July 2003 Archives

Moving right along...

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Today Matthew's intestines starting pushing things through, so he was able to have several bowel movements. Yeah!! Praise God! Yes, it is the little things he does these days that excites me and that includes pooping! :)

They increased his feedings from 15 to 18 ml's every 3 hours. He seems to be tolerating it very well. Praise God! If he does well at 18 ml's over night, then it looks like they will bump him up to 21 ml's every 3 hours starting tomorrow. He was weighing in at 2 lbs 10 oz. as of last night, but after all the pooping he did today, they expect his weight to be down tomorrow.

They doctor said that they will keep him on the ventilator for another week to really try and get his digestive problem under control. He doesn't do well breathing on his own when he has so much stuff pushing up on his diaphragm making it very difficult for him to breathe. At this point it is more important to get him to grow so his lungs can mature and his muscles will be strong enough to help him breathe.

The doctor said that he is doing really well on the ventilator; it's still on the lowest settings. He is doing great at gaining weight (which they say is usually a big problem for most preemies) so they are pleased to see that. It looks like he is getting plenty of nutrition from my breastmilk, however they will supplement it with calcium and phosphorus when he gets to full feeds. Apparently, it is in the third trimester where they absorb most of the calcium and since he didn't have the opportunity to do that, they are going to give him more in his feedings. Even if I double my calcium intake it still won't be enough for him.

The abnormality in the brain looks like it has gone down some but not much. They don't seem to be too concerned about it doing brain damage at this point, but then again they have never seen anything like this before either. The doctor today even thought that it might be worth documenting this abnormality and writing an article about it, since this is so unusual.

The doctor today also wanted to run more of the rare tests for the Cystic Fibrosis to be sure of what is going on with him because they can't figure him out. She said he doesn't have all the "classic" signs of what most preemies do so it makes it harder to predict what he's going to do next. I thought it was really funny when she said that Matthew read the rulebook but he has decided to play another game and use a different set of rules! Now doesn't that sound like a child of ours? :) I think we may be getting a small taste of his personality here...

Please continue to pray for Matthew to digest the breastmilk and for his intestines to start working properly so he can pass things along smoothly.
Continue to pray that the abnormality in the brain goes away completely.
Continue to pray for the lung infection to go away and that he is able to produce the right amount and type of secretions. Pray for his lungs to strengthen.
Pray that he continues to gain weight and for his muscles to get more developed and for him to get stronger.
Praise God for all the miracles he has performed on Matthew already. Pray that he continues to do so!

Thank you all for your prayers, love and support! We love you all! May God bless your lives richly!


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First and foremost, the tests results for the Cystic Fibrosis came back negative!!! Yeah!! Praise God!! Of course this genetic test doesn't test for all the mutations of the CF gene, but there's a pretty good chance he won't have it because the other mutations are pretty rare. We will have him tested again when he is old enough to do the sweat tests.

Matthew was put on CPAP today at noon but was reintubated again about 6:30. I went to pump and then came back in the room to find my baby blue all over and being bagged by the nurse. He was dropping his oxygen saturation into the low 30's and his heart rate dropped down to the 50's. The doctor decided to reintubate him because this happened several times within the hour.

They increased the feedings to 15 ml's every three hours. Unfortunately, he still has not had any bowel movements.

I didn't get a chance to talk to the doctor again today because she had to leave early. I hope to talk to her tomorrow because there were a lot of other test results that came back today that the evening doctor wasn't sure how to interpret. They may need to call the geneticist tomorrow to understand exactly what they mean.

Praise God for the good news about the CF!
Please pray that he is able to have a bowel movement and that he continues to do so without complications. Continue to pray that he never gets the NEC infection.
Continue to pray that the abnormality in his brain goes away completely. (I should know more about the ultrasound results tomorrow)
Continue to pray for healing of his lung infection and that his lungs continue to grow stronger and produce the right amount of secretions.


About the same...


Matthew is doing well and is continuing to grow. He is still on the ventilator but it is their hope to put him on CPAP tomorrow. Unfortunately, he hasn't had a bowel movement in awhile so they gave him a gastrograffin enema today. This is just like the one they gave him last week that worked. They did increase his feedings to 12 cc's or ml's every 3 hours. (5 cc's or ml's is equal to one teaspoon). He tolerated it fairly well, with only one episode of having residuals.

He had an ultrasound done on his head today along with another abdominal x-ray. The doctor who is taking care of him is out today, so I hope to talk to her tomorrow regarding the results of all the tests and for what this means with him not having bowel movements on his own.

I'll keep you posted.


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Matthew is definitely looking bigger these days. He's up to 1116 gm (2 lbs 7 ozs) as of last night; but he hasn't stooled in over 30 hours, so part of it may be from the excess fluid. They've increased his feeding level to 9 ml every 3 hours, and so far he's had little residual.

He's on the lowest possible ventilator settings, and he's been or room air basically all day, so his lungs are clearly doing very well. He doesn't desat like he used to when you talk to him or when you touch him. They're talking about putting him on CPAP again in the next day or two, and since he's so much larger than the last time they tried it, I expect him to do much better this time.

Still Doing Well


When we saw Matthew today, Jason got to hold him for a while and he was tolerating it really well. He is currently on the lowest settings on the ventilator and is on room air (21% oxygen) most of the time.

His feedings continue to be 6 ml every 3 hours and he is still having a tiny bit of residuals, so they have not increased the feedings yet. He did manage to have a bowel movement without the help of a suppository, so that is a good thing.

The only new news is that he has had a lot more thick secretions from his lungs again. They even had to take out his old endotracheal tube and put in a new one because his older one was so clogged that he kept dropping his oxygen saturation levels. Since they have put in his new ET tube he is doing much better. Unfortunately, they took some samples of the secretions and it looks like he may have an infection in his lungs, so they started him on antibiotics again today.

Please pray for the infection in his lungs to go away completely and that he starts producing the right amount and consistency of his secretions.
Continue to pray for the abnormality in his brain to go away completely and that he does not have CF. Also continue to pray that all the other lab tests come back normal and that his liver starts functioning properly in order to get the direct bilirubin levels back down within normal limits.

Thank you again to everyone we know and don't know for all your prayers, support and comments!

Increased Feedings


They've increased his feedings to 6 ml every 3 hrs this morning. He still hasn't had a stool in about 36 hours, but they're going to wait until later today before giving him a suppository.

Up and Down


Matthew was relatively stable today, but his O2 requirement was up and down. His pCO2 was also a little high today, but not high enough to alarm the doctors.

They didn't increase his feeding level today since he was having small amounts of residuals. These decreased toward the end of the day, so they'll likely increase his feeding level tomorrow. He didn't have any stool today, but they think it may be due to the low level of his feedings.

Feeding Again

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They started feeding him again today!!! They started at 3 ml every 3 hrs, and so far there's only been a small amount of residual at each feeding. As long as there is little to no residual (and as long as he keeps pooping), they're going to increase his feedings 3 ml per feeding each day until he reaches 21 ml every 3 hrs (6 ml per feeding on saturday, 9 on sunday, etc.).

Everything else is basically the same. He's still fairly stable; only requiring 21-25% O2 most of the time. We didn't get to hold him tonight because he had a temporary nurse. So far, every time we've held him it's been with the same nurse. She's not on this weekend, so we may not get to hold him again until early next week.

Matthew is also still gaining weight. He's up to 1090 g (2 lb 5 oz).

More poopy diapers!

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Matthew had his second gastrograffin enema today and boy did he unload! For all you men out there, you'd be proud that he had projectile poops-literally! He unloaded on the nurse, his bedding, the isolette and me before we could get another diaper on him (welcome to parenthood, huh?). This is a really good sign that they may have done the trick with this second enema. They will do another x-ray in the morning to make sure all is well and they will continue to watch him. If he is able to keep moving things through his intestines, then they are probably going to start feeding him breastmilk again in the next day or so.

His respiratory status improved a lot today. Since he doesn't have a lot of stuff pushing up on his diaphram, it was easier for him to breathe today. He was mostly on room air (approx. 21% oxygen) and his carbon dioxide levels were really stable. His oxygen saturation was still going up and down. It mainly went down when he moved or when it looked like he was straining to poop. They even went down a bit more on his settings on the ventilator today. They think they may put him back on CPAP by next week. But they are going to make sure that he is feeding well first before they do that because the CPAP will blow air into his stomach and they want to make sure that with the stomach distention it is just from CPAP and nothing related to digestive problems.

Once again, we felt very peaceful today, PRAISE GOD!!! To top the day off, we both got to hold him again. We didn't hold him for long because he had been through a lot today, but every chance we get to hold him, we're all over that!!

There are a lot of test results still pending, so we will keep you posted if we find out anything new.

Prayer requests:
Continue to pray that he does not have CF, which is the desire of our hearts, but we will accept God's will no matter what the outcome is because ultimately He is in control.
Pray that he continues to move things along in his digestive tract without complications.
Continue to pray for his lungs to get strong enough to be put on CPAP, and that he produces the right amount and type of secretions.
Pray for continued peace for us in the midst of this storm.
Praise God for bringing us closer to Him, to each other and to our families through this.
Praise God for Matthew's improvements!

About the same...

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Matthew is about the same as before. The only new thing is that he has had a few more bowel movements. His stool is still looking like the meconium but it is now looking more like what they call "transitional stool" of being partly meconium and partly digested breastmilk. He will have another belly x-ray in the morning. By the way, I got to change my first poopy diaper today. Yeah!! Of course I say that now, but by the 50th diaper I am sure I won't be feeling the same way...

His direct bilirubin levels have come down from 11.1 to 8.3. Just to give you an idea, his direct bilirubin level is suppose to be below 1. His skin color is still a little yellow, but obviously better than before.

His lungs are still producing secretions but they are not as yellow as before and this could be because his bilirubin levels are coming down.

We won't know the test results of the genetic tests about cystic fibrosis for several weeks. We'll keep you posted.

Please keep praying that he does not have cystic fibrosis and that the abnormality in his brain continues to go away. Pray that he produces the right amount and normal thickness of secretions in his lungs. Pray that his lungs get stronger so he can come off the ventilator sooner. Pray that he is still able to pass more stool without difficulty.

Thank you for your prayers. Today Jason and I both felt a very calming peace. It was such a wonderful feeling to have that, especially compared to yesterday. Praise God for his peace that surpasses all understanding...

Something's happening...

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As of 6:00 this morning, Matthew did have a small stool, but not enough for the doctor's to be impressed. If he were to have had some kind of meconium plug they would have expected more to have come out than what actually did. Once again, they are perplexed. The nurse thought it looked like the meconeum that came out but I want to confirm this with the doctor. I tried to speak with the doctor but they were doing their rounds and I was told they wouldn't be able to speak to me for a few hours because they will also be doing surgery for another baby.

They nurse also mentioned that he had another x-ray at 8:00 a.m. and that he is doing well and is stable. Only the doctors are able to see the results of the x-rays, not the nurses, so I don't know how it went. Unfortunately, that is all I know for now. I will keep you posted as soon as I hear anything.

About the same...


Matthew was about the same today. He had a special kind of enema done late in the evening called a gastrograffin enema. By 9:00 in the evening, the x-rays showed that the contrast they used went further into his small intestine passed the area that is blocked. So what does this all mean? Well, the doctor on duty last night was seeing Matthew for the first time. She is a doctor that also moonlights at Stanford. She said that when she first saw Matthew she immediately thought NEC. But the other doctors said that he never had the NEC infection. According to the x-rays he could have the meconeum ileum or he could have a micro colon or he could have had some kind of infection in his belly before which could have caused some damage in the intestines, preventing passing of stool. So this means that we still don't know what is going on, and Cystic Fibrosis (CF) is still high on their list, but they still have to rule out other possibilities. If Matthew does not pass any stool in the night then we need to talk about other options, possibly surgery to see what the problem is. I didn't know what to think or say when she said that if he did have CF that it might actually be one of the better outcomes for him. If you don't know, CF is a really nasty disease that is deadly and you can potentially lead a really horrible life, depending on the type of mutation of that gene you inherited. Apparently, there are hundreds of mutations of CF, and they may never catch it with the genetic testing. So we may not know for sure until he is older and they can perform the sweat test on him. They say people with CF usually only live to be in their 30's, maybe 40's. I can't fathom what that would be like, wondering if each day that your child is with you, if it is his last, or knowing that he may never go to college or get married...I get numb just thinking about it.

As far as respiratory goes, he is still having periods of apnea (not breathing). They say this is to be expected of a preemie, and especially since he is so plugged up, the digestive system is now pushing up on the diaphragm making it more difficult to breath. It is very hard to see your child stop breathing and then start again.

Jason and I are emotionally spent today. We both feel like zombies and I don't think we can take in any more information about Matthew. To explain how we feel is simply unexplainable. I am not sure what to pray for other than a miracle that he does not have CF and that whatever is going on in his intestines is easily fixed without complications. The odds are certainly against us, but I know God is bigger than odds and numbers. I personally feel like my faith is being ripped apart and I am being tested beyond belief. When we prayed tonight I was not able to say a word other than cry out sobbing and begging for God's mercy and grace on Matthew and us...I have never felt more like Job and Abraham than I do now...I thought the earlier days of this were bad, but it just seems it has been more intense these past few days.

Thank you all for the notes and bible versus you have encouraged us with. When our faith is being tested, it is a good reminder to hear about God's faithfulness.

More unknowns...

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Well, today was an interesting day of unknowns and new tests and more waiting. Matthew was not digesting his breastmilk today so they took an ultrasound and x-ray of his belly to see what was happening especially since he was not having any bowel movements. They discovered that he was not passing any stool because he has some meconium stuck in his small intestines. This is called meconium ilieum. His stool was so dense that it even showed up on the x-ray, which it normally wouldn't. They also noticed that his lower intestines (the colon) was very tiny which means that nothing had ever been in it. The suppositories and enemas were not working. So tomorrow they are going to do an ultrasound while performing an enema so they can basically go all the way up into the small intestines and to try and break it up. If that doesn't work after a couple of tries then they are going to have to perform surgery to remove the meconium.

Matthew has also been having a lot of thick secretions in his lungs and he is having more episodes of periodic apnea (not breathing). His oxygen saturation has also been a bit more unstable. The episodes of apnea they say are common in premies but they are concerned with the secretions they keep getting from his lungs.

One of the things the doctor said today was that there are several things that are pointing them into thinking that Matthew may have a genetic disorder called cystic fibrosis. Specifically because of the meconeum ileum and the secretions in the lungs, the liver issue, etc. They have sent off some blood work to test for this but we won't know results for a while.

They did an ultrasound on the brain at the same time they did the abdominal ultrasound today. The abnormality in the brain has changed shape. The doctor's think this could be a good thing because it looks like it may be breaking up and will eventually dissipate. They will continue to monitor it by doing ultrasounds over the next few weeks.

Prayer requests: Pray that the enema in the small intestines works so they don't have to do surgery.
Pray that Matthew does not have cystic fibrosis.
Pray that his lungs mature and that he produces the right amount of secretions and that he keeps breathing.
Continue to pray that the brain abnormality goes away completely.
Continue to pray that Matthew does not get the NEC infection.
Of course continue to pray for us as we go through this. Today I am very worried and I feel like I am kind of numb. Please pray for us to have God's peace and to not be worried and anxious about everything we just found out today. Thank you for all your support.

Boy in the Bubble

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Matthew was moved into an isolette this afternoon. He has been on a table until this point because he needed to be watched so closely and because the doctors and nurses might have to jump in at a moment's notice to deal with a problem. Now that he's stabilized, the isolette provides him a quieter environment in which to grow. The isolette provides a temperature controlled environment for him until he's got a layer of baby fat and can regulate his body temperature himself. Once he's about 1900g, they'll move him to a bassinet until he's ready to go home.

When they upped him to 9ml every 3 hours, they were finding residual breast milk during subsequent feedings. They cut him back to 8ml every 3 hours for most of the day; but since he still hasn't had a bowel movement on his own yet, they actually stopped his feedings this evening. They've given him an enema and a suppository (his fourth actually) to try and relieve his constipation.

And Again...


Matthew didn't have any residual food in his stomach all day, so they're increasing his food levels again. Over the next three feedings, they're stepping Matthew up to 9 ml every 3 hours. That will be over 50% of his total fluid intake (currently 5.6ml/h).

Jenn got to hold Matthew again tonight. He slept most of the time and didn't need as much additional oxygen as last night, which means he's getting more used to being held. Since they went up on the feeding, I didn't get to hold him tonight, but hopefully I can tomorrow.

We spoke with the nurse that was removed as his primary night nurse. She was very understanding and said that she would have done the same thing if Matthew were her child. She apologized for being so flippant. Though she won't be his primary again, it's possible she may take care of him at some point as Matthew moves from a 2 to 1 baby to a 3 to 1 or 4 to 1.

And the Feedings Increase...

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Overnight, they increased Matthew's feedings to 7 ml every 4 hours. This morning, they increased them again to 6 ml every 3 hours. During the last couple of feedings, they've found a small amount of residual food from the previous feeding (0.5 ml or so), so they've probably found the right level for him for now. He also grew a little from yesterday to 1020 grams (approximately 2 lbs 4 ounces) Reminder... he was born at 1 pound 11 oz. We haven't been down to see him today, but the nurse said he's still pretty stable. We're looking forward to holding him again tonight.

We got to hold him!!!

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I have been shedding many tears these past few weeks and I must admit that it has been a long time since I have cried tears of joy. But tonight was one of them!! After I pumped and came back into Matthew's room, I noticed Jason had a very cute boyish grin on his face like he was up to something...little did I know, he was about to hold Matthew. The night nurse felt that Matthew was stable enough to be held for a very brief period of time, so she allowed us to hold him. Jason held him first and I got to feed him through the tube while Jason was holding him. Matthew squirmed at first but quickly settled down. He managed to open his eyes to look at daddy several times. It was so cute to see father and son bonding together. Then I finally got to hold Matthew and because I was so excited I could only cry wonderful tears of joy! :) Matthew settled right in and fell asleep. His oxygen saturation even got so high that we had to turn down the amount of oxygen we were giving him.

You could tell that he really liked to be held and that he enjoyed being wrapped up tightly like a burrito because once we had to put him back in his bed and unwrap him to adjust all the wires and leads, he started to get very agitated and began to cry.

I am so thankful that we got the opportunity to hold him tonight. It was a joyous ending to an anxiety filled day.

Please keep praying for the abnormality to go away, and the liver to start functioning properly so that the direct bilirubin levels will come back down. Of course, continue to pray that he never develops the NEC infection and that he continues to tolerate the feedings.

Thank you all for your comments and prayers. Matthew really needs a miracle!


Good news and scary news

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The good news today is that Matthew has tolerated the increase in his feedings so they are going to go up again on the amount of breastmilk they are feeding him every four hours. He is even tolerating a decrease in his pressures on the ventilator today.

The scary news is that they are seeing some kind of abnormal growth or fluid in his brain. They don't know if it is an abscess or if it's a cyst or if it is build up of Cerebrospinal fluid (CSF). They do know that it is not blood. They don't know if it was blood and now it is going away and it is just the residual fluid from that. It was NOT on previous scans and they have NEVER seen this before in a preemie baby. The Director of the NICU, the Pediatric Radiologist, and the Neurosurgeon from Stanford have never seen this before and they don't know what is causing it. However, they have seen something like this in very young children but only after they have had neurosurgery and they have seen this in adults but only after trauma to the head. It is located in a space called the subdural fissure. Which means it is located between the right and left hemispheres of the brain (in the fissure) and it is between the skull and the brain (the subdural area). He is not stable enough to take him down to do an MRI, so they are going to continue to monitor him on the ultrasounds for now. They are doing a spinal tap today to see if there might be an infection in the CSF, but they don't think there'll be one. They don't feel too concerned right now because fortunately his brain is still growing and the skull is still soft, so if it continues to get larger, the brain can work around it and there won't be a lot of pressure build up because the skull has a lot of flexibility right now. If it continues to grow, they will have to do surgery on his brain to see what is causing this and if they can remove it.

The other thing they have not seen before is the issue with his liver. His bilirubin levels keep climbing daily in spite of the medication they are giving him. However, everything else about his liver tests have come back fine. Once again they are stumped. The specialist was in today running more tests on the liver, so hopefully we'll know more this afternoon about this.

Prayer requests: PRAY, PRAY, PRAY LIKE YOU'VE NEVER PRAYED BEFORE! If you've never prayed before, I beg you to start now. Please pray that this abnormality in the brain goes away completely and never comes back! Please pray that his bilirubin levels come back down to normal and stay that way. Praise God for the good news about the feeding and his respiratory status. Please pray for us to have a peace of mind about the entire situation that is before us.

Thank you all so much for your prayers.

Still Doing Well

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Matthew has had several feedings today, and all have gone very well. He had his first feeding at noon today, and at 1:35, they checked for residual and found none. If he's still doing this well tomorrow, they will probably increase his feeding to 5ml every 4 hours or 4ml every 3 hours.

As of yesterday, Matthew is no longer a 1 on 1 baby. Up until this time, he's had his own nurse 24/7. Now that he's more stable, his nurse will be taking care of him and one other baby.

Matthew officially crossed the 1kg mark today. That's up nearly 33% from his birth weight in less than 4 weeks (They told us early on that babies this young often take 4 weeks just to reach their birth weights again).

Still Stable...


Matthew is still doing pretty well today. They did have to go up a tiny bit on his pressures on the ventilator today because he couldn't keep his CO2 levels down. This was to be expected...but the doctor did say that all the breaths he is taking on the ventilator are his own and they are only providing enough pressure to keep his lungs open.

So far he has tolerated all the feedings in the last 24 hours, so they have increased the amount of breastmilk they are feeding him from 2ml to 4ml every four hours. If he does well, they will continue to go up on his feedings.

The only concerning thing that occurred today was the results of the brain scan. The doctors saw something a bit abnormal today and they aren't sure if it's a bad thing or not. They are going to go over the previous brain scans and this current one with a fine tooth comb and will give us the official results in a day or two.

Please pray for the following things: 1) That the abnormality they are seeing is nothing and that the bleed is on its way to going away completely. 2) That he never gets the NEC infection and that the feedings continue to go well. 3) For his lungs to get stronger everyday and to not collapse. 4) That the bilirubin levels gets back to normal and that his liver starts to function properly (the big liver test is tomorrow).

Stable and doing well...


As of 10:00 tonight, Matthew has had 3 feedings, all of which looked like they went fairly smooth. Yeah!!

He is doing really well on the conventional ventilator and he has even tolerated a decrease in the pressures. The chest x-ray showed that there is less cloudiness, which indicates that there is more air present and moving in his lungs. This was very encouraging to hear. His oxygen and carbon dioxide levels have been stable for most of the day. The ultrasound for the head was ordered today but it won't happen until tomorrow morning.

They have even moved him onto his tummy and he seems to really like that position (don't try this with young babies at home unless you have the monitors like they do). We have only seen him on his back for the last 25 days so it was shocking for us to see him on his stomach...literally. His head was covered and so were his legs when we got to his bedside...so the first thing we noticed was that his arms looked like they were on backwards...I know I know, but if you saw what we did you would have thought the same thing, then we suddenly realized he was on his tummy and relaxed. :) (well, ya know, the PT was working with his muscles earlier...ha ha)

Praise God for such a great day!! Please keep praying that the feedings will continue to go smoothly without complications, especially to the digestive system. Please pray that Matthew NEVER gets the NEC infection. Pray that his lungs will continue to grow and not collapse again (some areas of the lungs had been doing this) and to have the right amount of gas exchange, airflow and fluid throughout his lungs. Please continue to pray that the bleed in the brain does not get larger and that it goes away completely through the natural reabsorption of the blood in the ventricles. Please keep praying that the high bilirubin levels will come back to normal and that there are no complications with his liver.

Thank you again for your support and prayers!

Some good news...

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Last night about 10:30 I received a call from the doctor saying that they had to put him back on the ventilator again because he was too tired to continue on CPAP. The good news is that they only had to put him on the conventional ventilator. He never went back on the JET ventilator. YEAH!! As of this morning, he was doing fairly well on the conventional ventilator and his blood gases looked good, so they were able to decrease the pressures. So far he is doing well and has tolerated the decrease in pressures. According to his nurse the doctor's think they will check him again after several days of recuperating to see if he can go back on CPAP.

Since nothing has grown on any of the cultures, they have discontinued the antibiotics today. They have another liver test scheduled for Friday to see what is going on there with regards to the bilirubin levels. They are even thinking about starting him on breastmilk again, probably sometime this afternoon.
They also did another head ultrasound and chest x-ray. The results have not come back as of yet, but we'll keep you posted.

A physical therapist (PT) came by for the first time and worked with him today. I tried to find out what exactly they did to him but the nurse was away when the PT was there. I do know that they were working with his muscles looking for muscle tone, proper movement, etc. Since he has been on his back most of the time that he's been in the hospital and his arms and legs don't have the ability to move like he would if he was in utero, they need to work with him to make sure he can still move his muscles properly. The nurse did say that the PT told her he began tolerating the touch after awhile, so I am hoping that we will be able to start touching him more without causing him agitation. What a wonderful feeling it will be to finally touch our baby, knowing that it may actually calm or sooth him rather than irritate or harm him. Just think how incredible it will be when we can hold him, smell him, touch him, feed him, kiss on his cute little fingers and toes...sorry getting carried away in that thought. :)

I have not been down to see the little guy yet today, but I will keep you posted when I find out more.

Thank you again for all your prayers, comments and support. We love you all so very much!
J,J & M

First the good news...Since Matthew is starting to grow, the tube that has been inside of his trachea (aka: endotracheal tube) has become too small for him so they needed to put in a larger one. But instead of doing that right away, they decided to try him out on the CPAP once again. (For review about CPAP see the entry on June 27th) He was put on CPAP at 1:00 pm and at 7:30 pm he was still on it and he seemed to be doing fairly well. The chest x-ray in the afternoon came back showing that the lungs were not as collapsed as they were in the morning when he was on the ventilators. They have him on about 60% oxygen and even though things look good now, they tell us not to be surprised if he gets too tired to continue breathing on his own and ends up back on the ventilators by tomorrow. We've been here before and know that every hour or day off the ventilators is better for his lungs in the long run and it's another step forward.

The bad news is that the feeding didn't go well at all. Absolutely none of my breastmilk that they fed him moved through his digestive system. As a matter of fact they even saw some blood when they were checking the "residual" stuff in his stomach. The blood could be due to some irritation of the feeding tube in his stomach or it could be due to stomach ulcers. They are currently giving him some Zantac via the IV to help take care of this problem. So for now the feedings have been discontinued until further notice.
In addition to this, the blood work for Matthew came back a little unusual this morning so they started him on antibiotics again. They are thinking there may be another bacterial infection, but are unsure what kind it can be. They really can't figure out what is going on because some of the results show there are signs of infection and some of the results show that there are no signs of infection. There is nothing growing in any of the cultures they have done for either the bacteria or the fungus, (although growth can take several days or even up to a week to grow) but they are giving him antibiotics for today and will do more blood work in the morning to see if it is working. He is on two antibiotics and unfortunately one of them is called Vancomycin, which is generally used as an absolute last resort to kill off any bacteria. If he ever becomes resistant to Vancomycin, this can become a huge problem down the road, so pray that he doesn't become resistant and that he doesn't need to be on it very long.

Now for the unknown...Well, the little guy just can't seem to get rid of the bilirubin levels in his blood. For more information about bilirubin levels and the side effects of it being to high, click here. The director of the NICU was assigned to Matthew today and he has called in a specialist to come and take a look at what is going on because all the doctors are stumped. The doctors just can't figure out what is going on. It appears that none of the test results they are getting makes sense with the kinds of levels they are seeing with him. The ultrasounds and x-rays don't show any abnormalities with his liver, but there are some diseases that can be causing this problem. Please pray that a solution to this bilirubin mystery can be found and that there aren't any serious complication or side effects to this.

His First Feeding!

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Matthew had his first feeding today at around 6 p.m. They gave him 2cc of Jenn's breast milk, and he will receive 2cc every 6 hours as long as he responds well. Basically, at each feeding, they pull out the entire contents of his stomach through the feeding tube to see what's going on in there. As long as the contents aren't green or bloody, they push them back in and add 2 additional ml. They're on high alert for NEC, and if there are any signs that something is wrong, they'll stop the feedings.

They took Matthew off the Jet today for about 40 minutes, but he wasn't doing well on the regular ventilator so they had to put him back on the Jet. They also upped the breathing rate from 300 to 360 breaths per minute for about 4 hours and then dropped him back to 300. His pCO2 levels have stabilized, but now his O2 sat is jumping around. They haven't been as quick to change his O2 levels on the vent when he desats as he usually recovers pretty quickly on his own.

The Lasix appears to have worked. He's urinating much better and he looks quite a bit less puffy. The chest x-rays today showed a little less fluid in the lungs too. They haven't weighed him in a couple of days, so we don't know exactly how much excess fluid he's got right now.

Here we go again...

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Today was not a good day for Matthew. His respiratory status has been pretty unstable. He had to go back up on the pressures on both ventilators and they also had to increase the percentage of oxygen he's receiving. His oxygen saturation has been labile. One minute it is up high and the next minute it is down low. The chest x-ray showed that there has been an increase in the amount of fluid in his lungs. Fortunately, it is only in the lungs and there are no signs of fluid in the pleural spaces. As usual, he is not tolerating any noise or touch at all. In addition to the lung problems, he is starting to retain fluid again and he has a decreased urine output. He looks really puffy and they started giving him Lasix again which will help with the fluid retention. To top it all off, when they drew blood on him today they saw something a bit abnormal, so to be sure there's something wrong they are running more tests. They are not certain but the doctors think there could be a chance he might have a fungal infection now. Since he has been on antibiotics for 17 of the 22 days he's been in the hospital, there's a good chance he could have it. But the doctor last night didn't seem to think he would, but to be safe they are running tests. Unfortunately, it may take a few days for the test results to come back, so we wait...again.

Not Much Change

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Matthew is three weeks old today. That seems like a short time when you think about it, but it seems like forever ago that this all started. We really appreciate all of the support and comments we're receiving. It's nice to know that so many people are following along with his progress.

Matthew is about the same today as the past day or two. His blood gases have been pretty stable other than when he's touched too much or when there is too much noise around him. The doctors have had to increase the pressure on the ventilators a bit because they couldn't get his pCO2 levels down. His O2 sat is great though on nearly room air (~25-30% O2). His belly is down a little more today, probably because he's still urinating quite well. They weighed him last night and he weighed 960g. They don't expect him to really be above his birth weight until he's around four weeks old, so this is probably still high due to fluid retention.

They were considering giving his some breast milk this morning, but they were unable to hear any bowel sounds (which would indicate his bowels are not ready to start processing food), so they've decided to hold off for a bit. They may try tomorrow morning, but it doesn't seem likely. The doctors are being extremely cautious with this because there is the risk that he can develop Necrotizing Enterocolitis (NEC). This is a very serious condition, and the fact that he's had a belly infection already increases his odds that he will develop NEC.

Hooray, it was a good day!

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The little guy just never ceases to amaze me! Today was a good day for Matthew. They stopped giving him the Dopamine and Dobutamine so the only medication he is getting now is the Morphine and Ativan for pain control and sedation so he doesn't fight the ventilators. He is still getting the Nystatin for prevention of the thrush. He is still receiving nutrition through his IV, but they are hoping they will be able to start him on breastmilk sometime this weekend. The color in his belly was actually pink in some areas and the gray color has subsided dramatically, but it is still there. Unfortunately, his belly was still swollen, but he is still urinating so hopefully it will go down a lot more in the next few days. His settings remain the same on both ventilators, and his oxygen and carbon dioxide levels appear to be stable until he is moved, or touched or hears loud sounds. He seems to be extra sensitive to sounds, touch and movement today; but once he settles down, he seems to do pretty well.

Thank God for such a good day today! I feel like it has been awhile since we have had one, but I'll take every good day we get whenever we get one!! :)

About the same

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Matthew is doing about the same as yesterday. His belly is still looking pretty swollen from the fluid retention, officially called ascites (sounds like a-sigh-tease). Earlier in the day his belly seemed to have gone down, but then it slowly went back up by the evening. Just for shock value, the amount of fluid that they withdrew from Matthew's belly area yesterday (60 ml) would be equivalent to withdrawing about 3 liters out of an adult. Just to give you a perspective, we have approximately 5-6 liters of blood in our adult bodies. So you can see they withdrew a lot of fluid for his size. They did not withdraw any fluid today but they are watching it closely in case he needs to have it done. Fortunately, he is still urinating which is a good sign that his kidneys are working and that he is slowly getting rid of the excess fluid by himself.

His blood pressure and oxygen and carbon dioxide levels have been stable for the most part. His pressures on the ventilator have been about the same. They have tried to come down a bit more on the pressure on the Jet Ventilator, but he is not able to get rid of his CO2, so they keep him where he is at which is considered to be low settings for the Jet. He still does not like loud noises, does not like to be touched and he really hates to be moved, so when these things occur his levels become unstable for a bit but then they return to an acceptable level after he settles back down.

They are slowly coming down on the amount of Dopamine and Dobutamine levels they are giving him for his blood pressure. It is their hope that once they take him off of these medications, he will be able to maintain his own blood pressure. They are daily taking blood samples to measure his blood gases and his electrolyte levels so they can make the necessary adjustments for him.

Everything is basically the same as before and the only new thing is that they are giving him Nystatin, which is an antifungal agent to help prevent him from getting Thrush, which is an infection of the mouth or throat.

Words of Encouragement:

In my daily devotional that I get from K-Love, today's entry was very encouraging for me, and I wanted to share it with all of you, hoping it will do the same...

"So Mary and Martha sent someone to tell Jesus, 'Lord, the one you love is sick.'" John 11:3 NCV

Where do our prayers go?

Someone went to Jesus on behalf of Lazarus, and because they went, Jesus responded. The healing wouldn't unfold for several days, but the timer was set when the appeal was made. Ever wonder where your prayers go when they leave your lips? Listen: "There was silence in heaven...and...Another angel came and stood at the altar, holding a golden pan...with the prayers of all God's people. The angel put this offering...before the throne. The smoke...went up...to God with the prayers of God's people" (Rev 8:1-4 NCV) Why was there silence in heaven? Because someone was praying! Heaven pauses to hear the prayers of someone like you! Listen: "The prayers of all God's...people...went up...to God." Awesome! Your words don't stop until they reach the heart of God!

But notice, the friend who went to Jesus on behalf of Lazarus said, "Lord the one YOU love is sick." He didn't base his appeal on the imperfect love of the one in need, but on the perfect love of the Savior. He didn't say, "The one who loves You is sick." No, he said, "The one YOU love is sick." That is different! The power of prayer doesn't depend on the virtue of the one who prays, but on the unchanging love of the One who hears. Aren't you glad? You may be deeply flawed; you may not understand the mystery of prayer, but this much is clear: action begins in heaven, when someone on earth prays.

Once again, we can't thank all of you enough for your prayers and support, for your wonderful comments and the meals (which are great on the days we are exhausted). It gives us comfort knowing that all of you are out there praying for our little baby and for us. May God bless each and every one of you!

Love, Jason, Jenn and Matthew

Some Setbacks, but Stable

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Matthew's conditioned worsened a little over night. They had to go back up on the Jet ventilator settings to levels above where they were before the surgery. Fluid is continuing to collect in his belly, and his urine levels have dropped significantly. They used a needle to withdraw about 60ml of fluid from his belly, which relieved some of the pressure on his lungs. This helped with his respiration, allowing them to come back down on the ventilator settings.

He's still receiving Dopamine for his blood pressure, but they've also started giving him Dobutamine to help maintain it.

In the afternoon, his urine level started increasing again which is a great sign. They've increased his fluid levels to provide him with more nutrition. His blood gas numbers improved dramatically during the day, allowing them to reduce the ventilator settings as well as reduce the oxygen level in the air he is breathing. By 9 p.m., he was on almost the lowest settings on the Jet and was breathing room air. Though he's been on room air from time to time in the past, he was never on it for very long as the nurses were always chasing his blood gas levels with the ventilator settings.

Successful Surgery

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Matthew's surgery was a complete success. It went very smoothly, and there are already signs of improvement. The whole procedure took about an hour from prep to cleanup, but the actual surgery only took about 15 minutes. They made an incision under his left arm about 1 cm long. They spread his ribs (which are quite flexible in a baby this young) and went around behind his left lung. They put a small metal clip around his PDA to pinch it closed. Fortunately, there were no surprises. In fact, the doctors didn't see one drop of blood during the procedure (internally I assume).

After the surgery, the doctors noticed an immediate improvement with his pCO2 (partial pressure of carbon dioxide). It had been in the 40s to 50s most of the time (with occasional excursions above 100), but after the surgery they had a hard time getting it above the 30s (basically his body was doing too good of a job getting rid of CO2). They don't want his O2 or CO2 levels too high or too low since either can cause problems. They came down on his ventilator pressures and breathing rates to help with this.

Although things look great now, it will be a few days before we know if there are any complications. There are no common complications, but there are a number of things that can occur in a small percentage of cases.

We got a chance to measure him tonight. He's grown a bit since birth. He's now 13 2/3" long.

Preparing for Surgury

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The PDA surgery is scheduled for tomorrow. While it's scary to know your child is going into surgery, I'm relieved that it's finally happening. Once his PDA is closed, a lot of things should start to improve. His blood oxygenation should improve significantly, which will allow them to start feeding him breast milk. Once he starts feeding, he should gain weight much more rapidly. Once he starts gaining weight, he should have the muscular ability to breathe on his own. Once he's breathing on his own, his lungs and throat should improve since they won't have the ever-present irritation of the intubation tube. Once his lungs and throat improve, he'll be able to cry. Once he's crying, he can start talking. Once he starts talking, he can go to school. Once he goes to school, he can get into college. Once he graduates from college, he can go to medical school. Once he graduates from medical school, he can earn enough money to pay us back for all this...:-)

Matthew is looking about the same as yesterday which is good. His white blood cell count is a little high still, so they're going to keep him on antibiotics through the surgery. That's probably a good thing anyway since it can lessen the likelyhood that he'll develop an infection from the surgery. The surgury is scheduled for the late afternoon, so we probably won't have an update on the site until late tomorrow night.

Definite Improvement

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Matthew definitely looks better today. They gave him Dopamine last night to increase his blood pressure, and it's made a noticeable improvement. The increased blood pressure helped reduce the discoloration around his eyes and belly, as well as helped reduce his fluid retention so he doesn't look as puffy as he did yesterday.

He's also much more active again today. This is probably largely due to his infection subsiding; but whatever the reason, it's good to see him so active again. He's moving his arms and legs quite a bit, and he even opened his eyes a couple of times.

Praise God!

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God is sooooo good and faithful!!! For the last few days I feel like I have been on a wild faith ride and I have been questioning and asking God why did this happen to me, to Matthew and to us as a couple. I can't understand why I couldn't carry the baby to term and how I never really got to enjoy so many fun parts of being pregnant...I have so many questions with no real answers.

I have had many nights of sobbing and often times I picture myself either at Jesus's feet or being held in his arms crying uncontrollably and just asking why. He holds me close and I know he feels my pain and hears my prayers. The one answer that I am still getting consistently is that God is in control and to lean on Him during this difficult time and to trust Him. This of course is easier said then done, so recently I've been asking God for some encouraging news or signs that everything is going to be okay. He was so faithful to answer me in many ways. First of all, not only is Matthew doing better, but I also heard an encouraging song on K-Love Radio and the words were about how God loves you and that things are going to change. I had heard that song a hundred times before and I even sang along with it, but this time the words went right into my heart and I was comforted knowing that God really heard my prayers. Then at church today I heard an extremely encouraging story about a man who has survived some impossible medical conditions. According to this man, he should be dead right now, but he has survived. Recently he was hospitalized again and the doctor's told him he wouldn't be out of the hospital for a long time but with the miraculous power of prayer he was able to go home within a couple of weeks and he is doing great! After hearing his story, I remembered thinking, Wow, God must really have a plan for this man's life and then I instantly thought of Matthew and thought God has a plan for his life too. Since he is 15 days old today, his chance of survival has increased from 50% to about 75%. This is not to say that he is out of the woods and won't have future problems, but it is encouraging to know that I am more likely to bring my baby home. Then to top it all off, the nurse that I wanted to have removed from Matthew's case, has been removed permanently and there is a new nurse taking care of him on night shift. The charge nurse has not confirmed this with us yet, but I will keep you posted. So far we have not had to meet with the nurse who has been removed and I hope we don't have to, but I was praying that God could have her removed without confrontation and that is what He did. I was told earlier that they normally don't remove the primary nurse, but it seems that this is what they have done in this case. Jason and I have met the new nurse and we really like her and my instinct is telling me she is the right person to take care of him.

So please keep praying for Matthew, for the doctors, nurses, respiratory therapists and so many other medical staff that are taking care of him and of course for us as we continue through this difficult process. Your prayers are felt and they are seen as well. God answers us in ways that are surprising and sometimes not what we expect, but if we keep our hearts and minds open we can see the work of His hand everywhere! Thank you all so much. We couldn't be doing this without you!

Slow Progress

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Matthew looked about the same today, but the nurses said he looked better to them. They did have to put him back on the Jet, but they've come down a bit on the breathing rate (though they did have to go up a bit on the pressure). He's still extremely sensitive to sound and touch; you can really see how it affects him when he's touched too much or when people are talking too loudly.

The doctors and nurses are still confident that he'll be well enough for the PDA surgery on tuesday. We've been told several times that once the PDA valve has been closed, we should see much more dramatic improvement.

We didn't go down last night to meet with the night nurse because Jenn wasn't emotionally ready to deal with her. Jenn's much more relaxed though, knowing she isn't taking care of Matthew.

More information

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The UAC (Umbilical Artery Catheter), which measures the blood gases such as the partial pressure of Carbon Dioxide and oxygen, began to malfunction; so they had to remove it. They were unsuccessful in getting another one inserted so they hooked Matthew up to a different kind of system that still measures his Carbon Dioxide and Oxygen levels but it's not inserted into any of his blood vessels. It's not as accurate as the other line, but it is pretty close.

His color looked a bit off again today and his blood pressure was down. The last time this happened they ended up giving him two blood transfusions. They are running more tests to determine if that will be necessary. In the meantime, they started to administer Dopamine, which is a medication designed to help increase his blood pressure. He is also starting to retain more fluid again, and with the amount of fluid that he has retained so far, it sort of gave us a glimpse of what Matthew will be like when he has grown into his skin more and has more of his baby fat. Not that I want him to be retaining fluid, but it was cute to see the baby fat look. He was a tiny bit more active today.

It is still hard to be on this emotional roller coaster; especially knowing we have many more months of this to come. I know it was unrealistic to think this, but I guess I expected Matthew to recover a bit faster than he is. The little guy is pretty sick so it is going to take awhile to recover from all that has happened to him. The honeymoon phase is over and we are now getting down to business and entering the more realistic road to recovery.

Please keep praying for God to help little Matthew and for His help in Guiding the doctors and nurses that interact with him. Please keep praying for our strength to get through each day and night. Thank you again to all of you for your prayers!

About the same

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We spent quite a bit of time down at the hospital this afternoon. His carbon dioxide and oxygen levels are still sporadic. They have been adjusting his numbers all day on both of the ventilators and have had to suction his airway and mouth quite a bit. They have temporarily taken him off the Jet ventilator to see if he will tolerate just being on the traditional ventilator. When we were there, his carbon dioxide levels kept rising, so they thought they might have to put him back on the Jet Vent.

His color still looks good and his blood pressure and heart rate seem to be stable. His belly is still very discolored, but it doesn't look as dark as before. He wasn't very active again today, but he does keep moving his legs once in awhile. According to Jason and the doctor, he has been able to move his ears too (just like his mommy).

We have our meeting later tonight with the night shift nurse; so keep praying for God's wisdom and discernment for this meeting.

Better and Worse

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When we visited this afternoon, Matthew was looking much better (better than he's looked in a long time). His color has improved dramatically and he's becoming a bit more active, but not quite like he used to be. It appears the antibiotics are taking effect.

When we visited late in the evening, his blood gas numbers were all out of range and moving rapidly. One of the respiration therapists came and suctioned out his mouth and throat. The doctors also ordered another chest x-ray to determine the position of the breathing tube as well as examine the state of his lungs. The x-ray confirmed that the breathing tube was in the right position, but his lungs are still quite immature.

Some improvement

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It was encouraging to know that Matthew had a much better day today than the last couple of days. He is far from being where he needs to be but it was good to see him looking a bit healthier. Matthew is responding well to the second blood transfusion that he received. His color is very pink today compared to the ash-like color he was before. His belly is still black/blue in color and it does not seem any bigger today. In fact it actually looks like it has decreased a tiny bit. The edema is no longer moving up into the chest cavity and you are able to see his rib cage again. He is urinating a lot, which means the Lasix medication is working and he is not retaining as much fluid as before. He is moving around more today and they even have him on an IV drip of medication to keep him slightly sedated so he doesn't fight the ventilator. His pressure on the ventilator is the same as yesterday and unfortunately his oxygen and carbon dioxide levels are still very unstable. The chest x-rays today are also showing that he may be developing chronic lung disease. He is still on antibiotics and will be until Monday. They are tentatively looking at this Tuesday coming up to perform the surgery to close the PDA, providing he is stable enough.

Please pray that he is so stable on Monday that they feel very comfortable performing the surgery. Please pray for healing in his lungs as well as the infection he is fighting and also for the bleed in the brain to not increase. Keep praying for healing of all the unknown health problems that may come up down the road. The nurse who was mentioned before is temporarily not working with Matthew but she wants to meet with us on Friday to try and work some things out. Please pray that all goes smoothly and that God gives us the right words to say to her and that the situation gets resolved peacefully.

The test results with regards to testing the placenta and the amniotic sac have also come back and everything looks normal, so it appears that we may never know why this happened. My blood work came back normal too except that my white blood cell count was high. I don't know if there is any significance to that or not but I hope to find out more from my doctor later.

Thank you again for all your prayers, support and comments!!


Jason, Jenn and Matthew

Still Critical

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Respiratory - Matthew is still critical today. They had to turn up the pressure on the Jet ventilator (which is not a good sign) to help get rid of the elevated carbon dioxide levels in the blood. Whenever they turn up the pressure on the Jet, this means that they are having to do more of the breathing for him as opposed to him doing more of the breathing on his own.

Heart - Since Matthew is so unstable at this time, the doctor's have postponed the surgery to close the PDA until sometime next week. The surgery would add a lot of stress to his body and right now he doesn't tolerate any stresses at all. Matthew was given a blood transfusion yesterday, which he didn't really respond well to so they had to give him another blood transfusion again today. Because he is so ill, his arteries are starting to leak, which now means that his blood pressure is dropping and his heart rate is increasing to try and pump more blood to his body. They hope that with the second blood transfusion, that this will help to stabilize his blood pressure and heart rate.

Brain - Since Matthew's condition has become worse so rapidly, the doctor's were concerned that the bleed in his brain has increased, so they took another ultrasound of his brain. Officially it was stated that it went to a grade 3 bleed, but the doctor showed me the ultrasound results and he and his colleague think that the official report is an overstatement and they actually believe it is still a grade 2 brain bleed. They will continue to monitor the bleed in his brain, especially given his current condition.

New developments - His blood sugar levels were extremely elevated today. They measured him at 588. Acceptable levels are between 80 and 130. So they put him on an insulin drip to bring down his sugar levels. By 1:30 in the morning, they were able to take him off the drip and his sugar levels seem to have become stabilized.

They had to decrease the amount of fluids they were giving him because he is starting to retain fluid. They are even giving him Lasix which is a medication used to help decrease the amount of fluid that is being retained.

His belly is still very black and blue and now he has pitting edema, which means that whenever you touch his skin (like you are poking him) it leaves a depression in his belly. The bruising color and edema (swelling of the tissues due to excessive fluid) is slowly progressing upwards next to his chest cavity, which is also making it more difficult for him to breathe.

He is still on the antibiotics and looks like he will be for the next 7 days. In addition to all this, I've had to file a formal complaint on one of the nurses who is taking care of Matthew. I have requested that she be removed from caring for him. Please pray that God removes her from this case without a lot of complications or animosity between her and us.

Emotionally today I feel very raw and vulnerable. I feel like my endurance, patience and faith are really being tested today. I feel like I don't have the strength to make it through the day but that is when I know God is carrying me and the only set of footprints that can be seen are His. Normally I am the type of person who trys to control or "handle" things on my own, but today I can't do that and that is where God really wants me to be, not "handling" it so He can! I didn't even realize how much I really need to have Jason here with me, so he is taking an earlier flight back tonight and will be home by 1:00 in the morning. This experience is drawing us so much closer together and he has been such an amazing support for me and so loving through this whole traumatic time. I don't wish this kind of pain on anybody, but if God can use this situation for His glory then I pray that He can use us to reach out to others through this.
Thank you again to everybody for all your prayers and support even from those we don't know. It is encouraging to know that there are people who feel led to pray for Matthew and us even though they don't know who we are. May God bless each and every one of you today and always!!!

About this Archive

This page is an archive of entries from July 2003 listed from newest to oldest.

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