Upper GI work up

Well, the medicine we started yesterday for the esophagus spasms didn't work. Grant had a miserable night. So, this morning we went to Beaumont for an upper GI work up. They watched food travel its way through Grants body. They didn't find anything wrong, so tomorrow at 8am he will be scoped and get a biopsy or two taken from his insides. Please pray:
1. That Grant will recover quickly from this proceedure
2. That they can figure out what is wrong with Grant
3. That Jim and I stay healthy and hopeful

A possible fix

We just got back from the GI doctor. He thinks Grant has one of two things going on. Either Grant is having spasms of the esophogus or he has ulcers on his esophogus. The doctor is going to treat him for the spasms first and see if it helps. If it doesn't (the medicine should start working immediately), then the doctor will have to scope him, which means Grant will be in a lot of pain for 48 hours afterwards.

The danger in this medicine is that they don't like to give it to heart patients because it speeds up the heart rate. Please pray for Grant that his body takes to this medicine.

The bottle battle

Today was our worst day with the bottle yet. Grant is back to screaming when even his "favorite" bottle comes near him. I tried feeding him for over an hour and now Jim has put in another hour. At this point we would normally call it quits and try again later, but he's had so few calories today we feel like we should keep going so he stays hydrated. Please pray for us and that God would grant us another miracle.

11 week pictures

In Need of a Bottle Breakthrough

Please pray that Grant would take his bottle with ease. It's been 2 weeks now that his feeding tube has been out and although Grant's skills have improved, it is still a daily battle. I long to hold my child in my arms, have him look up and me and peacefully suck on his bottle. This seems like such a minor thing, but it would make such a difference in our daily lives, both physically and emotionally.

As I petition this request to God I must also thank him for the wonders He has already done in Grant. I looked up a blog yesterday of a sweet infant we met while in the hospital, who was supposed to go home this week, but she died the other day of an infection. My heart breaks for little Sophia's family. Please pray for them. And thank God with me for healing Grant in all the ways He has already. In the midst of the daily struggle to feed Grant pray that I continue to have a greatful heart.

Feeling sick

I have been fighting a sore throat for days now. I woke up today feeling a lot worse. Please pray that I would get well quickly.

Medication update

I spoke with Grant's cardiologist today to update him on Grant's current formula intake as it relates to the medication we temporarily stopped. Grant is now up to about 500ml in a 24 hour period, where as they want him to be over 700. (Can you believe just a week ago he was only eating something like 180 in a day?! He is totally improving!)

The doctor asked a bunch of questions, including how Grant's breathing is. Because we have the machine that monitors his beats per minute at home I could tell him exactly how Grant's breathing was. (To put this in perspective: When Grant came home from the hospital his heart beat about 170 times per minute. Now it is down to 140.) So, Grant's heart today is not having to work as hard as it used to. The doctor thinks that possibly the medication was making him dehydrated and thus causing his heart to work harder. So, the conclusion is that we do not have to put Grant back on the medication (unless he starts having breathing problems). The way that God works is so cool. We never would have known this if Grant took the bottle right away and did not start to get dehydrated, which then caused us to stop the meds which drain fluid from his body.

So, the good news is that we have two less medications to give Grant, his heart appears to be doing better and he is still in the 50th percentile in terms of weight, even though he lost a pound this past week.

Current prayer requests:
1. That Grant would improve his feeding skills
2. That Grant would take his bottle from someone besides mommy and daddy so we can have a little break from our marathon feeds. :)
3. That Grant's lungs would heal completely.

A visit from Grandma Niedzinski

Jim's flew in to help us for a few days. Perfect timing.

One happy baby

Grant is doing so much better. It is obvious that his throat is healing because he is smiling a ton these days.

His bottle skills are improving, but he still has a way to go. Each feeding takes 1-2 hours and we have to feed him every 3 hours, even in the middle of the night.

Please pray for endurance for us and that Grant would pick up the pace in his feeds. He's still not up to his recommended amount of formula, so he's not gaining weight like the doctors would like, but he's not losing weight anymore either. Because he's still not eating enough, he's not back on all his meds. The doctor didn't want him off longer than 48 hours and now it's been a week, so I have a call in to the cardiologist to ask him what we should do.

Grant continues to do well off oxygen during the day. :)

Thank you to all of you who continue to bring meals, grocery shop, and help with other various tasks. This really allows us to focus on feeding Grant. We couldn't do this without you.

Our First Bottle Victory

Grant drank his whole bottle for the first time yesterday!!! It was my coolest mommy moment ever. It took over an hour and he wasn't happy about it, but he did it. We used our special new Haberman bottle that allows us to control the flow and Grant seems to like that better.

Since then he has not had a full bottle. The OT thinks he kind of lost his suck because of all that has happened. She says he has developed a floppy tongue, that would rather play with the nipple and let the formula dribble down his face. So, we're still syringing about half the bottle. But, I am hopeful and can see the light at the end of the tunnel!

My throat is starting to hurt, so please pray that Jim and I stay healthy in the midst of this marathon.

Our tubeless baby

Here is our first picture of Grant without his feeding tube and oxygen canula! The little circles you see near his ears are where we attach the oxygen tubes at night. We are so thankful that God has brought Grant so far!

Still struggling to eat

The OT (occupational therapist) came yesterday afternoon and was clear about one thing- Grant must learn to drink from his bottle again. Using the syringe or some other method will not teach him the skills necessary to eat food in the long run. Plus, she said he has a good breath-suck-swallow. Basically, he has potential. But, when she tried to feed him by bottle, she saw the problem that we are having. She still wants us to try the bottle every time dispite his protests.

At this point she said we could finish the bottle any way necessary (syringe), but she said when we are ready for "tough love" (only the bottle) then we should get him hooked up to an IV and just do the bottle. This involves nursing care, possibly hospitals, and a lot of screaming. I'm still hoping he catches on and we don't have to go that route. She had one other possibility- a special, really expensive bottle. So, my sweet mom drove all over southeast Michigan last night to find this rare bottle. We're going to try it this morning.

Grant is still a little dehydrated. (He falls asleep by the end of the syringe game so we can't always get his full feeding in.) He has lost some weight and he's still off two of his meds that he needs to get back on ASAP. Please pray for endurance for Jim and me as we enter this new phase. And continue to pray that Grant would like his bottle once again.

He's still doing great off the oxygen during the day. (We have to keep some tape on his head to attach the oxygen canula at night.) I'll post some pictures later of our child without tubes for the first time!

The syringe game

I feel more hopeful today. Yesterday God sent friends and nurses to help me when I was most discouraged and felt like I couldn't do this any longer. But, we are getting the hang of feeding Grant with the syringe and he actually likes it. He kind of thinks it is a game. We shake a little toy over his head, then he smiles, then we squirt a drop into his mouth. It does take a long time, but at least he's getting his calories. (Still only 60 cc's, when he should get 85, but he's not dehydrated.) It is just a temporary solution because we can't start up 2 of his meds again until he can eat more. The occupational therapist should arrive soon and will have some other ideas for us.

GI update

We just got back from the GI doctor. The good news is that Grant's throat seems to be healing and he doesn't scream from pain when formula goes down. The reason we know this is because when we use a syringe to shoot the formula down he doesn't cry. He actually licks his lips sometimes.

The bad news is that Grant continues to scream when we try to put a bottle in his mouth. He still associates it with pain. Unfortunately, he has started to associate me with pain as well and gets unhappy when I come near him because he knows I am going to try to feed him. This is extremely hard for me emotionally. Thankfully, some friends are going to come today to help try to feed Grant.

The only way he's really eating much by now is with a syringe. Sometimes it works, other times he just spits it back out. Regardless, it is a long process to even get a little bit down. We have an occupational therapist coming tomorrow to try to work with Grant to get him to like the bottle again. I'm not sure how it works, but that's her job.

So, please pray:
1. That Grant starts to like the bottle
2. That Grant starts to like me again
3. That Grant does not get dehyrated as we feed him by syringe, little by little

6pm update

Grant is drinking a bit from his bottle, but not enough to sustain him. Jim came home from work early and has been working with Grant for the last hour, trying to get him to eat.

We talked to Grant's cardiologist today and he advised us to stop 2 of Grant's medications that are used to drain fluid from the body and would cause Grant to get dehydrated faster. However, this is a very short term solution because of the delicate fluid balance in Grant's body.

We will continue to try to feed Grant throughout the night and will see the GI doctor at 9am tomorrow morning.

Back from the doc

We just got back from the GI doctor. Grant is 1.9% dehydrated. They will allow him to be up to 5% dehydrated before they check him into the hospital. They are seeing us again tomorrow morning to make sure he's not dehydrated.

I'm feeling tired and weary. Grant is hungry and frustrated. Please pray for God's strength for me as I try to do what is best for his little body. Time to go feed...

Overnight update

It's 6:30am and in the last 24 hours, Grant has had 200 cc's by mouth or medicine dropper. (In a 24 hour period he would normally have had 680 cc's.) So, he's tired and cranky and can't figure out why we won't just feed him like he's used to. But, he's making progress. Please keep praying that his throat heals quickly and he enjoys the bottle more. We're headed to see the GI doctor in an hour.

5pm update

So far today Grant has had 55 cc's out of his needed 100. He has also thrown up about 20. He took some by bottle and some by using a medicine dropper, giving him one cc at a time. I just talked to his doctor and he said that he wants to try to keep Grant out of the hospital because of all the viruses going around. So, as long as he's eating something we're going to try to feed him little bits throughout the night to keep him hydrated. The doctor is convinced that if we can just keep him hydrated while his throat heals then he'll be taking his bottle within a few days. We're seeing the doctor at 8am tomorrow morning so he can make sure for himself that Grant is hydrated enough.

Line in the Sand

Funny that Shannon wrote this morning about yanking tape off quickly when it is in our best interest...because I think that is happening in a way with Grant and his feeding problems.

We have a trilemma: Grant must eat for his heart and lungs to heal; and he needs to eat more than he has the energy to consume because he is recovering from quite a trauma. Furthermore, Grant has digestive issues so he is in pain when he eats. Because of these reasons, he refuses the bottle almost altogether, having learned quickly that a bottle = intense pain (all of this is common for babies who've been through what he has). So, to make sure he gets the nutrients he needs to heal and grow, docs put a feeding tube down his nose. However, the feeding tube only irritates his stomach and acid reflux problems further, thereby increasing his pain and the frequency of his pukes.

Grant threw up blood this morning. Shan got in to see the gut doctor and he drew a line in the sand with Grant--Grant must learn to feed from the bottle now vs. later as the tube is causing too much irritation. Shannon has to try to feed Grant by the bottle every 30 minutes today until Grant drinks a total of 100 cc's or until 5:00 p.m., whichever comes first. If 5 pm rolls around and Grant still hasn't gotten with the program, to the hospital we go to get him hydrated (remember he is on all sorts of diuretics) and to pick the bottle-feeding project up again while there. The hardest part is that Grant screams and thrashes and goes nuts when we try to feed him from the bottle.

Please pray that Grant's stomach, throat and psyche heal completely so that he can eat without the tube.

Please also pray that Shannon can have peace and rest in the midst of the tiring journey.

A lesson I learned from tape

Every couple days we have to change the tape on Grant's face that holds his feeding tube and oxygen canula in place. We've been trying all sorts of tape lately to try to keep his face from getting all torn up. The other day a new kind of tape came in the mail that is supposed to be much gentler on the face, yet should really stick. (Most of the gentle tapes come off after a few hours.) But, in order to put this new stuff on, I had to take the old, really sticky stuff off.

So, I was giving Grant a bath and he was all happy and smiling and I decided that this would be a good time to change his tape, like maybe he wouldn't notice or something. (Wrong!) So, instead of being gentle and taking my time, I just went for it and ripped it off really fast. Well, then the crying began. Not just a little cry, but the kind of cry where tears are flowing but no noise is coming out because he's crying so hard. (All you moms know exactly the cry I'm talking about!) I picked him up and was hugging him and trying to calm him in all the ways I knew how, but he kept crying. I was trying to explain to him that the old tape is bad and the new one that came in the mail will make him feel better in the long run. But, he just kicked and sceamed and looked at me like he hated me.

And then I realized that so often I do this to God. I allow myself to focus on him removing the "bad tape" in my life, instead of trusting that He has something better for me.

The new tape on Grant's face is working well. I'm thankful he held still long enough to let me put it on...