The Road to Recovery

First of all, I want to thank you all for your encouragement, prayers and support since my last posting. It is much appreciated and it definitely helps to know we are not alone in our struggle. So much has happened since then that I’m not quite sure where to start!

First of all, I wasn’t pleased with the answers/recommendations we were getting from our pediatrician here…so I called our doctor back home in Oregon. He was my doctor when I was little and also saw Lauren up until the time we moved. I explained to him everything that has taken place, Nolan’s symptoms and the next steps we were told to take. He said based on what the symptoms were, it truly sounded like a bad case of reflux. He said that he would never recommend Reglan for an infant and that he would have put him on Prevacid, not Prilosec. He suggested we try the Prevacid first and then do the Upper GI if we still saw no improvement. He also told us that he has never seen an infant with reflux not get better when taking the Prevacid. I felt so much better after speaking with him and felt “armed and ready” for Nolan’s doctor’s appt that next day (Wednesday).

We took him in Wednesday morning and they tested him for MSPI. It was negative – praise the Lord! They also weighed him and despite how poorly he had been eating, he had gained weight. He was 16 lbs. 4 oz! We spoke with the doctor and told her we would like to try putting him on Prevacid. She was reluctant and really was pushing for us to do the Upper GI, but she agreed to write the prescription for Nolan and wait to see how he responded. She also brought up the Reglan idea again and I told her that was not even an option for us.

Thursday morning, I had an appointment with a lactation nurse for her to observe a feeding. He ate well for the first few minutes and then began his fits of screaming. She could tell just by the way he was swallowing that it was reflux and it was causing too much pain for him to keep eating. But, the good news was that he still ended up getting 6 ounces of milk, despite all his struggling. It was such peace of mind for me to know that he is getting exactly what he needs. Even though it is painful for him, he doesn’t give up – this kid is a fighter!!

Simultaneously, I had done a ridiculous amount of research on the internet, looking up alternative methods of treatment for reflux babies. I found a lot of good information and one of the things I discovered seemed to make sense. Apparently, through pregnancy and the childbirth process, babies can get “out of alignment”, especially when the doctors are pulling them out. Ryan can attest to how un-gentle they were when Nolan was born – they grabbed him by the neck and just pulled. In many newborns, sublaxation can occur, which is where one or more vertebras are not in line and can cause pressure on different nerves of the spine. Babies with sublaxation often present symptoms like reflux, chronic ear infections, breathing problems, etc. Thankfully, there are specialized pediatric chiropractors who can gently, using pressure points (no twisting or cracking), readjust the baby’s spine. Just one visit can eliminate most of their symptoms. So, I found a pediatric chiropractor in our area, who came highly recommended, and set up an appointment for Nolan on Monday.

We will be holding off on starting him on the Prevacid until we see the chiropractor – if we do both at the same time and he gets better, we won’t know what it was that helped him. So, we are again asking for your prayers as we explore these options. I will post another blog next week to update you on his progress.

The Mystery Continues

Sunday, May 25th will go down in history as one of the worst days since Nolan was born. He screamed during every feeding, would only eat 2-3 ounces at a time and would only take hour long naps. Just the day before, he was smiling and cooing…and somehow overnight, he had become a different baby. Unfortunately, he has been on the Maalox for a week, so we are done with that medication. We will continue on the double dose of Prilosec until Friday, but if it was going to work, we should have seen some improvement by now.

So, that means it is time to schedule the dreaded Upper GI test. I knew it was going to be hard – I mean, anytime you have to have a test done on your newborn, it can’t be good, right? But, I had no idea what it involved until I went onto the hospital website and read the instructions for the procedure. He can’t have anything to eat 12 hours prior to the test. Then, they give him a bottle with Barium solution in it and do the x-ray. It said in the instructions: “it’s important that your infant lie still so the pictures are accurate.” I just laughed. What 3-month-old is going to lie still after not being fed for 12 hours?!? Thankfully, we can both be in the room with him and I will be able to nurse him as soon as it’s over. The test takes about 30 minutes total.

The bad part is that regardless of what they find out about his reflux from this test, there is really nowhere to go from here in terms of medication. We can try Prevacid (which is the same type of drug as Prilosec) – they say that some people respond better to one versus another. But, the drug our pediatrician suggested we try (Reglan) has a class action law suit against it and technically is not FDA approved for infants under the age of 2. I’ve read some very scary accounts online about children having long-term side effects from being on this drug. No thanks!

The other option I want to pursue is to see if Nolan has MSPI (stands for milk/soy protein intolerance). I have already cut dairy from my diet, but am still consuming soy protein. Some of the symptoms seem to fit and it is simple enough for them to diagnose (they just do a test for hidden traces of blood in his stool…which, he did have as a newborn, but they chalked it up to being from cracked nipples). The hard part about MSPI is that if he does have it and I want to continue to breastfeed him, it will require me to go on a very strict diet and read labels closely to make sure I avoid all traces of milk and soy proteins. But, all the research I did supports that breast milk is the best thing for him.

At this point, I will do almost anything to get my little man to be comfortable and happy. As frustrating as feeding times have become for us, I have only ever felt sorry for him and helpless that I can’t fix what is causing him pain. Some days I do better than others and am able to take it all in stride. But, some days there are a lot of tears in our house – and not just Nolan’s. I honestly don’t think any baby has been prayed over more than him. As always, utter reliance on the Lord is the key. It would be impossible to endure any of this on my own strength, but He gives me exactly what I need for each day. The hymn I keep singing in my head is:

“I need Thee every hour,
Most gracious Lord;
No tender voice like Thine
Can peace afford.

I need Thee, O I need Thee;
Every hour I need Thee!
O bless me now, my Savior,
I come to Thee.”

Please pray for us this week - Nolan will be seen one more time to be tested for MSPI, we will schedule the Upper GI test and I will also meet with a lactation nurse to ensure I'm doing everything I can to keep up my milk supply while he is on this "feeding strike". We are desperate for answers and are hoping that we will get some very soon.







Nolan during happier times

Reflux Update

It's been a while since I've posted and people have been asking me, "What's going on with Nolan?" And since he just had his 2-month checkup, I figured this was a good time to update. The good news first: he is a growing boy! He weighed in at 15 lbs. 7 oz. and 25" long. He is basically off the charts for height and weight, which is great.

And now for the not-so-good news: his reflux has not gotten any better being on the Prilosec. So, the doctor told us to try giving him the Prilosec twice a day for the next 2 weeks and to give him Maalox 3 times a day for the next week. We are on day 3 of this plan and still have seen no improvement in him, which is not very encouraging. If he is not better at the end of the 2 week period, then we will take him in for an Upper GI barium swallow test. This will give them a close look at what is going on with him when he eats and will show if there is damage and to what extent. Obviously, I am not looking forward to that test, but I am willing to do anything at this point to help him.

Despite all his struggles lately, he has managed to master sleeping through the night - PTL! 8 hours or more a night has made us feel like brand new people...it is wonderful! And when he's not eating, he is quite the happy baby. Please continue to pray for us and for this little guy - that the doctor's can determine what it is he needs to get the reflux under control and that I am able to continue nursing him through this time.

Here are some recent pictures:

For my Mother...

There's a picture of you holding me,
Always warms my heart to see.
Loving mother, little girl,
The day I came into the world.

There was much I had to learn,
Kept on getting my fingers burned.
Testing your patience day after day,
Drove you to your knees to pray.

So many sacrafices that you made,
Grace was given; understanding displayed.
Couldn't see then how I'd been blessed,
But time proved your love was limitless.

Nothing outweighs what you've done for me.
In my darkest of hours, you still believed.
Your faith and assurance carried me through,
So grateful and proud to have a mother like you.

A Plea for Prayer

I had posted a blog a while back stating that Nolan was diagnosed with acid reflux and put on medication for it. The medication was working for a while, but because he is growing so rapidly, his increased weight caused him to need something more. They doubled the dose of the medication he was on and after a week of trying that, he was still miserable. After having a lactation nurse observe him during a feeding, she assured me it was a bad case of reflux. We went back to the pediatrician and she prescribed Prilosec. Yes, Prilosec. They are able to compound it and flavor it (bubble gum, yummy) for babies and the pharmacist informed me that they fill around 30 prescriptions of this drug a week for infants. Apparently, what was diagnosed as colic when we were babies and years before that, they now believe was acid reflux all along. So, it is more common than you would think. But, unfortunately, our little man has a fairly bad case of it.

Unlike many babies with reflux, he doesn’t spit up a lot. If that was the only issue, I wouldn’t be going to the lengths that I am. The way it affects him is during his feedings. He is hungry and wants to eat, but as soon as his stomach begins filling up, the acid reflux kicks in and he is screaming in pain. He wants to keep eating because he is still hungry, but the pain keeps him from getting a full meal. Needless to say, it has been awful - knowing that I am the one providing him with the food he needs…and at the same time, causing him this excruciating pain.

The worst part about starting him on the Prilosec (which we began yesterday) is that it will take a week for it to start working. So, his old medicine has now worn off and the new one hasn’t begun to take effect. This makes for one miserable little baby. And one emotional mom! I am convinced that there is nothing worse than watching your child suffer and being able to do nothing to make it better. Hence, the reason for this blog.

Please join us in praying for Nolan – that this medication will be the thing that works for him, that he won’t lose any weight during this week of transition, and that we can soon start seeing a happier and more comfortable baby boy. Also, keep us in your prayers – that we have the energy to make it through this week, that we are able to find ways to get him to eat and that I don’t lose hope that breastfeeding will be an enjoyable experience someday soon. We are so grateful that we don’t have to face this challenge alone and that the Lord gives us everything we need – His mercies are new every morning…and that is a beautiful thing.