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!!

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!

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.

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).

Jordan Avery

I feel like I fail at making babies. My first baby was born with a devistating birth defect and my second baby didn't survive...I'm 0 for 2 in the healthy baby department.

Shortly after finding out that we were expecting our second baby, God called our Angel back to Heaven. Because we did not yet know if our child was a boy or a girl, we chose the name Jordan Avery. This loss is such a deep and silent suffering. It is made so much worse by those who think "it's for the best". What is best about the death of a baby?!! Just because I have no body to show for it does not negate my loss. All I have of my Angel Child are two pink lines and what could have been.

Rough week

I'd call this one of the rougher weeks we've had with Joseph in a while.  First of all, last week, we brought Joseph to the GI specialist and learned that first, he should have been seen sooner but his pediatrician didn't think he needed the appointment in the first place and second, he is suffering multiple complications that include: worsening reflux, intestinal dilation, nerve damage to his intestines that is causing motility issues, and an overgrowth of bacteria in his intestines that are fermenting everything he eats - you can smell it on his breath, it is very weird. His breath smells very fruity and acidic. First step was to stop any solid foods we were starting to introduce and feed him strictly breast milk (more presser on me because my milk supply has been so low since returning to work). Next step was to put Joseph on a strong antibiotic to try and control the infection in is intestines. Third step was to increase his reflux medication. Fourth was to get an upper GI and small bowel follow through test at the hospital. That was scheduled for Monday of this week.

Monday's test was pure torture. Joseph had to drink this nasty contrast and he wanted absolutely nothing to do with it. I had to fight with him for about an hour and force him to drink it. The contrast was chalky and white and smelt like berries. I felt so mean forcing my child to drink something like I was. He was fighting hard too. We both ended up covered in it. I managed to get enough into him for the test, but then I had to help hold him down under the xray machine and turn him and push on his belly. It was horrible. He slept for pretty much the whole day after we got home.

His visiting nurse came by later that day and told me that the contrast could be very difficult to pass, even for a normal baby, so I had to monitor Joseph closely. He didn't poop at all Monday, but passed some of the contrast on Tuesday.

Wednesday was his 6 month check-up with his pediatrician. His growth is catching up nicely! He's 16lbs! He pooped out some more contrast at that visit and got 3 shots. His pediatrician was surprised that he still had contrast in him from Monday. He pooped a few more times that day and by evening, everything started to go downhill for him. He spiked a fever of 102.4 and the contrast was forming rock-hard pellets that he was really struggling to poop out. He was getting very uncomfortable. I called his pediatrician who advised Tylenol and a suppository. I braced myself for a long night.

This morning, the suppository came out while I was checking his temperature (it was down to 100.2). The suppository was coated in contrast and never melted so that didn't work. He was in a lot of pain this morning and his reflux was so bad he kept throwing up and choking. He has been fighting taking his medicine more and more each day this week and this morning, it was a battle! I came awfully close to staying home with him but my boss has already threatened to fire me for missing work because of him. I called the GI specialist and was advised to try Milk of Magnesia and see if that might help him pass the contrast. Oh great, another medication! Here's what his twice-daily regime currently looks like:



Evening medications went a little more smoothly, he resisted less, but still he gaged and coughed and pushed the syringes away. There's a part of me that wonders what long-term effects all the mediations he has had in his lifetime will render. He is already scheduled for a follow-up hearing test next month because of all the antibiotics he has taken (and continues to take). His pediatrician says he's not where he should be verbally, but I'm not too worried about his hearing. 

Bedtime =)

Beginning

To have a child is to have you heart walk around outside of your body. This feeling is one of the most incredible and scariest feelings I've ever experienced. I am able to love more than I have ever imagined and I feel pain more deeply than ever before.

The last six months have been an emotional roller coaster, to say the least! My husband and I have experienced extreme highs and ultimate lows with moments in between that span the emotional spectrum. The happiest moment of my life was also the worst; after laboring for 16 hours and giving birth to my son, I was left alone in the delivery room without the joy of holding my baby or experiencing my new family. My son was rushed from the room and my husband went with him. I had never felt so alone in my entire existence. After carrying my son for 35 weeks, as much a part of me as my own body, he was gone. The man who gave me the strength and the drive to remain strong the whole pregnancy, labor, and delivery, was gone. I cannot explain the horror of delivering a baby and being left alone with nothing but wounds to show for it. I heard my son cry before they took him away. That was the only beauty I found, and remembering his cry after he was gone gave me the strength I needed to get through the hours of surgery until I could finally see him.

Watching your child suffer is the most horrendous form of torture. The ultimate helplessness that you feel should be enough to kill you. Every instinct that I had as a mother had to be ignored and suppressed. I couldn't hold my baby, I couldn't comfort him, or kiss him, or even feed him. I only saw him through the plastic walls and ceiling of his incubator. His face was concealed behind the tubes and tape, and it was difficult to find my son behind all the medical equipment. It was overwhelming to say the least and my heart broke again and again for him. Each shattered piece broke into a million others and even those pieces found a way to break. The capacity to feel my son's pain in addition to my own was without limits. There were times when he would be in agony, trying to cry out and writhing in pain, and I would stand there with one hand on his head, one at his feet, trying to keep him still, and I would just cry with him.

I swear I held my breath the first 12 days of his life. Until his belly was closed, I didn't dare breathe, it was just too dangerous. His silo came undone twice and each time set us back again. The relief of his closure surgery was such a weight lifted from my shoulders. The 6.5 weeks he spent in the hospital were the longest and most difficult weeks I have ever faced.

With Joseph, life has truly been two steps forward, one step back. When he had his silo, it came undone twice. When he had his closure, the pressure was so great that he couldn't breath on his own until 3 weeks. When he was starting to get better and work on learning to eat, he became septic with a deadly infection. When he came home, we found out that a piece of plastic was left behind and he would need his 5th surgery. When he's growing and seeming to be fine, we learn that he is silently suffering from more complications.

Life with a special baby has so many highs and lows. Every challenge is a heartache and every joy is celebrated and felt so much more deeply. Each moment is truly valued and cherished. The bond that I share with my son is stronger than any earthly attachment and goes beyond simply that of a mother and child because of what we have struggled through and survived together! It is summed up perfectly by "the strongest steel goes through the hottest fire".