DEECON'S OFF OF OXYGEN ;)

We have been working so hard to get Deecon lower on his oxygen requirement. Today was Deecon's day... As I walked closer to his cott in the nursery I noticed his handsome little face.. totally naked of any tubes or tape... Tears flowed down my face as I starred into my son's gorgeous face. I was so happy, but so nervous all at once. We have had many attempts in the past to eliminate the oxygen but all have failed with Deecon having blue spells. So I was excited and hopeful but nervous and cautious. Deecon also lost the heart rate and respitory rate leeds, so he was only now attached to a small hand held machine that was portable.. For the first time ever I could hold Deecon anywhere in the nursery I wanted. I didn't have to work around tons of wires and tubes when changing his diaper and clothes.. it was great :) Daddy came in before work and it was priceless to see his face as he started to talk with Deecon. Bath time was so much easer without the oxygen tube as well... The whole day went by without a blue spell.. it was very well.. As I left I was praying that Deecon could keep it up and make it through a whole 24 hours with no oxygen.. the first 24 hours of the rest of his non oxygen support life ;) And indeed he did and the next day was another celebration.. :) We had been working so hard on his feeds, Deecon has been doing excellent, taking full feeds from Mommy almost ever time. The only times that he defaults from full feeds in at night when the nurses are in charge, often he is tube fed a minimum of 2 feeds a night. I have talked with his pediatrician regarding his feeding schedule and she agreed that we should test Deecon and see what feeding schedule he wants to be on, so the nurses were instructed to feed on demand. So whenever Deecon showed that he was hungry they were to feed him, and if he doesn't show he is hungry after four hours then we had to get him up and change and feed him. Usually he was pretty good at feeding between his 3 and 4 hour spand. The next day I came into the nursery to feed Deecon with a much greater surprise. There was my baby boy without a feeding tube in his nose. It was such a great feeling of accomplishment having that feeding tube out.. We have worked sooo hard trying to get Deecon to feed enough so that we could try and not tube a feed. I was so happy. I thought he was soo handsome without his oxygen, but now he has a totally naked face and he is such a handsome boy... I could stare at his little face all day long and that is exactlly what I did ;) It was funny Deecon's Aunt Tissy came to visit and she didn't know that he had a naked face so I didn't say anything I just let her discover it for herself. Her face was priceless, it was such a great surprise. The past 48 hours Deecon has leaped past huge nursery milestones. The next 24 hours without a feeding tube will be crucial. If Deecon can continue with his feeds we could possible be home really soon. We were all sooo excited... ;) Positive thinking.. Home here we come!!!

DEECON'S LONDON SLEEPOVER CAMP

Deecon was off to London for a sleepover for his eye appointment. Because the appointment time is so early Deecon went down the day before and stayed overnight. Mommy is so anxious for this appointment. Deecon has not had his eyes examined in three weeks.. Previous to this Deecon's eyes were examined over a week and before that every three days.. so this was a big day:) I asked that the eye surgeon give me a call especially if there was a major change that was negative :( So needless to say I did not get much sleep that night and anticipated the call from the surgeon. The morning was slipping by and the phone finally rang. It was the eye surgeon so I automatically felt sad because I assumed it was negative. But instead she gave me the best news ever. She examined Deecon's eyes and said that he is doing awesome, that his vessels have flattened out and now are looking completely normal. She said that his retina's do not look like our's do, because the ROP was so severe it has cause scar tissue, but she said she couldn't tell me what it might effect, instead she said keep an eye out for wandering eye, crossed eyes and lazy eyes. Also contact a doctor immediately if I see Deecon's eyes in pictures being white instead of red eye. She then continued to say that Deecon was now ROP free and that he wouldn't have to see her for an eye exam for another 9 months. She commented that he was such a strong and healthy baby and that she was so shocked about his outcome. She had recalled telling me in December that it was just a matter of time for surgery so don't be surprised. She also said that when he was born they were discussing who would be doing his surgery and now Deecon has shocked everyone ;) She finished with saying "He is the true definition of a fighter".. What a great comment.. I knew my little man could do it.. Mommy and Daddy are so proud of him..

CLOSER TO HOME :)

Well it has been very interesting trying to adjust to Chatham and the many changes and differences from the London hospital. I was so happy that the pediatrician that was in the ambulance with me when I was in labor was the pediatrician on the day of my transfer.. therefore she took Deecon on as her patient. This made the transfer easier because Dr. Edwards is an awesome doctor and made me feel really comfortable. She mad some great changes with Deecon, first taking him off the human milk fortifier and putting him on straight breastmilk, which I was soooo excited for :) She also decided to stop one of his meds called maxeran.. Deecon had been on this medicine most of his life so she thought she would attempt to discontinue it and see what happened. Deecon had some adjustments to Chatham, struggling with his bottle feeds. Even with the change in meds Deecon is doing very well but unfortunately has been refluxing more than we would like so the Dr. prescribed a new medicine called domperidone.. this medicine will help to empty out his stomach quicker so that there is nothing to reflux. Being in Chatham has made it possible for more visitors to be able to get to know and hold Deecon. Deecon's sister's Anastasia and Mackenna were so excited that Deecon was in Chatham. They loved their first visit with him where they got to hold and bath him. For Valentine's Day they made Deecon the cutest lil Valentine's cards :) They love their baby brother so much, they are both such great helpers and awesome big sisters xoxo Daddy was so excited too that Deecon was home, so that he could see him everyday before he went to work. He could help bath him and start to learn to feed him :) And of course Mommy was very excited, she could spend more time up at the hospital and sleep in her own bed at night... ;) Next he will be home :)

TRANSFER TO CHATHAM

Well our next big day was fast to approach.. it was eye exam day again and this one was very crucial... The results could have us being transferred to Chatham. Dr. Sheidow took a look at Deecon early morning and called me the news. Deecon's eyes had showed some improvement again. Regressing some of the stage 2 down to a stage 1 and the vessels they last time described as being stage 3 angry they have regressed to looking more flat and less angry.. this was exciting news.. we were not out of the woods yet for surgery but due to the regressing the dr. didn't have to see us for two weeks which meant we were eligible for a transfer... if Chatham should choose to accept us.. There are so many babies ready to transfer to Chatham, Deecon was fighting against another 4 babies for a spot. He had an advantage because he was older than the rest but had much more medical issues so I was hesistant to get excited about the transfer. Before a transfer though we had to take Deecon through a feeding assessment at Children's Hospital.. So now were were set back until the friday to find out if we were able to transfer. This was the first time that Deecon had left the hospital.. he was so adorable in the travel incubator, just awake. aware and starring around content at all the new scenery. At the assessment we were both covered in lead outfits as I fed Deecon and he was xrayed swallowing. It was very cool to watch. I was very concerned of how Deecon would feed considering that the past week had been awful with his bottle feeds. In fact he had not taken a bottle in four days, and had been continuing to have major desats and spells. He just wasn't acting like himself.. as I would hold him I could feel him reflux then hold his breath and could see him start to turn blue. The past week had turned blue while I was holding him at least once everyday which was not normal for him. He would also just cry in pain for no reason but you could see that something was painful to him. I noticed it was always correlating with his feeds, whether it be bottle feeds or tube.. I was so concerned and for the first time scared that I wouldn't be coming home with a baby. When they say it is an up and down journey they aren't joking. It is up and down right till the end... He was perfect one day eating full feeds by bottle over half of his feeds a day and then BAMMMM. He was refusing to eat by bottle, showing breathing distress and turning blue while you hold him. After sitting with the doctors and discussing my observation of what I felt he was doing they decided to change Deecon's acid reflux meds... I sat with the pharmacist as he explained that the new medicine omeprazole was an adult medicine and that they have to mix it especially for Deecon to make it in liquid form. I was very nervous about him taking a medicine that had been used but not normally used to treat acid reflux in preemies. But at this time I was so desperate for him to be better and back to his normal self. It all made sense that the old meds reninidine was no longer strong enough for him as his breastmilk intake has increased. Within days Deecon was getting back on track... and he was a total star during his feeding assessment.. I was so happy and proud of him ;) I sat with the dr. and saw the playback of his feeding xray video showing the results of the feeding assessment. The results of this assessment would tell us if Deecon was able to feed by bottle or if he would have to get a Gtube inserted into his belly and be fed directly through his belly.. I was so sad and scared of this option.. The doctor explained that Deecon had an immature swallow and that instead of taking the milk directly to his belly he holds the liquid for a second above his trachea flirting with the idea of aspirating into his lungs.. but she stressed that never did they witness this happening and that it was her professional medical opinion that we could continue to feed Deecon by bottle but be aware of this hesitation and be cautious especially as he gets tired when feeding. I was so relieved I wanted to hug and kiss the doctor.. Good things were now happening and we were back on our way up the rollercoaster and I felt good... ;) Feb 10th.. we got the call that Deecon was selected for transfer.. I felt relieved but so nervous to be going to a new hosptial with new nurses and doctors.. and there is always that fear that he was not ready and that they wouldn't be able to handle his issues.. but they seemed to be confident so I needed to believe in their confidence. The transfer went well.. Deecon again was loving the travel incubator and his nurse said that he was the best baby she has had yet to travel for a transfer.. :) What a good boy... Very exciting times.. we are so much closer to home ;)

THE ROLLERCOASTER GOES UP AND DOWN

HAPPY DUE DATE BIRTHDAY DEECON...XOXO Jan 22nd is here, and it is our due date:) I can't believe it is here. At the begining they told me that by this day I would be getting to go home but now that it is here I know that we have some more time in the hospital still. And with the ups and downs of the NICU train, I only want to go home when he is absolutely ready..Wow Deecon has grown so much in the past month. January was a month of getting bigger and stronger for him. He is now 8 pounds and 11oz.. :) He has also been increasing his bottle feeds sometimes bottle feeding 3 or 4 times a day, but we have been noticing a strong stridor sound as he breaths which has become concerning. The doctors have stated that it was not effecting his oxygen level so they were not concerned at first but as January ends Deecon is struggling with his oxygenation and has been turning dusky colours and needs frequent increase in his oxygen. It now is a major concern. He was acting so out of character one night with desaturating that the nurse called for a emergency lung scan to see if there was fluid on his lungs again. The results were puzzling because his lungs still showed major lung disease but looked the best they have looked to date. His spells just got scarier from there. He had been changing colours lately, going dusky and then blue. One night when feeding him, his first suck on his bottle and he went limp, turned blue really quick and wouldn't respond. I panicked as you can imagine... my nurse helped me sit him up and started to rub and pat his back to try and get him to breath.. this didn't work next we layed him on his bed. His heart rate decreased and stayed low, this again was a Bradycardia.. he hadn't had one of those in a month, and it wasn't normal for Deecon to Brady and not bring his heart rate up with stimulation. He desatted with the Brady so my nurse put the green oxygen mask on him to try and help.. After five minutes Deecon finally brought his heart rate back up. My nurse was so scared that he might have possibly aspirated his milk into his lungs that we paged a doctor to have a thorough look and listen to Deecon.. Wow this was a very scary moment. He did recover well after 10 minutes he was back saturating in the 90's. The next week brought more scary blue spells, accompanied by a stronger stridor breathing.. An ENT (ears, nose and throat) specialist was called in to scope Deecon's throat. I wanted to be there so the doctor allowed me to hold Deecon as he scoped his throat. Deecon did not like the scope at first, but after rubbing his head and talking to him he, and of course some sucrose water allowed me to get him calm and almost sleeping. It was funny cause the doctor at one point in time said he was too quiet and that he needed to hear him coo or cry, so since he hated his blood pressure taken I held his arm out straight like they do for that.. He let off a soft sound and went back to sleep. Before they took the scope out of his nose I asked the doctor to take a peek so I was able to see in Deecon's throat. What we were looking at the ENT specialist explained was that Deecon had a paralyzed vocal cord. His left vocal cord did not have moment as his right did, therefore creating the stridor sounds as it collapses as he breaths. This gets worse as Deecon has seemed to be having increased problems with his acid reflux. The more fluid he drinks, which he needs cause he is bigger the more he reluxes and irritates his vocal cord and box, which creates the louder stridor sound. The specialist said that he does not usually do surgery on one vocal cord so we would have to give it time and see if Deecon can strengthen it and grow out of it. He explained that the vocal cord must have been nicked in his Pda heart surgery. :( It was a sad reality... and as he is explaining it I realize that Deecon does sound a little raspy when crying which he says is another sign of a paralyzed vocal cord. So we can only hope that he will grow out of it and be able to talk perfectly... only time will tell... Deecon is a miracle baby through and through, so there is nothing he can't beat... His eyes are still an ongoing issue but Deecon is holding on and fighting his ROP head on, I keep praying that he will beat it and save himself from surgery and losing his peripheal vision.. I am his number one cheerleading, talking to his eyes all the time letting them know that they can do this... again only time will tell but Mommy predicts good things ;)

DEECON'S FIRST BOTTLE

As we advance into the New Year, Deecon's lung streaking has subsided. The Lasix seems to have worked in drying out his lungs. The doctors have explained that the accumilation of fluid on his lungs are due to Deecon having Chronic Lung Disease. The excessive ventilation that Deecon required from birth has caused scar tissue damage his lung tissue. In turn Deecon will need time for his lung tissue to regrow and heal. In the meantime the doctors have prepared me that he will be highly supseptible to catching colds and may be ill a lot while being an infant. His days just keep getting better as the new year advances. We are able to slowly decrease his oxygen requirement :) On Jan 4th Deecon tried his first bottle, and he slowly drand the full bottle.. What a big boy :) I was so proud of my little man. It is a lot of work for Deecon to finish a bottle, with his lung issues he needs to pace himself and breath a lot through the feeding process. We are still breastfeeding as well. Throughout the holidays Deecon's eye surgeon has been keeping a close eye on him so that his ROP (Retinopathy of Prematurity) would not advance any further. To recap Deecon's eyes have progressed from no ROP to a stage 2, and now into stage 2 little 3. Stage 3 moderate is the level thatrequires eye surgery. My conversations with the eye surgeons have been so different as he has been checked every three days for progression. From the beginning the surgeons were deciding who would be doing Deecon's surgery since they thought it was imminent that he would require it due to his low birth weight and his high oxygen requirement at birth. But Deecon has shocked everyone and as the time goes on he is slowly regressing. His eyes this last check have got a little better, which again has cancelled our tentative surgery date. Each check-up comes with a tentative date, and each time Deecon beats it. It sure keeps my nerves at attention but I couldn't be Happier :) I would literally do anything for Deecon so that he wouldn't have to go through another surgery. Absolutely anything!! I asked all the questions that I had to the surgeon was devastated with some of the answers. Eye surgery is 1 hour and a half, which I thought would be much shorter. The baby needs to be re-intabated and on a ventilator, back in an incubator and moved back to the NICU. This surgery would send us back a month. So keep the prayers coming that Deecon can and will beat this eye disease. He is definatly moving in the right direction.

DEECON'S FIRST CHRISTMAS AND NEW YEARS

Christmas was really hard for us. We stayed in London with Deecon as long as we could on Christmas Eve, but had to return home for the girls and for family celebrations. I found it difficult to celebrate because he wasn't in my arms to celebrate with us. During the Christmas holidays the girls each got to spend some quality time with thier baby brother. They each got to hold him like a real baby as well as help bath and change him. Deecon had a very Merry Christmas but Boxing day was a bit rough for him. He started it off with a big Brady, dropping his heart rate which required major stimulation and oxygen. They found that it may be due mostly to his problem with acid reflux. Deecon has been on his two medications for reflux, renenidine and maxerant for sometime now so they decided to increase it to help keep his stomach at rest to lessen his bradycardia moments. They also decided to raise his oxygen to 125%. His weight is increasing at a great rate, he is the big 4pounds 14oz. He changes so much each day. :) As 2008 ended we were able to weign Deecon's oxygen down to 110%. By the new year Deecon's weight reached 5 pounds :) But the New Year was not as kind to him as we would've liked. Deecon had another Bradycardia, requiring stimulation but this time he needed additional assitance called sipap. This is a oxygen mask that they place over his whole nose and mouth area to pump maximum oxygen in him. He recovered niclely but with two Brady's so close together the doctors decided to have a chest xray done. The xray showed that Deecon has some streaking on his lungs which is causing him his problems. The doctors were not sure if the streaking was showing the early sings on pneumonia or if it was just fluid accumilating on his lungs so they decided they would try another shot of medicine called Lasix which hopefully will help eliminate his fluid on his lungs, in turn allow us to lower his oxygen requirements. With Lasix we have to keep track of his urine output and so far so good :) He had another CAH blood test done as well and we should have the results in a few weeks. Even though he has had two positive results I still don't think Deecon has this disease all I need is the result to proove it ;)

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.