Photos and video with hashtag #tracheoesophagealfistula

#tracheoesophagealfistula

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- This little lady is ready to go home today after almost 4 weeks in the hospital. She’s still on several antibiotics for the 7 different infections they found in her plural cavity. Her lungs are clear and the surgery was successful. Hoping to say goodbye to tube feeding soon. Thanks everyone for the continued prayers. @valleychildrens #babywonderwoman #prayerwarriors #prayerheals #faith #godsgrace #womanofgod #womanoffaith #redeemed #pray #chdwarrior #asdsurvivor #heartwarrior #heartprincess #heartmom #tubie #gjtube #gjtubebaby #tef #Tracheoesophagealfistula #edenray #Afamilythatpraystogetherstaystogether
- This little lady is ready to go home today after almost 4 weeks in the hospital. She’s still on several antibiotics for the 7 different infections they found in her plural cavity. Her lungs are clear and the surgery was successful. Hoping to say goodbye to tube feeding soon. Thanks everyone for the continued prayers. @valleychildrens #babywonderwoman #prayerwarriors #prayerheals #faith #godsgrace #womanofgod #womanoffaith #redeemed #pray #chdwarrior #asdsurvivor #heartwarrior #heartprincess #heartmom #tubie #gjtube #gjtubebaby #tef #Tracheoesophagealfistula #edenray #Afamilythatpraystogetherstaystogether
- This little lady is ready to go home today after almost 4 weeks in the hospital. She’s still on several antibiotics for the 7 different infections they found in her plural cavity. Her lungs are clear and the surgery was successful. Hoping to say goodbye to tube feeding soon. Thanks everyone for the continued prayers. @valleychildrens #babywonderwoman #prayerwarriors #prayerheals #faith #godsgrace #womanofgod #womanoffaith #redeemed #pray #chdwarrior #asdsurvivor #heartwarrior #heartprincess #heartmom #tubie #gjtube #gjtubebaby #tef #Tracheoesophagealfistula #edenray #Afamilythatpraystogetherstaystogether
- Repost @thesharpcrew: I know I’ve talked about @beadsofcourage MANY times before but I cannot resist sharing once again! I mean we did get these cute 😍 photos back from @jordanlexus.photography. Beads of Courage is an amazing program for children with medical issues... each bead represents one tiny part of their journey. One day we will be able to explain bead by bead all that Hawkinz has been through. Then he will truly understand why he is indeed a miracle boy. If you are ever looking for an amazing charity to donate to.... this is one of the absolute best so please consider them this Holiday season! You can also purchase some specialty beads of your own or send them to a little warrior like Hawkinz. They also have a program that’s called “carry a bead” in which you carry 2 special beads during a moment in your life such as a marathon (or anything else) Then you keep one and send the other back for them to give to a child as a “act of courage” bead. The child also gets the special message you write to them. How sweet is that? We have kept all of Hawkinz’ special messages and I’m betting he too will cherish them as much as we do! Oh and don’t miss out on all the cute photos so keep swiping!!! ... #beadsofcourage #hawkinzgreene #esophagealatresia #tracheoesophagealfistula #tracheomalacia #gtube #tubie #nicugrad #surgicalbaby #miraclebaby #littlefighter #proudtubie #thesharpcrew #beadstrong
- Repost @thesharpcrew: I know I’ve talked about @beadsofcourage MANY times before but I cannot resist sharing once again! I mean we did get these cute 😍 photos back from @jordanlexus.photography. Beads of Courage is an amazing program for children with medical issues... each bead represents one tiny part of their journey. One day we will be able to explain bead by bead all that Hawkinz has been through. Then he will truly understand why he is indeed a miracle boy. If you are ever looking for an amazing charity to donate to.... this is one of the absolute best so please consider them this Holiday season! You can also purchase some specialty beads of your own or send them to a little warrior like Hawkinz. They also have a program that’s called “carry a bead” in which you carry 2 special beads during a moment in your life such as a marathon (or anything else) Then you keep one and send the other back for them to give to a child as a “act of courage” bead. The child also gets the special message you write to them. How sweet is that? We have kept all of Hawkinz’ special messages and I’m betting he too will cherish them as much as we do! Oh and don’t miss out on all the cute photos so keep swiping!!! ... #beadsofcourage #hawkinzgreene #esophagealatresia #tracheoesophagealfistula #tracheomalacia #gtube #tubie #nicugrad #surgicalbaby #miraclebaby #littlefighter #proudtubie #thesharpcrew #beadstrong
- Repost @thesharpcrew: I know I’ve talked about @beadsofcourage MANY times before but I cannot resist sharing once again! I mean we did get these cute 😍 photos back from @jordanlexus.photography. Beads of Courage is an amazing program for children with medical issues... each bead represents one tiny part of their journey. One day we will be able to explain bead by bead all that Hawkinz has been through. Then he will truly understand why he is indeed a miracle boy. If you are ever looking for an amazing charity to donate to.... this is one of the absolute best so please consider them this Holiday season! You can also purchase some specialty beads of your own or send them to a little warrior like Hawkinz. They also have a program that’s called “carry a bead” in which you carry 2 special beads during a moment in your life such as a marathon (or anything else) Then you keep one and send the other back for them to give to a child as a “act of courage” bead. The child also gets the special message you write to them. How sweet is that? We have kept all of Hawkinz’ special messages and I’m betting he too will cherish them as much as we do! Oh and don’t miss out on all the cute photos so keep swiping!!! ... #beadsofcourage #hawkinzgreene #esophagealatresia #tracheoesophagealfistula #tracheomalacia #gtube #tubie #nicugrad #surgicalbaby #miraclebaby #littlefighter #proudtubie #thesharpcrew #beadstrong
- I know I’ve talked about @beadsofcourage MANY times before but I cannot resist sharing once again! I mean we did get these cute😍 photos back from @jordanlexus.photography . Beads of Courage is an amazing program for children with medical issues... each bead represents one tiny part of their journey. One day we will be able to explain bead by bead all that Hawkinz has been through. Then he will truly understand why he is indeed a miracle boy. If you are ever looking for an amazing charity to donate to.... this is one of the absolute best so please consider them this Holiday season! You can also purchase some specialty beads of your own or send them to a little warrior like Hawkinz. They also have a program that’s called “carry a bead” in which you carry 2 special beads during a moment in your life such as a marathon( or anything else) Then you keep one and send the other back for them to give to a child as a “act of courage” bead. The child also gets the special message you write to them. How sweet is that? We have kept all of Hawkinz’ special messages and I’m betting he too will cherish them as much as we do! Oh and don’t miss out on all the cute photos so keep swiping!!! #beadsofcourage #hawkinzgreene #esophagealatresia #tracheoesophagealfistula #tracheomalacia #gtube #tubie #nicugrad #surgicalbaby #miraclebaby #littlefighter #proudtubie #thesharpcrew
- I know I’ve talked about @beadsofcourage MANY times before but I cannot resist sharing once again! I mean we did get these cute😍 photos back from @jordanlexus.photography . Beads of Courage is an amazing program for children with medical issues... each bead represents one tiny part of their journey. One day we will be able to explain bead by bead all that Hawkinz has been through. Then he will truly understand why he is indeed a miracle boy. If you are ever looking for an amazing charity to donate to.... this is one of the absolute best so please consider them this Holiday season! You can also purchase some specialty beads of your own or send them to a little warrior like Hawkinz. They also have a program that’s called “carry a bead” in which you carry 2 special beads during a moment in your life such as a marathon( or anything else) Then you keep one and send the other back for them to give to a child as a “act of courage” bead. The child also gets the special message you write to them. How sweet is that? We have kept all of Hawkinz’ special messages and I’m betting he too will cherish them as much as we do! Oh and don’t miss out on all the cute photos so keep swiping!!! #beadsofcourage #hawkinzgreene #esophagealatresia #tracheoesophagealfistula #tracheomalacia #gtube #tubie #nicugrad #surgicalbaby #miraclebaby #littlefighter #proudtubie #thesharpcrew
- I know I’ve talked about @beadsofcourage MANY times before but I cannot resist sharing once again! I mean we did get these cute😍 photos back from @jordanlexus.photography . Beads of Courage is an amazing program for children with medical issues... each bead represents one tiny part of their journey. One day we will be able to explain bead by bead all that Hawkinz has been through. Then he will truly understand why he is indeed a miracle boy. If you are ever looking for an amazing charity to donate to.... this is one of the absolute best so please consider them this Holiday season! You can also purchase some specialty beads of your own or send them to a little warrior like Hawkinz. They also have a program that’s called “carry a bead” in which you carry 2 special beads during a moment in your life such as a marathon( or anything else) Then you keep one and send the other back for them to give to a child as a “act of courage” bead. The child also gets the special message you write to them. How sweet is that? We have kept all of Hawkinz’ special messages and I’m betting he too will cherish them as much as we do! Oh and don’t miss out on all the cute photos so keep swiping!!! #beadsofcourage #hawkinzgreene #esophagealatresia #tracheoesophagealfistula #tracheomalacia #gtube #tubie #nicugrad #surgicalbaby #miraclebaby #littlefighter #proudtubie #thesharpcrew
- It’s still so VERY hard remembering this day last year. Today marks one year since Hawkinz quit breathing while in the PICU. It’s an image I simply cannot get out of my head no matter how hard I try. I can remember this event like it was yesterday... it’s so vivid in my mind and still takes my breath away. It’s something no parent should ever face and this was the second time it’s happened and it was far worse this time. The doctors also said that CPR would NOT have helped this time. As much as it was a hard day.... I still have so much to be thankful for because of that day and what happened. Hawkinz just kept getting sick and the doctors had no real answer as to why. Their thoughts were reflux and aspiration related. I’m sure that was part of it but there was a much bigger reason which was truly revealed this day. Hawkinz has severe tracheomalacia... which is floppy trachea. All babies with EA/TEF have some degree but no one knew how severe his truly was. His trachea was collapsing at 100% which makes it extremely unstable. This is when they realized how incompetent his airway was and why we could not leave the hospital until something was done to give him a stable airway. Our home Hospitals only option was a tracheostomy which honestly scared the crap outta me. They began looking into options in Boston since they specialize in Hawkinz’ condition. This event could have also happened at any time and I’m so VERY thankful it was in the PICU where there’s some amazing nurses and doctors. They sprung into action to help my sweet lil boy and I cannot thank them enough! As hard as this Day was.... I’m just so thankful I’ve got Hawkinz in my arms today. He’s one special miracle....that’s for sure! #hawkinzgreene #esophagealatresia #tracheoesophagealfistula #tracheomalacia #posteriortracheopexy #aortopexy #anteriortracheopexy #gtube #tubefed #tubie #thesharpcrew #littlemiracle
- It’s still so VERY hard remembering this day last year. Today marks one year since Hawkinz quit breathing while in the PICU. It’s an image I simply cannot get out of my head no matter how hard I try. I can remember this event like it was yesterday... it’s so vivid in my mind and still takes my breath away. It’s something no parent should ever face and this was the second time it’s happened and it was far worse this time. The doctors also said that CPR would NOT have helped this time. As much as it was a hard day.... I still have so much to be thankful for because of that day and what happened. Hawkinz just kept getting sick and the doctors had no real answer as to why. Their thoughts were reflux and aspiration related. I’m sure that was part of it but there was a much bigger reason which was truly revealed this day. Hawkinz has severe tracheomalacia... which is floppy trachea. All babies with EA/TEF have some degree but no one knew how severe his truly was. His trachea was collapsing at 100% which makes it extremely unstable. This is when they realized how incompetent his airway was and why we could not leave the hospital until something was done to give him a stable airway. Our home Hospitals only option was a tracheostomy which honestly scared the crap outta me. They began looking into options in Boston since they specialize in Hawkinz’ condition. This event could have also happened at any time and I’m so VERY thankful it was in the PICU where there’s some amazing nurses and doctors. They sprung into action to help my sweet lil boy and I cannot thank them enough! As hard as this Day was.... I’m just so thankful I’ve got Hawkinz in my arms today. He’s one special miracle....that’s for sure! #hawkinzgreene #esophagealatresia #tracheoesophagealfistula #tracheomalacia #posteriortracheopexy #aortopexy #anteriortracheopexy #gtube #tubefed #tubie #thesharpcrew #littlemiracle
- It’s still so VERY hard remembering this day last year. Today marks one year since Hawkinz quit breathing while in the PICU. It’s an image I simply cannot get out of my head no matter how hard I try. I can remember this event like it was yesterday... it’s so vivid in my mind and still takes my breath away. It’s something no parent should ever face and this was the second time it’s happened and it was far worse this time. The doctors also said that CPR would NOT have helped this time. As much as it was a hard day.... I still have so much to be thankful for because of that day and what happened. Hawkinz just kept getting sick and the doctors had no real answer as to why. Their thoughts were reflux and aspiration related. I’m sure that was part of it but there was a much bigger reason which was truly revealed this day. Hawkinz has severe tracheomalacia... which is floppy trachea. All babies with EA/TEF have some degree but no one knew how severe his truly was. His trachea was collapsing at 100% which makes it extremely unstable. This is when they realized how incompetent his airway was and why we could not leave the hospital until something was done to give him a stable airway. Our home Hospitals only option was a tracheostomy which honestly scared the crap outta me. They began looking into options in Boston since they specialize in Hawkinz’ condition. This event could have also happened at any time and I’m so VERY thankful it was in the PICU where there’s some amazing nurses and doctors. They sprung into action to help my sweet lil boy and I cannot thank them enough! As hard as this Day was.... I’m just so thankful I’ve got Hawkinz in my arms today. He’s one special miracle....that’s for sure! #hawkinzgreene #esophagealatresia #tracheoesophagealfistula #tracheomalacia #posteriortracheopexy #aortopexy #anteriortracheopexy #gtube #tubefed #tubie #thesharpcrew #littlemiracle
- Visited our favorite ENT Dr yesterday to get Hawkinz’ sleep study results. He has a bit of mild sleep apnea which is no big deal for a normal child most times. But for Hawkinz and his already complicated medical history... it’s not great news. It just adds more reasons why if he gets sick that things can be a bit complicated. So glad we have a great team of doctors looking out for him and trying to make the best decisions for him. He also apparently has medium size tonsils which they will keep an eye on. They don’t want them too big because it can also obstruct his breathing. It seems to me that this is ok news because it very well could have been much worse news! I could not imagine the results prior to his two extensive airway surgeries!! We are already on the watch for any sicknesses. I’m just wondering if we will be doing this his entire life?! Gosh I hope he gets some breaks because so far.... it’s been amazing!! #hawkinzgreene #ENTdrvisit #sleepstudyresults #esophagealatresia #tracheoesophagealfistula #tracheomalacia #thesharpcrew
- Visited our favorite ENT Dr yesterday to get Hawkinz’ sleep study results. He has a bit of mild sleep apnea which is no big deal for a normal child most times. But for Hawkinz and his already complicated medical history... it’s not great news. It just adds more reasons why if he gets sick that things can be a bit complicated. So glad we have a great team of doctors looking out for him and trying to make the best decisions for him. He also apparently has medium size tonsils which they will keep an eye on. They don’t want them too big because it can also obstruct his breathing. It seems to me that this is ok news because it very well could have been much worse news! I could not imagine the results prior to his two extensive airway surgeries!! We are already on the watch for any sicknesses. I’m just wondering if we will be doing this his entire life?! Gosh I hope he gets some breaks because so far.... it’s been amazing!! #hawkinzgreene #ENTdrvisit #sleepstudyresults #esophagealatresia #tracheoesophagealfistula #tracheomalacia #thesharpcrew
- Visited our favorite ENT Dr yesterday to get Hawkinz’ sleep study results. He has a bit of mild sleep apnea which is no big deal for a normal child most times. But for Hawkinz and his already complicated medical history... it’s not great news. It just adds more reasons why if he gets sick that things can be a bit complicated. So glad we have a great team of doctors looking out for him and trying to make the best decisions for him. He also apparently has medium size tonsils which they will keep an eye on. They don’t want them too big because it can also obstruct his breathing. It seems to me that this is ok news because it very well could have been much worse news! I could not imagine the results prior to his two extensive airway surgeries!! We are already on the watch for any sicknesses. I’m just wondering if we will be doing this his entire life?! Gosh I hope he gets some breaks because so far.... it’s been amazing!! #hawkinzgreene #ENTdrvisit #sleepstudyresults #esophagealatresia #tracheoesophagealfistula #tracheomalacia #thesharpcrew
- Oh my goodness!!!! Those of you who have seen my IG stories know THIS is happening!!! WALKING!!! I cannot even put into words how proud I am of this guy!! Let’s be honest....Hawkinz has been through so much and I had pretty low expectations. Just 4 months ago... I would have never thought this possible so soon. Just look at my boy go!!!! Thank you all so much for cheering him on and for all the messages of excitement!! I’m just in awe watching him as those momma tears start to flow!!!! It’s so nice to shed tears over something good instead of something bad!! Go baby boy! You got this! #hawkinziswalkinz #hawkinzgreene #myboyiswalking #19monthsold #walking #esophagealatresia #tracheoesophagealfistula #tracheomalacia #tubefed #thesharpcrew
- Oh my goodness!!!! Those of you who have seen my IG stories know THIS is happening!!! WALKING!!! I cannot even put into words how proud I am of this guy!! Let’s be honest....Hawkinz has been through so much and I had pretty low expectations. Just 4 months ago... I would have never thought this possible so soon. Just look at my boy go!!!! Thank you all so much for cheering him on and for all the messages of excitement!! I’m just in awe watching him as those momma tears start to flow!!!! It’s so nice to shed tears over something good instead of something bad!! Go baby boy! You got this! #hawkinziswalkinz #hawkinzgreene #myboyiswalking #19monthsold #walking #esophagealatresia #tracheoesophagealfistula #tracheomalacia #tubefed #thesharpcrew
- Oh my goodness!!!! Those of you who have seen my IG stories know THIS is happening!!! WALKING!!! I cannot even put into words how proud I am of this guy!! Let’s be honest....Hawkinz has been through so much and I had pretty low expectations. Just 4 months ago... I would have never thought this possible so soon. Just look at my boy go!!!! Thank you all so much for cheering him on and for all the messages of excitement!! I’m just in awe watching him as those momma tears start to flow!!!! It’s so nice to shed tears over something good instead of something bad!! Go baby boy! You got this! #hawkinziswalkinz #hawkinzgreene #myboyiswalking #19monthsold #walking #esophagealatresia #tracheoesophagealfistula #tracheomalacia #tubefed #thesharpcrew
- Hawkinz Greene is not always a happy little guy. He’s developed quite the little attitude when he wants something. If he wants it... he wants it NOW! I don’t think he got his impatience from me... like that’s possible! ( insert sarcasm here!😜🤣) oh and check out this sweet Dino dude outfit that was handmade by @jgarr13 (she also made our rainbow quilt!🌈). It’s perfect for him and the little pocket opens up for easy bolus feeding through his g-tube!!! The best part is that you can’t even tell that’s what it’s for!!! Thank you Jenn for this amazingly, perfect gift for him!!! Don’t forget to swipe for more cuteness!! This picture swipe has got me and now I cannot just post one!!!! #picoverload #majorcutenessfactor #hawkinzgreene #gtubefriendlyoutfit #handmade #tubie #tubefed #gtube #thesharpcrew #tracheomalacia #esophagealatresia #tracheoesophagealfistula
- Hawkinz Greene is not always a happy little guy. He’s developed quite the little attitude when he wants something. If he wants it... he wants it NOW! I don’t think he got his impatience from me... like that’s possible! ( insert sarcasm here!😜🤣) oh and check out this sweet Dino dude outfit that was handmade by @jgarr13 (she also made our rainbow quilt!🌈). It’s perfect for him and the little pocket opens up for easy bolus feeding through his g-tube!!! The best part is that you can’t even tell that’s what it’s for!!! Thank you Jenn for this amazingly, perfect gift for him!!! Don’t forget to swipe for more cuteness!! This picture swipe has got me and now I cannot just post one!!!! #picoverload #majorcutenessfactor #hawkinzgreene #gtubefriendlyoutfit #handmade #tubie #tubefed #gtube #thesharpcrew #tracheomalacia #esophagealatresia #tracheoesophagealfistula
- Hawkinz Greene is not always a happy little guy. He’s developed quite the little attitude when he wants something. If he wants it... he wants it NOW! I don’t think he got his impatience from me... like that’s possible! ( insert sarcasm here!😜🤣) oh and check out this sweet Dino dude outfit that was handmade by @jgarr13 (she also made our rainbow quilt!🌈). It’s perfect for him and the little pocket opens up for easy bolus feeding through his g-tube!!! The best part is that you can’t even tell that’s what it’s for!!! Thank you Jenn for this amazingly, perfect gift for him!!! Don’t forget to swipe for more cuteness!! This picture swipe has got me and now I cannot just post one!!!! #picoverload #majorcutenessfactor #hawkinzgreene #gtubefriendlyoutfit #handmade #tubie #tubefed #gtube #thesharpcrew #tracheomalacia #esophagealatresia #tracheoesophagealfistula
- This is how close to my bed that Hawkinz sleeps. I guess I worry a lot about him still so I need him close. I can even touch him and hear him breathe. He wears his @owletcare baby monitor on his foot each night. It’s never gone off thankfully but I’m betting it would have before his surgeries. We got this after his last surgery in June. I absolutely love being able to check on him when ever I want. I can even track his sleeping patterns, oxygen levels and his heart rate while he sleeps. I so wish we had this sooner but maybe it would have been much harder to see how much he truly was struggling. Also... check out my favorite sleep sack from @antipodesmerino . It’s perfect for my continuous tube fed fella at night! #keepinghimclose #peaceofmind #hawkinzgreene #tracheomalacia #esophagealatresia #tracheoesophagealfistula #thesharpcrew #tubefed #tubie
- This is how close to my bed that Hawkinz sleeps. I guess I worry a lot about him still so I need him close. I can even touch him and hear him breathe. He wears his @owletcare baby monitor on his foot each night. It’s never gone off thankfully but I’m betting it would have before his surgeries. We got this after his last surgery in June. I absolutely love being able to check on him when ever I want. I can even track his sleeping patterns, oxygen levels and his heart rate while he sleeps. I so wish we had this sooner but maybe it would have been much harder to see how much he truly was struggling. Also... check out my favorite sleep sack from @antipodesmerino . It’s perfect for my continuous tube fed fella at night! #keepinghimclose #peaceofmind #hawkinzgreene #tracheomalacia #esophagealatresia #tracheoesophagealfistula #thesharpcrew #tubefed #tubie
- This is how close to my bed that Hawkinz sleeps. I guess I worry a lot about him still so I need him close. I can even touch him and hear him breathe. He wears his @owletcare baby monitor on his foot each night. It’s never gone off thankfully but I’m betting it would have before his surgeries. We got this after his last surgery in June. I absolutely love being able to check on him when ever I want. I can even track his sleeping patterns, oxygen levels and his heart rate while he sleeps. I so wish we had this sooner but maybe it would have been much harder to see how much he truly was struggling. Also... check out my favorite sleep sack from @antipodesmerino . It’s perfect for my continuous tube fed fella at night! #keepinghimclose #peaceofmind #hawkinzgreene #tracheomalacia #esophagealatresia #tracheoesophagealfistula #thesharpcrew #tubefed #tubie
- Do you see it??? You all.... my baby boy is standing in his crib!!!! Hawkinz Greene is 18 months old and it's finally happening! He's doing this more and more lately. Last night he woke up at midnight. I looked over and he was standing right next to me yelling “Ma Ma”. Since his crib is on wheels we just wheel it over next to our bed so we can watch him closer. We still worry about this lil fella but he is making so much progress lately! I just worry that he will get tangled up in his feeding tube cord since he’s a bit more mobile in the crib now. Any suggestions appreciated from other tube feeding families!! He will begin 2 sessions of PT each week right after Thanksgiving. Love seeing all the progress he’s making! I guess being healthy makes a big difference. #hawkinzgreene #18monthsold #tracheomalacia #tracheoesophagealfistula #esophagealatresia #tubefed #tubie #gtube #tubiebaby #thesharpcrew #bigfamiliesrock
- Do you see it??? You all.... my baby boy is standing in his crib!!!! Hawkinz Greene is 18 months old and it& #39;s finally happening! He& #39;s doing this more and more lately. Last night he woke up at midnight. I looked over and he was standing right next to me yelling “Ma Ma”. Since his crib is on wheels we just wheel it over next to our bed so we can watch him closer. We still worry about this lil fella but he is making so much progress lately! I just worry that he will get tangled up in his feeding tube cord since he’s a bit more mobile in the crib now. Any suggestions appreciated from other tube feeding families!! He will begin 2 sessions of PT each week right after Thanksgiving. Love seeing all the progress he’s making! I guess being healthy makes a big difference. #hawkinzgreene #18monthsold #tracheomalacia #tracheoesophagealfistula #esophagealatresia #tubefed #tubie #gtube #tubiebaby #thesharpcrew #bigfamiliesrock
- Do you see it??? You all.... my baby boy is standing in his crib!!!! Hawkinz Greene is 18 months old and it's finally happening! He's doing this more and more lately. Last night he woke up at midnight. I looked over and he was standing right next to me yelling “Ma Ma”. Since his crib is on wheels we just wheel it over next to our bed so we can watch him closer. We still worry about this lil fella but he is making so much progress lately! I just worry that he will get tangled up in his feeding tube cord since he’s a bit more mobile in the crib now. Any suggestions appreciated from other tube feeding families!! He will begin 2 sessions of PT each week right after Thanksgiving. Love seeing all the progress he’s making! I guess being healthy makes a big difference. #hawkinzgreene #18monthsold #tracheomalacia #tracheoesophagealfistula #esophagealatresia #tubefed #tubie #gtube #tubiebaby #thesharpcrew #bigfamiliesrock
- We made a big change in Hawkinz’ feeding about a month ago. As a nursing momma I’ve never been a fan of formula but my baby needed it for many reasons. We started using @realfoodblends in place of his normal bolus’ of formula during the day. We add a bit more water since this is being used as a liquid for him. He’s still aspirating so he needs liquids via his feeding tube. Real food Blends are real food all puréed up for those that need nutrition this way. Here is Hawkinz being fed Beef, Potatoes and Spinach. I’m so glad that he’s tolerating these since his little belly has so many intolerances lately. #hawkinzgreene #esophagealatresia #tracheoesophagealfistula #tracheomalacia #gtube #tubie #tubefed #tubiebaby #realfoodblends #18monthsold #thesharpcrew
- We made a big change in Hawkinz’ feeding about a month ago. As a nursing momma I’ve never been a fan of formula but my baby needed it for many reasons. We started using @realfoodblends in place of his normal bolus’ of formula during the day. We add a bit more water since this is being used as a liquid for him. He’s still aspirating so he needs liquids via his feeding tube. Real food Blends are real food all puréed up for those that need nutrition this way. Here is Hawkinz being fed Beef, Potatoes and Spinach. I’m so glad that he’s tolerating these since his little belly has so many intolerances lately. #hawkinzgreene #esophagealatresia #tracheoesophagealfistula #tracheomalacia #gtube #tubie #tubefed #tubiebaby #realfoodblends #18monthsold #thesharpcrew
- We made a big change in Hawkinz’ feeding about a month ago. As a nursing momma I’ve never been a fan of formula but my baby needed it for many reasons. We started using @realfoodblends in place of his normal bolus’ of formula during the day. We add a bit more water since this is being used as a liquid for him. He’s still aspirating so he needs liquids via his feeding tube. Real food Blends are real food all puréed up for those that need nutrition this way. Here is Hawkinz being fed Beef, Potatoes and Spinach. I’m so glad that he’s tolerating these since his little belly has so many intolerances lately. #hawkinzgreene #esophagealatresia #tracheoesophagealfistula #tracheomalacia #gtube #tubie #tubefed #tubiebaby #realfoodblends #18monthsold #thesharpcrew
- My sleepy boy at this very moment. I just love watching him peacefully sleep especially after seeing him struggle to breathe for so long. It’s still hard to just relax and not worry though. We got used to those awful sounds he made which were actually reassuring that he was indeed breathing. Now.... he makes no sound and I still worry. This sweet boy of mine is one amazing little miracle!! #hawkinzgreene #sleepyboy #18monthsold #tracheomalacia #tracheoesophagealfistula #esophagealatresia #thesharpcrew #bigfamiliesrock #audreysbear #tubiefriends
- My sleepy boy at this very moment. I just love watching him peacefully sleep especially after seeing him struggle to breathe for so long. It’s still hard to just relax and not worry though. We got used to those awful sounds he made which were actually reassuring that he was indeed breathing. Now.... he makes no sound and I still worry. This sweet boy of mine is one amazing little miracle!! #hawkinzgreene #sleepyboy #18monthsold #tracheomalacia #tracheoesophagealfistula #esophagealatresia #thesharpcrew #bigfamiliesrock #audreysbear #tubiefriends
- My sleepy boy at this very moment. I just love watching him peacefully sleep especially after seeing him struggle to breathe for so long. It’s still hard to just relax and not worry though. We got used to those awful sounds he made which were actually reassuring that he was indeed breathing. Now.... he makes no sound and I still worry. This sweet boy of mine is one amazing little miracle!! #hawkinzgreene #sleepyboy #18monthsold #tracheomalacia #tracheoesophagealfistula #esophagealatresia #thesharpcrew #bigfamiliesrock #audreysbear #tubiefriends
- Oh how this little boy was longed for even before he arrived. I had everything perfectly planned out from his little sleeping area in our room to how I hoped his birth would go. I envisioned nursing him right away and until he weaned on his own, holding that newborn baby and drinking in that new baby smell, all those first baby photos from the moment he was born, bought all these cute clothing/hat sets and so much more. My expectations were VERY high after having an emergency c-section where I was not awake for Kormik's birth. I've shed so many tears and still do over all that didn't happen as I had so meticulously planned. The entire pregnancy I kept trying to convince myself to enjoy every single moment because this is supposed to be my last baby and all. Then he was born with Esophageal atresia and trachealesophageal fistula.....our lives were turned upside down. All of my hopes and dreams were shattered and I'm still trying to be "ok" with it all 18 months later. It's been one huge rollercoaster ride of emotion. No one prepares you for any of the "what if's??" Or the "unexpected". I know I'm NOT alone in my feelings because many mommas do not get all they expected either. I'd love to hear from those mommas and their experiences. Did you ever just come to terms with it all or did you always have these same feelings? I felt a bit similar after Mavis was born with EB but it was VERY different than this time. I also felt like there was some healing after we were able to have another baby or babies in our case afterwards. That was healing and I don't have that this time... #hawkinzgreene #healingamommasheart #tracheomalacia #esophagealatresia #tracheoesophagealfistula #thesharpcrew
- Oh how this little boy was longed for even before he arrived. I had everything perfectly planned out from his little sleeping area in our room to how I hoped his birth would go. I envisioned nursing him right away and until he weaned on his own, holding that newborn baby and drinking in that new baby smell, all those first baby photos from the moment he was born, bought all these cute clothing/hat sets and so much more. My expectations were VERY high after having an emergency c-section where I was not awake for Kormik& #39;s birth. I& #39;ve shed so many tears and still do over all that didn& #39;t happen as I had so meticulously planned. The entire pregnancy I kept trying to convince myself to enjoy every single moment because this is supposed to be my last baby and all. Then he was born with Esophageal atresia and trachealesophageal fistula.....our lives were turned upside down. All of my hopes and dreams were shattered and I& #39;m still trying to be "ok" with it all 18 months later. It& #39;s been one huge rollercoaster ride of emotion. No one prepares you for any of the "what if& #39;s?? " Or the "unexpected". I know I& #39;m NOT alone in my feelings because many mommas do not get all they expected either. I& #39;d love to hear from those mommas and their experiences. Did you ever just come to terms with it all or did you always have these same feelings? I felt a bit similar after Mavis was born with EB but it was VERY different than this time. I also felt like there was some healing after we were able to have another baby or babies in our case afterwards. That was healing and I don& #39;t have that this time... #hawkinzgreene #healingamommasheart #tracheomalacia #esophagealatresia #tracheoesophagealfistula #thesharpcrew
- Oh how this little boy was longed for even before he arrived. I had everything perfectly planned out from his little sleeping area in our room to how I hoped his birth would go. I envisioned nursing him right away and until he weaned on his own, holding that newborn baby and drinking in that new baby smell, all those first baby photos from the moment he was born, bought all these cute clothing/hat sets and so much more. My expectations were VERY high after having an emergency c-section where I was not awake for Kormik's birth. I've shed so many tears and still do over all that didn't happen as I had so meticulously planned. The entire pregnancy I kept trying to convince myself to enjoy every single moment because this is supposed to be my last baby and all. Then he was born with Esophageal atresia and trachealesophageal fistula.....our lives were turned upside down. All of my hopes and dreams were shattered and I'm still trying to be "ok" with it all 18 months later. It's been one huge rollercoaster ride of emotion. No one prepares you for any of the "what if's??" Or the "unexpected". I know I'm NOT alone in my feelings because many mommas do not get all they expected either. I'd love to hear from those mommas and their experiences. Did you ever just come to terms with it all or did you always have these same feelings? I felt a bit similar after Mavis was born with EB but it was VERY different than this time. I also felt like there was some healing after we were able to have another baby or babies in our case afterwards. That was healing and I don't have that this time... #hawkinzgreene #healingamommasheart #tracheomalacia #esophagealatresia #tracheoesophagealfistula #thesharpcrew
- Repost: I can't resist sharing these sneak peek pictures of Hawkinz during our session with @jordanlexus.photography . His Beads of courage that surround him symbolize his amazing journey with Esophageal atresia, tracheoesophageal fistula and severe tracheomalacia. I've shared his journey openly from the beginning but it's really something amazing to see it or actually string it lovingly for him. It's surely been a labor of LOVE for my strong little boy! Each bead represents one tiny piece of his journey. They share the good days and even the really tough ones! The yellow beads are for each night he's spent in the hospital. A star is for one of the 6 surgeries he's bravely endured. Rainbows are for therapies or nurse home visits, black is for each day he was poked.... most days it was more times than I can count on my fingers since he's got such spidery veins, blue are for doctors visits, square heart for one of his many hospital admissions, green for the days that he was NPO, x-rays or tests are light green, purple for days Requiring an IV, pink for respiratory support, lime for days he's had a fever, red for the times he's required blood, Orange for his central lines or PIC lines and so much more!!! My most favorite Beads are his "courage Beads". They are for those days that were extra hard and he needed to be much stronger than he was each and every day..... such as his surgery days, special testing days, unusual occurrences, and the times he's stopped breathing. Right here is 776 beads so far!!! Hawkinz Greene... you are stronger than you know!!! Your tiny little body is covered in scars that tell your story. Right now you don't understand the magnitude of all that you've endured. One day we will be able to explain your amazing journey using your BEADS OF COURAGE!!! Thank you @beadsofcourage for such an amazing program for such special little ones like my Hawkinz. #beadstrong #beadsofcourage #hawkinzgreene #esophagealatresia #tracheoesophagealfistula #tracheomalacia #gtube #tubie #tubefed #babyboy #18monthsold #thesharpcrew #onetoughlittleboy #bigjourney
- Repost: I can& #39;t resist sharing these sneak peek pictures of Hawkinz during our session with @jordanlexus.photography . His Beads of courage that surround him symbolize his amazing journey with Esophageal atresia, tracheoesophageal fistula and severe tracheomalacia. I& #39;ve shared his journey openly from the beginning but it& #39;s really something amazing to see it or actually string it lovingly for him. It& #39;s surely been a labor of LOVE for my strong little boy! Each bead represents one tiny piece of his journey. They share the good days and even the really tough ones! The yellow beads are for each night he& #39;s spent in the hospital. A star is for one of the 6 surgeries he& #39;s bravely endured. Rainbows are for therapies or nurse home visits, black is for each day he was poked.... most days it was more times than I can count on my fingers since he& #39;s got such spidery veins, blue are for doctors visits, square heart for one of his many hospital admissions, green for the days that he was NPO, x-rays or tests are light green, purple for days Requiring an IV, pink for respiratory support, lime for days he& #39;s had a fever, red for the times he& #39;s required blood, Orange for his central lines or PIC lines and so much more!!! My most favorite Beads are his "courage Beads". They are for those days that were extra hard and he needed to be much stronger than he was each and every day..... such as his surgery days, special testing days, unusual occurrences, and the times he& #39;s stopped breathing. Right here is 776 beads so far!!! Hawkinz Greene... you are stronger than you know!!! Your tiny little body is covered in scars that tell your story. Right now you don& #39;t understand the magnitude of all that you& #39;ve endured. One day we will be able to explain your amazing journey using your BEADS OF COURAGE!!! Thank you @beadsofcourage for such an amazing program for such special little ones like my Hawkinz. #beadstrong #beadsofcourage #hawkinzgreene #esophagealatresia #tracheoesophagealfistula #tracheomalacia #gtube #tubie #tubefed #babyboy #18monthsold #thesharpcrew #onetoughlittleboy #bigjourney
- Repost: I can't resist sharing these sneak peek pictures of Hawkinz during our session with @jordanlexus.photography . His Beads of courage that surround him symbolize his amazing journey with Esophageal atresia, tracheoesophageal fistula and severe tracheomalacia. I've shared his journey openly from the beginning but it's really something amazing to see it or actually string it lovingly for him. It's surely been a labor of LOVE for my strong little boy! Each bead represents one tiny piece of his journey. They share the good days and even the really tough ones! The yellow beads are for each night he's spent in the hospital. A star is for one of the 6 surgeries he's bravely endured. Rainbows are for therapies or nurse home visits, black is for each day he was poked.... most days it was more times than I can count on my fingers since he's got such spidery veins, blue are for doctors visits, square heart for one of his many hospital admissions, green for the days that he was NPO, x-rays or tests are light green, purple for days Requiring an IV, pink for respiratory support, lime for days he's had a fever, red for the times he's required blood, Orange for his central lines or PIC lines and so much more!!! My most favorite Beads are his "courage Beads". They are for those days that were extra hard and he needed to be much stronger than he was each and every day..... such as his surgery days, special testing days, unusual occurrences, and the times he's stopped breathing. Right here is 776 beads so far!!! Hawkinz Greene... you are stronger than you know!!! Your tiny little body is covered in scars that tell your story. Right now you don't understand the magnitude of all that you've endured. One day we will be able to explain your amazing journey using your BEADS OF COURAGE!!! Thank you @beadsofcourage for such an amazing program for such special little ones like my Hawkinz. #beadstrong #beadsofcourage #hawkinzgreene #esophagealatresia #tracheoesophagealfistula #tracheomalacia #gtube #tubie #tubefed #babyboy #18monthsold #thesharpcrew #onetoughlittleboy #bigjourney
- Hawkinz Greene had a sleep study last night. Let's be honest here... they are NOT my favorite thing. I don't know about anyone else but I don't think parents are allowed to actually sleep! I know I never do! Hawkinz was NOT happy about being there at all. After all he's been through he hates to be touched, anything on him and being somewhere unfamiliar! With a sleep study... all those things happen so it was not easy for him. They put the belts around his belly and that didn't make him happy. Then they moved to a few different leads and the oximeter on his toe put him over the edge! Then he was screaming and thrashing!! She decided to wait on the ones for his head and the nasal cannula until he was asleep. He would not let me rock him to sleep as he was still too busy throwing a fit over the ones on his feet. I ended up laying next to him and he was asleep pretty quickly. The tech was then able to add the leads to his head easily. She tried the nasal cannula a few times but no matter how deep he was sleeping.... it was NOT happening so they gave up on that part. For the most part after all of that he slept pretty well. He only woke here and there trying to find his binky just as he does at home. We should have the results in a few weeks when we see the ENT Dr. Happy Sunday friends!! #sleepstudy #nofun #hawkinzgreene #esophagealatresia #tracheoesophagealfistula #tracheomalacia #thesharpcrew #tubefed #tubie
- Hawkinz Greene had a sleep study last night. Let& #39;s be honest here... they are NOT my favorite thing. I don& #39;t know about anyone else but I don& #39;t think parents are allowed to actually sleep! I know I never do! Hawkinz was NOT happy about being there at all. After all he& #39;s been through he hates to be touched, anything on him and being somewhere unfamiliar! With a sleep study... all those things happen so it was not easy for him. They put the belts around his belly and that didn& #39;t make him happy. Then they moved to a few different leads and the oximeter on his toe put him over the edge! Then he was screaming and thrashing!! She decided to wait on the ones for his head and the nasal cannula until he was asleep. He would not let me rock him to sleep as he was still too busy throwing a fit over the ones on his feet. I ended up laying next to him and he was asleep pretty quickly. The tech was then able to add the leads to his head easily. She tried the nasal cannula a few times but no matter how deep he was sleeping.... it was NOT happening so they gave up on that part. For the most part after all of that he slept pretty well. He only woke here and there trying to find his binky just as he does at home. We should have the results in a few weeks when we see the ENT Dr. Happy Sunday friends!! #sleepstudy #nofun #hawkinzgreene #esophagealatresia #tracheoesophagealfistula #tracheomalacia #thesharpcrew #tubefed #tubie
- Hawkinz Greene had a sleep study last night. Let's be honest here... they are NOT my favorite thing. I don't know about anyone else but I don't think parents are allowed to actually sleep! I know I never do! Hawkinz was NOT happy about being there at all. After all he's been through he hates to be touched, anything on him and being somewhere unfamiliar! With a sleep study... all those things happen so it was not easy for him. They put the belts around his belly and that didn't make him happy. Then they moved to a few different leads and the oximeter on his toe put him over the edge! Then he was screaming and thrashing!! She decided to wait on the ones for his head and the nasal cannula until he was asleep. He would not let me rock him to sleep as he was still too busy throwing a fit over the ones on his feet. I ended up laying next to him and he was asleep pretty quickly. The tech was then able to add the leads to his head easily. She tried the nasal cannula a few times but no matter how deep he was sleeping.... it was NOT happening so they gave up on that part. For the most part after all of that he slept pretty well. He only woke here and there trying to find his binky just as he does at home. We should have the results in a few weeks when we see the ENT Dr. Happy Sunday friends!! #sleepstudy #nofun #hawkinzgreene #esophagealatresia #tracheoesophagealfistula #tracheomalacia #thesharpcrew #tubefed #tubie

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