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 bee
n 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 blu
e 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 fe
eding 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 ;)
n 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 blu
e 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 fe
eding 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 ;) 
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