Perspective

Zachary has been doing amazing this last week and half, since we switched his formula back to Similac Sensitive. I am so grateful that he is not vomiting anymore (well only every once in a while)! So maybe it's because he is doing better, but I have recently been able to really put our lives and his health into perspective and I just have to say, I have never felt more blessed!

Yes, vomiting sucks, and of course, I wish Zachary would eat by mouth (which I think will come along with time), but in reality, those are small things compared to what we could be dealing with. I have had several people share stories with me of different children and their health problems, and I am just amazed at their strength and ability to deal with it. For some reason, this last week, it just all became clear to me how lucky we are to have our sweet baby boy and that these things we are dealing with will go away. I know that the Lord is continuing to heal him, which just makes me even more grateful!! I believe that God is going to do amazing things through our sweet boy and I can't wait to see what they are! My heart is completely full right now, and I have the Lord to thank!

Healing

I'm not really sure how to start this blog entry. The subject of healing is something I have recently felt heavily put on my heart to blog about. However, I feel like I am lacking in faith and really should not be blogging about this topic, especially because I am feeling conflicted about it. I guess I'll just start.

I believe that God has healed and is continuing to heal Zachary! I believe He has healed him from whatever was causing the excessive vomiting, and He is continuing to heal his feeding issues and his heart. There are several events that led to me believing this and then feeling led to actually say that I believe God healed him, which I strongly do, but which is also scary for me to say to the world (I'll explain why later).

Here's what happened this last week. As you know, the GI doctor had us start Z on terrible formula that made him vomit all the time. What I didn't write about was how I was connected with three amazing women this last week, two of whom spoke to me about healing. One in particular shared some amazing stories about her son and daughter being healed and the power that God has to heal. She gave me some interesting things to think about, and she prayed for Zachary while we were on the phone, and told me she would continue to pray for him. Now, since I am a Christian, I know that God can and does heal people. There are numerous accounts of it in the Bible, and I have heard many miraculous stories about loved ones being healed. I have obviously been praying the God would heal Zachary, but not in a "I know you actually can do this" kind of way, if that makes any sense. I guess I was praying and hoping that He would heal him, but not actually thinking He would. I wasn't doing this consciously, and it wasn't until after that conversation on the phone that I realized it. Anyway, the next thing that happened is that some of our best friends from college were here visiting and we got to spend an afternoon/evening with them. These friends happened to just have had a healing service at the church the week before they came, so we were able to talk about it just a little bit, which just fueled my thoughts about healing. After I finished his last feeding while we were there, our friends mom (who is just so wonderful!!!) offered to rock Z for a while, and the whole time she was rocking she was praying over him. He was screaming terribly (separation anxiety), so we decided it was probably time to head home, and all of our friends and their family came in and prayed over Z and us. Zachary did not vomit after that last feeding, which is remarkable because usually even just a little fussiness can cause him to vomit.

Saturday came around and we were still giving the formula a try, until he puked up every meal he had that day and Tyler and had just had it and went back to the similac sensitive, which I think I wrote about in my last post. He has not been vomiting like he was (he did once yesterday, none today). The GI doctor called me on Monday night and wanted to know how she could help. I told her we didn't need her to do anything because we stopped the neocate and put him back on similac sensitive (skipping the Alimentum entirely) and he has basically stopped vomiting. To which she replied, "Well I can't explain that. It's actually really dangerous to put a baby who is vomiting that much on similac sensitive." Now, I have no idea why it could have been dangerous when he was already vomiting up every meal anyway, but whatever. That statement just made me think even more that God healed him. I mean, we had him on similac senstive before and he was vomiting, so I don't see why now he would all of a sudden stop vomiting when we put him back on it. I believe God fixed whatever problem he was having.

Now here's what is hard for me about healing and why it is hard for me to have faith in healing...God did not heal my grandpa. I am really struggling with this and I would say I am definitely a little angry about it. I mean why didn't He? He could have, and I know that, but He didn't. And I think about other people who are suffering from various illnesses or who have lost loved ones as well, and I wonder, why not heal them?

And I didn't want to blog about this because then I started thinking, "well what if God didn't heal him, and he starts vomiting again tomorrow?" Then people will think I am crazy, or worse, I fear that they will start to doubt God because I said something and then it ended up not being true. Oh my gosh, I could round and round with this, but ultimately, I decided to go with my gut, and after prayer, decided that I do believe God has healed Zachary and that I should share those thoughts. I don't know what it means if he starts vomiting again, but I'm not going to go there until/if he does. But I know this, Satan doesn't want to us to believe God can and does heal, and he certainly doesn't want us to share when God does those things in our lives, which is where I believe all the doubts come into play. And as far as why God didn't heal my grandpa, I will probably never know, and that is just something I am going to have to learn to accept. God is so much bigger than me, and has done so much for me, who am I to even ask Him why He does or doesn't do something? God sees the whole picture, while I only see a tiny fragment, so I am going to trust Him and believe in Him and the good He does in our lives. God loves me and my family, just as I know He loved my grandpa. So I am going to try and find peace in knowing that my grandpa is in a better place, where there is no suffering, and be thankful for the healing He is doing in my son's life.

If any of this is just out of line, or doesn't make sense, please feel free to email me or call me or something. I guess I'm just trying to hash out all of my feelings about the subject, and if anyone has insight into the subject, I am all ears (or eyes) =).

Monumental

We are about to embark on a monumental moment...Tonight, for the FIRST TIME EVER since Zachary's arrival, we are going to attempt to sleep through the night and eliminate the middle of the night feeding!!! This is HUGE! I mean, we have been SO exhausted and seriously felt like this may just be how it is the REST of our lives. But alas, today, finally, Z kept in enough of his food that we feel comfortable eliminating that feeding.

Here's a quick update on what this last week has been like for us...vomiting, vomiting, and more vomiting. Yes, we have been dealing with vomiting for the last 5 months or so, but not at every feeding, and certainly not in the middle of the night, as we had the luxury of dealing with almost every night this last week. I called the GI doctor twice because I felt pretty certain that this new formula-neocate-was causing all this vomiting, since it started when we started the formula. I mean, I'm no rocket scientist, or doctor, but really, it doesn't take either of those to put two and two together. Anyway, the doctor told us to stick with it for 3-4 weeks and that it was most likely not the formula because apparently neocate is the LEAST likely to make any baby vomit. Well doctor, Zachary is not just any baby. But I listened to her and we stuck with it for the remainder of the week, only to see no change in the amount of vomiting, other than it possibly getting worse. On Friday I called again and left a message, and while I was waiting for a call back, I took Zachary to the pediatrician for a weight check. Sure enough, he had lost weight. Granted it was only .5 oz, he still lost weight, which has NEVER happened. He has been a slow gainer at times, but always gained, even with the vomiting that was happening on a regular basis. SO, the fact that he lost .5oz made me really mad and gave me the information I needed to say we were done with neocate (the supposed magical formula). The nurse called me back on Friday afternoon (only after I called again and left a message informing them of his weight loss) and explained that I should STILL stay with it and that maybe we should try a continuous drip, meaning Z would be hooked up to that $&^# pump 24 hours a day. ARE YOU KIDDING ME??? NO!!! Tyler and I refuse to do that, and I don't believe it would have made any difference since it didn't matter if we ran his feed for 45 minutes or 90 minutes (which yes we did try), he still vomited.

After that conversation, we said we would still stick with the neocate, until the next day was just so HORRIBLE that we said no more. We decided to go back to the Similac Sensitive because we didn't think we had anything to lose. We mixed it at a lower calorie concentration then what we were doing before bc I had a feeling that the concentration could have been upsetting his stomach, and whatta ya know, he has only throw up twice today, and they were small amounts compared to what he was doing. HOOORAAAYY!! Although I am trying not to get too excited because there is no guarantee that this will keep, as we have had days like this before. But I am hopeful that it will work.

And now we are going to change GI doctors, and we are looking for a naturopath since we kind of feel like traditional doctors have not done a whole lot for Zachary. But this is how we came to tonight, having successfully gotten in the amount that he needs and about to venture into this thing called a full nights sleep that we've heard of from many different people, but never experienced once we became parents. We are a little worried about the calories, but will have a better idea of how this is going when we see the cardiologist Wednesday.

I have had a few different conversations with people about healing this last week, and had people praying specifically for healing. I believe God IS going to heal Zachary, just in His timing. If you are a believer, your prayers are appreciated. Happy sleeping everyone! (I guess this update wasn't as quick as I thought it was going to be. Oops.)

Emotional Roller Coaster

I'm going to be brutally honest here. Please don't judge.

I am a serious roller coaster these days! Z has still been vomiting about twice a day, which really sucks!! And Tyler and I are just tired and really want to get rid of the 2:30 am feeding, but we can't do that until Z is taking in enough calories in the day, which he is obviously not since he vomits at least 2 of his meals. And here's the thing with the vomiting...yes it sucks to have to watch him vomit, then clean him up (and usually one of us and anything around him), but what's really annoying is that we then have to re-feed him at least something. I know, I sound terrible that I am annoyed at having to re-feed him, but when it takes 45 minutes for his food to go in and we have to keep him entertained to try and avoid upset and vomiting, plus wait 30 minutes before changing his diaper since he usually poops while we are feeding him, the thought of having to sit through an additional round just does not sound like fun. Honestly, I have come to DREAD feeding him! I dread all things related to feeding him. (I wish I had that problem when it came to feeding myself...maybe then I'd be able to lose a few pounds.) But seriously I just hate this! So Tyler and I have been trying to figure out ways to change the amounts we feed him at each feeding to try and eliminate vomiting, which most likely means adding another feeding to the day...yippee. AHHHH...I mean what kind of mother am I, that I don't want to feed my child!?!

I've just been feeling so angry lately, at the whole situation! And all I want to do is cry about it! I have all kinds of horrible thoughts about being a mother and how I hate it, but then I think about all the people who can't have kids, who have had miscarriages, or have lost their precious babies after they were born and I become completely riddled with guilt and love for my little one all at the same time! In those moments, I just want to kick myself for ever wishing he wasn't around (and yes, I have wished that a time or two.) But I love him so much that it hurts at the same time. Talk about conflicting emotions!

Anyway, in the midst of my inner turmoil and anger, two things happened this week. First, at bible study on Tuesday, Beth Moore was talking about how each of us has an assignment from God. I realized instantly that my assignment right now is to take care of Zachary, which includes going to doctor appointments, feeding him, and cleaning up vomit. But it also includes just loving and spending time with him. This was further solidified when, after witnessing Z vomit, two friends prayed for him and Tyler and I, and in that prayer, one of them mentioned how this is my assignment and that God chose me for it. Now, I know God would not choose me for something that He knew I was going to fail at. So, while I may not have chosen this particular assignment (well not all of it), nevertheless, I have been chosen to be Zachary's mother and all that it entails, so I will try my best to do so with joy. The second thing that happened was a friend shared with me a few days/weeks ( I can't remember when) ago that the song Blessed Be Your Name was a song that she really held onto when she was going through a hard time and she suggested I look it up if I haven't heard it in a while, which I hadn't, but I didn't look it up at the time. Then I heard it on the radio the other day and I totally started crying. The lyrics that really got me were:

Blessed be Your name
On the road marked with suffering
Though there's pain in the offering
Blessed be Your name

Every blessing You pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say

Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name

Ultimately, I know that things really suck right now! But I also know that the Lord is with me through this, and I do still need to praise Him, even when I don't feel like it. He has brought me through A LOT of other stuff in my life, and I KNOW He will bring me through this too! So I will praise Him, even though I feel like the darkness has closed in on us! I just need a little help sometimes, or a lot of times. Yes, I'm still angry and sad, but I will hold onto that verse "I can do all things through Christ strengthens me" (I can't think of where that verse is right now) and I will praise the Lord who will bring us through this dark time.

underestimated

Alright, so I may have underestimated the ability of the GI doctor to know how to help Z. We have slowed his feeds down so they now take 45 minutes instead of 30, and although he did throw up tonight, it was the first time since Tuesday night. He went almost 2 whole days without throwing up, which we haven't had in a while. I think I was just so frustrated that there wasn't more of an explanation for his vomiting. Maybe his stomach emptying too slowly is the problem. She ordered a test to be done so we can see how quickly (or slowly) his stomach empties and then I think from there we may have more options. I don't know.
Anyway, she also gave us a website called www.gastrokids.org to visit and I checked it out the other night and learned a few things. It has good information about reflux vs. GERD (gastro esophageal reflux disease), which I had always assumed were basically the same thing. This is NOT the case. As I was reading, I started to realize that Zachary does not just have REALLY bad reflux, as everyone has told us. He actually has GERD. Here are the symptoms of pediatric GERD: poor feeding (check), vomiting (check), coughing (check), poor growth (check), irritability (check), and breathing problems (no, thank goodness). It said that spitting up crosses the line to GERD when a baby has refusal to feed, poor weight gain, breathing problems, and others. I just really believe that Z is dealing with GERD and not reflux.
Here's the thing about this new bit of knowledge, it doesn't change anything but the way I am thinking about things. The treatment is basically the same as what we are doing now, but now I have a name for what he is going through, other than reflux. It's a small thing, but honestly, I just couldn't accept reflux as the cause. I know SO many people whose babies had reflux and they didn't have to deal with ANY of these issues! I couldn't stand it!!! And people would ask what's wrong and I would say, "He just has really bad reflux" and they would just be shocked that it could lead to a feeding tube and failure to thrive, etc. etc.
I'm annoyed that NO ONE mentioned that he may have GERD! I'm sure to doctors it's all the same or something, but to a mom who wants to get to the bottom of what is happening with my baby, it is NOT the same!
So anyway, it doesn't really change anything, but somehow it's a little easier to swallow and have some peace that there is a reason for his vomiting and not wanting to eat. Now I just hope that what the GI doctor recommended continues to work and we can get this under control finally!
So I guess the GI doctor wasn't all bad :). I think I just have a bad attitude about doctors in general these days-other than Z's pediatricians, who I really like. But it turns out the doctors do know some stuff :), so I shouldn't just write them off from the get go.

Defeated

I am feeling really defeated today! I've been on the verge of tears all day for some reason, and now I just can't stop them. It seems like Z has been throwing up more again lately, for some unknown reason. I was hoping so much that when we went to the GI doctor today that she would give us some answers about why he's throwing up and why he's so fussy when we feed him. Instead she basically just told us to try and extend his feedings so that they take an hour all the way up to 90 minutes as opposed to the 30 minutes they've been taking. Let me just tell you that so far, this has NOT worked. He's thrown up both of his feedings since we got home from the doctor. I don't think it is going to work and the thought that instead of just dealing with a fussy baby for 30 minutes at each feeding, having to sit with him for up to 90 minutes of each feeding sounds horrible. He is clearly uncomfortable, which she said could be because the food isn't emptying out of his stomach fast enough, which could be related to the G tube. When I tried explaining that he was throwing up before he got the G tube, she didn't really say anything. She also recommended switching formula again to an even more expensive kind, which if our insurance doesn't cover it, we won't be doing since it costs $500/mo.
I just feel like we keep going to see specialist after specialist and none of them know what they're talking about or can give us an answer for why this is happening! I just want my baby to be healthy!!! He's also only gained a pound since August 30, which is alarming! I don't really understand what is going on! And he won't eat solids! I keep thinking, "Oh, surely this is the answer...this is going to work" only to get my hopes up! It makes me want to have no hope at all and then I don't have to be disappointed. But I know that is not what God wants for me. I know God answers prayers and He hears mine. And I also know that He is watching over Z and us. But tonight I just feel defeated.

An answer to prayer

I know this is going to sound weird, but I am really glad that I got laid off. Don't get me wrong, I loved my teaching job!! I worked for a great principal with great co-workers and I loved my students and their parents!! That said, I have always sort of felt like I wasn't made to work, because no matter how much I enjoyed teaching, or any other job, I enjoyed even more setting my own schedule and filling my day with social activities or nothing at all, but it was up to me what I did or didn't do each day and I loved that! I also always envisioned myself being a stay at home mom, going to mommy groups and playdates, or just leisurely enjoying the day with my baby. I would have a nice schedule set and my baby would just follow it so that I would still be in control of my day. I imagined some sort of maternal bliss where everything was just wonderful and happy and fun.

I don't know what land I was living in, but clearly it was not reality. Those of you who have been following my blog or have had conversations with us about Zachary know that maternal bliss is not exactly what I've had going on. In fact, there have been several times where I thought that I was desperate to go back to work and would take a job anywhere and Tyler would stay home with Z (I actually just told Tyler this the other day. Of course, I didn't mean it because I can't stand the thought of leaving Z everyday for 8 hours a day!) Instead of days at the park and zoo, we spent days in the doctors' offices and hospital. Or I spent days dealing with throw up and a baby who screamed anytime I tried to feed him. I tried to join a mom's group, but so many doctors appointments interfered and then I just got to the point where I was afraid to go anywhere for fear of Z screaming and throwing up all over the place.

All that said, I LOVE that I am staying home with him and hope it is something that I am able to continue. Before I got laid off, I prayed that God would give me a clear answer about what I was supposed to do this year. We already knew that he was having some health problems, but I felt like it was really irresponsible to give up a teaching job in this economy. SO, I literally prayed that God would make it extremely clear to me so that there could be no doubt because it just wasn't a decision I could make. Then I got laid off. I definitely think it was an answer to my prayer. When I got the call, I had an overwhelming sense of peace and certainty that He was going to provide for us (which He has, although not exactly how I thought He would). And yes, that certainty has wavered, especially when Tyler's job ended and sometimes now knowing he still hasn't found a new job. But I just have to remember that the Lord has a plan in all of this and He has yet to leave us hanging!! And I have to remember what I prayed and how it was answered!

In addition to the fact that I prayed something specific and got a specific answer, because I was laid off I have the opportunity to join my church's womens' bible study, which I have always wanted to join because I have heard such amazing things about it, and it is everything I thought it would be!! I truly feel like I am supposed to be in this study this year! AND, I have the opportunity to join Sprouts (like MOPS) at my church, which is also amazing!! AND Zachary is doing SO much better, and while we aren't out of the woods yet, things are starting to become a sort of normal for us! Some of my dreams about motherhood are starting to come true! We are having fun together, I am a part of the bible study, Sprouts, and a mom's group. I have been getting the opportunity to meet some amazing women who I just know are going to be an integral part of my faith journey and my journey into motherhood!

I have so much fun with my sweet baby boy and I just love him to pieces!! While our days are anything but leisurely and they definitely aren't set to what I want to do or don't want to do each day, I can't imagine spending my days doing anything else. By answering my prayer about work, God also answered prayer about other things as well. Things I didn't even know I needed at the time that first prayer was answered! Our God is so amazing and I am feeling incredibly blessed! I know that I may have to go back to work at some point, and if that's the case, I know that the Lord will prepare me for that, but for this season in our lives, I think I'm exactly where I need to be.