Just a quick drive by post...but our little peanut had a follow up barium swallow study yesterday to evaluate his swallowing ability. We gave him several different types of things to swallow - formula in different consistencies, carrots and rice cereal. He did the best with the carrots. Overall, however he did great and we got the go ahead to start introducing some formula and solids into his routine! I am cautiously encouraged! These won't replace his tube feeds yet but it's a start!! We also got some chewing toys to get him used to different textures. One looks like a dog chew toy and the other looks like a two sided spoon that we can dip in different foods to get him a texture and flavor variety. The speech pathologist also suggested that we do more tummy time with him and that we call the local child and family connections to get him some therapy because he is delayed due to his extended hospitalizations. He doesn't roll over yet. He will sit supported but only on soft surfaces. So, I will be calling them on Monday! I am so happy for our littlest man!!
In other news the babies turned 6 months old on Thursday! I can't believe 6 months have gone by. If I sit and think about all we have been through in the last 6 months I just want to cry because I can't believe we (literally!) all survived it. We are totally and completely broke from all of it but so blessed to have all of our little men with us on a daily basis.
Saturday, December 3, 2011
Thursday, December 1, 2011
Boy Wonder turns 2
A had a birthday about a week and half ago which I have been meaning to blog about but somehow the day always seems to get away from me! We decided to have family and friends over to our little 1500 square foot corner of the world - crowded much - um, yes! We only had about 20 people but that's a lot of bodies squeezed into a small space (we so need a bigger abode!). Regardless of the lack of breathing room, it went well! A little past nap time and it showed on poor A but he had fun. He racked up more toys than one little 2 year old should probably have and got overwhelmed by the presents and the people (my kid wouldn't eat his chocolate cake - I may have to disown him!). After he got up from his nap, he systematically brought every box to us to open so he could play with the toys inside. Now, a week and a half later he has his favorites - all train related (shocking!). Unfortunately, since I was playing the hostess with the mostess I didn't get a lot of photos but here are a few.
The cake - made by grandma! (it had three coal cars too!)
Opening presents with the "help" of his cousin.
All choo choo's all the time!
Not a fan of the cake!
Wednesday, November 9, 2011
The Background
Our not so little family was long time coming. We tried for 19 months before we conceived our son A. When he was born we were elated and felt like we had the world by the tail. Then, when A was about 7 months old we started talking about a sibling for A. Mama is an only child and wanted siblings for A to grow up with. Also, we are not spring chickens so this was something that was going to have to start happening soon, especially given the amount of time it took us to conceive A. When A was 10.5 months old, we got pregnant with W and H. That is the long and short of it though there are a lot of in-between facts that are unimportant here.
A is a typical little (almost) 2 year old. He loves trains - or choo choos, as he calls them. He asks to watch Thomas the Train incessantly, to the point it can get pretty annoying - but all in the same it's super cute! He also still takes a mid-day nap but on the few days that he misses it, he does OK. However, more than one day of a missed nap and you can tell he is lacking sleep. He is a tall, skinny kid - we don't quite know where he comes from with that body type! He has always been a pretty go with the flow child, but we can most definitely tell he is getting close to two!
W is one of two identical twins. He was always the bigger baby in the womb and still is - he was born weighting 7lbs10oz. At our last doctor visit he weighed almost 16 pounds - at 4 months old! He is already firmly wearing size 6 month clothes. He smiled at 6 weeks old. He is starting to belly laugh, roll over and is attempting to sit. He is also sucking his thumb, it's too cute!
H is the second of our identical twins (we were told the placenta was monochorionic - right now we don't think they really look alike). His story is already a lengthy one. Of course, since W has always been the larger of the twins, H has always been smaller. He was born weighing 5lbs10oz. He spent nearly one week at our local NICU and then required an emergency helicopter ride to the nearest city to have a coarctation repair. His aorta at the point of curvature was nearly 95% closed. He had open heart surgery to correct the problem at one week old. He was released to go home one week after his heart surgery and we had everyone home when the twins were about 2 weeks old. Then on July 13 of this year, he was once again airlifted to the children's hospital where he had his coarctation repair because of respiratory distress. The following day he went into cardiac arrest after having a larango spasm caused by water that had escaped from his high flow nasal canula. He arrested for 10 minutes. He was on life-support and, quite literally spent the next four+ weeks fighting for his life from an unknown infection. He spent that entire time (and then some) in both the CICU and the PICU. He saw just about every specialty in the hospital from neurology to GI. None of the specialty docs could find a cause for the infection or its resulting complications (blood in his stool, low hemoglobin counts, etc.) After he stabilized and was transferred out of ICU, they started to feed him and realized that he was beginning to relapse. He returned to the PICU. Because he was returned they decided to run additional diagnostic tests to see why he was relapsing. He had a 2nd bronchoscope (he had one while on life support to see why his airway had collapased - at the time they decided he has severe tracheal malaysia). It was determined his larynx was spamming due to moderate to severe reflux. Per the doctor that eventually figured everything out (we call him out Dr. House!), the reflux was causing severe irritation to his voice box and causing it to collapse at the littlest irritation. It was also determined after a swallow study that he was aspirating a large amount of his feeding but he was not coughing in the attempt to protect his airway - he was just swallowing it into his lungs. As a result if these two issues he had another dual surgery. He had a fundoplication done to put a wrap around his lower esophagus and the very upper part of his stomach to prevent any more reflux and he had a g-tube put into his belly so we could directly feed him. We brought him home on labor day weekend after spending nearly 8 weeks in the hospital. Frankly, the next few weeks were awful. He was a seriously colicky baby - crying almost all of the time. In early October we had an appointment with him pulmonologist (our Dr. House) and told him of H's colic. He was also having some breathing issues still. He put him on a 15 mg dose of prevacid and gave him a flovent inhaler. The next day - we had a different child! A pleasant child! Since then, he has been thriving, attempting to catch up with his twin. He is still much smaller in length - he doesn't even hit the charts yet; but weight wise he is at about the 35th percentile! So, he needs to grow in length but he is meeting some developmental milestones. He has yet to roll over but he is starting to get the motion down. He has developed a nerdy chuckle (I have gotten him to belly laugh once) and sleeping just a bit better.
So, that's how it all started...read along with us as we journey through this parenting thing!
A is a typical little (almost) 2 year old. He loves trains - or choo choos, as he calls them. He asks to watch Thomas the Train incessantly, to the point it can get pretty annoying - but all in the same it's super cute! He also still takes a mid-day nap but on the few days that he misses it, he does OK. However, more than one day of a missed nap and you can tell he is lacking sleep. He is a tall, skinny kid - we don't quite know where he comes from with that body type! He has always been a pretty go with the flow child, but we can most definitely tell he is getting close to two!
W is one of two identical twins. He was always the bigger baby in the womb and still is - he was born weighting 7lbs10oz. At our last doctor visit he weighed almost 16 pounds - at 4 months old! He is already firmly wearing size 6 month clothes. He smiled at 6 weeks old. He is starting to belly laugh, roll over and is attempting to sit. He is also sucking his thumb, it's too cute!
H is the second of our identical twins (we were told the placenta was monochorionic - right now we don't think they really look alike). His story is already a lengthy one. Of course, since W has always been the larger of the twins, H has always been smaller. He was born weighing 5lbs10oz. He spent nearly one week at our local NICU and then required an emergency helicopter ride to the nearest city to have a coarctation repair. His aorta at the point of curvature was nearly 95% closed. He had open heart surgery to correct the problem at one week old. He was released to go home one week after his heart surgery and we had everyone home when the twins were about 2 weeks old. Then on July 13 of this year, he was once again airlifted to the children's hospital where he had his coarctation repair because of respiratory distress. The following day he went into cardiac arrest after having a larango spasm caused by water that had escaped from his high flow nasal canula. He arrested for 10 minutes. He was on life-support and, quite literally spent the next four+ weeks fighting for his life from an unknown infection. He spent that entire time (and then some) in both the CICU and the PICU. He saw just about every specialty in the hospital from neurology to GI. None of the specialty docs could find a cause for the infection or its resulting complications (blood in his stool, low hemoglobin counts, etc.) After he stabilized and was transferred out of ICU, they started to feed him and realized that he was beginning to relapse. He returned to the PICU. Because he was returned they decided to run additional diagnostic tests to see why he was relapsing. He had a 2nd bronchoscope (he had one while on life support to see why his airway had collapased - at the time they decided he has severe tracheal malaysia). It was determined his larynx was spamming due to moderate to severe reflux. Per the doctor that eventually figured everything out (we call him out Dr. House!), the reflux was causing severe irritation to his voice box and causing it to collapse at the littlest irritation. It was also determined after a swallow study that he was aspirating a large amount of his feeding but he was not coughing in the attempt to protect his airway - he was just swallowing it into his lungs. As a result if these two issues he had another dual surgery. He had a fundoplication done to put a wrap around his lower esophagus and the very upper part of his stomach to prevent any more reflux and he had a g-tube put into his belly so we could directly feed him. We brought him home on labor day weekend after spending nearly 8 weeks in the hospital. Frankly, the next few weeks were awful. He was a seriously colicky baby - crying almost all of the time. In early October we had an appointment with him pulmonologist (our Dr. House) and told him of H's colic. He was also having some breathing issues still. He put him on a 15 mg dose of prevacid and gave him a flovent inhaler. The next day - we had a different child! A pleasant child! Since then, he has been thriving, attempting to catch up with his twin. He is still much smaller in length - he doesn't even hit the charts yet; but weight wise he is at about the 35th percentile! So, he needs to grow in length but he is meeting some developmental milestones. He has yet to roll over but he is starting to get the motion down. He has developed a nerdy chuckle (I have gotten him to belly laugh once) and sleeping just a bit better.
So, that's how it all started...read along with us as we journey through this parenting thing!
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