soon to be discontinued. She then stated since his sodium levels are back to normal she does not see any signs of the CAH disease and that sometimes babies that are under stress will produce a higher level and therefore produce a positive result. So for now we are not taking any action regarding the disease but will retest him in a couple of weeks again. Mommy and Daddy were very scared at first for this disease only effects 1 in 10,000 babies and Deecon couldn't possibly be one of them. Mommy truly believes everything will be ok and so we have put those worries on the back burner for now until we have a confirmed definate final positive result.

DEECON'S FIRST PICTURE WITH SANTA

Today was Deecon's first picture with Santa. He was adorable. Our Nurse Diane had him looking "handsome" as she always calls him. He had a naked face, no tubes or ventilators. Boy was he handsome. She bundled him all up and put his cute little red santa hat on him. Thanks to our neighbour NICU parents :) we have some great pictures of our little man with Santa. They are so awesome and we really appreciate it. Deecon has started to really follow people with his eyes, so as you can see he really had a good stare at Santa. Deecon has been doing well on his ventilation. He went on low flow today two times, once for two hours and then again for four hours, tolerating it really well. They soon discovered that he saturated better on low flow then when he was put back on the Aladdin. His night nurse sound that he actually would get so mad about putting his Aladdin prongs back on that he would froth at the mouth and get show signs of aggression towards it. She said that the transition from the aladdin to Low flow was usually gradual but in Deecon's case they thought it may be better to complete the transition sooner than later. His first Full day on Low Flow was on December 8,08. It was so exciting to see him excel at ventilation since this was a struggle that he has had since surgery. But hte excitiment didn't stop there, since he was no longer on the Aladdin mask, they were able to relocate his feeding tube to his nose. He did not enjoy the feeding tube in his mouth, since he loves to suck his fingers and especially his thumb. He is so adorable when he gets a good suck on;) The tube is also better in the nose because he has a tendancy to grab his tubes and pull, with it in the nose and taped off he doesn't really have as easy access to it.

MOMMY HELD DEECON FOR THE FIRST TIME

This week Deecon is the BIG 8 Weeks Old... What a big boy... Mommy had the opportunity to bath him twice this week. With each bath I was able to gain more confidence and perfect the bathing pattern. During one bath time, I was able to spend more time bath and bonding as Deecon's Drager(isolate) was changed with another one, as well as he has graduated to a slightly different venitlator still called an Aladdin but with less options then the first. I just love how he stares up at me as I bath him, laying in my hand so calm and comfortable, enjoying every little splash. I just love it.. It is amazing how the simple things like bathing your baby is so special and priceless... I then was able to dress him in his cute little outfit. This outfit Mommy had to put over his cute little head, so very gently. Daddy laughs at me as I treat him as my personal china doll... I know I will learn to be more assertive with him as I gain confidence. But eventually Deecon was in the cutest little sports outfit...Adorable... After his bath the nurse asked me "do I want to hold him?" I knew she didn't mean kangaroo because we did not have a lot of time left and kangarooing is usually at least 2 - 4 hours... I looked in disbelief as she said hold him in my arms. He was now almost two months old and I had not held my son in my arms like a real newborn baby. I was delighted with the idea of holding my son while looking into his handsome little face. There is such a difference between the bonding when kangarooing and holding your baby. When kangarooing it is a much closer bonding physical feeling with your baby as he lay on your chest relaxed and peaceful. But when holding your Deecon he was so awake and aware, looking at his Mommy with adventure and curiosity. I could stare at his cute face while talking with him and playing with him. Unlike kangarooing I could only hold Deecon for a limited amount of time, since he is not place naked on my naked chest like kangarooing instead he is in his cute little outfit, wrapped in his blanket, wearing a blue hat to keep him as warm as possible. As I held him in my arms, I felt so grateful to have him in my life. I listened and watched everything he did in my precious time with him in my arms. He made such cute sounds as he looked around wide eyed... a simply priceless moment between Mommy and Deecon. When our time together was done I put him back into his Christmas style incubator. Deecon has been making great strides in his breathing and lowering his oxygen requirements. They have discovered that Deecon has a reflex problem, where his food travels back up from his belly and blocks his trachea, where he oxygen travels to his lungs. So the doctors now have him on two medicines, Maxerant and Renidine to help him keep his food down. This will help him decrease his amounts of desaturations that he has, which has been one of his constant problems as well as help lessen his amount of Bradycardia's. They have also given him his own little butterfly.. this is a butterfly shaped pillow that he lays on to help keep his shoulders rounded and to help elevate him. Within a couple of days it really worked for you. The nurses are now "sprinting" him, which means they are trialing him on a new ventilator called "Low Flow." This is great!!! Low Flow is a small tube placed under his cute little nose with two small plastic flexible prongs which blow oxygen into his nose as he works it down all my himself to his lungs and back out. His first trial period was two hours and he grew tired. Within a couple more days he was able to stay on low flow for a complete 4hours straight.. We were so proud of him. Each time he gets tired he is then place back on the Aladdin with the uncomfortable nose prongs. I can tell he doesn't like it because he struggles with the nurse as she puts it back on as well as try to push on it as much as possible. Soon we hope he will be able to stay on low flow... and we are all so excited:) Deecon is getting bigger by the minute it seems, since his belly has been excepted the feeds. They have changed his feeding pump to a different kind which allows him to get the fat first to help him grow quicker, they also still add vitamins and minerals packages in his breastmilk. He is up to 8.3ml/hr continuous feeds, and is the big DRUM ROLL PLEASE....... 1410grams 3POUNDS 1.73OZ..How exciting I wasn't sure if three pounds was ever going to come.. He is getting to be such a big boy, his cheeks are a little chunky.. Daddy calls him Fatso.. LOL Wow not only did Mommy get to bath you two times this week I also got to Hold him again... ;) How exciting.... And the one on one time was extended to Mommy being able to Kangaroo Deecon again... Each time is just as precious as the last... he may be in for a lot of kangarooing even when he comes home, because Mommy just loves it :)

MOMMY'S FIRST BATH TIME WITH MY BABY BOY

It's now my time to bath Deecon, and boy am I nervous. He is getting to be such a big boy, but is still so tiny to bath holding his tiny head and neck with one hand and washing and bathing him with the other... Daddy was great support througout this experience since he had already done one bath. First in the process Mommy had to take his cute little baby boy outfit off, first time undressing him, as he gazed up at me with his big beautiful eyes. He is now able to open his eyes nice and wide to gaze at his Mommy and Daddy.. so cute ;) This was the first time I was able to use the stethoscope and listen to Deecon's lungs and heart. It was a great experience. I could hear a wheezing sound and a bit of crackling in his lungs as he breathed, which is the sound of wet lungs. Next we have to get him disconnected from his ventilator and on the scale to weigh him. Today he was a big 1290 grams, which is 2 pounds 13.5 oz.. His big belly is sooo cute :) Next I put in in my left hand and lowered him into the bath.. boy did he love it;) He just layed there calmly with his arms and hands layed out beside his head as he starred up at me ;) The first thing to do is to wet a cloth and place it on his body so that he can stay somewhat warm while you wash him.. also it is good to keep splashing the warm water on the cloth. Next get another cloth wet and start with his eyes. Using one part of the cloth for one eye and another for the other.. don't want to spread infection in case he were to have one. His tear ducts can clog at this age so you have to press firm across his eye.. boy is his Mommy a chicken.. I am so gentle but the nurse will whoop me into shape I am sure.. LOL I then have to wash his hair, gently.. he has such cute lil curls in his hair when it's wet ;) Then work my way down his body, behind ears, under arm pits, belly, below and back... It is quite interesting as he squirms in your one hand and you wash with your other.. but I have to say he is a good boy in the water, no crying to freaking out.. he loves it ;) Once he is clean we have to put him back in the incubator and have to dry him off.. Mommy talked with him as I towel dryed him from head to toe.. put a fresh diaper on him and then redressed him in his new little outfit.. What a cutie.. All the while he is bright eyed, nice and awake starring at me :) Next we have to swaddle him into what I call a sausage roll... The nurses like to do this especially at night to keep him warm and to better simulate the tightness of the womb.. Now Mommy and Daddy know that Deecon doesn't like his arms wrapped up.. he is an adventurous baby and likes to touch his face, stretch his arms out and play with his fingers in his mouth... Adorable.. Mommy's first bath time was a complete success, but Deecon was not liking going back into the incubator on his belly.. as stated before they like to put him on his belly because it helps with breathing and digestion.. But Deecon this night had another idea.. Everytime the nurse put him on his belly he would Desaturate then have a bradycardia.. it was scary, he got all the way down to 50 this time.. We were thinking it might have been because of his reflux, meaning his food coming back up his tube and blocking his trachea for his breathing. So after multiple tries and truly freaking his Mommy out, the nurse decided to keep him on his back until his diaper change at midnight then she was going to try his belly again.. I guess he just knows what he wants and has a mind of his own.. Love my little Man..xoxo

DADDY'S 2ND KANGAROO CUDDLE

When we came in today we were surprised with another chance to Kangaroo :) It's so exciting when the nurse presents us with this option. It was Daddy's turn again;) It was extra special because Nana and Papa came in today to see Deecon and got to see and touch him up close and personal. Deecon's vitals were a little high prior to kangarooing, oxygen was at 43 and his heart rate at 182. After time kangarooing with his Daddy, Deecon's oxygen decreased and his heart rate went as low as 162. Daddy just loved kangarooing his lil baby boy again for hours. Today we were struck with a surprising conversation with the head doctors, regarding results from a routine blood screening. So it was troubling that we needed to take a significant amount of blood to send it for a final testing to hopefully rule out CAH disease. Our baby boy's hemoglobin is really low at 72, so we insisted the doctors wait until his hemoglobin count increased, since he is reticking (making his own red blood cells) so well by himself. If this test lowers his hemoglobin then he is at risk for a blood transfusion. Another blood transfusion at this time will train Deecon's body to stop making his own red blood cells. So Mommy and Daddy are so scared to cause a problem when there is none. So the following day the doctors did a blood test for hemoglobin which came back at an amazing 92, so they took the blood and sent it away.. Now we are so anxious the results back. We have bad luck but 1 in 10, 0000 babies get this and Deecon won't be one of them... I am sure everything will be fine :) Every Wednesday is his head circumference day and it is all great results;) It is amazing how much you get to know your baby. As quoted by one of our nurses "he has such a great character." another one had told us that our son was funny and cute." Just watching him daily allows us to get to know him so well. We love our baby boy :) xoxo

DEECON FIRST TIME ON HIGH FLOW

Mommy was sick on the weekend so she didn't get to see Deecon on Monday.. it was awful but I needed to get better before I came back in to see him. While we were gone the doctors decided to put Deecon's lungs to the test. They tried him on another ventilation machine called a High Flow machine. It removes the nose prongs and mask from his face and replaces it will a small tube under his nose. He did well with this for two whole hours.. what a big boy. He was then put back on the Sipap machine. On the Sipap machine Deecon has been able to get his oxygen down to 40%. He is still requiring his caffeine, and sodium shot. Also still requiring Aldactizide to help drain the fluid from his lungs. Hopefully this medicine will work fast so that we can dry up his lungs so that his oxygen requirement will lower. He is still tolerating his feeds really well, every other day is bath day and he gets weighed every bath day. With feeds increasing, he's at 6.4ml/hr so is his weight.. He is now the big 1150grams which is 2 pounds 5.03 oz. You can see the chubby cheeks starting :) He has not had as many bradycardia's within the last couple days which is music to Mommy's ears. His eyes have been checked for the first time for the common disease called ROP. The specialist said that his vessels in his eyes were still too immature so he is going to check back in another couple of weeks. The eye exam is rated a a stage of 1 to 4, from there either surgery is required based on the stage or subsequent eye exams are given every two weeks. His blood tests for his nutrition.. including protein, phosphate, urea, potassium, calcium, and glucose.. all in which are satisfactory. So good job baby boy.... there are so many obstacles for you to hurdle but you are a strong boy and you can do it ..... :)

MOMMY'S FIRST DIAPER CHANGE AND DADDY'S FIRST BATH:)

Mommy is feeling better and I finally got to change Deecon's bum.. it was great..I never thought that I would be so excited to change a babies bum in my life. I was so nervous.. Deecon is so tiny and the incubator gives you such a limited space to maneuver. It was humerous because Daddy has changed Deecon twice already so he was now a professional and was the one to teach me the diaper changing process. It's amazing how such a small task as changing a diaper can make you feel so much more like a mom. He didn't bless me with a poop as he did Daddy LOL :) Deecon is starting to get sponge baths every other night. But on the 19th Daddy was presented with the opportunity to bath Deecon in his first real bath ever. It was so cute watching Daddy bath his little son in his bath for the first time. He was so small in Daddy's hands. He held him to keep his head above the water as he used his other hand to wash behind his ears, under his arm pits and over his belly. While in the baby tub he was off of the Aladdin and was just assited every once and awhile with a green air mask. He did very well while off the ventilator, our nurse Diane was so shocked that his first bath experience went so well. Excellent Job Daddy... :) xo After Daddy's big moment Mommy got to have hers. Mommy got to kangaroo Deecon again.. This was so exciting for me.. it feels like it has been forever since I got to hold him. He was fresh out of the bath and put on my bare chest were he nestled in for hours. He smelt soo good, I wish I could keep the smell on me forever. He was so exhausted from his big bath with Daddy that he passed out into a deep deep sleep on Mommy. I wanted Deecon to sleep on me forever but the two hours again passed by so quickly. When he was put back into his incubator Diane put on his very first outfit.. it was an adorable yellow jumpsuit with ducks on it.. It was a preemie oufit but was still too big on him. It was so cute to see him clothed for the first time ;) What a big boy in his big boy clothes ;) xoxo

Deecon hits another milestone~ 1KG CLUB RIBBON

Today Deecon hit an amazing and long awaited milestone... he was honoured with a 1kg Club ribbon for hitting 1000grams (two pounds 3oz) :) We were so proud of his accomplishment, so it was hung proudly on his incubator. His feeds are increasing each time he is weighed because he is getting bigger each day. His feeds have been increased to 6.2ml/hr continuous. They notified me that they are now adding some nutrition and have now increased adding two packages of fortifier to my breast milk to help him gain weight. They have now also decided to help regulate the temperature in his isolate to be a little warmer because his body temperature has been slightly low and they find that he is working too hard and burning too many calaries to keep his temperature up. And we need to save as many calories as possible so that he can gain, gain, gain.. :) Great news is that they have now tested Deecon's blood for reticking (making of his own red blood cells) and his results turned out excellent, a count of 181. This is exciting, but it does take some time for the immature cells to turn into red blood cells and raise his hemoglobin.. Time will tell but this is a great sign. Deecon is having some problems with his nose prongs on his Aladdin ventilator. His nostrils are so small that they don't have prongs that fit properly. The prongs have been putting major pressure on his little nose, causing distress because he has no cartilage to protect it... so they have made up a plastic piece called a candilaid to put in between his nose prongs and nose. This will help to relieve his nose from some of the pressure. They are also very careful to rotate between the prongs and mask each day. As he gets older and bigger cartilage will grow and he will no longer have this problem..He's getting to be such a big boy... 2KG CLUB...... HERE DEECON COMES :)

SEEING OUR SON'S FULL FACE FOR THE FIRST TIME~PRICELESS

Today was a great day.. Deecon's long line is finally out :) He no longer requires additinal fluids to his diet because our big boy is now on maximum feeds. :) We are so proud of him, within one week he increased from Tuesday 2cc's/hr to his max. feeds by friday of 5cc's /hr continuous. This is such a great moment because we have had so many concerns regarding his stomach since birth. Now he should be able to put on the weight needed to get bigger and stronger. He is now 870 grams which is one pound 14.68oz, just shy of two pounds. Today when the RT (respitory therapist) was changing his nose prongs to a mask we were able to se his precious little face for the first time. Can you believe it's been 38 days and I have not seen his full face without the massive amounts of tubes etc. This was a priceless moment. I was so happy and he is sooo adorable.. Aunt Tissy took lots of pictures of him for me so that I could gaze at them all night long. Since his Art line is out he has required less blood work which is good. His blood work, CO2 gases, glucose etc. has come back good, as well as his white blood cell count is back down, but he is still on his antifungal until the 21st. The only issue we are having is his hemoglobin level. Deecon has now undergone multiple transfusions and as of 6 weeks babies start reticking, meaning making their own red blood cells. So with us reaching this 6 week target babies are not ordered blood transfusion easily because they don't want to train the babies bodies to not make their own red blood cells. So for now we will wait and see how Deecon does on his own. The only signs of possible problems he is currently having is called Bradycardia. Mommy and Daddy found out what this was the hard way. We were visiting him and his alarms started going off, which we have been used to dsat's but the number there was fine. So you could imagine my panic when I looked at his heart rate which usually read in the 150's and saw it declining into the 70's. We panicked and the nurse took over. This is a condition where preemie babies either are in a deep sleep and forget to breath, or their feeds are brought up their tube and sit in the back of their throat and block their airway. This can also be a side effect of having a low hemoglobin count, so I hope Deecon creates more red blood cells soon. The nurse explained that sometimes babies bring their heart rate up on their own, but often they need what's called stimulation, described as shaking the babies gently on their bums until the rate increases back to normal. I would not want to see what happens when this does not work. The nurse explained to me.. not to panic she said.. if you see me panic, then you panic.. This definately did not comfort us... But Deecon rarely needs to be stimulated and brings his heart rate up on his own, which is good. Today I was given his blue birth hat, along with an ET tube and nose prongs for his baby book... ;) He is such a strong little guy, who has been through so much and he is only 38 days old...

DADDY'S FIRST KANGAROO WITH DEECON

Wow today is November 10th and Deecon is 6 weeks old... We had been waiting since birth for the footprints of Deecon that we had ordered, but because of his fragile state they were not able to do them right away. So to our surprise today we were greeted with a frame of the cutest little footpirnts. So we finally have his adorable first footprints to keep forever... When we came into the nursery, our primary nurse Diane says "so who wants to kangaroo today?" In disbelief Daddy and I look at eachother. Diane is a kidder so we thought she was joking.. Daddy was so excited when she confirmed she was for real.. He hurried off to get ready for his first snuggle with his son. It was so cute to see the excitement in Daddy's eyes as he prepared to hold you for the first time. Simply priceless. As Deecon was placed on Daddy's chest he heard this little sound coming from Deecon. He looked at me as I videotaped him and exclaimed.. "He Cried"... In disbelief I just looked at him and questioned "what".. He repeated himself and at the same time I heard him cry... it was like music to my ears... Mommy cried at the same time in happiness of course. He sounded like a little baby kitty as he let out his cry, it was the most adorable sound ever... The sound of his first cry meant that the surgeons didn't hit his vocal cords and that he would be able to talk.. this was a great moment.. all caught on tape :) Deecon's day before kagarooing with his Daddy had been fair. But Deecon adjusted better than expected, before kangarooing he was in 75% oxygen which is really high, but after some time nestled into his Daddy's chest his oxygen requirement came down to an amazing 56%, very impressive. His heart rate was high as well this day beating at high between high 170's to 180, but after time on his daddy his heart rate settle back down to his normal at high between high 150's to 160. It was so amazing how this works. He just melts into you. It was funny cause while on Daddy Deecon got the hiccups.. it was cute.. For the next few hours Deecon settled into a peaceful sleep on his father's chest.. Daddy loving every second of it. In fact he had a choice to stop at 715pm during nurse changeover but he requested to continue until 830pm. What a great bonding day for Deecon and Daddy xoxo Mommy can't wait until it's her turn next :)

Deecon's Moving on UP :)

Deecon is moving in the right direction :) His morphine is still being weened down, and he has stopped his antibiotics for his Staff Infection... He is still requiring Lasix to flush more fluids because the recent x-ray still showed excessive fluid. It's now Day 8 Post Surgery Ligation and he is doing well over all.. Deecon has been moved back to the Jet ventilator.. He is doing well regarding his oxygen requirements.. slowly but surely if the Lasix helps the lungs dry up then his oxygen requirements will keep coming down.. The nurse has discussed with us that his requirements for oxygen are still too high and they would like to see it go down.. Room air oxygen is measured at 21 and Deecon is up in the 70's still.. Just as he fought off one infection he was diagnosed with another called Candita.. commonly known as a yeast infection so he was now put on an anti-fungal medicine for a couple of weeks.. Wow within days he has moved into a new ventilator which allowed the doctors to extabate him.. which means take the ET tube from his nose to his lungs out;) YEAH this was a great day:) We were so happy to have him advance to another ventilator which will allow him to breath more on his own. :) The new ventilator is called an Aladdin... which requires a nose mask or prongs to poof oxygen in his nose and he must work to bring it down to his lungs.. the nurses warned us that this was just a trial.. they were going to see how he would adjust and not to painic if he went back to the conventional ventilator.. but so far so good.. he is really liking the new ventilator.. His head is so small that he fits into only xs hat which the only one they have is lined in pink;) I say he is confident like his daddy..and anyone who knows daddy would know he loves his pink LOL :) He still struggles with desaturation which means he sets off an alarm stating that the oxygen he is taking in is not reaching his whole body at a rate that is satisfactory.. the nurses call him a swinger because he will set off the alarm but he is very strong and is able to bring his number back up without manually increasing his oxygen.. he does this so much that they have made him his own sign on his machine stating please give him a chance before increasing his O2.. He has also advanced from the giraffe incuabator he was put in at birth to a new one where he can try and regulate his own temperature, which is great. With him brewing a Candita infection they had to get a urine sample.. so they had to cathaderise him.. :( Mommy was sad because I remember the pain and discomfort of being cathadarised in ambulance, but they reassured me that he did not show any signs in his vitals of distress and this was an in and out cathadarization to get a small sample to culture.. By Nov. 8th he is weened completely off of his morphine which makes Mommy proud.. I hated him being on such a strong pain killer.. They watched him closely for withdrawls.. which he was slightly jittery.. The culture came back from the sample showing he required an anitfungal called Fluconosol and they figured he got it from a combination of all the anitbiotics he has been on since birth. A couple more doses of Lasix have pulled a lot of fluid from his body, hopefully his lungs, and with the combination of losing his ET tube Deecon has lost weight and dropped below his 2 pounds :( They say if he indeed lost lung fluid this weight loss was a good one and once we get his feeds back up he will be fine.. He has advanced to eating 1 cc continuously every hour.. which is the most he has eaten since his surgery on Oct28th.. Moving on up:) Keep up the good work good boy ;) xoxo

Deecon's Recovery :)

Well Deecon has been recovering well from surgery;) Mommy and Daddy did not like to see Deecon sedated. It was the worst thing for a parent to see... he was lifeless and lay there still and limp :( I just couldn't wait for the sedation to wear off... but once it wore off the doctors pumped him full with morphine to help him through the pain. So he is not as active as we would like but the nurses say that the more sleep and stillness the better for his recovery. So Daddy and I just come in and sit by the incubator and try not to disturb him as you recover. Mommy is sad right now because you are not eating my breastmilk at all.. your precious little belly just won't handle the milk right now:( When the nurses check for digestion they pull out green bile from your belly showing digestion distress.. The doctors say you were so premature that it may take time for your belly to be able to digest the milk plus you have been through so much trauma lately that it will take some time. We will be patient.. Deecon also had a lung x-ray today which showed excessive fluid on the lungs so they put him on a drug called Lasix that will help flush out the excessive fluid from your body out into your urine. We keep a very close eye on your urine output and we are so proud that you have been peeing excellent lately.. :) The doctors were also concerned about your belly distention so they took an belly x-ray... but all looked well in the x-ray so they are just going to keep a close eye on it.. During a routine CBC blood tests... they discovered that Deecon's white blood cell and neutrafill count was high therefore showing early signs of an infection.. They discovered a Staff Infection which required an anibiotic Vancomycin... as well right now his blood pressure seemed slightly high so he was prescribed a drug called dopimine to help bring his numbers back down.. Within days his blood pressure came back down and he is now being weened off of his Dopimine.. and within a week his morphine requirement has been weened as well :) As the week goes on Deecon's vitals return to normal and he is looking really great.. the swelling has gone down and his oxygen requirements are slowly but surely decreasing. :) His blood tests, gases and white blood cells have been excellent. We are so proud of how Deecon had progressed this week and it's hard to say this but the heart surgery is a blessing in disguise.. November 2nd was a great day, because Deecon had his arterial line in his leg removed because he has been stable and requiring less blood tests daily so now they will just pick his foot once a day :) Nov 5th was a weighing day and our big boy had made it over 2 pounds YEAH!!!!!! He is still not eating regularly but is getting better each day ;) What a big boy.. he is recovering well :) Mommy and Daddy are so proud of himxo