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)

DAY 13 - WEDNESDAY, APRIL 23, 2008

ANDREW - Today Andrew continues to improve and is doing much better than yesterday.  Compared to how he was a few days ago he is like a new baby.  In fact, with each day he seems more and more like a real baby.  Today we visited him twice.  At the first visit he was wide awake and looked us in the eye for several minutes while we talked to him and held his hand.  To even see him sneeze, have the hiccups, and yawn today is a big deal.  His blood pressure is down to near normal and his breathing is much easier.  Overall he is also feeling less pain because the chest tube has been removed and his left kidney has been drained.  In the past he has always become very agitated when he was manipulated in any way or when loud noises were around him. In the NICU it is hard to keep things quite around him so he became agitated very easily.  But throughout the visits we saw him today he was very calm and nurses said he's been very good all day. He was also very calm when we changed his diaper, which was a first. Although an x-ray performed this evening still shows that he has a small amount of air in his chest (called a pneumo-thorax) from the accidental dislodging of the chest tube yesterday we are told it has improved and is smaller than yesterday.  He continues to remain under an oxygen hood to give him the oxygen he needs to clear his chest of the air.  Once the air in his chest is gone we will have a chance to hold him.  Today he received an ultrasound of his kidneys again but we haven't heard yet of the outcome of it.  But his kidneys are still producing plenty of urine to let us believe that his kidneys are doing what they are supposed to be doing.  Tomorrow he is scheduled to have a VCUG test (don't ask me what it stands for) on his kidneys to determine where the blockage or restriction is located which is causing the back-up.  From there we can then plan on the correction method to help alleviate the back-up.  So we hope that Andrew's condition will continue to improve tomorrow. (PICTURE: Mommy comforting Andrew)

AARON - Aaron is still as cute as ever. He never ceases to amaze us as to how well he is doing.  We've noticed that he has begun to gain a little weight and continues to sleep pretty good.  When we feed him he makes the cutest cooing noises in his throat.  Although sometimes he gets the hick-ups after meals which keeps him from falling back to sleep.  Tomorrow we have our first pediatrician visit with him since his release from hospital.  We hope that he will have a clean bill of health. We are sad to see Grandma Rawlings leave us today to return to St. George.  She was SO MUCH help in getting us settled into taking care of Aaron on a 24-hour basis. We hope that we can remember everything that she has taught us.  But we know she can't resist our little Aaron so we know she will be back soon!

DAY 12 - TUESDAY, APRIL 22, 2008

ANDREW - Today Andrew underwent surgery to insert a Nephrostomy tube to drain his left kidney about 11am this morning.  They were able to insert, under x-ray, a small tube to drain his kidney.  They drained more than 200 milliliters from him. The tube will continue to stay in his kidney to drain any further liquid.  His left kidney is still swollen but not nearly as bad as his right kidney was. It is not giving him any troubles yet and still produces plenty of urine.  His right kidney was so swollen that it began to decrease the amount of blood flow to it.  This in turn causes his kidney to produce a hormone that increases his blood pressure.  So after the surgery his blood pressure steadily dropped to normal.  The diameter of his abdomen reduced 4 cm from 36 cm to 32 cm.  After the nephrostomy surgery he was given an Esophagram (barium swallow test) which can detect any leaks in his esophagus after the surgery.  We are glad to say he didn't have any leaks in his esophagus.  Unfortunately when they were moving him after the Esophagram, his chest tube was accidentally dislodged.  This caused a small amount of air to leak into his chest.  They had to immediately return him to the NICU.  They were able to patch the small hole in his chest and start him on 100% oxygen to help reduce the air in his chest.  So he no longer has the chest tube and his esophagus is on the mend.  He will now be able to get his food from a feeding tube through his mouth.  Step by step he gets closer and closer to going home.  He still has a ways to go but when we think about all that has happened in just 11 days it could be sooner than we think.  However, we were not able to hold him yet because he has a small dome over his head which is providing him oxygen and his vitals weren't very stable.  His heart rate was extremely high and he was in a lot of pain from the procedures done earlier today.  We hope to be able to hold him tomorrow.  Over the past week he has been through so much punishment but he continues to do well. (PICTURE: Andrew recovering after surgery with an oxygen bubble)

AARON - Today Aaron is still doing really well.  He continues to sleep well and swallows every bottle we give him.  We are amazed at how content and easy going he is.  But we know as he gets older that will change.  So we are enjoying every moment with him.  Katie's step mother has been helping us for the past few days and has been a great help.  Unfortunately she goes back to St. George tomorrow, so we will miss her help. (PICTURE: Aaron is ready for his nap)

DAY 11 - MONDAY, APRIL 21, 2008

ANDREW- Tomorrow, Tuesday, will be a big day for Andrew.  We spoke with the NICU doctor today about his progress and the procedure that have been scheduled back to back (to minimize his "travel" time from the NICU) tomorrow.  First, Andrew's left kidney will be drained.  It is the larger of the two kidneys and is putting pressure on his stomach. Doctor's feel this may be having an impact on his stomach and other internal organs.  The swelling he has had has been masking how swollen his kidneys have gotten. His right kidney has gotten so large that you can see its outline when you look at his abdomen.  Following the kidney drainage he will have the barium swallow test.  This was explained in detail in yesterday's blog under Andrew's section.  We are praying and hoping that the results of this test will show the repair to his esophagus has healed.  If there is no leakage his chest tube may be removed and a smaller feeding tube will be inserted into his stomach (rather than to the intestines like it currently is).  The main reason we have been unable to hold him is because of his chest tube and the ventilator tube.  We hope will be able to hold him for the first time tomorrow.  The doctor also said his lungs are clear and his breathing continues to improve.  Andrew has improved a lot since the ventilator tube was removed.  Now that the problem with the esophagus/trachea are (almost) resolved and now they can begin focusing on his kidneys.  They hope to do the VCUG-or vascular-test on Wednesday or Thursday.  This test involves putting barium through his urinary system to observe on x-ray the location of the blockage.  Then a diagnosis can be determined and the steps needed to resolve the problem. 

We LOVE the nurse that is caring for him today- she is our favorite.  She was his nurse last week and will be the rest of this week.  It is obvious the love and devotion that she has for her babies.  She takes seriously the responsibility she has as their nurse.  Andrew is very sensitive to noise around him.  When there's loud noises, lots of talking, and moving around his heart rate and blood pressure goes out of control.  It is a good thing he is in a far corner of the room but today she posted a sign on his bed- "SHHH, I need to grow" and she had to tell people around her to quiet down.  Andrew was also started on blood pressure medicine last night because his blood pressure sometimes reaches above 200.  Mine is high too but not that high.  Apparently, his high blood pressure is related to his kidney disorder, which makes him more susceptible blood pressure spikes.  Andrew is a miracle and continues to be a fighter.  We hope and pray that he will continue to defy the odds.  We are so grateful for your prayers in his behalf.

AARON- Aaron (and his parents!) has survived his first night home!  We love having him home!  Not that we didn't believe it before but we are beginning to get an idea of just how nonstop it is as a parent.  But it is so rewarding!  Aaron is a very content baby and seems to be adjusting well to his new environment. He has been eating and sleeping very well, and he received his first bath at home today. We wondered if he would be able to sleep OK because it is so much quieter at home than it was at the NICU and Special Care Unit. He has gotten so used to sleeping with the lights on, warning bells, and talking people around him we thought he might have trouble adjusting. We are also so grateful that his Grandma Rawlings could be here to help out for a few days. She has helped us so much giving us a crash course in infant care. Besides helping us learn the basic principles of infant care, she has helped us learn some of the tricks and short cuts which can make things a bit easier. Thank you very much Grandma Rawlings, we love you.

DAY 10 - SUNDAY, APRIL 20, 2008

AARON - WHOOOHOOO!!! Today we finally were able to take Aaron home. We are so overjoyed with this day. Aaron passed all of his tests and received his final check-up from the Doctor. After a brief consultation with one of the nurses we left the hospital about 5pm this evening. When we strapped him into the carrier he seemed to disappear into it. It just about swallowed him up he is so small. He wasn't too sure what to make of the carrier, but he didn't make much of a fuss even though he was very hungry. We took him home at the same time as one of his feedings. He was packed into the carrier like a sardine and sat content. As we carried him down the elevator and out of the hospital he seemed to enjoy watching everything going by. He seemed to also take the car ride home with equal curiosity. We think he was SO ready to come home with us. We think he was sick of the hospital food too. We look back on the past week and are amazed at how much he has progressed. Each day has brought new experiences and new firsts with him. We love him so very much and look forward to taking care of him from now on. However we know we are not going to get much sleep tonight by either waking every three hours to feed him or just worrying whether he is OK or not. (PICTURE: Are we there yet.)

ANDREW - At the same time that our joy was overwhelming to bring Aaron home today, we also felt sadness that his brother was not able to join him. He still has a lot of hurdles to over come, although he continues to look better and better each day. The Doctors are very impressed with how well he is doing without the ventilator. Either tomorrow or Tuesday they are planning to give Andrew a barium swallow test which under x-ray can detect whether his esophagus has healed completely. They will have Andrew drink a small amount of barium and the x-ray can see if everything passes to his stomach. If any wisps of the barium are detected outside of his esophagus he still has some more healing to do and the chest tube will remain in place. Dr. Close has also requested that a small catheter be inserted into his left kidney to drain it. Much of his swelling has decreased, so Dr. Close feels that his swollen kidneys may be affecting his breathing a bit and draining it will help him breath easier. His abdomen is still very distended and he can't use his abdominal muscles very well to breath. He has to rely on the muscles in his upper chest to do most of the breathing for him. The procedure requires the insertion of a needle into his kidney through his back. A small tube will then be placed into his kidney to allow fluid to drain. The tube will stay in his kidney to help it drain for a while. So we are very hopeful everything will go very well with the two procedures.  Today we spent about an hour by Andrew's bedside holding his head, hands, and feet and talking to him.  He was a bit fussy when we first went to see him but he soon calmed down once we were there.  We are SO anxious to hold him for the first time.  That will be a great day!

DAY 9 - SATURDAY APRIL 19, 2008

ANDREW - Today Andrew is our miracle baby. He is doing much better than expected after his ventilation tube was removed last night. He continues to breath on his own but is still provided extra oxygen. We know that it has been through everyone's prayers and the power of the priesthood that he has been able to make it this far. This morning he did have a small amount of congestion in his lungs, which caused him to breath with a bit of a gurgling sound. But as the day progressed he began to breath better and better and sounding more clear. When he cried we were able to hear a short barking sound when he inhaled. This afternoon when I (Katie) went to visit him I heard him cry for the first time since he was first born.  I became so  overwhelmed with gratitude with  the progress he's made since a week ago that it made me cry too.  I never thought I'd be so excited to hear my baby cry!  Due to the Tracheal-Esophageal Fistula the lining of his trachea is very thin, so when he rapidly inhales during crying, coughing, or laughing his trachea collapses or vibrates rapidly making a short barking sound. The Doctor says that this will occur for about 3 years until the cartilage in his trachea begins to harden. In the future, because he is susceptible to choking, we will also need to be very careful that he doesn't eat foods that he can possibly choke on such as small hard candies, hot dogs, chunks of meat etc. As he gets older we will also have to make sure he chews his food thoroughly before swallowing. In the afternoon they removed several small IVs that were inserted into the veins of his remaining umbilical cord. They in turn inserted what is called a pick-line which is a very small tube inserted into a large vein in his leg which follows the vein to near the heart. It will provide a better route to provide medication and fluids. His pee has diminished a bit because they have taken him off the medication that removes the excess fluid from his body. On Monday he is scheduled to have a Barium test (or "swallow test") on his esophagus which will determine if their are any leaks at the site of the surgery. If there are no leaks he may be able to get the chest tube out of him. If that happens we may be able to start holding him and feeding him. Over the past few days he has lost a lot of the swelling throughout his body. His color is also very good and his skin is not as puffy. He looks like a new baby!  An even more beautiful baby!  (We're not biased or anything...)  His kidneys are still doing well and there isn't any plans in the near future to fix anything just yet. Our Pediatric Urologist is the greatest, she keeps close tabs on him on a daily basis and she always keeps us informed on how his kidneys are doing. (PICTURE: Andrew feeling and breathing much better)

AARON - Aaron is our second miracle baby (so as to not to exclude him). He continues to drink down his bottle during each feeding every three hours. Each day the nurses increase his feeding amount 10 cc and today he is up to 60 cc. Just a few days ago we were lucky to get just 20 cc into him before he fell a sleep on us. We would have to feed the rest of it through his feeding tube. At a minimum he has to drink at least 38 cc, so he has become a little piggy. But that is good because he needs to gain as much weight as he can. But this is just one more step that he has to complete before we can take him home, and he is doing a wonderful job. He also passed sitting in his carrier all strapped in for an hour today. He still has to get a hearing evaluation before he can go home too. We hope that can be done tomorrow and then he will be able to go home with us. We can't believe that he actually might be home with us tomorrow. It's so exciting. We will definitely provide updates on his progress at home too. (PICTURE: Please take me home will ya)

DAY 8 - FRIDAY, APRIL 18, 2008

KATIE - Today Katie is still pretty sore. Unfortunately the delivery doctor was pretty rough on her and she has quite a bit of bruising on her abdomen. She is also suffering from pretty severe swelling in her feet ankles, but she is in good spirits especially when she sees her two boys during feeding visits at the hospital. She is still trying to get as much rest as she can.

ANDREW - Today Andrew has had somewhat of a set back. Early this morning Doctor's discovered after a 5am x-ray that a part of his right lung had collapsed. The previous day's air that had infiltrated into his right chest had disappeared, but it caused a small part of his upper right lung to shrink which does not allow any air into it. The Doctor's believe that the air in his chest and the subsequent collapse is because he has been on a ventilator for so long. The ventilator has been working to provide a little bit of assistance to aid Andrews breathing. When Andrew begins to take a breath the ventilator kicks in and provides a little air to fill his lungs. This helps him so he doesn't have to work so hard to breath and allow him to direct his energy into healing. However, prolonged use of the ventilator can have some adverse effects. They have also found that he may have an infection in his lung. Occasional suctioning of the ventilator tube in his trachea has found some yellow mucous which can indicate a bacterial infection. He has been on antibiotics since the surgery, but ventilation tubes are great places for bacteria to hide. So, we've decided along with the Doctors to remove the ventilator tube from his trachea. It has come down to a catch 22 on whether to keep him on a ventilator and deal with the adverse effects or take him off the ventilator and see how well he can breath on his own. Steve and our Bishop gave him a Priesthood blessing at 4pm. At about 6pm the NICU Doctor and nurses removed the tube. We were not present when they removed the ventilation tube, but they said he had a rough time afterwards. He apparently cried so hard that he forgot to breath and became slightly blue and didn't get enough oxygen for a short time. But they helped to calm him down and so far he is doing pretty good and breathing on his own. They continue to give him oxygen through his nose, but he has a lot of congestion in his lungs. They've been giving him some medication to help clear his lungs and he is doing better with that. They also check the amount of oxygen and carbon dioxide in blood frequently and if the carbon dioxide levels rise he may have to be hooked up to the ventilation machine again. On a better note, Andrews kidneys continue to improve. Dr. Close, Andrew's pediatric urologist, said this evening that his Creatine levels have now dropped down to 0.4 which is nearly normal. Plus he continues to pee a lot which indicates his kidneys are still functioning very well. They performed another series of ultrasounds on his kidneys this morning and she said everything is still looking great. They are planning to perform another ultrasound on Monday. Because he is doing well with his kidneys the Doctor said that we may be able to bring him home even if his kidney issue has not been fully resolved. She said that he will still need some surgery to repair the blockage but after he gets a bit bigger and older. However we still need to get Andrew better with the problem with his esophagus and lungs. So we ask everyone to please remember Andrew in your prayers. We are still amazed as to how well he is holding up to the challenges he has went through and is still fighting strong. (PICTURE: His first picture since the his tube was removed)

AARON - Aaron never ceases to amaze us as to how well he is doing. During every feeding today he was able to finish his bottle. He no longer has the feeding tube (which he pulled out himself) so he has to get all of his food through the bottle. He is up to 45 cc of mothers milk/formula now which graduates him to the adlib club, which means he decides how much he want to eat as long as gets 38 cc. Considering he started at 10 cc at the beginning of the week he is doing pretty good. Today during one of his diaper changes he peed and some of it hit him in the face. He and we did not like that at all. The SCU Doctor looked at him today and said that we may be able to take him home as early as Sunday. We were so excited when we heard that. His latest weight is now at 4 lbs. 7 oz. which is almost the same as his birth weight. One of the things we have to do before we bring him home is watch a 20 minute infant CPR video, which we did. Since Steve is an EMT it was just a review for him. Tomorrow we have to bring in one of our infant carriers and he has to be able to sit in the carrier for an hour. They will monitor his heart rate and if he has no stress while being fully strapped into the carrier he passes that test. It will just be a matter or getting all of the paperwork signed and he will be ours to take home. (PICTURE: Proud parents with Aaron sans the feeding tube)

DAY 7—THURSDAY, APRIL 17, 2008

KATIE - After the second day home, Katie is doing very well. She is still very sore and misses being closer to the boys in the hospital. We are trying to visit the boys 2-3 times a day to feed them and change their diapers. The nurses are feeding them and taking great care of them when we can't be there. Katie's blood pressure is still borderline on the high side and her feet and ankles continue to be swollen. But it's best that Katie rest as much as possible and heal up before the boys come home.

ANDREW - This morning we found out that Andrew had started to develop a bit of air in his left chest. A routine x-ray was done about 6am this morning to see how he was doing. The initial x-ray showed a small dark patch in the lower part of his left chest. Due to his position it wasn't very visible. The NICU Doctor immediately ordered a second x-ray, and at 8:30am he received another. The second x-ray showed a small amount of air was filling his left chest. The Doctor thinks that a small amount of air is leaking from his lungs caused by a slight elevation in pressure from the ventilator. They immediately put him on 100% oxygen, reduced the pressure on the ventilator and increased the suction of his chest tube. Sometimes when newborns are on ventilators for a period of time, air can find its way into the chest cavity through tiny holes in the lungs. Another x-ray was done at 12 noon and it showed that their interventions have worked to reduce the air in his chest and his body can now help to absorb the excess air. He has also begun to reduce the amount of swelling in his body. He continues to pee quite a bit which is helping. Early this morning the nurse in charge of him said he opened his eyes for brief moment when they we changing his diaper. Overall he still continues to progress and heal. Unfortunately we can hold Andrew yet and we can't only touch him very briefly. We feel so guilty that we are able to interact more with Aaron and spend more time with him. But we know that his little body needs time to heal and he can only tolerate only a little stimulation.  We know that eventually we will be able to hold him when he is ready. (PICTURE: Andrews little corner of the NICU)

AARON - Today Aaron is having another good day. His 8:30 am feeding went very well, except he was so awake he didn't finish his bottle. He wanted to keep looking around the room to see what was going on. Overnight the nurses gave him an enema to help him move his bowels. He hadn't been pooping very well the previous day. So today he seems to be doing better. Yesterday Katie brought in several receiving blankets and a quilt which she made. The nurses took the blankets and made up Aaron's crib really nice with Mommy's love. The nurses stated that all of the other babies were so jealous of Aaron now. At his 2:30pm feeding he was able to finish his bottle in about 10 minutes, we were so proud of him. (PICTURES: Proud Mommy and Daddy)

We can't say enough of how wonderful the NICU and Special Care Nursery (SCN) nurses are. They take such good care of our little babies and for all of the other babies there. They have a lot of patience not just with the babies but with the parents who frequently visit. They are constantly exposed to warning bells going off on many of the monitoring devices throughout the NICU and SCN, but they still keep attending to the babies with love. We haven't had a bad nurse yet. The NICU and SCN are truly heaven on earth. (PICTURE: Aaron's decked out crib)

DAY 6—WEDNESDAY, APRIL 16, 2008

ANDREW - Today Andrew is still trying to heal from his surgery just a few days ago. Some of his swelling has gone down and his skin color is still very pink and healthy looking. He underwent another ultrasound this morning to learn more about his kidneys. Last night they started to feed him formula and mothers milk through his feeding tube at a slow drip of 3 cc an hour. However he apparently didn't tolerate it very well and his stomach began to swell, so they cut back his feeding to 2 cc and seems to be doing better. Doctor's also ordered an enema to help his bowels open up, but when they went to give it to him he had already pooped...a lot, so they didn't need to give him the enema. We never thought we could be so excited about a poopy diaper as we were then. He also received another blood transfusion to help boost his red blood cell count. This will help him carry more oxygen and help his healing. Dr. Close also ordered that his foley catheter be removed because it began to leak again. But he is still peeing very well which lets us know his kidneys are still producing lots of urine. They will track his urine output by weighing his diaper every few hours. This evening Dr. Close called and let us know that most of the tissue in Andrew's kidneys look very healthy and that his Creatine levels have dropped down from 0.6 to 0.5, which means his kidneys are functioning very well to filter his blood of toxins. Dr. Close also mentioned that he will eventually need surgery but it is not urgent at this point. She has scheduled another ultrasound on Friday to continue monitoring his progress. (PICTURE: Katie visiting Andrew)

AARON - Today Aaron is doing much better than yesterday. The nurses took out the IV in his hand because it started to swell with fluid. So they decided to see how well he will do without the IV and monitor hydration through his diaper. His feeding schedule changed to 8:30, 11:30, 2:30, 5:30 and so forth because the Special Care Unit he is in had an influx of a couple new babies, which had to be on his schedule. The nurses have to stagger their feeding in order to keep up. His feeding amount also increased from 30 cc to 35 cc. At his 5:30 pm feeding he was able to stay awake long enough to drink down the whole thing. We were so happy for him. He also stayed awake after the feeding long spent a good 5-10 minutes with him. He is still peeing a lot, but his pooping has decreased a bit. He should be pooping a bit more, but that can change tomorrow. At his 8:30 pm feeding, Aaron did even better in drinking all of his milk. He took only 10 minutes to finish his bottle. We are so happy he is doing so much better than yesterday. (PICTURE: Aaron sleeping so peacefully with  full tummy)

DAY 5—TUESDAY, APRIL 15, 2008

KATIE- Today Katie has been doing much better. The pain is still there but she is able to move and stand up a little easier. She is consistently getting enough pain medication to keep her going. Her blood pressure has been a bit better today but is still on the high side. The blood pressure medication has helped a little, but only time will help it go down as she heals more from the surgery. The hardest part has been eating the hospital food they serve. Today was especially bad- perhaps because it's going on five days.  At about 5pm one of the doctors from from Dr. Adeshak's office, Dr. Bohman, stopped by and allowed Katie to be discharged from the hospital. We waited until the 7pm feeding (& to eat a real meal brought in by a friend) to see Andrew and Aaron off and then she was finally discharged from the hospital about 9pm.

ANDREW - Today Andrew was a bit more lively. Doctor's had begun to decrease his pain medication a bit today. So he moved his arms and legs a bit more. They also started feeding him a bit of mothers milk and formula at 3 cc per hour. Previously the only nutrition he received was some sucrose and electrolytes through his IV. Also blood tests showed that his Creatine levels decreased from 0.8 to 0.6 which is great. Doctor's also reduced his breathing machine to allow him to breath on his own. He is still hooked up to the machine and still has the breathing tube, but he is able to take breathes on his own now. Unfortunately some of the urine had been passing around his catheter and into his diaper, so they weren't able to track the total amount of urine he was producing. But he is still producing a lot of urine which is good. They will probably replace his catheter sometime today or tomorrow.

AARON - Today Aaron is back into a regular crib now and maintaining his own temperature. He has also eating better, but had to finish his bottle using the feeding tube during a couple of the feeding times. Nurses have also increased he amount he eats per feeding to 33 cc. Which is a lot to drink down. Aaron also received an ecocardiogram which is used to detect any defects in his heart. Luckily nothing was found which was good news. Overall Aaron is doing so well and has been awake more during each feeding. We are so proud of the progress he has made. (PICTURE: Daddy holding Aaron)

DAY 4—MONDAY, APRIL 14, 2008

KATIE - Today Katie's blood pressure has been consistently a bit on the high side but not as bad as before.  With all the stress of two babies in NICU it's understandable why it's high.  But she's recovering well, moving around easier, and has more of an appetite.

ANDREW continues to remain stable in his vitals which we are very happy about.  He has had additional swelling because of the pain medication and sedatives Doctor's have been giving him. He looks a bit different from the initial pictures taken of him the day he was born. His bladder and kidneys are also more enlarged because of the extra fluid in his system, but right now that isn't a big issue. Unfortunately because of the extra fluid it kind of masks how his kidneys are really functioning. But until he is off the sedatives and pain medication we won't know truly how well his kidneys are doing. Because of the heavy sedation he is so lifeless which makes it hard to see him like that. In the afternoon he had an ultrasound of his renal area to continue determining how his kidneys are doing. So far they are doing well. Blood tests have indicated that his Creatine levels, which is a protein completely filtered by the kidneys, is still the same at birth at 0.8 which is a good sign. Normal babies have around 0.3. So because the level hasn't gone up it means his kidneys seem to be doing their job. He is also peeing a lot which is also good. So far he is stable and doing as well as can be expected. (PICTURE: Andrew sleeping)

AARON - Today Aaron was moved early in the morning out of the NICU to the Special Care Unit, which means he is doing much better. He has been eating well and so far maintaining his own temperature. During the 9am and noon feeding he was very sleepy and had a hard time finishing his bottle. So the nurses put his feeding tube back in and he finished the bottle through the tube. Also at this time his temperature was also a bit low so he was placed back in a warming crib for a few hours. But since then he has maintained a normal temperature. At the end of the day he weighed about 4 lbs. 10 oz. which is back to his birth weight. (PICTURE: Aaron during one of his feeding sessions...so sleepy)

DAY 3—SUNDAY, APRIL 13, 2008

Today we celebrated one year since Rachel was born.  We are so grateful to have her be part of our lives even though it was for such a short time.  Soon after her birth she returned home to our Heavenly Father.  How grateful we are for the knowledge we have of the gospel and to know we will see her again someday.  We celebrated by enjoying a birthday cake that a friend of ours was so kind to bring us. Thank you!   Even though both Aaron and especially Andrew cannot go home with us right away we feel very blessed to have them.  At least they are both alive, doing well, and give us a lot of hope.  Experiencing such a loss has helped us to appreciate every small blessing.  These twins are miracles to us. (PICTURE: Katie with Rachel)

ANDREW is still doing good and his vitals remain stable.  He was given more pain medication since he was showing signs of waking or in pain (twitching, etc.).  He is still urinating good which continues to be a good sign.  A catheter was inserted so the urologist can know exactly how much urine ANDREW is producing.  He is very swollen and puffy due to the many fluids that are being put into him following surgery. (PICTURE: Aaron and Andrew side by side in the NICU)

AARON weighed 4 lbs. 9 oz at the end of the day-almost back to his birth weight.  He was moved to an open crib (no warmer) so he is now responsible for maintaining his own temperature.  We will see how he does.  So far his temperature has remained stable.  Yeah!  He has been wrapped up really good to help him stay warm.  Today he was very alert during his 6 pm & 9 pm feedings which was lots of fun for us.  Earlier in the day he would drink up his bottle but would do so with his eyes closed and somewhat sleepy.  The amount of his feeding was moved up and he is now eating up to 25-30 CC each time.  He continues to poop and pee good.  In fact he peed on Daddy twice while changing his diaper!  Is this his way of saying, "I love you"? (PICTURE: Aaron in the arms of mommy)

DAY 2- SATURDAY, APRIL 12, 2008

We never though that things can could change so dramatically from one day to the next.  Since their progress is very slow we have to look at even the smallest bit of information as progress (and sometimes there will be setbacks).  It seems like much longer than a day has gone by!

KATIE  is gradually recovering from her surgery.  Today her blood pressure went up to a new high so the doctor was called and blood pressure was put immediately into her IV.  Medicine has been prescribed to take twice daily.  Overall, she's doing well.

ANDREW went in for surgery at 9 a.m. to repair his TE fistula.  ANDREW had received a priesthood blessing the prior evening by his Grandpa Rawlings and his Dad.  They both felt at peace and hte impression that all would go well in the end.  Following surgery Dr. Kogut and her partner came to our room and explained that the surgery went well, his vitals are all stable, and he is heavily sedated and will be for a few days.  Once they opened him up they discovered that the lower part of his esophagus was actually connected to his trachea and the top part dead ended in a sac.  All this was repaired through the surgery.  If ANDREW had not undergone this surgery he would not have lived.  It is amazing what can be done to save or extend lives.  We are so grateful for the hand of the Lord and the many prayers in his behalf.  The urologist- Dr. Close- had  wanted to do another ultrasound today but doctors needed him to recover more from his surgery before too many tests are done.  He urine output is good, though,s o that shows the kidneys are functioning somewhat.  ANDREW is being fed sugar water with electrolytes through an IV and continues to be on the ventilator.

At the end of the day AARON weighed 4 lbs. 3 oz. but it is normal to go down in weight after birth.  He started out the day being fed 10CC every 3 hours- at 3:00, 6:00, 9:00, 12:00 around the clock- from a fast flow bottle.  Nurses have been gradually preparing him for an open crib from an incubator by lowering the temperature while keeping him wrapped up good.  He is peeing and pooping good (never thought we'd be so happy about that!) and was drinking 20 CC at each feeding  by the evening.  Since he was doing so well AARON'S feeding tube was removed at the end of the day and he was put up to me  for a "practice " feeding for only a few minutes so he could get more familiar with m voice, smell, and touch.  We then fed him from the bottle.  AARON is doing very well!

DAY 1 - FRIDAY, APRIL 11, 2008

ANDREW was born first at 10:15 am weighing in at 5 lbs. 4 oz. and was 17 3/4 in. long and has dark brown hair. When he was first introduced into this world he gave a good cry. This brought tears to our eyes as we heard him. ANDREW was the baby that was at one time not expected to live. We felt overwhelmed to know that he is an answer to many prayers and a miracle to us! Soon after being weighed, cleaned up, and held by Daddy nurses took him to the Neonatal Intensive Care Unit or NICU. There they attempted to put a vacuum tube down into his stomach to clean it out but weren't able to do so. The tube would only go down an inch or two and stop. It was soon discovered that through x-rays that he had what is called Tracheo Esophageal Fistula (EAF) which means that Andrew's esophagus was attached to his trachea a few inches up from his stomach. He also had an Esophageal Atreasia-where the upper part of his esophagus didn't connect with the lower part and just ends in a sack. So basically he was breathing into his stomach, so his stomach and small intestines filled with air.  We were given this information by a pediatric surgeon, Dr. Kogut.  She said his defect would require immediate surgery so that ANDREW could eat and take in food.  Otherwise, he would not live long. Surgery was scheduled for Saturday morning at 9:00.  Due to his labored breathing soon after birth ANDREW was put on a ventilator.  One good thing that we are happy about was Andrew peed and pooped- signs that his kidneys are functioning and damage may not be as severe as had been expected.  An ultrasound was done and when the urologist came to our room that evening she said he's got good renal tissue but she still wants  another ultrasound the next day because the pictures weren't as good as she'd hoped.   We think he is adorable!  We are very proud parents! (PICTURE: Andrew at the end of day #1 in the NICU)

AARON was born at 10:17 a.m. weighting in at 4 lbs. 10 oz. and was 17 3/4 in long.  Aaron has light brown hair. Aaron also came out crying which made us very reassured he was alive and breathing.  AFter his initial assessment and weighing by the nurses he was bundled up and presented to Daddy, along with his brother, to hold for a quick photo opportunity. (This is the only time ANDREW's been held by his parents).  His first few hours went very well which pleased us.  AARON had a feeding tube put in him and nurses started him on very low doses of formula-- not more than 10 CC every 3 hours.  He was put in a warmer in the NICU to help him maintain his body temperature.  It was some time in the late evening or early morning that he was put into an incubator, or isolette.  At first, AARON was not next to Andrew in the NICU.  AARON has always been breathing well on his own whereas ANDREW has always had a ventilator from the very beginning..  Soon after AARON was born he had lots of tubes and wires placed on him to help monitor his vitals- heart monitor, respiration, pulse ox (to monitor oxygen levels), blood pressure, an IV, and a feeding tube in his mouth.  Despite all this, AARON is adorable!! (PICTURE: Aaron on day #1 in the NICU)