Getting stronger!

12 week picture

God is Good

Grant does not seem to be in any pain while feeding. God is so awesome. He really did heal Grant!

Canceled scope

Yesterday a friend called up and specifically told me to put my hand on Grant and declare him healed. He was asleep in his swing, so I got off the phone and went over and did that. When he woke up I got out a bottle, ready for a food fight like we've been having all week. But, for the first time in so long Grant took the bottle in my arms (he usually only lets us feed him in his crib), peacefully and happily. It was awesome. For his next 5 feeds Grant drank his bottle with relative ease.

So, early this morning I paged the GI doctor and told him what happened. He made the decision to cancel the scope. It was so exciting. Grant was doing great. Then, as the day progressed Grant started to refuse the bottle again and was eating less than half of what he did yesterday.

We are very confused by this and are not sure what God is up to. But, we feel peaceful that Grant did not have the scope today.

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...

A day in the life of Grant

Tummy troubles

Grant's feeding times seem to be getting worse. He still doesn't like the bottle and screams while we are feeding him through the tube. It takes about 45 minutes to give him his entire feeding through the tube and he is miserable the whole time. He then throws up about half the time. But, soon after the feeding ends he is a very happy baby. This is very frustrating because feeding times have become very stressful for Jim and me. Our next GI doctor appointment is not until Wednesday, but I am going to call on Monday morning and beg to be seen. I think there must be a solution that will make feeding a more pleasant experience for all of us. Please pray that we can get in to the doctor quickly and that God gives him wisdom as to what to try next.

Oxygen trial

Grant has been off oxygen for a few hours now and is doing well! Thanks for praying.

Our 8 week check up

Today we met with Grant's cardiologist at U of M. One positive piece of news was that they want to try Grant off oxygen during the day and keep him hooked up to it at night! I am so excited for Grant to have less tape on his face, and so excited for the freedom to roam the house without tubes. I will have something to monitor Grant's oxygen saturation levels during the day while he is off so that I know if he is doing okay. If he drops below a certain number, I just hook him back up. We can't start this until next week when we get the tool to measure his saturation levels.

The not so good news is that Grant's lungs still look bad. Worse than they should at this point. They are concerned that he might have pulmonary lymphangiectasia. Here is a brief explaination (from google):

Pulmonary Lymphangiectasia is a condition in which there are widespread dilation of the lymphatic channels in the
lungs. This can be a part of generalized lymphangiectasia or a primary pulmonary developmental abnormality. Where
there is no evidence of cardiac disease this condition seems to present either at birth or later in infancy.
The cause of Pulmonary Lymphangiectasia is unknown. The signs of PL can sometimes be seen prenatally, but most
commonly postnatal. Many infants are stillborn. The newborn infants show respiratory distress. The typical presenting symptoms include rapid breathing, and recurrent cough or wheeze. An examination of the patient usually reveals the presence of fine crackles throughout the lungs.Diagnosis of pulmonary lymphangiectasia can be difficult. Although chest x-rays are usually abnormal, the x-rays can reflect fluid in the chest cavity or lung tissue. Chest CT scans can show patchy areas of fluid and over inflation in
PL patients. Most patients who survive through early infancy continue to have respiratory problems (wheeze, recurrent cough, and
pneumonia) in the first several years of life. These patients also seem to have other medical problems
(gastrointestinal reflux) common to patients with chronic lung disease.

Evidence has shown that symptoms improved in most patients after infancy and were notably better by the age of 6
years old. (Some stay on oxygen until they are 5 years of age.) The only treatment is medical support until patient is no longer in need of support. The evidence suggest that primary pulmonary lymphangiectasia does not have as dismal a prognosis as in most cases and clinical findings improve after the first year of life.

So, please pray:
1. That Grant's lungs heal completely and that he doesn't have this rare condition
2. That Grant's body adjusts well to tapering off oxygen
3. That Grant's acid reflux would go away. (still throwing up several times daily)

We go back to U of M in 6 weeks for a slew of tests. They'll decide then if we need to see a lung specialist based on Grant's healing at that point.

A big day tomorrow

Tomorrow we head to U of M for our 8 week post surgery check up. Our biggest miracle prayer request is that Grant's lungs are healthy enough to get off the oxygen. We're also hoping that they'll reduce the number of meds. (Two of his meds are usually only needed for 6 weeks after surgery.)

Grant has thrown up two feedings already today. I have now decided to cover our entire family room with bedsheets. More laundry, but less mess. :) The GI doctor yesterday introduced me to a couple that had an 18 week old who had heart surgery. She was once experiencing the same problems as Grant- hating the bottle, throwing everything up, inflamed insides etc. But, when I walked in to meet them their little girl was holding her own bottle and drinking happily from it. The doctor looked at me and said, "See, he'll be okay." I'm looking forward to that day.

A new formula

Well, we went to the GI doctor again yesterday because Grant is still uncomfortable while eating and throws up about every other feed. Our most recent projectile vomit actually made it over the couch and hit the wall behind it. (A good couple of feet.) The doctor is switching Grant's formula again, to the most basic formula that is pre-digested so Grant's tummy doesn't have to do any work. We really hope that this works and that the insurance will cover it. (It costs about $20,000/year!) The doctor also doubled Grant's dose of prilosec, hoping to get rid of the acid reflux altogether. Right now he thinks that Grant's insides are really inflamed from the tube, the acid and from continuing to throw up. Please pray that this new combination will equal a happy, painfree Grant.

sound asleep

A 8 week old story

We had a great weekend. Grant is still having some GI struggles, and some "I hate the bottle" issues, but at least it doesn't have to do with his heart. We'll find out more about how his lungs are healing at our appointment at U of M on Thursday. They said they probably won't take him off oxygen until he can stay out of the hospital for a while and his pulmonary hypertenstion is better. I'm still praying for a miracle that they'll look at his eco on Thursday and proclaim his lungs healed! I'm having fun watching him giggle as he bats at the toys we hang above him on his activity mat. In some ways I never thought a day like this would come. I'm so thankful.

When my sister-in-law, Jane, was over to help the other day I asked her about his first day of life. She lives in Canton and was the first one on the scene when Grant was life-flighted over to U of M. ( I was still at Beaumont recovering.) Up until this point I didn't have the emotional capacity to ask her what it was like when she saw Grant for the first time. She told me that when she first walked back to see him he had just flatlined and they were reviving him. They hurried her out of the room and she sat in the waiting room for two hours, wondering what had happened to Grant.

Finally the nurse came back and told her he was alive, but they had to do surgery right away. Jane looked at the nurse and said, "But, he's going to be okay, right?" The nurse looked back at her and said, "he's a very sick baby." Meanwhile Jim and I were on our way over to U of M. But, Jane and the other nurses were afraid that we wouldn't make it there in time to see Grant before he died. So, they bought a poleriod camera and were all taking pictures of Grant. Jim and I arrived a few minutes later to give him a kiss before he went into surgery.

I tell this story only so that you can grasp, as I am beginning to, what a miracle Grant's life is. Maybe you have all grasped that already, and I've been too wrapped up in his current problems to see all the awesome things God has already done. Thank you, God, for saving our baby Grant.

Enjoying the Moment

I think yesterday was the best day I've had since Grant was born. He didn't throw up, he didn't scream while being fed (he even took half a bottle by mouth!), he smiled and looked so peaceful when I held him. Aside from the tubes etc. I think this must be what it is like to be a mom of a "normal" baby. As I got in to bed last night it was the first time that I didn't feel scared that Grant was going to die. Every day since he's been born we've had some sort of problem. In many ways it has really kept me from enjoying being a mom because I've been in problem solving mode instead of "enjoy the moment" mode.

In church last week I felt like God was telling me to stop trying so hard and to enjoy Grant. I argued back that this is close to impossible to do with a baby that is always throwing up, screaming in pain or struggling to breathe. But, now I know why God wanted me to do this. It is so much better. I know there will probably be more roadblocks ahead, but for now I am really thankful to be home and enjoying Grant.

Happy to be home

Home Again

We got home from U of M last night. Grant was able to go 24 hours without throwing up, so they had us leave, even though he was still not without pain during feeding. Then, we got home and he threw up his first feeding with us! But, the good news is, he has had 4 feedings since then and kept them down. He is now on Prilosec for his acid reflux and Progestimil for his formula. Hopefully between these two things feeding will soon become a more pleasant experience for Grant. We have an occupational therapist that will come to our house to try to retrain Grant to feed from a bottle or mini cup.

Grant seems to be over his virus. (Unfortunately, he passed it on to my sister-in-law, Jill, who was here over the weekend to help.) His red blood cell count after the transfusion came back higher than it was, but still not as high as a "normal" baby. So, we are continuing to give him iron and praying that he begins to make his own within the next couple of weeks. This should really help with the breathing.

We saw our cardiologist while at the hospital and he said he wants to keep Grant on oxygen longer than originally thought. (We were hoping to get off it at our appointment next week.) But, even though we're still on oxygen, I came home from the hospital with a much happier baby whose heart is not having to work so hard.

Prayer Requests:
1. That Grant stays healthy. No more viruses!
2. That Grant begins to make his own iron.
3. That Grant's lungs continue to improve.
4. That Grant learns to feed orally again.

Thanks for praying, supporting us and feeding us! :)

Still at U of M

We're still at U of M. Grant's color looks better since his transfusion, but we don't have many answers beyond that. He's still not eating from the bottle and is very much in pain most of his waking hours. We've found a lot of things that don't work, but we're still doing trial and error to find out what it will take to make him feel better.

Transfusion complete

Grant just finished getting his blood transfusion. They will continue to closely monitor him to make sure he doesn't spike a fever and that his body reacts well to the blood. It is exciting to think that he won't be anemic anymore and that his heart can stop working so hard.

Assuming all goes well with the transfusion, our next concern is that he still won't take the bottle and is clearly miserable when taking food through his nose tube. The occupational therapist we saw today said that Grant now associates the bottle with extreme pain. Please pray that Grant sees food as enjoyable. We also have the problem that when he gets food through the tube he continues to throw it up. Hence, us ending up in the ER twice for dehydration. Our favorite nurse here at the hospital told us not to leave until Grant keeps his food down for 24 hours. However, we are having trouble actualy getting a GI doctor to our room. Please pray that we can get Grant's reflux under control so he can be out of his misery and we can go home.

We Love Blood Donors

We're back at U of M. Grant developed a fever yesterday, so we went to Beaumont and they transported us to Ann Arbor.

So, the bad news is that Grant has been having difficulties.
The good news is that they have identified the causes:
1. Anemia (low on red blood cells)
2. Virus (his 2nd one in two weeks)

It is also good news that the anemia and virus are not heart-related issues.
But the bad news is that they do negatively affect his heart.

But the good news is that they think they have a solution!

Well, there is no solution to the virus but to let it run it course and to make sure Grant stays hydrated via an IV (he hasn't been able to handle his feedings). So this is fine and he already appears much better today than yesterday.

The anemia is normal for a newborn his age, but Grant doesn't have the reserves to handle it. Red blood cells deliver oxygen to the body...so when the body is anemic it compensates by pumping the heart harder. Ah, therein lies the rub--Grant's heart already works too hard, so the whole thing is too much for him to handle well. So they are doing a blood transfusion this morning. This will flush his body with the red blood cells he needs and will literally give him breathing room to heal. They believe his body will then be able to begin producing enough of his own red blood cells over the next few weeks.

They are optimistic that the transfusion will help him fight off the virus and dramatically improve his strength. So if this works as the believe and hope, Grant could very well begin to steadily improve without any more of these setbacks we've been experiencing.

Please pray that:
1. The blood he receives is not infected or contaminated in any way (estimated 1 in 30,000 have some nasty gunk in it) and that Grant's body accepts it.
2. His body quickly nukes the virus.
3. He begins to eat from his bottle easily and consistently.
4. That his heart and lungs fully heal.

The final bit of good news is that Shannon is doing great--peaceful, trusting, calm and we both slept very well last night. Thanks for everything, everybody!

A trip to the ER

You'll have to excuse this blog if it doesn't make sense. We were in the ER all night and I have not yet slept. Yesterday Grant threw up 5 of his feedings and slept most of the day. (Those of you who have met him know that he is usually very alert during the day.) He was also coughing a lot and his eyes looked glassy. Needless to say, he wasn't behaving normally. We were worried about possible dehydration and thought the cough might indicate an infection. So, after consulting with our pediatrician and a cardiologist at U of M, we took him to Beaumont, just to be safe. The conclusion was that Grant was a bit dehydrated, so they gave him fluid through an iv. He then kept his most of his next feeding down, so they let us go home.

While Grant was getting checked out I also ended up in the ER. I have been getting hives/rash on my hands for the last couple of days and while at the hospital it got really bad and the nurse suggested I get it checked out, as long as we were just sitting around waiting for Grant's blood work to come back. The conclusion: I am allergic to Germ-X hand sanitizer! I use it a hundred times a day to make sure I am not spreading anything to Grant and had been using it like crazy while we were sitting in the ER. So, I got a steroid and some topical cream and I should be better soon. I guess I'll have to go back to the old fashioned hand washing.

My sweet sister-in-law, Jill, is on her way down from Midland to watch Grant for the day so I can get some sleep. Jim is giving the talk at our church this weekend, so he's pretty tied up preparing his message.

It continues to be an adventure at the Niedzinski household. Thanks for continuing to pray for us, bring us meals etc. We couldn't do it without you.

Experiment gone bad...for now

Shortly after my last blog posting I decided to just go for it and yank the feeding tube. To make a long story short, the I just put the tube back in. Grant tried to eat from his bottle a little bit (less than an ounce) but each time he did he would breathe really hard and sometimes throw up. We decided that it is most important for him to be able to get enough air and not get so tired from sucking. (Not that he was really sucking his bottle that much anyway.) He's asleep right now from crying so hard while we put the tube in and retaped his face. I think we are going to wait to see the doctor and find out if his iron stats have improved before we yank the tube again. That way his heart should be pumping the right amount of oxygen and it won't be a heart issue anymore, just a hunger strike. :)

So many variables

We're home from the hospital and Grant started on his iron supplements today. Please pray that the iron will have the right impact and that his breathing will slow down as a result. Unfortunately, he is still really unhappy (thrashing, grunting etc.) and has thrown up both his feedings today. He won't take the bottle again. We are not sure if we should take out his feeding tube because it could be making his acid reflux worse, or to keep it in because that is the only way he is getting nutrients at this point. It appears he can't both suck the bottle and get air. But, we've heard of other babies who were so happy to have the tube out that they started eating again. There are so many variables and things to try. I am feeling pretty overwhelmed...

Post-Catheter Update

The procedure went well! We don't have all of the answers yet, as the final debrief with the doctors will be this afternoon.

What we do know:

-The evil extra vein that showed up in the echogram they did the other week turned out to be a vein that the surgeon had actually closed off! So it is of no concern at all and can be ignored. There must have been some miscommunication/lack of communication between our cardiologists and the surgeon for them to have not figured this out prior to today's heart catheter. But, no matter--this is very, very good news.

-They found that Grant does have elevated pulmonary pressure (the blood that is coming from the lungs into Grant's heart is flowing faster than they want--kinda like when you put your thumb on the end of a garden hose and it makes the water shoot out faster). There is nothing they can do except give Grant time to see of he'll improve. We haven't yet talked about probabilities, long-term impact, etc. We hope to know more soon.

-They discovered that Grant is anemic (he has low levels of red blood cells) which may be contributing to the elevated pulmonary pressure. He had a blood transfusion during his surgery, so this just recently developed as his own blood became a larger and larger percentage of the whole. The short term solution is medication, but we haven't yet talked with them about the cause, how to fix it for good, long term ramifications, etc.

-As Shannon posted, the gut-doctor put Grant on Zantac to treat his bad acid reflux. It is such a relief that Grant's horrific suffering wasn't linked to his heart! He has already gotten quite a bit better. We're going to be taking Grant's nose tube out next week to see if he'll eat enough through the bottle. We think he will which will make our life so much easier, increase the sleep we're getting and will help with the acid reflux.

Our cardiologist that did the cath said "we're not out of the woods yet...". By that he means that if the pulmonary pressures don't improve and the anemia isn't fixed, then worst case scenario is another open heart surgery. Yuck.

As I've been typing this Grant should have awakened from his sedation...but he hasn't. If he doesn't wake in the next 45 minutes then he'll have to stay the night (bummer). And they would then do a blood transfusion while we're here to improve his red blood cell count.

Well, we may not be out of the woods yet, but we certainly see the end of the forest and we're making a beeline for it.

Shannon and I are doing well and are so thankful for all of your love, prayer, care and support.

Acid reflux

We visited the GI doctor today and he thinks Grant has a pretty clear cut case of acid reflux. He also believes the reason it has gotten so bad is that the NG tube is irritating him and making the whole thing pretty darn painful. He prescribed zantac and said it should start working anywhere from 48 hours to 2 weeks. In His mercy God seems to be speeding up the process and Grant has improved after just one dose. After his first dose he drank half his bottle! He is not quite his normal self yet, but is calmer than he's been all week. We have the heart cath at 9am tomorrow and they said it should take 2 hours. We'll update you then.

A Day of Fasting

A friend of ours suggested an idea to us that we'd be remiss to ignore: she encouraged us to ask those of you who are followers of Jesus and are familiar with the practice of fasting to join us in a day of prayer and fasting for Grant on Wednesday the 24th (the day of his heart cath)that he'd be completely well.

To all of our friends who are not followers of Jesus--please don't feel left out! Know that we love you and very much appreciate all of your kindness, encouragement and care.

Check out my smile

Doctor's Visit

Last night Grant continued to scream, fight, gag and throw up during his feedings. After talking to a U of M doc this morning, he suggested we get Grant checked out for possible acid reflux. So, we went to our local pediatrician this morning who said there are so many variables that she is sending us to a GI doctor. So, we are waiting to hear when that appointment will be. (Sometime today or tomorrow.) The heart cath is still scheduled for Wednesday.

Waiting for Morning

This is now getting really difficult as Grant has begun to suffer. He has times of intermittent normal behavior with times where he thrashes his arms, jerks his head and contracts his whole body while trying to cry through desperate gasps for air.

I wept as I held him in my hands, incensed at his faceless torturer. It's pure horror to watch and not be able to console him, to get my hands on the problem and tear it to pieces.

It is one thing to be inconvenienced, to be a bit low on sleep, to have to learn to shed our anxieties into the capable hands of the God who so tangibly loves and cares for us...but to see my son so miserable makes me furious.

I'll go pray for Grant now, as I can hear him struggling in his crib. Then I'll lay down, chat with God a bit about all this and most certainly feel better. And then there'll be morning--always there with a delivery of fresh hope, renewed energy and hopefully a ray or two of sun.

He always, always get us through.

Still a mystery

It's Saturday morning and Grant had a rough night. He was constantly grunting (gasping for air) and flailing his arms and legs. Any time we put the bottle in his mouth he gagged. We tube fed him throughout the night and he kept it all down. We talked to the doctors several times throughout the day yesterday. Our cardiologist is amazing and kept calling us at home to check on us. He kept apologizing that they can't figure out what is wrong with Grant and recognized how frustrated we must be as parents. He said he will not rest until Grant is better. He rescheduled the heart cath for Wednesday in hopes that any virus Grant has will be gone by then. However, he said if he continues this behavior we could bring him in on Monday and they'd probably do it then. The danger in letting Grant continue to grunt and struggle to get air is that at some point his heart may just give up from working so hard. But, at the same time they said that they won't do anything for him at the hospital except watch him if we bring him in over the weekend. So, they advised us to watch him very closely at home (thank you Jim for taking the 9pm-5am shift last night)and bring him in if he gets worse. This is all so confusing and not clear cut. Please pray for wisdom for Jim and me to know what to do.

We're home!

We just arrived home with Grant and I thought I'd update you while grandma gives Grant his bottle. Grant is stable, but there is concern about an underlying problem. The fact that the veins are more constricted since surgery and the extra vein is unexplainable has caused the doctors to schedule a heart cath for January 31 at 11am. They are concerned enough to try to get to the bottom of this.

But, Grant is getting closer and closer to being back to his normal self. So, our hope is that it was just a virus and the surgery did in fact fix everything.

Prayer Requests:
1. Peace for us in caring for Grant at home after such a scare
2. That if there is still a problem with Grant's heart/veins, God would do a miracle and the cath would show it
3. Healing for Grant's lungs

Thanks for your prayer support through this. We believe it is what got us out of the hospital so fast!

Headed Home?

Grant is improving. However, he is still not the same baby he was a week ago. He is grunting a lot (which is a sign that he's trying to get air) and breathing fast. However, he is starting to drink from his bottle again and seems a lot calmer than he was yesterday.

The doctor came in this morning and said that if Grant continues to drink from his bottle (a sign that he has enough air to suck) then we could go home tonight. The good news is that Grant did drink a significant portion of his first bottle this morning...but, then he proceeded to throw it up. So, again, the situation is not clear cut. The doctor then said that Grant has to make it through the day without throwing up again in order to go home.

So, what was actually the problem? No one is really sure. Although they are willing to send us home, they still want to investigate what caused the flair up. So, they scheduled a heart cath for next week to try to get to the bottom of it. They could keep us in the hospital until then, but they think he'll get stronger and healthier faster if he's at home.

In short, please pray that Grant's breathing slows, he sucks his bottle and he doesn't puke. :) If all this happens we'll see our own bed tonight. We'll keep you posted.

No Answers Yet

Summary:
They aren't sure why Grant has regressed a bit. He is actually about 20% better than yesterday morning, but still not good enough to call this little episode just a bump in the road. They are considering a bunch of theories regarding the cause and they'll decide tomorrow what to do. Please pray that Grant's lungs and heart heal and that the doctors have wisdom about what to do next.

Details:
They have several theories about what may be causing Grant's regression...

-An infection, though I think they actually ruled that out.

-A hidden virus that is sapping up the tiny energy reserves Grant has, therefore causing his heart to struggle to do its job. Solution: hang out in the hospital until it clears.

-The x-rays of the lungs aren't horrible...but they aren't as good as they would like and expect at this stage in Grant's recovery. But they don't think it's likely that their condition would be causing the level of struggle Grant is experiencing, but it could play a role. Solution: There isn't one, really. They still hope and expect the lungs to get with the program and heal up completely, but they can't be for sure that they will.

-Just before we left the hospital December 28th, they did a final echogram (similar to an ultrasound) on Grant's heart, and lo-and-behold, they saw another rogue vein staggering off into Nowhereville that they didn't know about when they first did the surgery. They discussed it with the surgeon who argued back that he had Grant wide-open during surgery and made sure there were no naughty veins in places they shouldn't be. He asserted that the echogram must be mistaken (they aren't the most precise tools, understand). There was evidence to support his view--Grant's oxygen levels, heart rate and breathing rate were all in the range of what they expected at the time. So, whether the vein was there or not mattered little because if it was there it was small enough to not cause much of a problem anyway. They surmised that it may never cause a problem and could just be left alone (kind of like an appendix). They would plan to do some more tests down the road to see if it was really there and to just keep an eye on things.

While I love our surgeon's conviction (and trust and respect him completely, by the way), it appears from the new echogram they did today that the infamous vein does indeed exist. However, from what they can see, it still doesn't seem like it would be to blame for Grant's current condition, either. But they can't be for sure from just an echogram. Solution: They'll do a heart catheterization (that's where they shove a tube up a vein in his arm or leg into his heart so they can examine it). That'll give them the data they need to determine if the weirdo vein is causing any problems. If it is, there is a chance they can do something about it right then and there with no extra invasive surgery required (whew!). They would prefer to wait a week to do this so they can rule out the virus theory 100%, but they may do it tomorrow anyway; they're just not sure yet.

So, there you have it. Shannon is doing fantastic and I'm so thankful for that. Thanks for being faithful readers and pray-ers!

Back at the hospital

We're at U of M right now and they are running tests on Grant. So far they've found out that the restriction in his veins has gone from 3 (at the time of his discharge) to 7. They usually don't do surgery unless it is a 12 or higher. However, the doctors told us that going from a 3 to a 7 is probably not enough to cause the distress that Grant is showing. So, they are continuing to run more tests to try to find out what other underlying problems there might be.

They tested him for RSV and it was negative. There is one other infection that they think might be a likely cause, but we don't have the results for it back yet. Please continue to pray, pray, pray.

A Step Backward

Over the last few days Grant has had difficulty breathing and showed some signs of congestive heart failure (essentially the heart is having trouble pumping blood as it should). The symptons were bad enough today that Shannon called the cardiologist at the University of Michigan to tell him about it. He had us go to the local emergency room (Royal Oak Beaumont) and they confirmed our suspicions. Grant is not in an "oh-my-gosh-this-is-an-emergency" state, but the boy ain't right, as they say.

They poked, prodded, and took some x-rays and blood tests. He has a more fluid in his lungs than he did at our check-up last week, so this is likely the culprit. Beaumont is shipping us back to the UM hospital for Grant to be re-admitted.

We don't yet know what happens once we're there or what this all means, exactly. It is very possible that this could be a relatively common (though unfortunate) glitch in the healing process--a step backward, if you will--and Grant just needs a bit of extra rest and help to get over the hump. Or it might be something more serious; we don't know.

Please pray for:
1. Shannon and I to be calm and to find ourselves able to converse with and trust in God.
2. Grant's lungs and entire vascular system to be completely healed.

Thank you all! We'll keep you updated...

Pray for Grant's feeding

Instead of continuing to increase the amount of formula Grant is taking by bottle, the last few days he has been taking less and less. When we go to give him his bottle he starts shaking his head side to side, flailing his arms around and kicking his legs. The last two nights as I've attempted to hold the bottle in his mouth, in spite of his attempts to reject it, he has responded by throwing up all over me. :)

The nurse told me that some babies get really used to tube feeding and don't like the bottle because it is too much work to suck. I really hope that this is not what Grant has decided because we are eager to get the tube out. But, he has to drink all his bottles by mouth for that to be a reality. Please pray that Grant would start to like his bottle again.

We've Come So Far

Today I was looking back at our earliest blogs surrounding Grant's birth and the first week of his life. It really hit me how far he's come. Sometimes I tend to get frustrated by the oxygen or having to wake him in the middle of the night to give him meds, and I forget to be thankful for all the answered prayers we have seen.

A few days ago after a sleepless night, a delivery of a second malfunctioning oxygen compressor and a baby that cried every time I put him down, I said to a friend, "This is too hard. I just can't do it." When I've said that before to people they tend to answer, "Yes, you can." But, this person surprised me with their answer. They said, "You are right. You can't do it because you are trying to do it alone. That is why you need to invite Christ to carry your burden. Then it won't feel so heavy." That was a real turning point for me. When I try to care for Grant on my own and forget to talk to God throughout the day I feel burned out and anxious. But, when I ask God for His help and His peace and His wisdom when caring for Grant, He gives it to me. I am so thankful that we have a personal God, one that we can talk to and whose voice we can hear if we are still enough to listen. He has heard our prayers and yours. Thank you God, and thank you friends.

Bath Time

Right on Track

We just got back from U of M for Grant's first check up. They said he is right on track in terms of his progress. He still has some congestion in his lungs, but much less than when we left the hospital. His respitory rate has improved and his chest scar is healing nicely. They want to keep him on the oxygen for now and will re-evaluate his need for it at our next appointment on February 8. (Start praying now!) He is gaining weight, but is still not eating as much as a healthy baby at his age. They told us that if he drinks his whole bottle by mouth for 24 hours, we can pull the tube. Right now he drinks his whole bottle 2-3 times in a 24 hour period and we have to tube the rest. However, we started "suck therapy" yesterday and I'm hoping Grant will continue to improve on the bottle.

4 Weeks Old

One month update

Grant is one month old today. Our visiting nurse came today and had both good news and not so good news. The good news is that Grant gained a pound this past week! The not so good news is that his respitory rate is "higher than we'd like to see." So, we continue to pray and we'll see what the doctor at U of M says on Thursday.

Afternoon nap with mom

Visiting nurse

Our visiting nurse came this week to check on Grant and things went well. He has gained a little weight (2 oz) since leaving the hospital and is keeping down his formula. (Thanks for your prayers! We've had no projectile vomiting since the last post!) We go back to U of M on Thursday for lung x-rays and to meet with Grant's doctors.

Grant's first outing

Yesterday Grant got to see the outside world for the first time since we came home from the hospital. It is not an easy thing to get Grant out of the house because he has to be hooked up to the portable oxygen tank at all times. Right now it takes both Jim and me to do this, but hopefully after a while I will feel comfortable doing it myself. Jim plans to go back next week, after a full month off. I'm so thankful to have his help this week as we settle into life.

My mom has been an amazing help running errands, feeding Grant, singing to him and making his special "protein shakes." Speaking of "protein shakes" (a special high calorie formula that Grant needs), please pray that Grant's stomach tolerates the new recipe that we are starting tonight. We tried to give it to him a few days ago, but his little tummy wouldn't tolerate it. He really needs to gain weight and strength at this point. Please also continue to pray for healing for Grant's lungs. He continues to breathe really fast, which is within the normal range for him, but still faster than healthy babies. He can only take a few sips from his bottle at this point before he needs to rest and take catch his breath.

On the other hand, his lungs must be working pretty well, because I can hear a cry in the next room...

Almost Normal Crazy

I think life at home with Grant is just now starting to become more like what new parents experience when they arrive home with a new, healthy baby--crazy, yes, but a normal crazy.

We're so thankful: Grant is doing great; Shan is being an all-star mom; Shan's mom (now a Grandma!) has been such a big help; friends from Genesis (our church) are providing us with meals; and it is sunny today (perhaps the biggest miracle of all given that it is January in Michigan).

Our only real problem is that Michigan lost the Rose Bowl. Oh, and we need more sleep. A lot more sleep. But that is a normal rite of passage for new parents and is nothing worth taking up cyberspace to jabber on about.

Since we're normally not big bloggers, our posts will be a bit less frequent going forward. We'll put up some pictures, perhaps, and we'll definitely give updates on our next four big hurdles:
1. Follow-up appointment with our cardiovascular nurse practicioner, Katie, on 1/11/07
2. First appointment with our cardiolist, Dr. Cotts, on 2/08/07
3. Grant not needing the feeding tube in his nose (he grows stronger)
4. Grant graduating from the oxygen tank (lungs heal and high pulmonary blood pressure gone)

Thank you for continuing to pray for our family!

Happy New Year!

We're doing fine and sure are thankful to be heading in the right direction.

Yet in many ways, this stage of the journey is the hardest yet. All the medical care we have to give Grant takes more time and energy than just the regular new parent stuff. Add the two together and we haven't slept much, that is for sure. But, Grant is doing fairly well.

One big item in Grant's recovery is an increased calorie diet. However, Grant has not been feeding well since we arrived home so we are wrestling with all the variables trying to get it to work. Please pray that Grant would begin to eat more and to digest it well.

Thanks again for everything. Godspeed in 2007!

Grant's Echo

Before we could leave the hospital, Grant had to have an echo, lung x-rays etc. When the doctors came to Grant's room that night they had some disappointing news for us. They said the echo showed "a somewhat prominent left-sided vein draining superiorly into the left innominate vein from an unclear origin." Translation- Grant has an extra vein that is still connected wrong. The implications for this are unclear at this time. Practically, it means that Grant's oxygen flow is decreased about 10%. The lifestyle challenges for this are similar to someone who has a hole in their heart. This is not a reason to go back and do more surgery. However, if this vein becomes obstructed, like his original veins did, this would become a problem and more surgery would be required.

Sometime later one of the cardiologists came back and told us that she talked to the surgeon and he said he did not see this vein during the surgery. He does not think that the extra vein exists. This is a possiblity, the cardiologist told us, because echos are sometimes not clear. However, on our discharge report from the hospital, it states that Grant still has an extra superior vein connected incorrectly. When talking to the cardiologist that we will meet with on an ongoing basis once home, he said all we can do for now is keep an eye on it, continue to get echos and make decisions as Grant grows stronger and his heart gets bigger. He was very reassuring in terms of believing we can catch a problem like obstruction before it becomes an emergency situation. His last words to me were, "this is for me to worry about. Not you."

I feel so thankful that Grant is doing as well as he is. I have great hope that once we get through the next few months Grant will not be too different from most healthy kids. Right now we are overwhelmed by the amount of care he needs. It takes two of us to care for him most of the time because we are still learning how to be nurses in addition to parents. We do have a visiting nurse coming by tomorrow to help with a few things. I'm not sure I'm ever going to let Jim go back to work...

I love being a mom and I think Grant is going to thrive being out of the hospital. He must be enjoying not hearing beeps go off every five seconds. I know I am. :)

Prayer requests:
1. That Grant's heart and lungs continue to heal. (We'd love to get off the oxygen ASAP so Grant can be more mobile around the house. Right now he's plugged into the wall.)
2. That Grant does not develop any infections from his incisions.
3. That Grant's extra vein would never become obstructed.

Thank you friends!

We're home!

Hooray! We arrived home from the hospital late last night and have been busy ever since- setting up oxygen, feeding Grant through his tube, giving medication around the clock etc. Jim promises to fill you in on details of Grant's status and our last few days at the hospital soon.

Christmas Day Pictures

Waiting for test results

Today Grant had an EKG, eco and lung x-rays. The results of these tests will tell us more about Grant's progress and when we get to go home. We are currently waiting for the doctors to come in and interpret the results for us. We are so thankful to be going home soon. (Sometime this week, most likely.) But, at the same time I have to admit that I am overwhelmed. Today a man came in and explained to us how to hook the oxygen tank up for our car ride home...I put the feeding tube down Grant's nose for the first time today.. and I learned to give him steroids through his little mask...

We are so thankful for his progress, but it is begining to sink in how much care he is going to need even at home. The good news is all of this should be temporary. We'll let you know as soon as we hear from the doctors on our official departure date.

Christmas Day

Nothing new today with Grant--he's doing great and so are we. Merry Christmas!

I'm Afraid We're Annoyingly Thankful

We have so much to be thankful for...
-We have such amazingly loving friends. Messages on the blog, emails, calls, visits, tears, ears, food and prayers--we're overwhelmed with your generous care.

-Even more precious to us has been our loving family. Thank you, thank you, thank you to each and every one. Your love-in-action has made all the difference.

-And most of all, we are so thankful for the love of Jesus. It has been such a gift to so tangibly experience God's peace and tender care through all of this. People can chat theory and theology all they want, but nobody can argue with our genuine encounters with God.

-Grant has been more wide-eyed and bushy-tailed (I don't know where he got the tail; must be Shannon's side).

-He's been so very content.

-He is taking an increasing percentage of his meals from a bottle vs. a feeding tube (means he is getting stronger).

-The chest tube has been removed. Hooray! It drained almost nothing in the last 36 hours so they said it was okay for it to come out. The day before it drained more than ever, meaning it would need to stay in longer; the doc said it might need to be in until Tuesday the 26th. But after we blogged for prayer on this it just dried right up. This is huge because it was the last big hurdle before we can go home.

-We've been able now to hold him quite a bit which has been just fantastic for all of us.

-UM Hospital nurses and doctors are absolutely incredible. One of the cardiologist doctors told me that if Grant had been born in most other areas of the country he likely wouldn't have made it. The UM hospital is one of the handful of places that are able to handle such a situation. There aren't many emergencies in pediatric cardiology--most conditions aren't immediately fatal. The obstruction Grant had along with his goofed-up plumbing, however, is the one and only cardiac emergency situation for kids. Put it this way--the helicopter ride Grant took to the UM Hospital was a life-saver. And I found this interesting: the doc surmised that if Grant had been born just 5-10 years ago he probably wouldn't have made it. Advancements in recent years have been that dramatic.

-We'll probably be able to go home on Tuesday the 26th or 27th.

-The doctors expect Grant to go on to a full recovery and be completely normal and healthy. I asked the doctor to expound on his definition of "normal"--I mean, can Grant be on both the chess team and the football team someday...or just chess? He said, and I paraphrase, the sky is the limit. The condition Grant had (so nice to be able to say had vs. has) is one of the few that actually have a fix, whereas most congenital heart conditions can only be managed with multiple surgeries and medications. Gosh, are we ever thankful for that.


Only a few challenges remain...
-Grant still isn't ready to wein off of the oxygen tubes. Please pray that he is soon able.

-Grant still needs to be fed about half of his meal through a nasogastric tube (referred to as an "NG"). I had to put a new one in him yesterday--it is kind of hard to shove 12 inches of tube down your son's nose until it gets to his stomach. But he just isn't strong enough yet to drink all of his milk from a bottle. It really isn't a big deal to do it, and once it is in it doesn't bother him much, but we'd really prefer to not have to go home with it. They say he may need it for a few weeks or even a month or so. Please pray that Grant quickly grows strong enough to take all of his milk from a bottle.

-Grant is on 4 medications and will hopefully wein off of them over the next few months: Sildenafil, which dilates blood vessels to reduce the blood pressure in his pulmonary arteries; two diuretics to also help reduce his blood pressure; and an inhaler to open his lungs and help him breathe. Please pray that his blood pressure returns to completely normal, his lungs heal completely and he is able to successfully wein off each medication.

-About 10% of patients that had Grant's condition have difficulties down the road. Some need a follow-up open-heart surgery, but that generally pops up within a year. Once a year has past, only a very small percentage ever has issues later. Grant's procedure went great and they expect him to be fine, but please pray that the pulmonary veins they surgically attached to his heart remain perfectly healthy and continue to grow along with Grant as he grows.

So, our dream is that many of you would continue to pray for Grant throughout 2007 for complete healing and that all of the wonderful things God has in store for Grant would someday come to pass.

Merry Christmas! And to some of our friends, Happy Kwanzaa! And to others, Happy (belated) Hanukkah! We so love you all,

Jim, Shannon & Grant.

Best Day Yet...

...but too tired to blog it. We'll give you all an update tomorrow.

Chest tube update

The chest tube didn't come out again today. There is still too much drainage from the surgery. They said it won't come out tomorrow either. Please pray that his drainage slows down to less than 3 cc's. Right now it is over 20. (Unfortunately, this is an increase from yesterday.)

Onward & Upward

The kid almost seems normal now--he whines, cries, eats out of a bottle in addition to the feeding tube, sleeps all day and then poops like a rhino. And we love it.

Saw the senior doc today and he said Grant is doing great. Chest tube is still in though...please pray the drainage stops so they can take it out tomorrow.

His lungs are slowly repairing and doc said they will recover completely in time. Hooray!

So, next steps are:
1. Chest tube out
2. Slowly get off the oxygen
3. Go home (we'll most likely be released the middle of next week)
4. Wean off the meds over the course of several weeks
5. Have periodic check-ups to see how he is doing as some percentage of TAPVR patients require a second surgery within a year.

Shannon has been having difficulty sleeping again, which really triggers a downward spiral--thank you for continuing to pray for her.

We love you all!

Graduation Day

Well, well, well--Grant Samuel graduated from intensive care today and he is now on the "floor." He did it! We're still on the 5th floor, so give us a jingle or email if you're visiting and need to find us in our new spot.

And, Shannon got to hold him today! But just for a little bit--he still has the chest tube in and it is quite uncomfortable for him when he is jostled around. Tomorrow the chest tube comes out.

So, in summary:
-Off most of the crazy meds; now just on antibiotics, blood-flow enahancer and steroids.
-Off the ventilator, so he is breathing on his own. He does have an oxygen tube rammed up his schnoz, though. Without it his beat-up little lungs can't quite do the job.
-He is chowing on milk/formula through a feeding tube in his nose and handling it well. They are super-charging his food with a weight-gainer formula so he gets lots of calories. (No, Corey, he's not on creatine, but he is going to start training for his first strongman competition soon)

We really don't know what is next as we haven't had the chance to chat with the doctors yet. If I go by one of the last estimates, we probably have another week or two here still as his lungs continue to heal.

My next big question, and our primary prayer request, is regarding the condition of his lungs and the probability of a complete recovery. Is the damage permanent? Or will he heal? What long-term implications are there?

Finally, we want to thank you again for the encouragement and support and the help with meals. It is so amazing to be cared for like you all have cared for us. Ahem...quite emotional here...

Grant made it. Wow. We are so thankful. We'll update as soon as we hear from the doctors about his lungs.

Full Cup

Grant has an infection, but nothing crazy-serious. They are investigating the what, where and how and in the meantime giving him a do-all antibiotic. This explains the fever. The fury of sneezes today are just cute baby-sneezes.

As a result of the infection, Grant is staying in intensive care another day and night. Hopefully tomorrow he'll have the infection cleaned out and the chest tube removed (it drains the gunk from the incision on his chest). Then he can move to moderate care and we can hold him. The little squirt just begs to be cuddled but it has been hands-off for us all this time.

Shan is sleeping well and is doing great.

This is redundant, but we are so thankful. Thankful for our experience of God's direct care for us, as well as His indirect care through all of you. You can't imagine how amazing it is to be here at the focal point of all of your real, tangible, touchable love.

As we've caught up on sleep and finished filling out paperwork and finally figured out where to microwave food, etc, etc, it has been quite an adventure to engage the other people here that also have children in intensive care. So many stories, so many sad situations, so much pain. But also so much courage, faith, hope and love.

We have just begun to get an inkling of how to be supportive to those in the midst of a struggle--what helps, what hinders; what lightens the load, what burdens. We're learning this both as we are in receipt of others' care for us, and as we attempt to give that care away to others that don't have any of their own.

Bear with me as I share the following story. I just have to, as it has been one of the hallmark experiences on this journey of ours and I'd be remiss if I didn't force myself to digest it further and crystallize it in writing.

Tom & Julie brought Michael, their 10 year old son (today is his birthday), here yesterday for open-heart surgery. He was born with his heart installed backwards, and while they've had a few surgeries in years past to keep him going, it wasn't until recently that a procedure became available to fix the problem long-term. His condition worsened this year to the point that they had no choice but to undergo the surgery. There were several complications that turned the 5-hour surgery into a 7-hour surgery and they almost lost him a couple of times. The gut-wrenching horror of those 7 hours for that family is hard to fathom.

We didn't meet Tom & Julie until today, but we couldn't help observe the unfolding of events last night in the relatively small space that makes up the waiting area of the 5th floor PICU (pulmonary intensive care unit). We happened to have been just given a small vase with a few beautiful roses that day and we had it by our side to brighten the sterile room. It struck us that the tear-stained woman across the hall could really use one. She had just stepped into the rest room so we took a chance and brought a single rose to the man that was with her. "This is for her," we said with a gentle smile. "Thanks" he said with slight surprise as he unburied his face from his hands.

And that was it. We walked back and sat down.

I was powerfully reminded last night that focusing on the needs of others (vs. my own), allowing compassion to well up, and then responding to that compassion in simple acts of care feels oh-so good! Much better than even all the wonderfulness of being in receipt of such care (which is pretty darn wonderful). It was a small nothing, dropping a rose into some guy's hand. But ya know, we hadn't felt that good all week. So I'm reminded again that the universe really is designed to work best opposite our typical leanings--tis indeed better to give than to receive. But all of you reading this have been so giving to us, you certainly already know that!

Understand, too, that we only gave away what we were given. We can't claim any ownership of that simple act. We really can't even feel good about what we did, we can only feel good that it was done. The awareness, the motivation, the hurt in our heart for that family, and even the rose itself, were all given to us. None of that was ours--we didn't manufacture it, we didn't even find it--it was given to us. So we can't be proud, we can only be thankful that God and you have filled up our cups with your love and care.

The mother, Julie, stopped us today to introduce herself and ask if it was us who left the rose for her. She said we couldn't begin to understand how much that meant to her. She said she can't help herself--she just has to give us a hug.

Sigh...our cup is indeed full. And again, we can't take credit for it! So thank you for being used to fill our cups so we were able to siphon off a bit and help fill the empty cups of those around us.

Any pray for little Michael--that he'd heal. And for Tom & Julie--that their cups would be full.


Sheesh...when did this blog turn into my diary?? I feel sheepish...

Pray against infection!

I just went to check on Grant and he's been sneezing and coughing throughout the night and has a slight temperature. Please continue to pray against infection.

Sneezing

I forgot to mention that in the last posting that Grant has been sneezing a lot today. Please pray for protection against infection.

Breathing Room

Yipee! Grant is off the ventilator! He is making a smooth transition to breathing on his own. It is so nice to see him without a tube in his mouth. (He still has an oxygen tube and feeding tube in his nose, but anticipate seeing him "tubeless" one day soon.)I heard him cry for the first time today and it was music to my ears. :) He also sucked on the pacifier really well, which is a good sign, because many babies don't like anything in their mouth after the ventilator is out.

The next step is getting the chest tube out. They had hoped to do this right after taking him off the ventilator, but he still has too much drainage from the surgery.

As of 4am this morning, the doctor said his lung x-rays still looked "pretty bad." However, the doctor said Grant's behavior and other signs don't line up with how bad the x-rays are. We're taking this as a good sign, but are looking forward to a good x-ray report in the near future.

Current Prayer Requests:
1. For the drainage in his chest to decrease so the tube can come out ASAP.
2. For total healing of Grant's lungs and x-rays to prove it.
3. For rest and good health for both Jim and me. (Once the chest tube comes out we'll get to hold him!)

Phase II?

That's my boy!--7 days old and he's already doing "sprints." If Grant can get off the ventilator tomorrow completely, then that will signal the successful completion of Phase I and the launch of Phase II of his recovery. Thankfully, the scariest part of this whole experience will then be in our rearview mirror. At his current trajectory, Grant will graduate to Phase II hopefully in the next 24 to 48 hours. Please pray that his lungs would be completely renewed and strengthened.

As we've said before, the battle through Phase I has been for Grant to live; the battle from here on out will be for Grant to live well. This afternoon the nurse estimated that Phase II will involve us moving out of the intensive care unit into a private room down the hall for 1-2 weeks where Grant will heal and strengthen while the medical staff monitors. Shannon and I also need to learn how to care for the little squirt once we get him home (a scary concept, truthfully).

Thank you, thank you for caring for us and praying for Grant all through Phase I. Only 1 or 2 more days left of this leg of the race!

And we thank you in advance for sticking with us and Grant through Phase II--our next 1-2 weeks here at the hospital.

Oh, and another good report--Shannon has slept well the last two nights (insert big sigh of relief here). Thank you again.

Doing Sprints

Today has been a day of preparing Grant for getting off the ventilator. They do this by having him do "sprints." This means they turn off the ventilator every couple of hours and let him breathe on his own for 50-60 minutes. They take his vitals at this time so they can monitor how his body reacts to breathing on his own. Every time they have done it so far his blood pressures soars for the first few minutes, then he settles down and does great. He'll do a couple more sprints before they actually take the tube out tomorrow. They are also giving him some steroids so that the swelling in his throat goes down from having the ventilator in so long. Please pray that Grant continues to "sprint" well and that he adjusts perfectly to having the ventilator removed. This will be a huge hurdle.

Better...but not outta the woods yet

The Good
1. He is down to 5 meds from more than 15 at one point:
a . Pain reliever (Morphine)
b. Sedative
c. Antibiotic
d. Steroid
e. Blood flow enhancer (Viagra)

2. His fever from last night is gone.

3. The results of the surgery are excellent--his heart is now normal!

4. Shannon and I are overwhelmed with thankfullness for all of the love--emails, phone calls, visits, flowers, food, prayers, encouragement, great Doctors and Nurses, sense of God's nearness and care, peace that doesn't make sense, and each other. I mentioned to a friend via email that, oddly enough, I've never been more thankful in my life.

The Challenge
1. The x-rays of Grant's lungs seem to show quite a bit of damage. The Doctors aren't sure just how damaged they are and to what degree they will be able to heal. Starting tomorrow they are going to begin the slow process of reducing the ventilator (the thingy-ma-bob that breathes for him) to coax his lungs into working on their own. This lung issue seems to be the last crucial hurdle for Grant to overcome before he can graduate from "intensive" care to "moderate" care.

2. Shannon isn't sleeping as well as she needs to.

The Hope
1. The transition to moderate care will be an exciting one as then Grant will no longer be fighting just to live, but to live well. The Nurses tell me that if his lungs can handle it, he might only have a few more days left of this phase of his journey.

2. The Doctors are optimistic that a complete recovery is possible.

The Prayer
1. That Grant's lungs would heal completely.
2. That Shannon would sleep soundly.

Thanks again to all!

Doctor's update

I just met with Grant's doctors this morning. They said that he had a fever last night and may be fighting an infection. They also said that his lungs looked "pretty bad" on the x-rays. On a positive note, they are happy with the progress he is making weaning off his medications and will start weaning from the ventilator today.

Pictures of Grant

The top picture is what Grant looks like today hooked up to all the machines at the hospital. The bottom pictures were taken right after birth before we knew anything was wrong.

Off the nitric

Grant had another good day. He was able to wean off the nitric entirely today! Unfortunately, his body isn't totally able to adapt to this change yet, so they had to add viagra (yep, it has many uses) to his medication list. Without understanding all the details I guess it is better to be on viagra than nitric, so this was a positive development.

Another positive element of the day is that he was able to eat breast milk for the first time. They fed it through his nose and he seemed to be digesting it just fine.

The hardest part of today was seeing Grant gag on the ventilator several times. When he wakes up from his sedation he starts to squirm and this moves the ventilator and makes him struggle and gag. If he has a good, attentive nurse she notices this right away and takes care of it. But, have been a few times in the last couple of days that the on duty nurse wasn't paying attention and I had to go grab her and bring her back to his bedside. (Each baby in the PTCU has one on one nursing attention so this really shouldn't happen..)

Current prayer requests:
1. For attentive, loving nurses
2. For Grant to wean off the ventilator smoothly
3. For Grant to wean off more of his medications
4. Thank our gracious God with me that Grant is progressing so well!

Only 8 meds to go

Grant had a great night. They were able to wean him off two more medications, so he is down to eight. They have also been able to reduce the nitric from 20 (on Wednesday) to four. They will continue to try to reduce it today. When they get him off it totally they can attempt to take him off the ventilator.

What are the odds?

By the way, a little insight into the statistical probability that the "Psalm 118 thing" would occur:

The Old Testament has 39 books, and the New Testament has 27 books. In these 66 books, you will find a total of 1,189 chapters containing about 31,273 verses. What are the odds that our friend would have "randomly" thought that Grant would be a "Proclaimer" vs. the idea that God communicated that to him? What are the odds that so many people would have ended up at Psalm 118--let alone the exact verse (17)--vs. the idea that God led them?

Just a little food for thought.

Hey Jan--perhaps we should do a Monte Carlo Probability Analysis on that, huh? (sory--an inside joke with my office)

Patched Up

Three positive developments:
1. They patched up his chest this morning and he did just fine--this is his biggest victory yet!

2. He was on 14 different meds dripping into him continuously and is now down to 11. He is totally off the meds that paralyze him; so he wiggles around a little, slightly opens his eyes and sticks out his tongue (I told him he better respect his parents!). The med most crucial to reduce is nitric, and that is now at its lowest level. Ya know, in a way, I find it a bit more difficult now that he's not totally snowed on meds because when he manages to slightly crack open his eyelids and look at me I feel like he is saying "Dad--what is going on? Help me...". But I know he isn't feeling anything, and he certainly won't remember. Shannon really likes seeing him a bit responsive, though, so that is great.

3. He just looks better (though not for any medical reason, but it makes us feel good).

Another cool thing--I've received quite a few emails and a couple blog replies that people have been praying Psalm 118 for Grant before I ever posted about it (see blog entry "Proclaimer" for background). Take, for example, this email from "Carla" (names have been changed to protect the guilty) who has been praying for Grant; she writes:

Confirmation - I prayed that same Psalm for Grant - that he would live and not die and proclaim what God has done.

Or our friend who posted the following:

I was with a group of friends last night and someone read that verse from Psalm 118. I immediately thought of Grant. I even remember thinking "I need to email that verse to Jim... tell him it's for his son."

Grant is probably a solid 7 right now (on the 1-10 scale), so while that is certainly better, he is still fighting to live. But we're almost past this stage of the journey. Then our attention will shift to praying Grant has a full recovery so he can grow up to be a robust, active, healthy whipper-snapper. It is possible that we may find ourselves there by the end of the weekend.

New Good Development

The lead surgeon for Grant, Dr. Devaney (a splendid chap, I must say), reported they've decided that Grant is ready to have his chest closed up. This is a big win for the little feller. They are going to do it sometime on Thursday.

He is still in the 7-9 range, but much more solidly toward the 7. Tomorrow will be a big step toward moving to the next phase where to battle isn't life and death. So please pray that he remains stable during the procedure and that he continues to get stronger.

Correction to the last update: EKMO is actually ECMO (eh, sounds the same, you know?). Extracorporeal Membrane Oxygenation (ECMO) is a form of long-term heart-lung bypass used to treat infants, children, and adults in cardiac and/or respiratory failure despite maximal medical therapy.

Proclaimer

Hi all--Jim here with an update.

Grant is still in the "fight-for-his-life" stage of the journey.

We've come up with a subjective scale of 1-10 that we use with the doctors/nurses, where 1 is perfect and 10 is as bad as it can possibly be. He was definitely a 10 on Sunday--that is what triggered the emergency surgery. He has been floating around in the 7-9 range ever since, though today he is more toward the positive end of that scale.

They have been successfully reducing a number of his 13 medications that are being constantly fed into him via computer-controlled drips--I think he is down under 10 different meds now, with some of them at reduced dosages. He resisted that yesterday (by "resist" I mean that his vital signs--blood pressure, etc--would react too dramatically to the changes, thus preventing them from doing it), but he is tolerating it today. So that is good.

The Dr. is considering closing up his chest today or tomorrow (he had open heart surgery, you know), which would be a major victory. It would mean that he is stable enough to handle the procedure and that they don't fear that they'll have to hook him up to a machine called "EKMO" (sounds like the name of a Muppet, to me). My limited understanding of EKMO is that it would serve as his heart for him--his blood would go out of his body, into the machine and the machine would pump it for him. That would be bad. So, we're hopeful they'll give the go-ahead on closing his chest.

So, as said, still in the 7-9 range, but closer to the 7 as of late. Thanks for continuing to pray for complete healing.

I (Jim) am doing fine--thankful to be experiencing God's strength. Shan has been so filled with God's power, too; I'm very proud of her. Sleep for her, though, has been rare. Please pray that she would begin to be able to sleep solidly.

A final cool note: one friend came to visit Grant and pray for him. After a short time our friend shared that he felt God saying that Grant is a "Proclaimer" and that he would bodly proclaim how good God is. I thought that sounded great but I really didn't make much of it; kinda put it on the shelf, if you follow me (maybe it was God, maybe it was just a kind thought, maybe it was nothing). A few hours later another friend suggested that Psalm 118 would be for Grant (actually, he now claims he suggested Psalm 116--but I'm certain he said 118). I read Psalm 118 and right in the middle of it is verse 17:

"I will not die but live, and will proclaim what the LORD has done."

The surrounding verses are just as encouraging--you can read it and turn it into a prayer for Grant (Psalm 118 http://bibleresources.bible.com/passagesearchresults.php?passage1=psalm+118&version1=31).

Thank you, thank you for surrounding us in love and Grant in prayer.

Treading Water

Today Grant is treading water. He is still on 13 medications to keep him stable. He is also sedated and on a venilator. Any movement thus far has caused his pressures to drop, so they keep him totally immobile. They have not even attempted to change his dressings because they are afraid that the small amount of touching may make him unstable. His chest was kept open in case another emergency surgery is necessary and it is very important to keep that area clean so as to not risk infection. Please pray for him tonight as they attempt to change the dressing over his heart.

When we met with the doctor tonight he said that Grant is progressing slower than they would have liked or expected and that the lungs continue to be a concern. We are not sure what exactly that means and were too tired to ask. While he has not made any significant improvements today, at least there have been no major setbacks. Tomorrow they are going to attempt to reduce his nitric level. Please pray with us that his body will adapt to this with ease.

Grant's condition

The name of the congenital heart defect that Grant was diagnosed with is Total Anomalous Pulmonary Venous Connection,with obstruction. In TAPV, the pulmonary veins that bring oxygen-rich blood from the lungs back to the heart aren't connected to the left atrium. Instead, the pulmonary veins drain through abnormal connections to the right atrium.

In the right atrium, oxygen-rich blood from the pulmonary veins mixes with venous blood from the body. Part of this mixture passes through the atrial septum into the left atrium. From there it goes into the left ventricle, to the aorta and out to the body. The rest of the poorly oxygenated mixture flows through the right ventricle, into the pulmonary artery and on to the lungs. The blood passing through the aorta to the body doesn't have enough oxygen, which caused Grant to look blue.

In surgery, the pulmonary veins were reconnected to the left atrium and the atrial septal defect was closed. What makes Grant's condition more serious than most cases of TAPV is that he also developed an obstruction. The obstruction had and continues to have an effect on the lungs.

Life flighted to U of M

After Grant's birth we spent a few wonderful hours holding him and getting to know him. He looked perfectly healthy. During his 3am bath a nurse noticed that he had begun to breath more rapidly and was turning blue. Some tests were run on Grant and we found out that his lungs were 80% filled with blood. We met with the cardiologists and they had him life-flighted to U of M for some tests and possible surgery.

After arriving at U of M they did an ECG and diagnosed Grant with Total Anomalous Pulmonary Venous Connection, with obstruction. They scheduled the surgery for Monday morning and attempted to keep Grant stable for the rest of the day. In the late evening Grant's vitals dropped and they decided that emergency surgery was necessary to save his life.

The 4 hour surgery was a success in terms of reconnecting the pulmonary veins to the left atrium. However, Grant's heart is having trouble recognizing these changes and is acting like the veins are still connected in the wrong places. To compensate, the vessels are constricting, cutting off the blood supply that should be freely flowing between the heart and lungs. As a result, Grant is on 13 medications, one of which is nitric, which keeps the pulmonary vessels open that keep trying to close. The goal over the next few days/weeks is to get Grant off these medications, most importantly, the nitric. If he can get off the nitric it will show that his body is learning to adapt to his new heart and he will be able to begin weaning off his other meds.

Grant's birth

After 26 hours of labor, Grant Samuel Niedzinski was born at 1:02am on Saturday, December 9, 2006. At birth Grant weighed 8.8 lbs and was 21 inches long.