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 :)