Joseph had his procedures done at the hospital on the 9th and has recovered so nicely. Since then, we have seen such wonderful improvements in him! The prescription formula finally seems to be working and his intestines are finally healing. We've even been given the green light to start introducing baby food! We have to go slowly, only one new food every 5-7 days to monitor for allergies. We tried rice cereal but his tummy didn't seem to like that very much so we switched to pears. He loves pears and is doing so well learning to eat them. In a few more days, we're going to be able to add a veggie. Not quite sure how he'll accept it after 5 days of sweet pears...
Joseph has changed so much in the past month! His 2 bottom teeth that have broken through and he can crawl now! He's still mastering the coordination and balance and isn't very good at it, but wow is he thrilled that he can move forward towards something he wants! It's amazing to see all changes and pregress, especially considering where he started from! He's finally getting a little too long for his 6 month clothes. We've gotten so much use out of all his baby clothes because he stays in a size for so long. And now we're going to be reusing everything for our next little boy!
Monday, February 20, 2012
Sunday, January 15, 2012
More worries
Joseph had his appointment with his GI doctor on Wednesday and I shared my worries with her: for the first two weeks since switching Joseph to the new formula, he was golden. Then week 3 he started to have diarrhea, and then week 4, the mucus started up again. He would poop up to 8 times a day and it was all liquid and mucus. Joseph seemed to have developed an allergy to this hypoallergenic formula. My worry is that he is going to develop an allergy to any food item he is exposed to and she seemed to think along those same lines. He's still not on any solid foods. She had me switch him to a prescription formula called Elecare and we postponed his procedures and intestinal biopsy until January 31st. We started the Elecare on Wednesday and I have yet to see any improvement - when we had switched him to the previous formula, the improvement was almost instantaneous. He just seems to keep getting worse; the past couple days, his reflux has gotten so bad to the point where he chokes on it and it reeks of a very strong acid. I can tell it's burning him because he'll twitch and make faces. It's different from his normal spit-up. They all day today, his poop was dark green and sticky. This evening, he started having blood in his poop. I called the GI on-call and he seemed to think that he can't have a reaction to the Elecare and it was probably left over from the previous formula and that I should just keep an eye on him and he'll get Joseph's GI doctor a message for tomorrow. I'm not so sure I agree with him, but I'm just going to have to sit with it. Joseph's acting fine and doesn't seem to be in distress at all; I'm just worried because we haven't ever actually seen blood in his poop until the last two this evening. I really hate this awful feeling of worry that is just twisting my stomach into knots. There's nothing I can do to help my baby boy, I'm just watching him get worse and worse. I have to wait and see what his doctor thinks tomorrow. It's out of my hands and this is a difficult feeling to sit with. I keep trying to remind myself that it may be out of my hands but God still has his hands all over it. I just can't wrap my head around why my baby must suffer like this. Whenever I start to wonder why God allows this, I am reminded of the answer I received so many months ago: We had just brought Joseph home from the hospital and I was still having a difficult time processing through all the trauma of what we've been through with him. I was lying awake, just wondering why God would allow such horrible suffering to an innocent baby. I was reliving all the horrible pain he was in and I could recall offering up all of his surgeries and his suffering. I was overtaken with a sense of calm understanding and I just knew the answer, as though it had been whispered to my heart. God allowed this to happen to my son so that his suffering could save souls that would have otherwise not made it to Heaven. Now each of these souls who are rejoicing in Everlasting Life are devoted to praying for Joseph and guarding his soul for all his life. It's still so difficult to accept my child's suffering, but I do find peace in knowing that God has him cradled safely, regardless of what happens.
Sunday, January 1, 2012
Two steps forward, one step back
I'm worried Joseph's improvements have been short-lived...his GI system is starting to act up again. He did so well for the first couple weeks of the new formula but now his poops have become more diarrhea than not and recently more mucous is showing up. His breath is starting to take on that fermented odor again, he's starting to choke on his reflux, and he's pooping 7-8 times a day. I'm praying it's something simple like teething, but it just doesn't explain away all these resurfacing symptoms. The skin of his bottom is so raw, there's patches where there is no skin left and it bleeds. I've started using wound care dressings that his visiting nurse provided when we had to deal with this after bringing him home from the hospital. They're helping to the point where he is not screaming in pain with each diaper change.
Joseph has his appt with the GI specialist on the 11th. I really doubt she'll want us to start food with him, especially with this recent turn. I imagine she may want to do another stool study to see if there's still blood in his stool and then, depending on that, she has mentioned doing an endoscopy and colonoscopy and doing biopsies of his intestines. She may just skip to that, or she may suggest a different formula for starters. You know you have a special-needs baby when you look forward to doctors appointments and specialist appointments. The stress of not having a handle on how to help my son is very wearing. I find my strength through my husband and the prayers of family and friends. Thank you everyone, for giving us the continued prayers from which we draw our strength and perseverance. Even though our journey has been two steps forward, one step back, in the end, we're one step ahead of the last.
On a brighter note, Joseph is 8 months old today! What an amazing gift he continues to be! He's getting so good at sitting on his own (for 30 seconds, until he gets excited and forgets to balance!) and he can roll side to side. His newest achievement is the baby sit-up: if I hold down his legs, sometimes he can pull himself right up to a sitting position without grabbing onto anything - his abs are definetly doing better and getting stronger. He's almost rolling from his back to his tummy but his arm keeps getting in the way. We can tell he wants to crawl so badly! We're still working with OT and PT every week to help with his hypertonicity and development. He's still pretty stiff and still having a lot of trouble grabbing and holding things and sometimes he forgets to use his right arm.
Weight check on Wednesday!
Happy New Year!
Joseph has his appt with the GI specialist on the 11th. I really doubt she'll want us to start food with him, especially with this recent turn. I imagine she may want to do another stool study to see if there's still blood in his stool and then, depending on that, she has mentioned doing an endoscopy and colonoscopy and doing biopsies of his intestines. She may just skip to that, or she may suggest a different formula for starters. You know you have a special-needs baby when you look forward to doctors appointments and specialist appointments. The stress of not having a handle on how to help my son is very wearing. I find my strength through my husband and the prayers of family and friends. Thank you everyone, for giving us the continued prayers from which we draw our strength and perseverance. Even though our journey has been two steps forward, one step back, in the end, we're one step ahead of the last.
On a brighter note, Joseph is 8 months old today! What an amazing gift he continues to be! He's getting so good at sitting on his own (for 30 seconds, until he gets excited and forgets to balance!) and he can roll side to side. His newest achievement is the baby sit-up: if I hold down his legs, sometimes he can pull himself right up to a sitting position without grabbing onto anything - his abs are definetly doing better and getting stronger. He's almost rolling from his back to his tummy but his arm keeps getting in the way. We can tell he wants to crawl so badly! We're still working with OT and PT every week to help with his hypertonicity and development. He's still pretty stiff and still having a lot of trouble grabbing and holding things and sometimes he forgets to use his right arm.
Weight check on Wednesday!
Happy New Year!
Monday, December 26, 2011
The bright side
Since switching Joseph to the special formula, we have noticed such amazing improvements in him! He isn't in pain when he eats, his food is actually digesting, he's pooping more normally and more frequently, his breath isn't fermented anymore, and overall he seems to be more comfortable. Seeing how well he's doing has made giving up breastfeeding a little easier. I still miss it and how convienent and inexpensive it was! No bottles to deal with, no formula to buy, no washing before and after feeding. I used to just be able to pull him into bed with me at night and when we went out during the day, I never had to worry about having bottles and water and formula - such a pain! But my son seems so much better and it puts everything into perspective when that is my focus. He is slowly starting to gain weight again. We had a weight check and he gained 7oz in 2 weeks. He's up to 16lbs 9oz! His follow-up with the GI specialist is January 11th. Hopefully we'll find out about starting solids with him. He also has his follow-up hearing test. He failed the last one and has fluid in his left ear. They want to check him again next month and I'm really hoping he's better because he does not need to have another surgery. But I've come to learn that if the end result is better than how you start, the process must be worth it - look at where we started with Joseph, all we've been through, and where he is today!
I swear my son is the happiest baby I have ever seen! We are so BLESSED to share the gift of his life!!
I swear my son is the happiest baby I have ever seen! We are so BLESSED to share the gift of his life!!
Thursday, December 15, 2011
Another Miracle!
God has graced us with another Miracle! It would appear that our miscarriage we experienced was actually the loss of a twin and one baby survived! They found a heartbeat yesterday! I know there is this special baby up in Heaven named Avery who passed away from gastroschisis complications and his Mommy founded the Gastroschisis support group Avery's Angel's. This support group was a Godsend for what we've been through with Joseph. We named the twin we lost Jordan Avery after this amazing little boy. My due date is July 30, the anniversary of the day Avery earned his wings!
Friday, December 9, 2011
Letting go
Joseph's stool sample analysis came back today and it was not at all what I expected. His stool had blood and white blood cells in it, as well as evidence of severe malabsorption. Basically his intestines are so irritated and inflamed that they are bleeding and his body is not absorbing nutrients which explains the halt in his weight gain. The GI specialist said that at his age, she thinks this irritation is from allergies, where his immune system is attacking everything he eats and his poor intestines are caught in the middle. Because of the gastroschisis and motility issues, he is very predisposed to food allergies. His GI specialist wants me to stop breastfeeding him and switch him to a special pre-digested formula to see if this helps him. She wants to try this before moving on to more invasive tests like an endoscopy and colonoscopy (camera down his throat and up his bum) where he would have to be put under general anesthesia.
I have worked so hard to be able to breastfeed my child and now that is being taken away. For the whole time he was in the hospital, I was unable to nurse him, and I worked my butt of around the clock to establish and maintain my milk supply. When Joseph could finally nurse, we had such a difficult and painful time learning because of how long he was on the vent and all the oral trauma he sustained. But we stuck with it and were eventually successful. It has become his one and only comfort - he doesn't have a special blanket, he won't take a pacifier, he is a boob baby! And now I am having to take away his only comfort and it's breaking my heart all over again. He was looking at me this evening, crying, wondering why I was doing this to him. It's ripping me apart. I'm trying to convince myself that I'm doing this for his own good and I'm trying to do what is best for him. Neither of us are ready to stop breastfeeding and this loss is going to take a toll on both of us. This morning, I had no idea that I would be nursing my son for the last time and I just want that moment back more than anything else right now.
I have worked so hard to be able to breastfeed my child and now that is being taken away. For the whole time he was in the hospital, I was unable to nurse him, and I worked my butt of around the clock to establish and maintain my milk supply. When Joseph could finally nurse, we had such a difficult and painful time learning because of how long he was on the vent and all the oral trauma he sustained. But we stuck with it and were eventually successful. It has become his one and only comfort - he doesn't have a special blanket, he won't take a pacifier, he is a boob baby! And now I am having to take away his only comfort and it's breaking my heart all over again. He was looking at me this evening, crying, wondering why I was doing this to him. It's ripping me apart. I'm trying to convince myself that I'm doing this for his own good and I'm trying to do what is best for him. Neither of us are ready to stop breastfeeding and this loss is going to take a toll on both of us. This morning, I had no idea that I would be nursing my son for the last time and I just want that moment back more than anything else right now.
Sunday, December 4, 2011
Alphabet Plans
If at first you don't succeed, try, try again. I am often grateful that we have so many letters to fail with. It's encouraging that if Plan A doesn't work, you can move on to Plan B, C, etc. This seems to be all we have to go on with Joseph right now.
Joseph had his appointment with the GI specialist and unfortunately his intestines are getting worse. The upper GI and small bowel follow through study showed that they're still dilated. When he was trying to pass all the contrast he had to drink for this study, his intestines didn't function to move it all the way through, and it sat there inside of him long enough to cement and he really struggled with this. I had to lube up his bum so he could get the rocks out. His infection didn't respond to the first round of antibiotics and his breath is smelling more and more fermented. His gas is becoming so foul-smelling that I struggle not to gag! And, his reflux is getting worse, sometimes it's liquid, sometimes like cottage cheese, and sometimes a big blob of mucus. His stools are also very liquid and mucusy. To top it all off, he's lost about half a pound in the past month. So, Plan B involves stopping his reflux medication [which could be contributing to the SBBO (small bowel bacterial overgrowth)], getting a stool sample for cultures, switching him to a milti-strain probiotic, and trying a round of a different kind of antibiotic. If this doesn't work, the GI wants to consider a colonoscopy and endoscopy (a camera up his butt and down his throat) to see the extent of the irritation and inflamation.
Trying to get a stool sample from a 7 month old became one of those things you should only see in movies. Plan A was to take one of my plastic breast milk storage bags, cut off the top, and generously tape it to his bottom, then place the whole contraption in a diaper 1 size to big for him. Let me just say, the poop went everywhere BUT the bag. For Plan B, I wrapped his whole bottom in Saran wrap with an area open for his pee, and then put a diaper over the whole contraption. And he didn't poop. Plan C: q-tip with surgi lube - gentle rectal stimulation with a cup in the other hand to catch anything that came out. Believe it or not, it worked like a charm!
Joseph is on day 5 of the new antibiotic and I still haven't noticed improvement. One thing that the GI suggested was adding a scoup of formula to his bottle to increase the calories in it, that way he won't keep loosing weight. I tried this and he threw the whole thing up and got a bellyache. He seems to be the hungriest at night and has been waking up every couple hours wanting to nurse. It's really making for some long days (and nights).
Joseph had his appointment with the GI specialist and unfortunately his intestines are getting worse. The upper GI and small bowel follow through study showed that they're still dilated. When he was trying to pass all the contrast he had to drink for this study, his intestines didn't function to move it all the way through, and it sat there inside of him long enough to cement and he really struggled with this. I had to lube up his bum so he could get the rocks out. His infection didn't respond to the first round of antibiotics and his breath is smelling more and more fermented. His gas is becoming so foul-smelling that I struggle not to gag! And, his reflux is getting worse, sometimes it's liquid, sometimes like cottage cheese, and sometimes a big blob of mucus. His stools are also very liquid and mucusy. To top it all off, he's lost about half a pound in the past month. So, Plan B involves stopping his reflux medication [which could be contributing to the SBBO (small bowel bacterial overgrowth)], getting a stool sample for cultures, switching him to a milti-strain probiotic, and trying a round of a different kind of antibiotic. If this doesn't work, the GI wants to consider a colonoscopy and endoscopy (a camera up his butt and down his throat) to see the extent of the irritation and inflamation.
Trying to get a stool sample from a 7 month old became one of those things you should only see in movies. Plan A was to take one of my plastic breast milk storage bags, cut off the top, and generously tape it to his bottom, then place the whole contraption in a diaper 1 size to big for him. Let me just say, the poop went everywhere BUT the bag. For Plan B, I wrapped his whole bottom in Saran wrap with an area open for his pee, and then put a diaper over the whole contraption. And he didn't poop. Plan C: q-tip with surgi lube - gentle rectal stimulation with a cup in the other hand to catch anything that came out. Believe it or not, it worked like a charm!
Joseph is on day 5 of the new antibiotic and I still haven't noticed improvement. One thing that the GI suggested was adding a scoup of formula to his bottle to increase the calories in it, that way he won't keep loosing weight. I tried this and he threw the whole thing up and got a bellyache. He seems to be the hungriest at night and has been waking up every couple hours wanting to nurse. It's really making for some long days (and nights).
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