One of Those Days

Today was one of those days...you know the type. The day where nothing horrible happens, but you are just kind of ready for it to end, so you can go to bed, and start again tomorrow. Yeah, today was one of those...

One of those days that started too early.

One of those days where you spend too long looking for something you thought would be relatively easy. It took me an hour and 45 minutes to find a pharmacy that would custom make a medicine for Beckett...It's a drug that needs to be compounded and even some compounding pharmacies could not make it and did not have the materials needed.

One of those days where people think you have a fax machine or easy access to one, and I don't.

One of those days where people think you have the time and energy to deal with your insurance company covering this special-made medicine, and I don't.

One of those days where your ready for dinner and bath time by 4:00.

One of those days where you sweat the "small stuff."

Just one of those days...

And then it ended perfectly with a precious reminder from my little 3 year old. He was praying before bed, and after thanking God for many, many people, he said, "And please make Beckett's belly all better when we get up there. Oh, and please put lots of stairs in my big, big house up there with a big backyard with a hill...(a few more requests) OK, thanks. Amen." What a beautiful and much needed reminder of what is eternal. So amazing that God would use my 3 year old son to snap me out of what is worldly and temporary and remind me of what is true.

2 Corinthians 4:16-18

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.

What a precious ending to one of those days...

Every Three Hours...

We had our follow up appointment with the new GI doctor today. The good news is that I really like him and am thankful we get to see him. The bad news is that I wish we didn't have to see him. Anyways, that being said, we have unraveled more of the puzzle of B's health problems.

Beckett had his gastric emptying scan about week and a half ago. It is not easy to watch your baby strapped to a table with adhesive tape for 90 minutes. He was fairly upset for a lot of the test (who wouldn't be?) and I felt pretty helpless to do anything to make him happy. He just kept staring at me like, "pick me up! Don't you hear me screaming at you!" And I couldn't. I think it almost made it harder that he could see me because it is hard to see mommy when there is nothing she can do. You know what I mean? Can you imagine just standing over your baby's bed while he tries to fall asleep? Not easy...All in all, I think it went pretty well once I found a good Baby Einstein DVD to keep him distracted. Apparently, he is one of the few infants that doesn't fall asleep during this test. Big surprise...

Anyways, today we found out that he does have delayed gastric emptying/gastroparesis. This means that his stomach empties food into the small intestine at a slower rate. Unfortunately, his colon also moves at a slow rate because of the abnormality of the nerves. We do not know the exacts about his small intestine, but I think it can be assumed that it must be slow, too. Anyways, this DGE can be the blame for much of his spit up and vomit. If the food doesn't empty into the small intestine, it just comes back up. This can also result in his tummy filling up to quickly because it doesn't empty at a normal rate.

Well, because of this, I am back to feeding the baby every three hours around the clock...the 7 month old baby...No food, just formula every three hours. We are going to feed him smaller amounts every three hours and hope that he puts on some weight. He gained 0 ounces over the last few weeks. The NG tube came back up, as well, because continuous feeds on a pump put smaller amounts in he tummy at a time so it doesn't get so overwhelmed with a bulky feeding all at once. We are going to see how this feeding through the night goes, and hopefully, we can sidestep the tube.

All this being said, there is nothing easy about having a sick baby. I was at the grocery store pharmacy in the big, over populated suburb, and they knew me. I got there with a new prescription, and they asked me how Beckett was doing? (It is very kind and friendly, and one reason why I really like this pharmacy and all...I do recognize that.) But they know ME. They know MY 7 month old baby. Out of all the tons of people in this area, after only living here 2 months, they know us. And I think that is one of those moments where it hits me...my baby is sick. He is on 8 different medicines daily, in addition to his prescription formula and miscellaneous antibiotics for ear infections. We are doing everything we can for him, and limiting his meds as much as possible. But he actually needs this medicine just to poop. Hate to say it, but its true. All the medicine is just to make my child digest food. Yes, it is hard. Wondering what the effect of all the drugs has on him...or will have on him. Wondering which one makes him cranky and crampy? Wondering which one might keep him awake? But without it, his little body cannot process food. And digesting food is a must. I wonder how this will work out in the long term, but again just trying our best to take it a day at a time and give it all to God.

Please keep praying for us as we continue to get more pieces to the puzzle. Please pray that I get some energy for going back to the "newborn stage." Please pray that Beckett's body will handle the feeds and start figuring out what to do with it. Please also pray for sweet, energetic Brant. Thank you so much for listening.

Yummy Sweet Potatoes

About a month ago, we got the okay to try giving Beckett some basic baby foods like rice, oatmeal, and sweet potatoes. I don't know if you can tell from the pcitures, but he loved sitting in his high chair at the table with the family and enjoyed eating the food. Even big brother got in on the excitement of feeding Beckett his first foods. Beckett got so excited when he saw his food coming! I knew he was ready to sit at the table with us at mealtimes because he was seemed sad to be down in his bouncy seat while the rest of us ate. I just wasn't sure how ready his system would be for solids. I think we were extra thrilled to try his first foods because at one point we felt so unsure of if we would be able to feed him at the typical age.

Well, it turns out that his system is not quite ready to handle the bulk of baby food. He became VERY backed up, and the guess is that it is from the solids. The doctor told us to stop the foods until we can get a good plan going to keep food (only his formula, at this point) moving through his body. Then, we will revisit the solids. He only got to eat them for a week or two, but he did love them. So, for now, we are back to bottles only. I worry at times that he will never be able to tolerate solid foods, and that is a little overwhelming. It does seem hopeful though and we have no reason to think that, so I try to slow down and take it a day at a time. Because he loved his food so much, we took a break from putting him at the table in his high chair because I knew he would expect food. I have spent the last few days getting him used to the idea of sitting in the high chair with a sippy cup to play with, and he seems pretty happy with that. He does look like he would love a bite of our food (seriously...he tries to grab it), but just sitting and playing is working out for now.

After a bit of trouble with his BMs this week and an unexpected trip to the clinic at TCH, we are going to try a change in his laxatives tomorrow. Hopefully, it will help and he will feel better soon. I think it will just take a lot of adjusting until we figure out the right medicines to keep his little body moving. And hopefully, before too long, we can try food again and have success. Thanks for the prayers!

Happy Easter

Brant's Easter basket was so full that he could hardly carry it!...A little dramatic...

Brant was super excited about hunting for eggs and loved all the treats inside!

Precious Beckett

2 Corinthians 12:9

But He said, "My grace is sufficient for you, for my power is made perfect in weakness."

This Bible verse hangs on our fridge these days. I am so thankful for our Lord and Savior. I am so thankful that He is abundantly strong when I am so very weak. I am so thankful that during my times of hurt and weakness, His absolute power is perfect. I have seen his power and provision in so many ways over the last 7 months, and really throughout the last 28 years. He is all we need. I am so thankful that we have been saved by grace and that we can have hope because of Jesus. Thank you, Lord.

On the Right Track

Our appointment yesterday was such an answer to prayer. Our new GI seems wonderful for Beckett. He specializes in motility disorders and does a lot of study in the area. He took the time to listen to our concerns and questions and answered each one of them. I am very thankful that we get to see this specialized doctor. I feel like we are on the right track, and Beckett will soon be doing better with the right balance of meds and food monitored by Dr. C. We did get some "sort-of" answers. By "sort of," I mean that they can never be sure exactly what is to come (but of course, no one can be sure of that...) There are several "probably" type of answers, but they are optimistic. First, yes, there is something wrong with the nerves in his Enteric Nervous System. The ENS controls the gastrointestinal system. His has some abnormalities. BUT, it is possible that over time, it will develop. There is no way to know how long or if it will, but this is our prayer for him. In the meantime or for as long as needed, this can probably be managed with medicines and laxatives. "There are lots of tools in the shed," as the doctor said. So he gave us much hope that this is manageable. Several of the drugs do have some hard side effects which is something to consider with the duration that he is on each drug, so I am sure there will be some off time and scheduling involved. It is a little concerning, but we have been assured that the risk of side effects is very low while his need for the medicine is very high. So, he will be closely monitored until we figure out just the right combinations to help him "thrive." Of course, as with anything there are some risks and worst case scenarios, but we are very hopeful that with the help of Dr. C, Beckett will do very well. Dr. C ordered a gastric emptying scan to be done in order to see if Beckett has some level of gastroparesis or delayed gastric emptying. Basically, he will drink his formula, be swaddled and strapped to a table, and they will time how long it takes his stomach to empty. If his nerves and muscles in his stomach are not responding as they should, the emptying process will be delayed. We have a follow up in two weeks to discuss more of the plan. As long as he keeps gaining as he is (slowly but surely), there is not a feeding tube in our near future which is also a relief. We will be doing a colon cleanse over the next several days to try to clean out his colon of any blockages. He is currently very constipated, and when constipation is severe and chronic, it can cause severe infection and problems with the colon. So we need to get the little guy all cleaned out. Because of his inability to digest food well, he is still on an Elecare (his special formula) only diet, but it is concentrated to a higher calorie level. Solid baby foods are very hard on his system. We are not sure what the near future holds as far as what he can and can't eat. Hopefully, in a couple weeks, we will have even more answers, but I think we are feeling hopeful and optimistic about the situation and the direction we are headed. I will let you know how the gastric emptying scan goes. Hoping he will sleep through it! Thanks so much for your prayers and for checking on us. I am so thankful.

Tomorrow

(((I just want you to know that I do know how to make paragraphs! But for some reason, my blog is not making the paragraphs that I put in??? I make it paragraphed when I type it, but then it doesn't work when I post it. Sorry that it makes it hard to read. If anyone knows how I can fix this, I would love the advice!)))) Tomorrow is the appointment that we have been waiting for. When it was scheduled, it felt like it was so far away. But really, the three weeks have flown by and given us more time to be still and enjoy our family. When I got in my car after our last GI appointment, I must admit that I was rather shocked. I had to take a minute to just sit there and think. After we had received the biopsy results about 5 days earlier, we had assumed everything looked fine as far as his nerves were concerned. We thought the "negative for Hirschsprungs" result, meant that we were now back at square one. So I was very surprised when our doctor explained to me that yes, it was not Hirschsprungs as that was an ABSENCE of the ganglion nerves, but that no, it was not a normal result. The ganglion nerves are abnormal. This kept playing over and over in my head...nerves...abnormal. Something about my baby's anatomy...abnormal...abnormal. As this record was replaying in my head, I heard a familiar name on the radio. It was Angie Smith. I first started reading her blog a couple years ago, and it is wonderful. She is now in the process of having her second book published. I think God has really used her to reach people wherever they are, whatever the struggle might be. She is an encourager. That day on the radio, she said that it is okay to be hurt and it is okay to even be angry. It is about what we do with the hurt. God doesn't tell us we cannot be hurt, but what He does want is for us to bring it to HIM. He wants us to kneel before Him, take the pain to Him, lay it before Him. (This is not an exact quote, but my recollection of what she said and how it impacted me.) So I decided in this complete moment of confusion, to STOP stressing and thinking of every possible outcome, and to give all of my feelings of being overwhelmed and confused and scared to the One who is holding us in His hands. And what blessing that moment was to remember that I cannot do this alone, nor can I carry this weight of wondering around. But I can give it to our God who loves me, and keep moving forward, keep caring for our kids, keep praising our Lord. So over the past few weeks, questions have entered my mind. But we haven't really been obsessing over it. I am not sure if it is the exhaustion :) or answers to many prayers, but I have not spent the last three weeks overwhelmed with worry. We have actually ahd a lot of fun as a family exploring our new town. I know my peace comes from God. I think (and those of you who know me well would agree) it would have been very easy for my to become completely scared and stressed. (And I definitely do have my moments of stress, trust me. I am also guilty of a little googling that first night or two to try to learn more, and quickly decided that was not helpful, nor a very good use of my time.) But I have not been obsessed over the huge number of questions about Beckett...Will he ever be able to digest solid food? How does a kid not eat solid food? How does that change family time? Thanksgiving? Will he need a colostomy? enemas? feeding tubes? Will he be able to be potty trained at the average age without the right nerves? How does life work if your GI system doesn't? I mean it must work for him some, right? We have gotten this far, and he is well. Can his nerves develop over time? maybe they are just delayed? Maybe they will be normal by his next test. Miracles happen. All those questions ran through my brain about a million times on our way out of the doctor's office, and they still enter my mind. So you can see, we do have questions. We do have stress and hurt. But, Thanks to God, we do have peace. And we are blessed with these 2 wonderful boys, and we do not take what we do have forgranted. Beckett is doing so well. He looks a lot bigger and more developed. He looks like an older baby now. He learned how to go to bed in his crib at a reasonable bed time and stay asleep for a few hours at a time! He is rolling over enough and grabbing things, that we now have to make sure there are no tiny cars on the floor, before we lay him down....because he can get to them! It is amazing. He is having more good days and less bad days...He really is doing well, and to the outsider, he probably looks like a healthy, petite baby. No one would know what a little fighter he is just by looking at him and his huge smile. He is really doing well. Thanks for praying! I will let you know how it goes, and I really will post pics soon. I must have the only near picture-less blog. :)

Too Many Antibiotics

After a very fussy weekend, B is on yet another antibiotic. Since we moved about 5 or 6 weeks ago, Beckett has been on three antibiotics for ear infections. I realize there are way bigger things in life than antibiotics and ear infections, but it does somehow compound what we are dealing with. Let me explain. A week and a half ago, the little guy was diagnosed with a bacteria infection in his digestive system. When I asked how this happened, the nurse told me it was more than likely from being on antibiotics (2 seperate ones for his double ear infection in March). These antibiotics kill off the good bacteria in the system. His system ended up developing an infection. So he is on a compounded antibiotic for that bacterial infection. Now, today he is diagnosed with yet another ear infection. The question is: What kind of antibiotic do you give a baby who is being treated for a bacterial infection due to antibiotics...? See the problem. So after trying to contact his GI (who is taking care of the bacterial infection), the pediatrician was able to contact Infectious Diseases, who informed her that there is not great research pointing to a solution. So we move foward with yet another antibiotic for his ears while still on an antibiotic for his colon in hopes that his little system can handle it and the ear infection will be resolved. I think I see tubes in our future... It is easy to feel defeated after a day like today... Again, I know that ear infections and antibiotics are not so bad, but it just feels like one more thing to add to the pile. And I can't explain how weird it feels to have Infectious Disease contacted before an antibiotic can be prescribed to your baby. I heard a song this afternoon when I got back in my car that talked about how we don't have to be strong enough to do "this" (whatever it may be for each individual) on our own. What a good reminder it was to me at that time of feeling defeated. I often don't feel strong enough, and it is nice to remember that I don't have to be, nor can I be, on my own. I am so thankful that our God is so big and loves us so much and continues to give me and my family strength. Please pray that Beckett's ear infection and bacteria infection heal quickly. Thanks for checking on us. We really are thankful for the prayers.