August 2003 Archives

Matthew had his eye appointment yesterday and the doctor said that he is still getting worse. His right eye is worse than his left. In his right eye it is considered a stage 3 and when it gets to a stage 3+ then they will perform emergency eye surgery. The doctor said he was surprised that it wasn't there yet. He said not to worry because there is nothing they can do at this point until he reaches the 3+ stage. He did say that it was almost inevitable at this point that he will need the surgery. The doctor also mentioned that even if his eyes did get better rather than worse, he will probably have scarring in his eyes which will result in severe nearsightedness, like a minus ten. This means that Matthew may have a difficult time seeing clearly a foot or so in front of him. He will continue to have eye problems throughout his life as well. Unfortunately, the scarring could also cause damage to the retina later in life and that will have to be monitored regularly to make sure that the retina does not detach, due to the scarring, and cause him to go blind.

He was weighed again last night and is now up to 1704 grams or 3 3/4 pounds. He is starting to retain fluid so some of that weight gain could be part of the fluid retention. The doctors say that he is retaining fluid primarily due to his chronic lung disease and they are giving him lasix again to help his body get rid of the extra fluid. If he continues to gain weight like this he'll be up to four pounds easily by next week. Yeah!

They also increased his feeds again yesterday and he is now getting 34 ml's of breastmilk every 3 hours. So far he seems to be tolerating it and is still pooping and urinating on his own without help.

On Wednesday, they performed a procedure called a hide-a-scan. This is where they injected dye into his system and then they viewed it with a machine to see where the dye is going. The main purpose of this was to see what is going on with his liver, gall bladder and bowels. Since he is still having liver problems they want to make sure his liver has all the necessary components it needs to function properly. I am still waiting for the results. The results may be here by this afternoon, but I won't hold my breath. The next time they draw blood will be on Sunday for more testing. I'll try to find out what they are going to test him for and then let you know when we have the results.

For now, continue to pray for a miracle for his eyes to heal completely and without scarring. Continue to pray for his strength especially in going through all these tests. Please pray that he continues to grow and develop normally and without lasting effects. Pray for us to not start worrying and thinking the worse again, which is very easy to do when these tests are being done on him. Thank you for your prayers and support and the great comments. Even though we may not respond to them, we really do appreciate receiving them. Thanks again.

Okay, much to my surprise today, Matthew came off of CPAP around 1:00 or so and went on the nasal canula. Then he was doing so well that they took him off of it and just left him on room air. It was amazing he was doing so well too. He would occasionally drop his oxygen saturation and by about 8:00 pm they had to put him back on the nasal canula because he was starting to work pretty hard. He may end up back on CPAP later tonight, but it was really exciting to see how well he was doing without it.

They are going to be running a bunch of tests over the next couple of weeks to try and get some final answers to the problems he has had in the past and is still having. They want to know what the cause was or is and try to fix them before he goes home. Please pray that all the tests come back normal and that everything is just do to being premature and that there are no lasting side effects of being premature. Please also pray for his eye appointment on Thursday. Since his eyes got worse so quickly, they are concerned that they may be on their way to the other stages that can eventually lead to being blind. If his eyes are worse on Thursday, they could potentially perform laser surgery on his eyes that night. Please pray that his eyes are not getting worse and are actually getting better. (the doctor says this can happen)

We will keep you posted about the news.

P.S. I absolutely loved giving the little stinker his first bath. He kept sliding all over the place and I couldn't stop laughing but I finally got the hang of how to hold on to him and rub him down. :) I can't wait to do more!

Matthew's still doing great... He's eating and pooping with the best of them. He's up to 32ml every three hours now, which is still slightly lower than the ideal (160ml/kg/day). The nurses have told us that once he was on full feeds, they could move above that point (he was at 180ml/kg/day the last time he was on full feeds), so we're hoping they'll be increasing his feeds soon.

The CPAP is really starting to give Matthew a little pig nose (you can see it in the first picture yesterday pretty clearly), so we're trying to get them to switch him to another type of CPAP called Mask CPAP that has a little mask that fits over his nose. Hopefully it will take some of the pressure off of his nose and allow it to return to its normal shape.

Now that Matthew's doing so well, we're going to reduce the website updates to every couple of days. If there is any important news, we'll get it on the site right away.

Stinky Boy got his first bath today. 9 weeks of stank finally got washed off of the little guy, and he smells great. The nurse showed Jenn how to hold and wash Matthew, then Jenn gave him the bath. He really enjoyed his bath too. He was very alert and relaxed the whole time. After his bath, he got some clean clothes and I got to hold him for an hour or so while he ate and slept.

He's continuing to grow. He got to help weigh him tonight, and he put on another 20g since thursday. He's now up to 1616g (3lb 9oz).

    

Matthew is continuing to grow (though somewhat slowly this week). He was up to 1596g (a little over 3lb 8oz) as of thursday night.

Matthew's eye exam results have come back. Although we haven't talked to the doctors yet, they did say that his left eye only shows a mild change, but his right eye shows a moderate change. We don't know yet whether a moderate change is something to be concerned about or not.

Matthew's been on CPAP for over a week now. He's still desating occasionally, but generally keeping his O2 sat in the high 90s. Up until now, the doctors wanted to keep his O2 levels between 88-94%. Now that they know his eyes are having a little trouble, they want to keep him on higher levels of oxygen (94%+).

The little guy had another eye exam today, which always wears him out so much. It is hard to see him like that. The test results weren't available when I was there, but I hope to hear something tonight or tomorrow.

He is now on complete feedings for him (30 ml's every 3 hours) and so far he seems to be doing well. Although they just put him on full feeds this afternoon. He is also pooping a lot without the help of suppositories or enemas, which is a good sign.

His direct bilirubin levels did go back up again. This seems to be the thing that happens whenever he is on the IV nutrition. So they are giving him a new medication in the breastmilk that helps bind up the direct bilirubin and then he excretes it in his stool.

They are thinking about running more tests on him to determine the cause of the abnormality that he had in the brain. I can't remember if we told you that it turned out to be a blood clot in a very unusual place in the brain. So, I 've been tested for the blood clot disorder and we are still waiting to hear the results of them. Personally, I am really sick of hearing about more tests being done on him and don't want to know about any more tests being performed unless something is completely wrong.

I have been working on Matthew's room lately and am getting really excited about him coming home some day!! I will sit in his room and daydream about holding him, feeding him, playing with him, teaching him, etc. It's nice to know that this is more of a reality now!! :)

Today Matthew went back into the isolette because he is not maintaining his body temperature so well. I was surprised to see that he was in an open crib anyway because at one point they said that they usually don't take babies out of the isolette until they are about 1900 grams (a little over 4 pounds). Since he is only 3 pounds 7 ounces, that would explain why he is not maintaining his body temperature so well, but they at least gave it a whirl to see if he could. Personally, I am glad to see him back in the isolette because they are really busy again and just had several new babies that came into the room which are pretty loud... so being in the isolette will help him sleep better (less noise) and of course sleep is what he needs in order to grow.

They have taken him off the IV nutrition and fat supplement all together, but they are still giving him his medications intravenously. They hope to give him his meds by the mouth again once he is back up to full feeds completely and tolerating it pretty well.

He is still on CPAP!! Yeah!!! We are pretty excited about that and not to mention he has only needed about 22 - 23% oxygen. Woo hoo!!! :)

Please continue to pray for Matthew's progress to go up and up from here on out. Please pray that he tolerates all the feeds and that he never gets the NEC infection. Please pray that he doesn't get any more infections. Please also pray for us for strength. I am not feeling well these days and I am getting burned out on being at the hospital every day...not that I don't want to see my sweetie, I am just getting tired.

Matthew's really starting to get his baby fat. They haven't weighed him yet tonight, but he's clearly continuing to gain weight. He was up to 20ml of breastmilk every 3 hours earlier today, and continuing to poop and pee regularly. They've taken him off his IV nutrition (although he's still receiving extra fat via an IV). As long as he continues to tolerate his feedings, they'll be stopping the IVs completely sometime tomorrow.

Matthew is still doing great. He's on room air virtually all the time, and rarely desats anymore. He's been stooling a fair amount lately, and they're continuing to increase his feeds (14ml as of the last feed).

He's up to 1550g (3lb 6oz), which is exactly double his birthweight. By the way, if you haven't used Google's calculator before, you should really check it out; it's very cool. Go to www.google.com and search for 1550 grams in ounces or 1 foot in lightseconds.

Matthew made it past the 48 hour mark today (60 hours as of this entry), and is doing great. He's on room air most of the time, and hasn't had any significant desats. I got to hold him tonight for about half an hour, and he just loved it. He was so zonked out that he didn't even wake up when I put him back in his bed.

Matthew continues to gain weight. He was up to 1520g (3lb 5oz). They also increased his feeds to 6ml every 3 hours, and the plan is to increase it 1ml every 12 hours. His primary night nurse Madhu thinks this is a little conservative though, so she's going to ask the doctors if his feeds can be increased more rapidly.

Matthew was moved out of the isolet today and into a rocker bed. This bed slides forward and backward while rocking from side to side. It also makes noises that are designed to simulate the sounds that a baby would hear if it were in the womb.

Matthew is still on CPAP today. He's been on 32 hours as of this writing, well on his way to the 48 hour mark that the doctors were hoping for. He's doing so great on it that it's almost a certainty that he'll be staying on it for a while. When I stopped by earlier today, he had been on room air (21% O2) for most of the day.

Jenn got to do skin to skin this afternoon for about 45 minutes. Matthew did extremely well. He was on approximately 25% O2 while she was holding him and his heart rate, respiration rate, O2 sat, and pCO2 were all basically perfect.

Breathing: Matthew was extubated today around noon. He's back on CPAP and so far doing well. The doctors said that the first 48 hours is really critical. If babies make it past that point, it's generally smooth sailing. In case you haven't memorized this entire site, here's a quick recap on his breathing history. He's been on a ventilator virtually 100% of the time since he was born about 8 weeks ago. He's spent about half the time on a conventional ventilator, and the other half of the time on a high frequency ventilator. He's been on CPAP twice during that time, but only lasted 9 hours the first time and only 5 hours the second time. He's quite a big bigger now than he was then, so we're hopeful that the third time's the charm. He definitely doesn't seem to be working as hard this time as he has been, so it's certainly a possibility.

Eating: Surprisingly, they also resumed his feeding today. They've started him at 5ml every 3 hours, but will probably quickly ramp him back up to full feeds as long as he doesn't show any negative signs. They told us before that full feeds for a preemie is 160ml/kg/day, but before they stopped the feeds the last time, he was being fed more like 180ml/kg/day. Given his current weight (as of two nights ago), that would be more like 32ml every 3 hours.

Crying: Now that Matthew's been extubated, you can hear his little vocal chords. He can't get much volume yet, but at least he doesn't look like a mime crying anymore.

Matthew is up to 1410g (3lb 1.5oz). Since he's growing so much and his infection is almost gone, they're currently planning on resuming his feedings tomorrow after the doctors make their rounds. They will start at a reduced level and then increase them until he's back to full feeds. They're also planning on extubating him this weekend.

Matthew continues to be about the same. His CRP levels continue to fall, so they're talking about resuming his feedings on friday and extubating him on saturday or sunday. They took his skin temperature probe off today since he's doing a good job at maintaining his body temperature. They usually don't do that until the babies reach 1500g (he's only 1360g or about 3lbs). This means we'll finally get to start putting some clothes on him.

They've started giving him a steroid inhaler to help alleviate swelling in his lungs. This should help his transition off of the ventilator.

We got one of the first insurance statements today for Matthew's stay in the hospital. For 7/6 through 7/20 (2 weeks), Matthew's bill was just shy of $250,000. The cost of his care will certainly go down during his stay (as the required amount of care, medication, surgery, etc. go down), but it's almost certainly going to top $1MM.

Matthew's still doing about the same. His blood tests indicated elevated CRP levels, so they are continuing the antibiotics. He's lost a bit of weight now that he's back on IV nutrition; he's down to 1304g (2lb 13.5oz). He's had fewer bradycardia episodes today, and his oxygen requirements have been lower. They may try to start his feedings back up later in the week (even while he's on antibiotics) if he continues to look stable.

Matthew's doing about the same today. He's still up and down on his oxygen, and he's still having apneic episodes. They've upped the breathing rate on the ventilator to 20 breaths per minute to help him stay oxygenated. His feedings are still on hold until they know what's going on with his digestive system. They sent off blood for some labwork and have started him on antibiotics again. If the labwork comes back negative for an infection, they'll stop the antibiotics; but if it comes back positive, they'll have a jump on treating it.

Matthew had another setback today. He started having residual on his feeds, and increasing Bradycardia episodes. He was also having tachypnic episodes (rapid breathing rate) where his breathing rate jumped to over 100 breaths per minute. Needless to say, they didn't extubate him this morning.

They ran some tests on his stool recently and found evidence of internal bleeding. His residual hasn't had any blood in it, so the blood is likely coming from his intestines. His residual today was green however which indicates that his intestines are backing up, causing bile from his small intestines to get pushed back into his stomach. They've temporarily suspended his feedings until they can figure out what's going on. Unfortunately, all of these things are symptoms of NEC. They haven't determined conclusively if he has NEC (these could all be unrelated symptoms), but they're certainly concerned about it.

Okay, you won't believe this...Matthew is now 1390 grams (3 lbs, 1/2 oz). He had no residuals on all of his 28 ml feeds, so they bumped him up to 30 ml's every 3 hours as of 3:00 today. 30 ml's is equivalent to an ounce or 6 teaspoons every 3 hours. He is now pooping at every diaper change again. Yeah!!

He is still on the ventilator today, but they are talking about extubating him in the morning and trying him on CPAP again. Yeah!!! Pray that he does well and is able to be on CPAP without getting tired. He is no longer getting the mucomist to thin his secretions but they still need to suction him frequently because of the secretions. He will still continue to get his albuterol treatments for a while.

Jason and I should be able to hold him later tonight since he is not as stressed as he was yesterday after his eye exam. He needed to really rest and relax after the exam. Apparently these exams are pretty hard on the little guys and it always stresses them out and they need to be left alone.

Please keep praying for his brain abnormality to go away, for him to keep tolerating the increase in his feeds and for him to keep pooping without getting the NEC infection. Pray that he does not get the Retinopathy of Prematurity (ROP) and that his vision gets better not worse. Please also pray that the extubation goes well tomorrow and that he has the strength to stay on CPAP without having to go back on the ventilator.

From the bottom of our hearts, we thank you all so very much for your prayers and support. I don't think we can thank you enough for everything you have done for us.

Matthew had his eye appointment with the doctor today. Premature babies often get something called Retinopathy of Prematurity (ROP). This is where the blood vessels in the retina can develop abnormally and actually grow away from the retina into the center of the eye. This can cause vision loss and can even cause blindness in severe cases. They rate the development of ROP by specifying the stage and zone. Stage 0 is no abnormality, stages 1-2 are minor (usually no vision loss), and stages 3-5 are serious and can result in severe vision loss. Zone 1 is the center of the visual field, zone 2 is the transitional region between the center of your visual field and your peripheral vision, and zone 3 is your peripheral vision. Matthew had stage 1 development in zone 2, so this is great news. The doctors were actually surprised at how little retinal damage he had. Though it can still get worse (they will be repeating the test occasionally through the end of October), it likely means he will have normal vision.

He went up on his feedings again today. He is now getting 28 ml’s every 3 hours. So far he has had a little bit of residual, but it looks like he is tolerating it pretty well. He's weighing in at 1340 grams (2lbs, 15oz). He'll probably pass the 3lb mark this weekend.

In addition to the previous prayer requests, please pray that his vision doesn't get worse.

Thanks so much for the comments that all of you have left. Sorry we haven't had time to respond to each of them. It means a lot to us that all of you are going through this with us.

Matthew had his blood transfusion today, which took about 6.5 hours to complete. It is amazing to see how much better his skin tone looks now that he's had the transfusion. Jason got to hold him for a little bit tonight, but because Matthew had so many things happen to him today, it was only for a small amount of time.

His direct bilirubin levels are still coming down. His current level is 4, which is down from 6 last week.

They are now wanting Matthew to start gaining an ounce a day. Even though he is gaining weight really well on my breastmilk, they want to speed it up by giving him a fat supplement mixed in with my milk. Hopefully after he has gained more weight, he will be able to tolerate going on CPAP and get off the vent.

There are so many changes that we have seen in Matthew over the last few days, it is absolutely amazing. You can start to see his very tiny eyelashes and his fingernails are starting to get longer too. He even graduated to a larger diaper, which is a bit big on him, but it looks much better than the other one he was wearing. After looking at these pictures, you should scroll down to the beginning of these journal entries to see what Matthew used to look like. WOW!! He almost looks like a different baby now!! Yeah! Praise God!! Remember, you can click on the photos to make them larger or to scroll through all the pictures with the titles and captions on them.

        

Matthew's feedings have increased once again today. They are now giving him 26 ml's every 3 hours. He is currently weighing 2 lbs. 12 oz. and he is really starting to look like a little chubby baby (well at least compared to before)

He was moved to a new home today. He is now in room number 2 instead of 1. This means that he is more stable and is no longer the sickest or smallest baby in the NICU. Yeah!! They had a recent admission of 3 babies. Two 26 week old twins and one 23 week old baby. I look at those babies and then Matthew and it brings back memories of what he looked like not to long ago. It is amazing to see how far God has brought him. I know God has performed so many miracles with him and I am so very thankful for every one of them.

I got to hold the little one today for almost two hours!!! It was so exciting. When I would softly sing to him or hum a tune, his oxygen saturation improved. I am starting to figure out the little things that make him stressed and the things that seem to make him calm. It also feels good knowing that Matthew is tolerating it much better when we touch him.

They have gone up on the feedings for Matthew again! Can you believe it? He is now getting 25 ml's every 3 hours with the supplemental calcium and phosphorus in it. It appears that he is tolerating it fairly well. He is still pooping but he doesn't poop at every diaper change. I don't know if that is normal or not, but as soon as I heard it hasn't been every diaper, my first thought was, "what's happening with his bowels." I began to wonder if something was going wrong again.

He still goes up and down on his oxygen levels. The secretions in his lungs are thinner due to a new medication they are giving him called mucomist along with his albuterol treatments. He is still on the ventilator and they are talking about putting him on CPAP by the end of the week.

New developments: Since Matthew was so premature, his body is having a difficult time making red blood cells. They are thinking about giving him a blood transfusion in the next few days to help with this and they are giving him additional iron as well to help with his anemia. (Babies usually absorb a lot of iron in the third trimester and since he didn't get that chance, they have to give it to him directly). In addition, they are giving him Epoetin, which is a man-made form of a naturally occurring protein called erythropoietin. Erythropoietin is produced in the kidney and stimulates the production of red blood cells.

Jason got to do his first skin to skin or Kangaroo care with Matthew tonight. Judging by the huge grin on Jason's face, I would say he was pretty happy doing it. Matthew was enjoying it too. He was fast asleep and there were a couple of times where it looked like Matthew had a smile on his face...I tried to get a photo of it, but no luck...maybe another time.

Please pray that his body is able to start producing red blood cells on a regular basis.
Keep praying that he tolerates the increase in his feeds with the additional supplement and that he continues to have bowel movements and NEVER gets the NEC infection.
Keep praying for his lungs to be getting stronger and for him to remember to breathe.
Keep praying for the abnormality in the brain to go away completely and for his direct bilirubin levels to come back down to normal.
Praise God for bringing Matthew this far in his development, and continue to pray that he carries him through all this as he heals and strengthens his little body.

Today Matthew was a very busy little wiggle worm. In fact, there was one point where he was laying on his stomach with his head positioned on his left side. He picked up his head and turned it over to the right side and managed to squeeze his breathing tube. They had to quickly fix him and the tubing so he was back to normal. I was pretty shocked when I saw that. The nurse tells me that he tends to get really restless like that when it is time to eat. (This is a new development for him to have a time schedule) He was also awake a lot today and keeping his eyes open for long periods of time. I loved looking at his beautiful steel blue eyes...I wonder what color they will be when he gets older.

He is still pooping...YEAH!! As a matter of fact, he was wide awake when I changed his diaper today and I think he wanted to have fun with me because he decided to pee and poop all over me when I was changing him....that little stinker...(no pun intended) :)

Today they have officially discontinued the antibiotics for his lung infection and they are no longer giving him the aminophylline via the IV. The aminophylline was a medication used to help him to breathe better and to help him remember to breathe to prevent periods of apnea (not breathing). They are now going to be giving him theophylline, which is like aminophylline except that it is given orally via the feeding tube into the stomach. So for the first time ever, our baby will not have an IV line hooked up into his arm, hand, leg or foot!!! YEAH!!! He's got to love that; I know I do.

Apparently they will no longer be monitoring his carbon dioxide levels either. It seems that when he gets to be a certain weight the leads of the monitors for measuring CO2 don't correlate well with the blood gases, so they are no longer using them. He is still up and down on the oxygen, but I hope that will change as he gets bigger and stronger and hopefully when he is also on CPAP. He is back up to 2 lbs 10 oz. as of last night.

Keep praying that he tolerates the feeds with the additional supplement and that he continues to have bowel movements and NEVER gets the NEC infection.
Keep praying for his lungs to be getting stronger and for him to remember to breathe.
Keep praying for the abnormality in the brain to go away completely and for his direct bilirubin levels to come back down to normal.
Praise God for all the miraculous things he has done with Matthew so far and for letting us get to do the kangaroo care sooner than we thought.

Thank you very much for all your prayers for Matthew and including Jason and me in them even if we don't list a specific prayer request for us.

Matthew was doing really well again today. They increased his feeds to 24 ml's every 3 hours (which is considered to be his full feeds) so they have disconnected all the nutrition they were giving him intraveneously. They did start giving him the calcium and phosphorous supplement in my breastmilk that they feed him. A lot of babies usually don't do well with the added supplement mixed in, but he seems to be tolerating it so far. He is still pooping today!! Yeah! The lab results for the bloody stool are still pending. He is weighing in at 2 lbs 9 oz. He lost about an ounce from all the pooping.

He is still on the ventilator but they did say that if he extubates himself then they are going to put him on CPAP. He is getting so much stronger that he is starting to lift his head from lying on the side to almost being straight in the middle with his nose down. (I hope that makes sense) If he keeps doing that, he may actually pull his own breathing tube out.

I got to do the Kangaroo care again today! Yesterday I held him for almost 45 minutes, but today I got to hold him for an hour. I only wish Jason was here to see this and experience it too. The nurses said that several times he would open his eyes and look up at me, but it was hard for me to see him. (That would have been a Kodak moment) Again, he tolerated being held extremely well and actually he did a bit better than yesterday, except near the end of the session. His body temperature got so hot (100.4) from me holding him that his heart rate shot up into the 200's. After we put him back in the isolette, his heart rate started to go back down along with his temperature.

Please continue to pray that the abnormality in the brain goes away and never comes back. Pray that he tolerates the feedings especially now that it has the added supplements. Continue to pray that he never gets the NEC infection. Pray that he continues to gain weight and grow stronger and that his organs start to work properly and mature, especially the liver. Pray that his lungs will continue to get stronger so when they put him on CPAP this week he can tolerate it.

Today was the best day ever!!! I got to do what they call "Kangaroo care" with Matthew for the first time (which wasn't expected for another few weeks). I was so excited I was bouncing off the walls waiting to do it. Kangaroo care is also known as skin to skin. This all means that I got to old Matthew directly on my chest, having his skin touch mine. Before he had to be bundled up and I was fully clothed, but now I wear my shirt unbuttoned and he lays directly on me. I had to meet with the Physical Therapist to go over a lot of information about how to hold him, what the different stages of alertness there are, how to recognize when he is stressed, etc etc. It was the most incredible feeling in the world to hold my baby on my chest and to smell him. His ear was near my heart so he could hear my heart beat, while he kept suckling on the tube and sticking his tongue out (this is the suckling response he needs to establish before I can start breastfeeding). The entire time I was holding him, he was tolerating it extremely well. He was only on 29% oxygen and his saturation levels were between 92 and 97%. His breathing was regular and his heart rate remained stable. I was telling the nurses that it felt like heaven (or at least as close as I could get to it) :)

Today they bumped up Matthew's feeds to 21 ml's every 3 hours. So far, he has been tolerating it really well. He has even had poops on a regular basis too! They did find a couple of his stools to have blood in them so they ran them off for testing. They are thinking that it might be irritation from all the pooping and from all the enemas he's had, but they need to run tests to make sure its not anything else.

They did another ultrasound of the head today. It looks like the abnormality is slowly resolving. The radiologist really thinks it was a blood clot and that it is going away. The big questions that still remain are about how he got the clot in that part of the brain and will it happen again and why did it happen in the first place. They are going to continue to monitor it and run more tests on his blood for clotting diseases, etc.

He is still on the ventilator and doing well. They are still suctioning him and getting quite a bit of secretions. However, they aren't as thick or yellow as before.