Things haven't been great lately. In my last post when I said that the vomitting had resolved, I was wrong. He continued to vomit every 2 or 3 days. His appetite also went way down. Immediately following his surgery he had a huge appetite and ate 36+ ounces of formula a day for about a week. I was excited because he gained back all of the weight he had lost, but since then he has only been eating around 15-20 ounces a day. He was gradually losing weight instead of gaining and about a week before our follow-up appointment he started being unable to pass stool or gas on his own. We were irrigating him 4x per day and that wasn't even enough.
On the 11th we went back up to Cincinnati for his follow-up with Dr. Levitt. One look at his abdominal x-ray and he was sure that Landon had enterocolitis. This was very upsetting because we hadn't had an episode since we started going to Cincinnati when he was 2 months old. So now we're doing a month of antibiotics and continuing the frequent irrigations. On top of all that, Landon was also really tight where they reattached his remaining large intestine to his rectum and so we have to dilate. The smallest rod is the size of a sharpie marker, the largest one is the size of a magic marker. We have to insert them for one minute twice per day. He hates it and screams in pain. It takes one person to hold him still and another person has to do it. It's horrible, but it's what we have to do so there aren't any other options.
It is really bothering me that he has enterocolitis again. Since his first episode where we nearly lost him we have always been able to keep it under control when he gets it, but he had gone so long without getting it I thought maybe we were done. And we had been irrigating him several times a day which should have prevented it, so now I'm worried that we no longer are able to keep it under control. We go back for another follow-up on February 8th. He will still be on antibiotics so we expect to find out that the infection is gone, but hopefully it doesn't return.
Either way, once again I feel like we have lost a lot of control. We did all we could and we weren't able to manage it. It is definitely time for a change. I ditched the Culturelle and started Landon on a much stronger probiotic, VSL 3. As far as the poor appetite and weight loss go, there wasn't a lot that we could do. What makes babies gain weight? Fat and increased calories.. which are also constipating. You can't get a child constipated that is already battling dangerous intestinal infections. The stool gives the bacteria even more places to grow and take over. So it's risky to attempt to change formulas, and it might not even help. All I could do is beat myself up over not being able to breastfeed. While we were still in Carbondale I had two lactation consultants helping me with no success, they saw me pump for 30 minutes with nothing to show. The last thing I was told before we left was that due to my blood loss during the c-section (they had to give me 2 units) that my body just might be working on other things. On the 6th day of Landon's life when he went into cardiac arrest in my arms for such a long duration I quit pumping. Who knows what would have happened if I would have kept at it. Once he recovered, he did well on formula with his colostomy and so it wasn't incredibly urgent situation. I knew that breast milk would help him and so I tried the Yaz-Doperidone protocol to re-lactate for 2 months with no success. Once again, I was disappointed, but not a life or death situation because he did well on formula with the colostomy.
Unfortunately, since the pull-thru, his tummy just can't handle it. What options did I have, spend hundreds of dollars on the meds to try the protocol again which would probably have no success, or spend $5 an ounce to buy milk from the milk bank, knowing I could only afford to feed him about 4 ounces a day- and that is with cutting back on some major expenses. After battling with my pride I finally reached out and asked for help on my Facebook page. The response was overwhelming.. it has brought me to tears on several occasions. Enough wonderful ladies have already donated enough to give Landon 16 ounces a day for the next month. Many have commited to pumping the best they can to try to keep giving me more. If I can get 4 people with 4 ounces a day to spare I can continue giving Landon at least half breastmilk. Production can be inconsistent and you never know what is going to happen in life, but I think I've found enough. God bless all of those wonderful people. I know this is going to make such a big different for Landon. This could very well be the key to helping Landon become strong enough to finally kick enterocolitis for good. At the very least, it will be easier to digest and will give his poor intestines a break. It is amazing what people are willing to do to help others. I've given many of our donors a brief description of what happened with Landon and what issues he faces, but they really have no idea how great it is what they are doing for him. For our whole family! It has been incredibly stressful watching him get sick over and over and wondering if there was something I could have done differently to make this stop happening. This could very well be it. Thank you so much if any of you are reading this. There are no words to express my gratitude.
I'm at work right now and my lunch is over, but I will update in a few days. This is day 4 with no vomit, so keep your fingers crossed! I hope things will finally get better. As always, please keep Landon in your prayers.
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