DAY 20 - WEDNESDAY, APRIL 30, 2008

ANDREW - Today Andrew continues to do very well and steadily improve. He is eating more each day and is up to eating 50 cc either by bottle or through the feeding tube. He is beginning to look more like a baby without any problems. Except for the wires and tubes still connected to him, you wouldn't know that he had anything wrong with him. This evening he weighed in at 6 lbs. 4 oz. and which 5 oz. more than a couple days ago. He also had the VCUG test today and the NICU doctor said that his renal system works properly. However, the VCUG test only indicates that the urine within his renal system flows out in the right direction. If the test indicated that urine backs up his system, called reflux, then it would indicate other problems. But he passed with flying colors. So it helps us to know that he has passed another test which will help him come home sooner. But as far as determining the location of the blockage in his kidneys, we will have to wait for the renal scan. The scan isn't scheduled for another week, so Andrew has a little more time to continue to grow and get plenty of rest. We are SO overjoyed with the progress Andrew makes each day. We feel that prayers are answered on Andrew's and our behalf every day, and that the tender mercies of our Father in Heaven has made what seemed to be a difficult time in the NICU, but an actual blessing for Andrew to have time to heal and rest. (PICTURE: Mommy and Daddy visiting Andrew in the NICU)

AARON - Today Aaron is doing much better than with some of the challenges he had yesterday. He is sleeping more soundly and is more calm today. We put Aaron in our baby swing and he looked so tiny in it. He needs a little more time to grow to fit into it. We feel that he is beginning to be aware of some of the things going on around him, so he has been staying awake for a bit longer after a couple of feedings. Normally he conks right out after eating. We could tell he tried to stay awake longer when rocking in the swing, but the swing was so relaxing he quickly went to sleep. He also eats anywhere between 2 to 3 ounces per feeding and we have noticed he is a bit chubbier than a week ago. So we are happy he is adding a little more weight. But before long he will be as big as his brother. (PICTURE: Bedtime for Aaron)

DAY 19 - TUESDAY, APRIL 29, 2008

ANDREW-  Earlier this afternoon I had the chance to go to the hospital to visit Andrew and (try) to feed him a bottle.  As I held him in my arms and looked down at him tears came to my eyes as I thought about what a miracle he is.  It is only through the hand of the Lord that he is here today and progressing so well.  Andrew is such a blessing to us and has already brought us so much joy in the short time he's been here.  It's amazing what this little boy has been through in the last 18 days and how well he has pulled through.  According to doctors' orders he is being fed with a bottle twice a day, or once each shift.  The remaining feedings (which are every 3 hours) are given him through the feeding tube.  Nurses are careful to feed him when he is awake and alert because he is usually able to drink it all up.  However, when they know I will be coming in they leave it for me to do--awake or asleep.  So far I haven't been lucky enough to find him awake enough to drink the whole thing.  But it brings me great joy to just be able to hold him and love him-- asleep or awake.  It's only been since Saturday that he was even drinking from a bottle and that was only at 10 cc's every 3 hours.  Andrew is tolerating it so well that he is now up to 40 cc's.  He still has a long way to go before he is able to coordinate the sucking, swallowing, and breathing routine down and not need the feeding tube.  But I have no doubt he will be able to accomplish this. Doctors and nurses are continually monitoring him for possible acid reflux but so far he's done super.  Today they switched his IV from the nutrients & electrolytes he has been receiving to a regular IV with saline.  So each day he gets better little by little. We love this little guy and are so proud of the strides he makes each day. (PICTURE: Katie feeding sleepy Andrew)

AARON- Aaron is no less miraculous to us than Andrew is.  We are so grateful for his good health.  Since we were told that hydronephrosis is most likely a genetic defect we may carry, we feel it a blessing that Aaron has a clean bill of health.  We'd love to have Andrew home too but we are so glad Aaron already is.  All he really does is eat, sleep, and poop but according to everything I've known and heard that's a very normal newborn.  We love him more and more each day.  He is very content and is usually pretty consistent in the time he is hungry. But this evening he has had a bit of trouble sleeping and eating consistently.  But we are working hard to keep him to a consistent schedule.  During the ultrasounds I'd have during pregnancy he was seen to have hiccups several times and he continues to have them at least once a day soon after he is burped. Sometimes his hiccup spells go on for quite a while. (PICTURE: Aaron is so cute)

DAY 18 - MONDAY, APRIL 28, 2008

This morning Katie had her follow-up appointment with the perinatalogist. He is the one who delivered Andrew and Aaron. He also initially had painted a bleak picture about Andrew's outcome. The doctor is very happy, of course, that he was wrong. He gave me a great big hug to let me know that he was so happy and that everything is turning out much better than expected. The doctor said that her incision is healing nicely and they removed the remaining steri-strips holding her incision together. I was amazed that all the nurses at the office have heard how wonderful the babies are doing and especially what a fighter Andrew is, and were so excited about the blog we set up.

ANDREW -  Earlier this morning Andrew had a renal ultrasound to follow up on his kidneys and another one of his spine to determine if there were any abnormalities. Andrew's urologist said that the ultrasound found that the swelling in his right kidney had gone down slightly. Both kidneys also continue to have quite a bit of health tissue, but his right kidney is a bit more healthier than his left. Plus is creatine levels continue to remain at 0.2, which is as normal as they can get. His feedings remain at 20cc/3 hours but most feedings is is still given through the tube.  Today, though, he was wide awake at 2 pm and his nurse said he drank down the whole bottled- which is a first. Way to go Andrew.  Although he was a little sleepy for his 8 pm bottle feeding and couldn't finish it. The dressing where his chest tube used to be was also removed and the surgeon said it has healed up very nice. We also leaned that his VCUG test is scheduled for Wednesday and he has a renal scan scheduled in a week or so. The renal scan will help determine how much each kidney is functioning. This will help determine whether it will be beneficial to do surgery on both kidneys or just one. But each day Andrew is continuing to look better and better.  

AARON -  It has now been over a week (8 days to be exact) since Aaron came home. He (and his parents)- have beginning to adjust well. We are gradually getting used to less sleep, lots of diaper changing, and less time to ourselves. But we love it.  Aaron really is a good baby, growing quickly, and eating a lot. He was more fussy this afternoon and didn't get much sleep between one of the feedings.  But he has finally settled down and sleeping nicely. We are still learning how to read his moods and actions.  But we know that the more time we spend with him the more we can know if he is feeling good or uncomfortable. When he was first born we thought he had brownish-blonde hair. We now realize he's got red hair- very light red, kind of reddish/blonde but definitely with red. He gets this from Katie's side of family.   

DAY 17 - SUNDAY, APRIL 27, 2008

ANDREW - Today Andrew continues to do very well and not much has changed since yesterday. He continues to sleep well and is progressing nicely. The doctors have increased his feeding to 20 cc and he seems to be tolerating it very well. They are also feeding him through a bottle twice a day and when we stop in for a visit they let us feed him with the bottle. But he still is trying to learn how to use the bottle, he can only swallow a few small sips at a time. But if we keep practicing with him each day he will get better and better. He is still fed through his feeding tube every three hours so he his getting plenty to eat. One of the concerns with him starting to eat more is the possibility of developing acid reflux. It is very common for babies who have undergone TEF surgery to have acid reflux. His esophagus is so under developed at first that it is easy for acid to go back up it. For now the doctors are feeding very small amounts at first during each feeding so he shouldn't have much of a problem. But as they progressively increase the amount they will watch for any problems. As he continues to get older he will most likely require Previcid or some other type of prescription antacid to help control any acid reflux he may develop. His NICU doctor said that he will most likely have the VCUG test next Wednesday, so we are in a bit of a holding pattern until then. But for now he is doing the best he can to heal and save his strength for any further surgeries he may need. (PICTURE: Andrew wrapped with love in one of his home made blankets)

AARON - Today Aaron is also doing very well and we love him more and more each day. He continues to eat a little more each day and is just about eating everything we give him. His pediatrician said he should be getting approximately 12-18 ounces per day, and so far we are right on track with that. It is really good to know that he continues to have a healthy appetite. A week ago we were very concerned that he wasn't getting enough to eat, but his appetite has kicked into high gear now. He is still a bit small but we know he will be starting to get bigger before too long. (PICTURE: Too cute for words, and chicken legs to boot)

DAY 16 - SATURDAY, APRIL 26, 2008

ANDREW - Today we learn again that Andrew continues to improve step by step. Our NICU nurse told us that since he has been moved into the isolette he has been much more calm and has been sleeping much more, in spite of the scheduled diaper changes. But each day he looks SO MUCH better, we can't believe he is the same baby from just a week ago. This afternoon, Steve went to see Andrew at the hospital and was treated to an unexpected surprise. Steve was able to hold him and feed him from a bottle- HIS VERY FIRST BOTTLE!! In the past he had only been fed through a feeding tube. But today Andrew was well enough to be fed through a bottle. He only drank about 10 cc which is only about a table spoon full and drank it very slowly. He had a little difficulty figuring out the suck then swallow routine, but he did very well for his first time eating anything by mouth. He also seemed to think the pats on his back to help him burp was a different experience. He opened his eyes wide after the burping to say..."What was that for??" But he remained calm and sleepy throughout the entire feeding, which lets us know he is feeling much better. His size and weight is also a stark contrast to Aaron. When Steve held Andrew he could definitely notice the difference when feeding him. Later in the evening I was able to have the same experience when I went to visit Andrew. However, when I attempted to feed him his bottle he was so wiped out that the nurse ended up giving it to him through his feeding tube. The nurse had just weighed him, which is now at 5 lbs. 15 oz., exactly 1 lb. heavier than Aaron. Andrew is so much denser than Aaron. Compared to Andrew, Aaron is like a feather. While I was there one of the nurses on the shift (who had cared for Andrew last Sunday) came over and looked at him and couldn't believe the difference in him in less than a week. I could've held him in my arms all night but after 45 minutes of holding him and loving him I had to get back home. We look forward to holding him more often in the days to come.

AARON - Aaron continues to progress each day. As he gets a little older we are finding that he likes eating from a bottle just as much as sleeping. And when he's hungry he let's us know! He begins to thrash all over and makes sure we know his lungs are working. But that's not every feeding and we love this little guy more and more each day. He is a very good baby and very content.

DAY 15 - FRIDAY, APRIL 25, 2008

WOW...it has been two weeks today since our two boys were born.  It has been both exhausting and exciting at the same time.  On one hand it seems like yesterday they were both born but on the other hand it seems like more than a month has passed.  We are amazed with how much has happened in the last two weeks, it's hard to keep track of what and when things have happened. But we are so very blessed to have these two babies in our lives. We are so grateful for everyone's supportive comments and emails concerning Andrew and Aaron. It helps us know how many are out there supporting and praying for their well being.

ANDREW - Today Andrew continues to look, breathe, and feel better.  The swelling throughout his body continues to decrease.  This morning his nurse moved him from an open warming unit, which he has been in since his birth, to an isolette.  The isolette is a fully enclosed plexy glass box which helps maintain his temperature and also isolates him from much of the noise in the NICU.  They felt that his agitation would be easier to manage if he was inside one.  However it also limits the amount of contact we have with him, but we see that he is much more calm and relaxed in it.  But he is still located in the same lucky corner of the NICU.  We also had the greatest opportunity to hold Andrew for the first time since his birth.  It was such a special experience for Katie to finally hold him.  He was able to open his eyes and look up at us for a long time.  When the nurse took him out of the isolette, it took about 10 minutes to re-arrange all of the wires and tubes in order for us to hold him.  It really demonstrates how many different sensors and tubes are used to monitor every vital system he has.  We had to really take extra care not to disturb the nephrostomy tube which drains the fluid from his kidneys. The NICU Doctor told us today that he is doing amazingly good.  The air in his chest has completely disappeared and he is able to breath on his own without the aid of oxygen.  He also said that because of his size they may not need to wait till he gets larger to perform any corrective surgery to fix the problem with his kidneys.  He currently weighs approximately 6.1 pounds, 

but some of that may be from the remaining swelling he has.  It looks like he may have the Voiding Cystourethrogram (VCUG) test either next Wednesday or Thursday.  From there it may be a few more days after that he can have the corrective surgery.  It seems that everything is moving at such a rapid pace, but Andrew has astonished everyone at his capacity to overcome all of the challenges he has faced and continues to heal very rapidly.  So all of the doctors and nursers at the hospital are actively trying to get him healthy and strong as soon as possible.  Several of the NICU doctors and nurses call Andrew their baby because they have worked so hard to care for him.  It makes us feel comforted to know how much they really care about him. (PICTURE #1: Mommy holding Andrew for the first time. PICTURE #2: Andrew feeling better in his new isolette)

AARON - Today Aaron continues to do really well.  We just love how he wiggles and fusses every time we try to take his temperature or change his diaper.  He is still pretty skinny and when he moves and kicks his legs around we like to call them little chicken legs.  He also continues to eat and sleep very well, which is hard to say the same for mommy and daddy.  But we hope to fatten him up as soon as we can so he can be as big and strong as his brother.

DAY 14 - THURSDAY, APRIL 24, 2008

ANDREW - Andrew is famous!  Today when we were at the pediatrician's office for Aaron's check-up (3 of our neighbors all see him and highly recommended him) he was asking about Andrew and what the latest is on him.  The doctor said this morning there was a monthly learning lecture yesterday and Andrew's case was presented.  His TEF surgery was present by Dr. Kogut, Andrew's pediatric surgeon, and she showed a video and images of the repair.  I kind of wish I could've been there.  He was also transferred to a new warming bed- a "Cadillac bed" as his nurse calls it.  It's a new top of the line, high tech warming bed that is more compact, rotates around to prevent moving him a lot, a really nice thick mattress, and much more.  I just hope he doesn't enjoy it so much that he won't want to come home to his everyday crib.  When we called this evening to check up on him we were told that the VCUG was postponed until next week.  When they took him down for the procedure this morning they did an initial x-ray and found that some of the barium from his Esophagram the other day was still in his intestines.  The residual barium masks the area they need to see and would prevent them from getting an accurate view of his kidneys and urinary system.  Also, the NICU doctor on call today wants a specific doctor to do the VCUG test since that is her specialty but she only works on Wednesday & Thursday.  So the VCUG test won't be performed until next Wednesday or Thursday.  As anxious as we are to know the results of this test and what the next step is in his healing process, it's for the better.  This will give Andrew more time to heal and become more stable before going through another surgery.  Andrew is also out of the oxygen hood and breathing normal air all on his own.  Which means the air in his chest has gone away.  We also learned that they fed him 10 cc of mother's milk today for the first time through his feed tube and into his stomach.  Previously he was fed nutrients through his IV. Unfortunately he hasn't been able to digest the food very well and had a tummy ache.  So they will start feeding him smaller amounts of milk to let him get used to the food over a longer period.  His Creaton levels have also dropped to 0.2 which is normal for new born babies. So his kidneys are still doing very well and normal.  Unfortunately we weren't able to hold Andrew today. We had planned to see him this evening, but because Katie's blood pressure shot up this evening we weren't able to go.  But we are so happy that he is doing much better and keeps getting better day by day.  We know that everyone's prayers are helping him a great deal.  Andrew is no doubt  a miracle.

AARON - Aaron had his first outing today when we went for his first check-up with the pediatrician.  He HATED the car seat and screamed after he was buckled in.  He'd better get used to it because he won't be going anywhere in the car without being in it. He wasn't bothered by it on his ride home from the  hospital because everything was so new.  Aaron now weighs 4 lbs 15 oz. so he is doing well.  His original birth weight was 4 lbs. 10 oz. According to measurements by nurses he is now 18 1/2 " long so he's even grown a little too.  We are grateful that he is doing so well.  The doctor says he is perfectly normal.  Small, but normal.  We were looking through his discharge papers the hospital gave us and he was only in the 11-25% percentile in weight and length.  I have no doubt he'll eventually catch up.  Other things we've learned about Aaron so far:  besides hating his car seat he doesn't like baths, lying on his back, or having his diaper changed.  Sounds like a normal baby to me!  Our first full day without expert help has gone well.  So far no serious damage has been done.  We also set a new milestone with Aaron- he successfully breast fed from mom today.  We have been working with him each day, but today he finally got it (and so did mom!).  We are tired but it's a rewarding kind of tired.  As soon as I pick him up in the middle of the night and look into his face I have an overwhelming feeling of love for him.  We love having him at home with us and look forward to the day when Andrew can leave the hospital and join his brother. (PICTURE: Aaron with another one of his adorable faces)