One Year Old!

Wow, it is hard to believe on June 26th Peyton turned one year! Peyton had an awsome party with lots of family and freinds. Water activies and pony rides were the big hit. Here is a picture that we had taken for his one year old pictures.

An update on Peyton's health. He seems to be doing really well and out growing a lot of problems that they thought were just related to prematurity. He still has acid reflux issues and throws up a lot but they also thought this just needed time, they said hopefully by 18 months he should out grow this too. Peyton saw the developmental doctor about two weeks ago and is a little behind on his montor skills but still think is okay. However, his speech does seem to be more significantly behind. We are just waiting and working with Peyton ourselves to see if it comes around. Peyton is still small for his age. He weights 20 pounds and 12 oz. and is about 27 inches. This puts him at about the 5% for his age on the growth chart. One of the problems is because Peyton will only eat certain foods and textures, he has a little bit of a texture issue and also still is not taking a sippy cup. We are working with the occupational therapist to hopefully resolve these issues, he also see the early childhood speacialist twice a month as well to stay on top of things.

Thank you for the continued prayers. As you can tell they have definitly worked, Peyton has comes so farr with so few problems now. Sorry I have not keep up the blog very well but those of you who have children know that once they start crawling and getting into everything it definitly becomes a full time job. I will try to at least every other month post a picture and tell you of his success. Again thank you for the thoughts and prayers. As I am able to I will post more pictures from his birthday of the cake and such.

Good News!!!!!

Well, Peyton was 7 months old on January 26. Hard to believe it has already been that long and they he has already made it so farr. He seems to be doing very well these days, is happy and smilling a lot.

The news everyone has been waiting for, Peyton's rickets has now resolve itself in the xrays, so his bones seem to be in good shape now. Also, the excessive calcium in his urine has also seem to resolve itself, therefore there is not as much concern about his kidneys getting hurt. Lastley, even more good news we just found out, the Dent's disease DNA test we were waiting on was also negative, yah! It seems as though the NICU doctors and everything you hear about premies is correct, they just have to grow out of it. We all know though that this was definitly a miracle from God, just as his Peyton's life is. He still seems to be having acid reflux issues, and throwing up often. The G.I. doctor also said since Peyton was a preemie that this would take longer than normally born babies to grow out of, about 15 months of age he thinks. We can definitly deal with this as long as the medicine seems to work and not make him hurt during these episodes.
Peyton has come a long way. Two weeks ago when he was weighted last, he weighted 14 pounds 3 ounces and was 24 & 1/2 inches long. He still is not on the growth chart for his age but he is definitly catching up. Peyton can now roll from his stomach to his back both ways by himself and can roll from his back to his stomach with a small amount of help. He can also sit up pretty well just sometimes seems to fall over. He stands up in our laps very well, and we are not sure if he might walk before he crawls!

Peyton is getting dedicated at church tomorrow and we all know his life belong to God! Thank you all for the many prayers, they are blessing and definitly have helped. Please continue to pray for Peyton as he continues to grow and become stronger internally as well as externally. We will continue to up date you guys as we learn anything more. We love ya'll!

Merry Christmas!

Hello Everyone-

Sorry it has been so long again since we have updated you guys. First, we hope everyone had a Merry Christmas and Happy New Year! Here are our Christmas pictures.....

Once again we have been to several doctors since the last update. First, the good news he saw the Cardiologist and the doctor does not think he has a hole in his heart. He thinks that was just something due to him being born prematurely and has cleared him until his second birthday and at that point will do another ecocardiogram to verify it is closed and then release him for good. We also saw the genetisist and endocrinologist again trying to look into the rickets more. Peyton is not deficint in vitamin D nor in Calcium therefore not consistent with rickets. He is however excreting a lot of calcium in his urine and they are affriad that eventually this could cause an issue with his Kidneys. With this in mind they have now tested him for Dents disease, which is a DNA test and we have to wait about 8 weeks to get the results back and it has now been about 4 weeks. This would explain the rickets in the bones and the calcium in the urine. They said it was like the bones telling the kidneys to get ride of a lot of the calcium. There is also another possiblity called Janson's but there is not a test for it. With either one of these there is not an exact cure, however they did say they would be able to possibly put him on medication to help from damaging the kidneys. The genetics doctor he is seeing, Dr. Lee at Texas Children's is head of the department there and over the research department as well, seems to really be good. He did not want to go into anymore detail about either disease until we got test back. As soon as we hear something there and figure out what's going on we will let you know.

Also last week Peyton went for his 6 month check up and shots. He now weights 13 pounds 9 ounces and is 23 and 1/2 inches long. The doctor said he was growing very well but still had a lot of catch up to do. Peyton is holding his head up very well and sitting up with a little assistants, he has started rolling over and smiles and laughs all the time. He is still continuing to recieve the RSV sentigen injections every month.

Thanks for all the prayers and support, please continue to keep him in your prayers and pray the doctors are wrong and the rickets issue is just due to his prematurity and he will get through this stage. We will definitly keep you updated as we get information. Again thanks and we love ya'll.

No Results

Sorry it has been so long since the last update. We have been going to lots of doctor appointments and just buisy with it being holiday season.

Since the last update we have seen a a few doctors. First, Peyton was able to finally be circumsized. Let me be the first to tell you, if you don't have it done at the hospital when they are still too young to know what's going on it is horrible. He was perfectly fine when we got him back then about 2 minutes later there was a horrifying look and he screamed like to other scream. Since then when he wakes up he gets really scared if he does not see someone he recognizes. Things did go well though. Also the genetist did not find anything wrong with Peyton genetically, praise God. However, they did see some spots on his Renal Ultrasound indicating possible kidney stones, so they referred him to the renal specialist. Two weeks ago now, we saw the renal specialist and he confired they were NOT kidney stones, merley calcium spots that should go away over time. The doctors thought maybe Peyton's calcium extrection in his urine was a possible reason to his having rickets. The doctor does not have the full results back on Peyton yet but says there is not a renal issues contriubuting to his rickets. So he is sending us back to the Endocrinologist. Hopefully one day we will have the answer to why he has rickets and what can be done to correct it. They all just keep saying they think it might just be prematurity and if that's the case it should correct itself over time. Let's hope for that. In the next two weeks Peyton will see the Endocrin, the Genetisist and the Cardiologist since they thought they may have seen on the NICU a small hole in his heart but Peyton was too small to really be able to tell. He did get his second RSV/sentigen injection last week as well. We will keep you updated as we get results.

Peyton is now 5 months old as of yesterday and we thank GOD for his growth and giving him to us for 5 months! Thank you all for the continued prayers, we love ya'll.

Happy Halloween!

As you could guess this is Peyton's first Halloween. No he couldn't go trick or treating for the risk of catching something and getting sick. So we took Peyton to his grandparents houses and trick or treated. We thought we would share our cute little pumpkin with you.

Happy 4 Months!

October 26th Peyton turned 4 months old! Yes, I know it is very hard to believe, it seems just like yesterday he was in the hopsital. Praise God he has now been home for 2 months!

On his birthday he saw the Pediatric surgeon whom confirmed it is now time for Peyton to be circumsized. If the doctor waits much longer then they will have to use anestisia and he wants to just use a local since we don't know everything that is going on with Peyton right now. So he is set to have surgery this coming Wednesday, November 4th. Please pray that everything goes well and he has know complications as this is considered a surgery now since he is 4 months old. Some of you may be wondering why it has not been done yet, when he was in the NICU they checked Peyton and said he was too swollen to be able to safly do it. Apparently Peyton still is a little swollen so there is a small risk he will bleed and need stitches but obviously there is a greater risk to wait and then have to put him under anestitia. Again please pray for Peyton during this.

Also this past Monday we saw the Pediatrician for his 4 month check-up. He now weights 9lbs and 13oz. and is 21 and 1/2 inches long, he is definitly growing as you can see from the pictures. He was such a happy baby, cooing and playing until they gave him his shots. He cried and then went to sleep.

As if we weren't having enough fun with doctors and hsopitals Patrick, Peyton's dad broke his nose and had to have surgery this past Wednesday. Everything went well and his nose seems to be healing just fine. Please keep him too in your prayers as he is still in a lot of pain and constantly has a headache.

This past Thursday Peyton saw the genetistics. The doctor was very thorogh into Peyton's background going all the way back to his greatgrandparents. No we do not have any anwsers yet, however he did send Peyton for a renal ultrasound looking for possible kidney stones, as well as blood work, urninalysis, and about 20 more xrays looking into the rickets more. The doctor hoped he would have all the results back this next week and maybe some answers to what is going on.

Please continue to pray for Peyton and that hopefully there is nothing wrong and they are just being over cautious since what he has come through. Again thank you for your prayers and we will keep you updated as we hope to get results and as Peyton has he surgery. We love ya'll!

Doctors appointments

Well we have been to several doctors appointments since last update. Peyton is doing very well for where he came from 3 and a half months ago.

About 3 weeks ago now we went to have xrays taken to show how his rickets was doing. It showed his rickets was very active and the pediatrician referred us to an Endocrinologist. We saw the Endocrinologist about a week ago now and she did confirm his rickets and showed me nodguels on his bones and where his joints could not absorb the calcium. The doctor put him on a new medication called calcitrol to try and get more vitamin D and Calcium in him. I did ask her if the damage was already done and she said if there was no other underlying problems then hopefully we could get this reversed. She had us go get blood work and a urine specimin done that day at Texas Children's where she is and they were great with him. We do not have the results yet however she did refer us to a genetic specialist to make sure there was nothing possible in his background that would cause rickets. We are not able to get into him until December. We will update will update you when this happens. The doctor did mention that it was possible that the TPN fluids he recieved in the NICU could cause the rickets as well however, we can not be upset with this as they were doing there job as saving his life.

Last Wednesday we saw an Early Childhood Intervention worker and Physical Therapist to evaluate Peyton's developmental progress. Things went very well, he almost scored out of the program. They are allowed to correct for him being premature up tp 2 months. He scored between a 2 and 3 month old developmentally, yea! He is less than 3 % weight and height even for a 2 month old, so needless to say he is still very small for his age but that's expected however they did say he was porportionate. The only reason he qualified for this program is because of his rickets and the possibility of needing help with that.

Yesterday we went for a recheck to the pulmonologist and everything checked out very well. Peyton finally gets to get rid of his heart and apnea monitor that he has been having to wear. We will finally get to move about our house like a normal baby not attached to anything! This is a major praise.

Next week we go to the pediatrician for his 4 month check-up, yes that's right 4 months thank you God! Also we will be seeing the pedi-surgreon as well to see if it's possible to get him circumsized yet.

Thank you for all your prayers and please continue to pray for him and us. God has done a mighty work in this little boy and on our hearts!

Newest Pictures and Update

These pictures were taken when Mimi Hickman (Pat's Mom) was taking care of him on his 3 month birthday. He is doing good just having some issues with acid reflux and throwing up once or twice a day. Today was his first day without getting Caffeine, Potassium, and Diuril. The Caffeine was used to help make him remember to breathe, the Diuril was to make sure no excess fluid built up around his lungs, and the Potassium was to offset the losses from the Diuril. He ahd his X-rays to check for Rickets today at TCH but no results from that yet. Just wanted to give everyone an update and post new pictures. Have a safe week and God bless.

Patrick

Latest Update

Wow, how our life has changed since he has come home! We do not get a lot of sleep between giving him a bottle every 3 hours and giving him his 7 medications that range anywhere from giving it 30 minutes before bottles, some twice daily and even one mixed in every bottle. However, we would much rather have him at home to finally try to be a family at last.

Friday Peyton went to the pediatrician and he now weighs 6 lbs. 10 oz. and is 19 inches long, yay for his growth. He had a good check up and th dr. said he wanted to see Peyton back at 4 months of age which if you can believe it or not is only a little over a month away.

Yesterday, Monday, we went to the Pulmonologist for the first time. He was great, he spend almost an hour answering questions we had as well as giving us a lot of knowledge about what to expect. Peyton again checked out very well! They decreased one of his medications to every other day and the medications that went in his bottle cut it to half the dose he was getting. We are supposed to do these for a week and then discontinue them on Sunday evening. Once we got home the doctor called back and said they had had a chance to read his heart monitor download and that he had only had one apnea episode and it was 2 days after we brought him home so he has been doing really well. Because of this they are also allowing us to discontinue his caffeine he was getting every morning to help him remember to breath on Sunday evening as well. They said that when we get rid of the caffeine his acid reflux should get a littler better, thank goodness as it seems to really hurt him. Finally we are getting to get rid of 3 of his medications, only 4 more to go.

Peyton has made great strides and as you can tell he is getting bigger which helps out as well as they tell us he will grow out of a lot of his problems with age and weight. On Saturday, September 26th he will be 3 months old, he was supposed to be due this Friday, September 25th! Next week we will be going to Texas Children's to get x-rays done of his wrist to see how his rickets is, which is what tells us how fragile his bones are. Please continue to pray for him to grow and get stronger!

Aubrey Fleming, Alaina's younger sister whom originally started this blog for Peyton is having a c-section on Friday, Sept. 25th at the Women's Hospital of Texas. Please pray for her, the baby and the doctors that everything goes well as we are sure it will. With this in mind Alaina, Pat and Peyton will be going to see her this weekend. If any of Peyton's nurses from the NICU read this blog and will be there anytime from Friday to Monday please let us know by commenting to the post as we would love to bring Peyton to come see you guys.

Thank ya'll so much for the prayers and support! Please continue to pray for him as he still has some hurdles to go through and we will keep ya'll updated of his progress. Also please pray for the Fleming family and God Bless!

Update

Peyton now weighs 5lbs 15oz and is 17 5/8" long.

He had his first check up yesterday and he seemed to enjoy the car ride this time. The dr. said that he is doing very well. He is in the <5% for his age but he should grow and catch up by 1-2 years of age.

He is pretty much just sleeping and eating all day long just as he was in the hospital. Although yesterday he did stay awake from 4:30pm to 8:15pm. He also figured out that it was fun to pull his mommy's hair yesterday so that was fun to see that he is grabbing at things. Peyton did have a good night sleep but he was upset after his 11pm feeding and took awhile to fall asleep.

We want to thank everyone for their prayers and please continue to do so. Ask that God continue to watch over him and give him the strength to grow stronger everyday.

God bless,

Patrick

Homecoming

Peyton's blood work came back with good results. His blood is regenerating itself and his calcium and phosphorus levels are back in normal range. During his car seat study he got a little upset but finally calmed down and was able to hold his respiration and heart rate levels.

He got to come home last night about 7pm and we are so thankful. His first car ride was not his favorite, he seemed to think we were on a roller coaster or something. But we made it and he seems to be doing very well. He did mange to set off his monitor a couple of times but they were just false alarms do to his leads coming loose. He did have a little trouble eating last night but he figured it out about 2am this morning.

Sorry this post seems so scattered but we did not get much sleep last night. We just want to thank everyone who kept him in their prayers. God obviously has big plans for him and he is proof of the power of prayer.

Thank you and God bless. We will continue to update the blog so everyone can keep track of his progress.

Patrick

Weekend Updates

Peyton now weighs 5lbs 6.2oz.

He had a sleep study yesterday and all indications are that it went very well. We are still awaiting official results from that and should get them back in the next 24 hours. He did well throughout the weekend and seems to be very happy as long as he gets fed when he wants to.

He will have some blood work done today to determine if his blood is regenerating itself, if his Calcium and Phosphorus is normal, and to see if the rest of his electrolytes are in the normal range. Please pray that everything goes well with this because this could be the determining factor on whether he comes home in the next few days or not. He will also have a car seat study done today to see if he can handle riding in a car seat while maintaining control of his breathing and heart rate. This is done because he is to small to fit in a car seat normally and his chin may tend to drop and thus cut off his air supply a little, the nurses have ways to pack blanket rolls in the seats to help limit this effect.

Thank you to everyone who continues to pray for him and please continue to do so. God is giving him strength and watching over him. Thanks and God bless.

Patrick

Update

Peyton now weighs 5lbs 3.3 oz.

He is doing well with the new medication the gave him and he seems to be able to eat a little more now that his stomach is digesting things a little faster.

The doctors are a little concerned with his Calcium and Phosphorus levels still being low. The levels are coming up just not to the amount they are wanting them to be. The doctor is going to have a meeting with the nutritionist today to discuss other options in regards to supplementation for the Calcium and Phosphorus.

He is also going to have to have another sleep study done in the next couple of days and may have to have another blood transfusion if he does not start producing red blood cells at a faster rate. the doctor said he is producing the red blood cells but they are taking more blood out to test him than his little body can produce.

Please continue to pray for Peyton and ask God to watch over him as he continues to grow.

Patrick

More Medicine

Peyton now weighs 5lbs 1.2oz. He is starting to get his appetite back after a couple of days of not wanting to eat.

The doctor put him on a new medicine yesterday to try and relieve some of his reflux issues. It is supposed to help with the motility of the intestinal tract and empty his stomach out a little faster to prevent the food from backing up into the windpipe. So far it looks like it is helping because he is eating faster and seems to want more than his minimum amount of food.

He is having some blood work done today to determine if his Phosphous levels are coming back up or if they need to add more formula to help with that. The tests will also determine if he will need a blood transfusion again to increase the number of red blood cells which will help in the transportation of O2 in his body. The doctors think he is doing good making his own red blood cells but the amount is still a little low and this may be contributing to some of the breathing issues.

All the problems he is having are fairly normal for premeis and should be resolved with time and growth according to the doctors.

Please continue to pray for Peyton and that God continue to watch over him during this time.

Patrick

Minor Setbacks

Peyton now weighs 5lbs 0.2oz.

His eye exam yesterday went well and the doctor said that his retina is nearly fully developed and he has a good chance of having 20/20 vision. His sleep study showed inconclusive results. They say he does not need full time O2 but it is not going to hurt him to have it. The study also showed that his acid reflux is worse than originally thought, so they are going to try some different medications and formula to try and correct the problem. He also had his immunizations yesterday and everything seems to be ok there.

The setbacks are that he had an A&B spell yesterday morning and this morning. In order for him to come home he has to have 5 consecutive days without any episodes. The doctors and nurses all seem to think that these A&Bs are related to his reflux, they think that if they fix that he should be ok.

Thank you all for all your prayers and support. Please continue to pray that God watch over him and make him stronger with each passing day.

Patrick

Update

Peyton had his sleep study late last night and into this morning. No official results yet but the nurse said he did well.

The only issue that is keeping him from coming home now is his Phosphorus levels are to low. They started adding Enfamil to his milk to raise his Calcium and Vitamin D levels last week, and now they are going to add more to get his Phosphorus level up. This is a concern because he is showing early signs of Rickets which is a softening of the bones which can lead to fractures. The doctor said there is nothing to worry about and he will eventually out grow it but for now they are going to continue to monitor him until they get his Phosphorus back up.

He is also going to have another eye exam today to test for ROP. If this test goes well they probably won't check him again for about a month. He will also probably undergo a car seat study sometime today to see if he can hold his head up enough to breathe and ride in a car seat. Also his immunizations are going to be today and have to be given over a 24 hour period. Please pray that all these tests and procedures go well and that God continue to watch over him.

Thanks to everyone who continue to keep him in your thoughts and prayers.

Patrick

Update from the Weekend

Peyton now weighs 4lbs 13oz and is 17.25in long.

He is now able to have full breast milk feedings but they are adding a little formula to his milk to help with calorie intake and calcium consumption. He is able to eat as much as he wants as long as he finishes 40mls and he is doing a great job of that.

Peyton should have his sleep study today to determine if he needs O2 at home or not. Tomorrow he should get his immunizations (has to be given over 24hr period) and he will get another eye exam. The doctors and nurses keep telling us he is doing so good, which is very reassuring.

He had a hearing test on Friday which went well and they said he has no hearing problems.

Hopefully, God willing, Peyton will do very well on his sleep study and have no ill effects from the immunizations and he may get to come home soon.

Sorry for the short post but he is doing well. Please continue to pray that God watch over him and protect him. Thanks to everyone who continue to think of Peyton during this time.

Patrick

No More Tubes or Incubator

Peyton now weighs 4lbs 10.2oz, again. He is putting back on the weight that he lost when he got on the diuretic.

He is now in an open crib (the same ones you see in newborn nurseries) and he got his feeding tube out. They also are trying him without oxygen again, so he has no more tubes or tape on his face. This is very exciting since it is the first time we have ween him without anything on his face.

They are letting him eat as much as he can stand every 3 hours as long as he finishes a minimum of 40+ mls. He finished 55 mls yesterday morning but then spit up for the first time so we think that his capacity is probably closer to 50 mls.

He will get his immunizations today and possibly get circumcised as well. They are doing that now so he has the weekend to heal before they run anymore tests next week.

Please continue to pray for him and that God may watch over him and protect him. We really want to thank everyone who continues to pray for his health and please continue to do so.

Patrick

Good News

All of Peyton's tests have come back favorably.

He now weighs 4lbs 8.8oz, so he lot a little bit of weight the last 2 days due to the diuretic. The doctor told us this might happen since he is expelling excess fluid in his body.

He is down to 25% on his O2 and they are going to continue to ween him down on that today. He is not in an open air crib yet but could be moved to one today.

He is feeding on all bottles now and they are allowing him to eat as much as he can stand as long as he gets a minimum of 40mls. Yesterday he finished at least 45mls every feeding so he is doing well with that. The only thing that is keeping him from getting the feeding tube out right now is his Vitamins and medicine. However yesterday they ruled out the possibility of him needing anymore antibiotics so he will most likely come off the feeding tube today.

It has been 2 days since his last A&B spell, which is important because it has to be 5-7 days straight without incident before they will let him come home.

Thanks to everyone who continue to pray for him and please continue to do so. He is proof that pray works and he still needs all the help and support he can get.

Patrick

More Tests

Peyton had his developmental assessment yesterday afternoon and the doctor said that he is doing very well and right where he needs to be in terms of his growth.

He is now getting to have 8 bottles a day (full bottle feeding, no more tube) but they left the feeding tube in just in case he needs medication. 2 of his bottles now are Alaina's breast milk because they want to see if he has out grown his early allergy. Since he is getting the diuretic they are having to include some potassium into his food because he is urinating so much he is having trouble maintaining those levels.

He also had his ECO yesterday but there are no official results back on that at this time. We will probably get additional information on that around 5pm today.

They have also started weening him down on his O2 and everything seems to be going good on that for now.

He will have his VCUG (Dye Test) today to make sure everything is flowing out of the body and not backing up into his kidneys. Please pray that everything goes well with this test and that the ECO results come back favorable.

Please continue to pray that God watches over him and protects him. Thanks to all who continue to pray for him and think of us at this difficult time.

Patrick