OVERDUE UPDATE

By now you may have figured out that we have been too busy (and too tired!) to publish any new posts the last three days. It has been wonderful to have Andrew home and not have to run back and forth to the hospital each day. However, we will soon be doing that again for a short time when Andrew has his surgery. This has been a very busy, tiring, hectic, and eventful week so far. Caring for twins is hard enough but when one has complications that needs extra attention it is an added stress. Andrew takes 4 different medications and has the nephrostomy tube that required special care. In addition to that he has had doctor's appointments every day this week. Even though we're not looking forward to seeing him go through surgery again we will be glad when his kidney is repaired, he no longer has the nephrostomy tube and he is back home feeling better. This phase won't be forever. Here's a rundown of this last week. (PICTURE: Binky Brothers - Aaron on the left, Andrew on the right)

TUESDAY 5/27- Steve stayed home from work to lend a hand before Grandma Rawlings came Wed & Thurs from St. George to help out. The twins had a check up with the pediatrician and to get their first set of vaccines. We were impressed at how quickly the nurse gave them. Two shots each in less than 2 seconds! They were resting peacefully one second and the next they were red in the face and screaming. Both Andrew and Aaron were able to be calmed rather quickly after we picked them up and held them close. So far only Andrew seemed to be fussy the next day but has Aaron hasn't seemed to how any reaction to the shots.

WEDNESDAY 5/28- It was a big help to have Grandma Rawlings come from St. George for a couple of days. We only wish she could've stayed longer but we welcome her back anytime! Steve returned to work so Grandma came with me and the twins to an appointment with Dr. Kogut, the surgeon who performed Andrew's TEF surgery. We had called her Tuesday evening about 9:30pm because during feedings the previous two days Andrew had been very fussy. He would begin his feedings calmly and suck down the first ounce or two in about 10 minutes. Then (usually after burping him) he would pull back, arch his back, stretch his neck, and cry. Sometimes he would want more but than after swallowing a time or two he would repeat the same thing. Eventually he wanted nothing to do with the bottle and would be inconsolable. His cry would be one of pain. We couldn't figure it out but if this continued much longer he could become dehydrated because he was far below his normal feedings. When we described this to the surgeon she said she would order and esophogram (barium swallow test) for the next days with a follow up in her office. She said it sounded like acid reflux, which is very common with those who have TEF. Sure enough it was. It's not a surprise but we were hoping he wouldn't have to deal with that. Fortunately, Andrew's food is going down smoothly and the surgery site is healing nicely. Andrew is now taking two medicines for his acid reflux which seem to be helping. (PICTURE: Aaron sacked out in his crib)

THURSDAY 5/29- Today appointments were scheduled for Andrew to have a renal ultrasound and then to take the results to the urologist for her to examine. His right kidney continues to look good and everything is in place for him to have his surgery next Tuesday, June 3. This time he will be at Sunrise, which is a hospital across town. His recovery should include about 3-4 days in the hospital. We won't know until the surgery whether or not the surgeon can actually perform the repair and put in the stint. Andrew will first have a urogram done through MRI to determine what his left uriter looks like and where the blockage is. Depending on the results of the test the surgery will go forward with the repair of the kidney and the removal of the nephostomy tube. We are anxious for this tube to be removed. There have been several times where we have accidentally tugged on it when picking Andrew up and he makes sure we know about it!

FRIDAY 5/30- Today I had to take Andrew across town to the hospital for pre-op lab work and registration. We are grateful to our friend, Barbara, who watched Aaron while we were gone. There were 3 blood tests that the doctor needed and only two were able to be done. He has been poked so many times and had so many IV's put it that it's next to impossible to draw blood from him. He SCREAMED so hard that after the blood was drawn he couldn't even take his bottle because he was so worked up. It took a while to calm him down. I couldn't help crying myself as I watched them do this to him and the pain it caused him. The nurse had to draw blood from three different places and still didn't get enough blood to complete all three tests. Andrew eventually calmed down and slept the entire way home. (PICTURE: Andrew taking in one of his pacifier moments)

Aaron has been a great sport through all this. It's hard for me to have to give so much attention to Andrew right now and not feel like I'm neglecting Aaron. We enjoy having the twins together and comparing differences and similarities in their ears, faces, hands, sizes, etc. We are gradually learning their different personalities and to recognize their cries. They are slowly beginning to hold their heads up and look at us for longer periods of time when we talk to and smile at them.

We love our little boys and are so grateful for them!! Even though it is tiring and hard we wouldn't have things any other way.

FIRST FAMILY OUTING

This morning we were each feeding a baby and not really looking forward to another day of the same thing- change & feed babies, put them to sleep, do as much as we can around the house while they sleep... then do that all over again.  Remember, this is all on about 5 hours of sleep.  If we're lucky.  So we decided to get out of the house and go for a drive in our new van.  We didn't need much motivation to try it out.   After spending about half an hour getting everything we'd need (diapers, wipes, bottles, formula, extra set of clothes, blankets, camera.... the list goes on and on!) we were finally ready! When we put Aaron  & Andrew in the car both were NOT happy.  But as soon as the wheels started moving they fell right asleep. It's amazing how driving them in cars is just like anesthesia. If only you could bottle it and sell as knock out drops for babies.

 

Because it was Memorial Day, our first destination was to visit Rachel's grave.  We had intended on visiting her grave on the one year anniversary (April 13) but I was in the hospital recovering from a c-section and attending to our new babies in the NICU.  She definitely was in our thoughts that day.  As we approached her graveside we became emotional as we thought about the events that transpired a year ago.  I reminded Stave that the spot to the left of Rachel was reserved for what we once thought would be where Andrew would be buried.  The week we learned he had the same condition that Rachel did (first week of Dec. 2007) we assumed the end result would be the same.  That's what the doctor told us and besides, we didn't need telling.  We'd already experienced it last April.  We, of course, were devastated when we learned we could lose another one.  I didn't lose complete hope but just in case I wanted to be sure that Andrew would be buried next to Rachel.  We are so grateful that it didn't turn out the way that was expected.  The tears came as I looked at Andrew and this empty spot and KNOW that a miracle has taken place.  Our prayers have been answered better than we ever could have expected.  A year ago we wouldn't have believed it if someone was to tell me we'd have two beautiful babies within a year.  Absolutely amazing!

Our next destination was Target to pick up a few things and to try out our new Snap and Go double stroller which we think is so cool.  We kept their carrier well covered with blankets to avoid getting germs--we hope.  This would be the first time I'd be pushing a stroller with babies in it. (I'd pushed it around in the house before they were born!).  The entire time at the cemetery and at Target they were sound asleep... almost the entire time.  When we were almost done shopping they BOTH started wailing.  So I wheeled them out to the car while Steve finished checking out.  Back at the van (we LOVE that van!) I was about to change them before getting their bottles together and feeding them but the volume of their crying increased steadily so I ditched that plan and got their bottles together.  When Steve arrived, we each took a baby and a seat on the back row and began feeding.  Following feeding I was changing Andrew and... holy cow, he had the biggest blow out!  I'd heard of babies pooping all the way up the their back, but now I've witness that it actually happens.  He was such a mess and went through two layers of clothes.  I barely had enough wipes to complete the job and fortunately I had a spare outfit in the diaper bag.  Andrew has the opposite problem as Aaron when it comes to pooping.

Before driving to the other side of town to where Steve's father is buried we stopped and got something to eat for lunch and ate it in the car.  Aaron and Andrew slept through us eating our lunch, the entire drive to the cemetery and our visit to Steve's dad's grave.  Too bad it won't always be this easy to cart them around!  Not long after pulling into the garage they began stirring and wanting to eat.  We are so glad we went but we are pooped!  Apparently they were too because they both ate only 1 oz before sacking out.  

And that was our first family outing.  It gave us a chance to use our new van and get out of the house. We learned that we can no longer just put on our shoes and walk out the door!  It was a wonderful feeling to have all FOUR of us together... we felt complete at last.

Some Additional Pictures of the Twins

Top: Aaron - Bottom: Andrew

Left: Andrew - Right: Aaron

Left: Aaron - Right: Andrew

DAY 44 - SATURDAY, MAY 24, 2008

HOME AT LAST!!! HOME AT LAST!!!

The day that we have longed to occur has finally happened. We were able to bring Andrew home today. Katie was able to spend the night in one of the hospital rooms with Andrew as kind of a going home tribute. Unfortunately we didn't know that because she wasn't a patient they couldn't give her any food during her overnight stay. So she was very hungry by the time we got Andrew home. After the usual "taking the baby home" briefing, we were able to leave the hospital about 1:30 pm. We would have been able to leave earlier, but the nurses couldn't find the paperwork stating that he had completed his hearing test. Turns out he hadn't been given one, so they were able to get it done pretty quick. But the search lasted for more than an hour, meanwhile we had to just sit around and wait. When we finally got him secured in his carrier we could tell he was ready to get out of there. He patiently sat in his seat and went to sleep and didn't wake up until we got home. At the hospital we were also given instructions on how to care for his Nephrostomy tube and bag, which is fairly easy to care for. The hospital has also set up a home care nurse which will be visiting about three times a week to check on Andrews condition. We also have to start giving him a liquid antibiotic and vitamins twice a day. (PICTURE: Andrew prepped and ready for transport)

When we finally got both Andrew and Aaron together at home, it had been more than five weeks since they had been in the same room together. We were finally able to see them side by side and be able to compare how each had grown in relation to each other. Aaron has definitely caught up in size to Andrew, but Aaron is still a little bit smaller. We can also see how they truly resemble each other for the first time. We had them laying on the couch both sucking on a pacifier. They each looked up at us and made the same sucking noise at the same time. So far they get along very well with each other and we know they will be best buds before too long. It also has been a bit more work than with just Aaron at home. In the first few hours we could feel the added responsibility and effort it takes to care for two babies now. One alone was fairly manageable, but having another baby at home has been more challenging. At least we don't have to split our time anymore with visits to the hospital. It was actually a bit of a solemn experience when we left the hospital, knowing that we may not see some of the nurses and doctors who we have come to know very well over the past few weeks. (PICTURE: Katie with Andrew is on the left and Aaron is on the right...no wait, Aaron in on the left and Andrew is on the right)

Since Andrew is now home, we will be posting updates as significant events occur.

DAY 43 - FRIDAY, MAY 23, 2008

ANDREW IS COMING HOME TOMORROW!!!

What more can we say?  This calls for a big celebration!  We are thrilled, truly the best bday gift ever.  Today it's exactly 6 weeks from the day Aaron and Andrew were born.  It's been a long six weeks but on the other hand it's gone by FAST. I hope they remember each other.  He will be coming home with his kidney drain (nephrostomy tube). 

I will be staying overnight tonight at the hospital doing what's called "rooming in".  Andrew will stay with me in my hospital room and I will be caring for him the whole time (probably like "normal" deliveries).  Then if I have any questions about caring for the nephrostomy tube, or anything else, the nurses are right there to answer any questions.  Nurses will also show me how to change the dressing  on it and some of the do's and don'ts.  And Steve will get to take care of Aaron by himself tonight. :)  He will do a super job.  And starting tomorrow our hands will REALLY be full.  But we are going to LOVE it (uh, I hope).  No more (for a while anyway) of these daily trips to the hospital back and forth.  Eventually Andrew will be returned for his kidney repair but it'll be just for a few days when that time comes.

Thank you to all of you who so generously watched Aaron while I'd feed and hold Andrew at the hospital.  What a MAJOR help that was!

Extra side note:

(This has nothing to do with what I just wrote but Andrew weighed 7 lbs. 6 oz yesterday!  They are really growing!  Aaron is probably about the same weight)

DAY 42 - THURSDAY, MAY 22, 2008

Wow!  I can't believe it's already been 42 days!  Time flies... seems like just yesterday they were born.  Before I know it they'll be going off to college.  (At least then I'd get some sleep!)   Reality is starting to set in that we will soon have TWO babies.  TWO diapers to change, TWO babies to feed, TWO babies to burp, TWO babies to bathe, TWO babies to dress, to console, etc etc.  And then wake up (that is, if I ever fell asleep!) and do it all over again the next day.  Today Aaron was fussy all day and required a little more attention than usual.  The thought came to me, "What am I going to do when I have TWO of them.?"  And Andrew's going to have a nephrostomy tube that will require a little extra care.  Do I sound a little worried or stressed?  Probably.  But I know it'll be busy, I know it'll be tiring but I also know it'll be double the blessings and double the joy.  I am looking forward to having the babies together, to actually feel like I have twins.  They have already been such a blessing to us.  This is just the beginning of a lifetime of memories and we are ready for it.  After all, it's been a long journey getting here.

Tomorrow is my birthday but it's been so busy that it will most likely be like any other day--feeding, diaper changes, visits to the hospital, and so on.  I was hoping Andrew would be home by tomorrow but it looks like the soonest he'll be home is Saturday.  I'll be "rooming in" (staying in the hospital) the night before he goes home to give me a chance to care for the nephrostomy tube and ask any questions to nurses or doctors.  Perhaps I can celebrate my b-day by staying in the hospital. :)

AARON -  Doing great today, a little fussier and grumpier than usual and a lot more awake.  He's been pretty constipated but after doing a diaper full he feels much better.  Aaron is pretty excited that his brother is coming home soon.

ANDREW - Today he's very excited to know he's coming home soon.  Or maybe it's me being excited for him!  Either way he's doing really well.  Today while I was visiting the hospital, the nurses and doctors discussed his discharge orders-- a home health nurse will be ordered and will come to our house 2-3 times/week to  clean and change the dressing and show me how to eventually do it.  Supplies are being ordered to care for it-- an extra drainage bag, gauzes, & tape are a few of them.  Soon he'll also have a hearing test and a car seat test (he'll sit in his carrier for an hour still hooked up to all his monitors to see if he'll remain stable) which will have to be done before he is discharged.  I am so excited for him to come home.  It'll be a long road ahead for him, and us, but I have doubt we can dot it.  Thank you for your many prayers in our behalf.

DAY 41 - WEDNESDAY, MAY 21, 2008

(PICTURES: Andrew and Aaron are having a grumpy face contest. Please vote for your favorite)

ANDREW - Today Andrew was MUCH happier than yesterday since he is up to his normal feedings.  He also had his IV removed and hope he will be discharged soon!   It'll be a nice   birthday present for me.  When he comes home he will have his nephrostomy tube in place until his surgery takes place.  Tonight both Steve and I were visiting Andrew and doing his feeding and noticed he had several scratches on his face because some of his fingernails are getting a bit long. The hospital has a policy against having the nurses to clip them.  So I pulled out my baby nail clippers from my bag and began clipping away-- a little too aggressively.  All of a sudden I saw blood on his hands and fingers from slicing a small piece skin on one of his his fingers.  I'd better be careful or I'll be charged for child abuse!  I felt so bad... the nurse put a piece of gauze on his little finger and taped it up.  Next time I think I'll use a nail file instead. 

AARON - Although Aaron still sleeps the majority of the time he is beginning to stay awake a little bit longer (20-30 min) after feeding.  He's also holding eye contact a little longer, rather than wandering eyes.  In the middle of the night last night he was awake for a good 2 hours--after feeding he would strain and grunt, then began crying, then calmly lay there, only to do it all over again.  He was extremely constipated and after a little help with a glycerin suppository the floodgates opened, he filled his diaper, and Aaron then quickly fell asleep.  You feel so bad watching him be so miserable.  It wasn't exactly the most restful night for me either!  Before long we'll have TWO to care for.  It'll be busy and tiring but we are excited about Andrew's arrival home shortly.

DAY 40 - TUESDAY, MAY 20, 2008

ANDREW - Andrew's recovery from yesterday's "surgery" is going well.  Apparently, this morning when he woke up he was VERY hungry (since he hadn't eaten since 4:30 yesterday morning) and so angry about not being fed that he let the entire NICU know about it!  He has been fed nutrients through an IV but his normal feeding will return gradually.  Nurses fed him a small amount (about 20 cc) around 11 a.m. but that didn't make him much happier and was simply a teaser compared to his normal 60-100 cc feeding amount.  Shortly after being fed, Andrew was moved from the NICU to the Special Care Nursery across the hall.  When I went to see Andrew around 11:30 he was still very hungry (I would be too if I'd only had a few drops!) and the pacifier didn't help him any.  He's smart enough to know that's not going to satisfy his hunger.  While I was there a pediatric nephrologist came to meet Andrew and see how he was doing.  Since Andrew will need many check ups following his discharge, I'm sure we will become great friends.  We hope Andrew will be discharged within a few days but will need frequent urine tests, blood tests, and ultrasounds.  Hopefully his surgery to repair the left kidney can be scheduled soon.  (PICTURE: Our little happy camper)

(Later in the evening)- He has continued to eat well- is now at 40 cc each feeding-- and still has his IV in.  Most likely it will be removed tomorrow.  He has been very tired all day, which is no surprise after what he went through yesterday.

AARON-  Today Aaron went to the grocery store with me for the very first time and slept the entire time.  It's really nice when they're this age and so portable!  Wait a few months and grocery store trips won't be quite so easy. :)

DAY 39 - MONDAY, MAY 19, 2008

Well we had hoped to have better news, but we know more today than we knew yesterday. Andrew's surgery didn't end up the way we had hoped it would. Initially the surgery was to occur in two phases. The first phase was to conduct a test on both ureters leading from the the bladder to the kidneys using a very thin wire. Under a fluoroscope, the wire will be visible as it is passed from the bladder through the ureter and into the kidney. The wire is to help determine where exactly the location of any constriction or blockage. If the wire was not able to pass all of the way through, the location of any blockage can then be found. The next phase was to repair any blockage or restriction that was found. Andrew's urologist conducted the surgery and in the beginning everything went well. We were able to determine that the right ureter and kidney were functioning very well. The urologist was able to guide the wire all of the way through. However the ureter is attached to the kidney in a slightly different place than where it normally should. Where it is located the ureter kind of curves as it enters into the kidney, which causes a slight bend in the ureter. A normal ureter would usually enter straight into the kidney. The curve in the ureter causes a restriction which reduces the amount of urine that can flow from the kidney to his bladder. We also learned that the perincum (kidney tissue which does all of the filtering function) in his right kidney continues to function very well and the urologist feels that for the short term he may not need surgery. She wants to watch his kidney over time and the ureter may correct itself as he grows larger and gets older.

As for Andrew's left kidney, the urologist was not able to guide the wire completely through his left ureter. She feels that there is a very tiny opening through it, but the wire was just too big to fit through. So without being able to see how the wire passes completely through the ureter, she cannot tell where exactly the blockage is located or how the ureter enters into the kidney. This in turn stops us in our tracks to continue with any repairs. To repair the kidney the ureter would need to be severed where it attaches to the kidney and reattached at another location. But because the location of the blockage in the upper part of the ureter cannot be determined and how the ureter enters the kidney is unknown, the urologist would have to do the repair blindly. She was not willing to risk doing more harm to Andrew until she was able to know where everything was. Unfortunately the radiology equipment at Summerlin Hospital wasn't capable of showing as fine a detail as they needed. Normally the wire method works fine in detecting blockages and the path the ureter takes, but Andrew's case seems to be more difficult. 

So as it stands now, the urologist has suggested that an additional test and second surgery be performed at Sunrise Hospital where they have an MRI that can provide a higher level of resolution to locate the blockage. So the nephrostomy tube draining his left kidney was left in place and he has been returned to the NICU for recovery. Before the surgery they removed the IV in his head, but instead added IVs into both feet and left hand. This was done to provide fluids and medication during the surgery. Also he was put back on a ventilator during the surgery. But because they had a difficult time inserting the ventilation tube into his trachea (stemming from the TEF surgery) they plan on leaving him on the ventilator until tomorrow. This will allow the surgeon that did the TEF surgery time to examine him before they remove it. The plan for now is to let him recover from the surgery and then have him discharged from the hospital as soon he is able. We hope that this can occur in a week or so. However he will still have the nephrostomy tube in place when he comes home. We then can schedule a time when the MRI and the second surgery can take place at Sunrise Hospital.

Before today we could see the end in sight, but now it looks like it will take a bit longer. So this set back lets us know that it won't be as easy for Andrew to overcome this as we had hoped. This means that he will have more tests, more surgeries, and additional stays in the hospital. But at least we will be able to bring him home for a while.

DAY 38- SUNDAY, MAY 18, 2008

ANDREW: Today Andrew continues to do very well and is steadily gaining strength. Every one of his feedings have been within 2 to 4 ounces which is right on target. Even though we try to see him two to three times a day, it has become ever more difficult to leave him at the hospital each day. He is in such desperate need to be held more and shown more affection. He has been in the hospital for more than five weeks now and it is beginning to wear on everyone. But after tomorrow we hope the his remaining days in the hospital will be soon over. Andrew is scheduled to have surgery on his left kidney tomorrow (Monday) at 12:30 pm. So his last feeding from the bottle will be tomorrow at 4:30 am, and he won't be able to eat until about 24 hours after his surgery. He will then be fed nutrients from an IV during that time. We are very glad that they allowed him a couple weeks to gain his strength before his surgery, so his recovery time should be quicker. We are not sure exactly what all will be involved in the surgery, but they will most likely be repositioning one of the ureters which connects his left kidney to his bladder so it will drain better. The surgery is expected to take a couple of hours and his recovery should be only a few days. It is amazing how fast babies can recover from so many things done to them. We will definitely update our blog tomorrow to let everyone know how the surgery went. So we request prayers in everyone's heart for him tomorrow that his surgery will go well and his recovery will be quick. (PICTURE: I may be little but I am a keeper)

AARON: Today Aaron got his first ride in our new mini van when we went to church today. It was SO much easier to load and unload him than ever before. We could tell he likes the new van too. We got kind of surprise from him this morning. During the day we keep him on a 3 hour feeding schedule and last night we fed him about 10:30 pm then put him down for the night. Normally we would let him wake us up when he was hungary again, which usually occurs about 2 to 3 am. Well both of us woke up about 6:30 am this morning looking right at each other and realized neither of us had fed him during the night. We were so surprised that he had slept all through the night without letting us know he was hungary. Although he was definitely hungrier than we have ever seen him before, we didn't mind getting the extra sleep. We don't think that he will be sleeping through the night for another couple months from now, but it is another indication that he is continuing to progress in his development. We keep asking each other to pinch us to see if we are dreaming, because we are so grateful to be parents and to have two beautiful baby boys in our lives. We love them so much and we can't get enough of them.

DAY 37 - SATURDAY, MAY 17, 2008

Look what we bought yesterday!  In order to be real parents you have to keep up with the Jones and buy a mini van.  We now have a 2008 Toyota Sienna XLE Limited. And we love it!  It has 15 cup holders and just about every conceivable gadget except a soft serve ice cream machine (that's coming in the 2009 model). I find any excuse to go to the store (and that's unheard of) just so I can drive the new car.  It should give us more room for the twins. In our current car we can barely fit our double stroller in the trunk and not much else.  We've also got to get the babies loaded and the diaper bag and all the other accessories so nothing else could fit.  So we could forget going on trips anywhere in our current car.  We'd been talking about getting one but decided to purchase it before Andrew comes home.  Which we hope will be soon!

ANDREW-  For someone who has an IV on his head Andrew is doing marvelously well.  He acts like nothing has changed.  The nurses keep him well swaddled to prevent him from pulling on it, which he tried once.  He now weighs 6 lbs. 13 oz. and he was only 6 lbs. a week ago, so he continues to do well. The nurses call Andrew a very hard stick, meaning it is hard to find a good place for an IV. So they had to resort to using a vein in his head. They're also doing all they can to keep the vein open until his surgery Monday.  Although the surgery is expected to be 3-4 hours, the recovery should be only a couple of days and then he MAY be able to come home!!!  I'm trying not to get my hopes up but maybe it would be the best birthday present ever if he was home by Friday.  Today we were able to do 3 visits and he continues to be a great eater and sleeper.  I have to say he is the most content, easy going and beautiful (along with Aaron, of course) baby ever.

AARON-  All the neighbors were outside this afternoon so we took Aaron to meet them all.  I had to agree with them when they commented that he was the most beautiful baby.  Anyone that thinks different doesn't know what they're talking about!  All moms feel their baby is the most beautiful, right?  Aaron has been a little more fussy today but it's probably because he's plugged up and gassy.  I've been there before and it's not the most comfortable feeling.  We love our little boys more and more.  There's just no words to express how much we love them.  We can't wait until we can have them both together here at home! (PICTURE: It doesn't get any better than this)

DAY 35 - THURSDAY, MAY 15, 2008

ANDREW - Earlier today I went to the hospital to feed Andrew and hold him for a while.   When I arrived there were several nurses all gathered around him trying to put an IV in him. Let me just tell you it is not something you want to see.  Andrew was NOT happy.  They suggested I wait in the lobby and they'd come let me know when they were done.  I had no idea it'd take close to an hour.  During that time they had wheeled him across the hall into the NICU because they had better lighting.  When they were finally finished and I was able to see him and do his feeding--by that time it was almost an hour late--I was shocked to see just WHERE they put it.  Of all places to put it, the IV was in his HEAD!  I have never heard of or seen an IV in someone's head!  I felt so bad for Andrew and about cried myself.  While I had been waiting in the lobby the NICU doctor came to tell me just why they were inserting an IV into him.  Apparently Andrew's potassium level had gone up and for a baby with a kidney disorder this isn't good.  They will be giving him some lasic, or diarrhetic, to help bring it down.  The doctor didn't seem concerned and felt that the surgery on Monday may help to return it to normal and if not, there is medication that can.  They will also changed his formula to one that is kidney friendly.  I couldn't believe how quickly Andrew calmed down after the procedure and they told me he hadn't cried as much as expected while attempting to put it in.  You are a trooper Andrew! We love you. (PICTURE: Hey, if you had a bad day like mine, you'd look like me too.)

AARON - Today Aaron continues to do well as can be expected and eat, sleep and (sometimes) poop, what more can you ask for. We just love him so much. (PICTURE: Our little couch potato)

DAY 34 - WEDNESDAY, MAY 14, 2008

ANDREW: Today Andrew is still amazingly such a good and patient baby. After all that he has gone through he had to go through one more test today. Today he had a nuclear renogram test on his kidneys, which determines the function of each kidneys. (We were told that despite having a catheter inserted up his you know what, he didn't cry at all.  The nurses were quite impressed)  The test involved infusing a very low level radioactive dye into his urinary system and instruments detect how effective his kidneys work. The test identified that the output of both kidneys are working just about equal to each other, which means they are both functioning normal. However, neither kidney is draining very well. One good thing, though, is that his right kidney has decreased in size since he was born.  Fixing his right kidney isn't as critical as his left so only the left kidney will be corrected for now.  The surgery is currently planned for next Monday. His left kidney was the one that had to be drained a couple weeks ago and is the most blocked. The plan is to fix the drainage in his left kidney then fix his right kidney in about six weeks to give him time to heal. Even though the surgery is expected to take 3-4 hours Andrew's urologist said that the recovery is very quick and he could be home a couple of days later.  (PICTURE: Andrew and Mom enjoying the moment)

AARON: As for Aaron we never thought we would be so excited about poop than we were today. Early this morning Aaron finally had a bowel movement (BM) all on his own and what a movement he had. It took Katie a while to get him all cleaned up and all his clothes had to be changed. So we hope that he has finally broken his irregularity that he has suffered from for the past couple weeks. Then to our surprise he had another big BM in the early afternoon that made the first one look small. So after changing his formula twice, adding dark Karo syrup to his formula twice a day, tummy messages, and feeding him extra water each day we hope he is on the road to recovery. (PICTURE: Just can't get enough of that face)

Day 33 - TUESDAY, MAY 13, 2008

Sorry about missing our daily post yesterday, but we were both just too tired to update our blog.

ANDREW: Today Andrew continues to do very well. We can never get enough of seeing him every time we visit him in the hospital. However it gets harder and harder to tear ourselves away from him when we have to leave. We can't wait until we can get him home and out of the Special Care Unit (SCU). Each time we visit the SCU, it continues to be is a very noisy place. Just about every time we visit him one of the other babies next to Andrew in the SCU cries so horribly loud. He has his feeding time at the same time as Andrew, so he gets very agitated. We are amazed that Andrew can sleep through it and on the monitors and buzzers that are continually beeping. But Andrew is always very patient and rarely gets very fussy when it is his feeding time. But Andrew should be out of the SCU soon enough. He is scheduled to have a renal test tomorrow to determine the extent of how each of his kidneys are functioning. He is also tentatively scheduled to have surgery next Monday. Yesterday he received a small amount of whole blood to boost his red blood cell count. Over the past couple of days his blood tests revealed that he had a little bit of anemia.  It is very common for premature babies to become anemic.  He is doing much better today and his red blood cell count has returned to normal.

AARON: Aaron continues to be our little peanut even though is growing is size and and is getting more plump each day.   His cheeks are definitely more chubby than even a week ago.  He eats and sleeps very well but has a few more episodes of fussiness and longer waking times.  Perhaps he is more fussy because he is missing his brother.  We are just as excited for Andrew to come home and look forward to the two of them being together again.  Aaron does a wonderful job sleeping while someone watches him when I go to the hospital for a couple of hours. We are continually grateful for their help and support.

Day 31 - SUNDAY, MAY 11, 2008

Happy Mother's Day!  Today was a MUCH better day than last year.  After losing Rachel a year ago and losing my mom when I was young  Mother's Day hasn't always been easy for me.   I never thought a year ago how blessed I would be today to have two newborn babies.  It has been a wonderful day!  

This year I am overwhelmed with gratitude for the blessings I have received.  There just are no words to express how much I love Aaron and Andrew and how grateful I am for their arrivals and great progress.  They have brought me so much joy and happiness in the last month.  Even though Mother's Day hasn't always been easy I can say-- It has been worth it.  And I NEVER though I'd say that!  If you told me in the past that I would one day think that I probably would have  laughed and thought, "Right!"  Well, I've said it and I mean it.  

It has been 1 month today that Aaron and Andrew came into our lives.  They are both doing wonderful!

AARON- This evening we took dinner to his Grandma Ross along with flowers and a card for Mother's Day.  But the thing that made her happiest was to see Aaron and hold him and feed him.  Other than looking at him in his incubator the day following his birth she had never met him.  We were excited to take him to see her and look forward to letting  Andrew visit her once he's home and able to.  We took him to church again today and he continues to draw a crowd.

ANDREW- Both Steve and I were able to make a visit to see Andrew and feed him.  He continues to gulp up all his bottle and never ceases to amaze nurses (and us) at his remarkable progress.   One nurse said today she's known another baby with TEF and Andrew's recovery has been incredible in comparison.  It has been humbling to us and we have no doubt it was due to the many prayers in his behalf.

DAY 30 - SATURDAY, MAY 10, 2008

ANDREW: We continue to be so proud of Andrew in the efforts he is making to overcome the odds. During our visits today he continues to feed really well and if it wasn't for his kidneys he would be home today. He also continues to gain weight and now weighs 6 lbs. 2 ounces. One of the Special Unit nurses, who first took care of him a few weeks ago when he was the sickest, said that she is amazed at how well he looks and is doing compared to when she last saw him. We are also amazed too. We also learned that Andrew is scheduled to have a renal ultrasound on Monday and the test to determine his kidney function on Wednesday. So from these two test we will know whether he will have to proceed to have another kidney surgery on Saturday. (PICTURE: Pacifier...check, wrapped up snug as a bug...check, life is good)

AARON: We are so very thankful for everyone so far who has helped us to watch Aaron so we can visit Andrew in the hospital. It is amazing how wonderful everyone has been in supporting us. All of your prayers and thoughts have really helped so very much. Splitting our time between them has been somewhat draining, but because the hospital is 5 minutes away it reduces the time we are away from Aaron. Overall Aaron is doing better. We haven't resolved the irregular bowels, but he seems much more at ease than yesterday. But we are doing our best to resolve it. He is also beginning to show a few signs of being engaging. He seems to take notice of us for longer periods of times when we hold him. He hasn't started smiling back at us or anything but he is showing us he is progressing in his development. (PICTURE: Aaron's teeny tiny piggys)

DAY 29 - FRIDAY, MAY 9, 2008

OUR FIRST TWINS PICTURE MOVIE

(Made with Apple iMovie)

As busy- and tired!- as we are we wouldn't trade it for anything.  We are so happy and love Aaron and Andrew so much.  They get cuter and cuter each day!  It has now been 4 weeks ago today that they were born-- it has flown by.

ANDREW: Andrew no longer has his feeding tube-  for the first time he has no wires or tubes on his face.  He pulled out the tube himself (way to go Andrew!) and the nurses didn't bother to put it back in since he is doing such a great job at taking his bottles.  Saturday he has a renal ultrasound and next Wednesday or Thursday he has another renal study to determine the specifics of his surgery on the 17th. It's a very real possibility that he could be home in less than 2 weeks- with a full recovery!  We're trying not to put a date to it but I'm hoping he'll be discharged by the 23rd.

AARON: We love having Aaron home and can't wait until they're both together.  Aaron continues to eat and sleep really well and is a very pleasant baby- except when he's backed up (I'm sure 15 years from now he won't appreciate us sharing this information!).  

DAY 28 - THURSDAY, MAY 8, 2008

ANDREW: Today Andrew is doing his very best to impress his parents. Andrew is doing a super job at feeding better, he was able to finish every bottle he was given. Since he has been doing so well it is hard to continue to see him cooped up at the hospital. He has passed just about all of his tests to allow him to go home, but he still has a few test to go through before he can. But we feel that the doctors won't allow him to go home for at least a few days because he still has his kidney problem to overcome. He currently has renal ultrasound test scheduled for next Wednesday and another test to determine his kidney function soon after that. We aren't sure yet if he will need kidney surgery, but if he does they have tentatively scheduled one on May 17. But he is still a joy to see every time we visit him in the hospital. We learned that Andrew now weighs 6 lbs. 0.3 ounces, so he is gradually gaining weight. Some of the special care nurses have said that he is also one of the easiest babies to take care of and that he rarely cries. He spends most of the time sleeping away in his little corner (his lucky corner) of the Special Care Unit. Sometimes he will stay awake for a while and just calmly watches things that go on around him. He is also very patient around feeding times and has never demanded to be fed. 

AARON: Aaron had another visit with the pediatrician today and so far he is right on schedule with his growth and health. He now weighs 6 lbs. 0.5 ounces and 19 1/4 inches long and has gained a full pound and grown a 1/2 an inch since his last visit two weeks ago. He now weighs slightly more than Andrew. The pediatrician recommended adding a teaspoon of dark Karo syrup to his formula twice a day to help him with his constipation. So we are endeavoring to work on this. Overall he has been sleeping very well today and he is also making it easy on us for now to care for him. 

DAY 27 - WEDNESDAY MAY 7, 2008

ANDREW - Every day Andrew makes us so proud of him in how he continues to get better. Even though his efforts are slower than Aaron's in feeding from the bottle, today he continued to improve in drinking better. He has had fewer times where the nurses had to feed the unfinished portion of his bottle using the feeding tube. A couple physical therapists from the hospital also visited Andrew today to help him improve his muscle tone by exercising his neck, arms and legs. Babies who have to spend a lot of time in the hospital need some help to keep their little bodies limber. Since Andrew has been in the hospital for almost four weeks now and he mostly lays in his bed all day he needs some exercise. We try to visit him as often as we can and get him up and moving, but he still needs some extra help. They gave us some information to help us do a few exercises when we visit him. But overall he is doing great. Other than the Nephrostomy tube, he looks like a normal baby and continues to be as cute as ever. Over the past week or so, the swelling in his face and body has significantly decreased and we have determined he looks more like Steve. We also thought that his hair was light brown, but his hair has more red in it. We hope to hear from his Urologist soon, so we can begin planning for the additional test and surgery(s) he still needs. (PICTURE: Andrew cuter than ever)

AARON - Today Aaron is also doing well. So far everyone who comes over to watch him while Katie visits Andrew in the hospital just falls in love with him instantly. He produces so many different facial expressions and cooing sounds that everyone can't get enough of him. Today a friend came over to watch him and she just couldn't put him down and he spent the whole time in her arms. Needless to say he didn't get much of a nap during that time! We are so grateful for all of the friends and family who have taken the time out of their days to watch Aaron. Unfortunately his constipation continues still. Occasionally he will get fussy and let us know he is uncomfortable. So we have had to intervene a bit with a few glycerine suppositories which help, but we haven't been able to cure him yet. The physical therapists visiting Andrew today showed Katie how to massage his tummy to help things move a little better. So we have been giving him tummy massages every time we change him. He also has an appointment with his pediatrician tomorrow, so we hope he can help him. But overall he is sleeping well and feeding well, so he remains in good health. (PICTURE: Aaron in a blissful sleep...thanks Amy L. for the pictures)

DAY 26 - TUESDAY, MAY 6, 2008

ANDREW - Today Andrew continues to do very well and is getting plenty of rest. He has fewer wires and tubes connected to him than he did just a couple weeks ago. Sometimes during our visits he is awake and we get to see his beautiful eyes. But sometimes he is fast asleep and we hate to wake him to change his diaper and feed him because he looks so peaceful. The nurses have been taking very good care of him during his stay in the Special Care Unit (SCU) and they really treat him like their own. Although it sometimes seems that it is more noisy in the SCU than it was in the NICU, because the babies there are usually very healthy and are just waiting to get stronger before they go home. So many of the babies have well developed lungs (and love to use them), but Andrew seems to sleep just as well there as he did in the NICU. In fact he seems to sleep a lot better better he feels so much better than he did before.   It is sometimes like a shell game in the SCU, they like to move the babies around in their cribs once in a while. There are three separate rooms in the SCU where the babies are kept. So we are never too sure which room he might be in from day by day. But so far he has stayed put for the last couple of days. The first time we discovered that they move them around, we went to the crib where he was the previous day and found a different baby in the same place. At first it was a bit unnerving to think your baby has gone missing, but the nurses quickly pointed us the right direction. Most of Andrew's feedings have gone went very well today and he was able to finish several of his bottles, so we know that he is making great progress on a daily basis. They also started to give him a vitamin supplement twice a day, which helps us feel very confident that his esophagus is healing nicely.

AARON - Today Aaron never ceases to amaze us. In spite of the challenge it is to be a newborn baby, he has to deal with two absolutely clueless parents on top of everything else. But he just takes everything in stride and doesn't complain very much. Each little challenge we have faced with caring for Aaron has seemed like an insurmountable problem. So thank goodness for Grandma Rawlings who helps us and guides us through this uncharted journey called parenting. It is comforting to know that she is only a phone call away. In spite of the challenges we are having with his constipation and the occasional fussiness, he is overall a very content and mellow baby. However we know that as he gets older our content and mellow baby may change, so we will remember those quite peaceful early days and continue to love him just the same. On one hand we can't wait to see both boys grow up and see how they turn out, but on the other hand we know that as newborns this is the most special time in their lives and we want to enjoy every minute of it. 

DAY 25- MONDAY, MAY 5, 2008

Update coming soon.... 3 hours of sleep last night doesn't give us much energy this evening to type it up!

So do you want to know the reason for only 3 hours of sleep??  We now know what it's like to have a middle-of the-night-run-to-the-store... for suppositories.  Not for Steve or myself but for Aaron.  He was miserable (and so were we).  It was about 3:00 a.m. before he was finally able to relieve himself of a couple of days.  I think we learned our lesson the hard way.  Prevention is the way to go.  Unfortunately, Aaron (and Andrew) will have to be completely formula fed after the first two weeks.  Long story and I didn't have much of a choice.  So constipation is something we'll have to deal with more than we'd hoped.  Otherwise, Aaron is doing very well and  becoming more responsive each day.  

ANDREW- Forget the idea from yesterday about him being able to go home as soon as he's able to eat without falling asleep each time.  In order to not disappoint ourselves we won't put a time table on it.  He's still scheduled to have his kidney surgery in 12 days but he still has a way to go before he's feeding completely from a bottle. And it will actually be a good idea to stay there until after the surgery-- his post-op care will be in NICU/Special Care rather than in Pediatrics.  Andrew is now 5 lbs. 15 oz. and his vitals continue to remain stable.  The reason his weight has decreased somewhat is due to swelling going down.  I wouldn't be surprised if Aaron weighs close to the same amount and Andrew.  We are visiting Andrew at the hospital as often as we're able.  Thanks to so many wonderful friends I am able to go to the hospital during the day and Steve has been stopping by on his way home from work.  Then in the evening around 8 pm either one of us will go or we both go (again, thanks for wonderful friends!).  

We love these boys so much and are so grateful for the joy they have brought into our lives.  Thank you so much for your many prayers.  Miracles really do happen!

DAY 24- SUNDAY, MAY 4, 2008

ANDREW-  Earlier this evening we received a phone call from the NICU telling us that Andrew has been transferred across the hall to the Special Care Nursery.  Wh hope that his is next transfer will be home very soon!  We were told by the nurse at our visit tonight that as soon as he is able to completely nipple (feed from the bottle) his entire feeding he will be able to go home.  If that happens he may be able to go home in a couple of days!  He would still have the nephrostomy tube for draining his left kidney and we would be taught how to take care of it before bringing him home.  However, the urologist and the NICU doctor will have the final say about when he goes home.  Andrew is tentatively schedule for kidney surgery on May 17.  Following surgery he would either return to the NICU for post-op or be put in the pediatric unit.  Although we have been very pleased with the care he has received in the NICU an advantage to being in Pediatrics would be a private room that we could stay with him in.  Andrew is continuing to do amazingly well!  He is now nippling from the bottle at most feedings and sometimes sucking it all down in only 10 minutes.  But he sometimes poops out and can't finish his bottle. The remainder gets fed to him through his feeding tube.  His hair is a light brown color and he has a lot of it.  We can't wait until his arrival home-- we will have our hands full but we are looking forward more to having him home. (PICTURE: Andrew just after a tasty meal)

AARON-  Today Aaron went to church with us for the first time!  He did remarkably well-- no surprise that he slept the entire time.   I doubt 9 months from now it will be that easy!  We will be taking it slow in bringing him to new places and people.  Despite warmer weather and lower chance of catching something we are still cautious at this early age and his small size in exposing him to much of the outside world. We worry that he may get sick this early in his development.  Aaron is gradually getting used to the car seat.  When we first buckled him in prior to leaving for church he screamed (see the picture) but eventually calmed down.  We have also been very fortunate up to this point that he is consistent is letting us know when he is hungry.  He is a very good baby!  We look forward to having both Aaron & Andrew together very soon. (PICTURE: Aaron just loving that car seat)

DAY 23- SATURDAY, MAY 3, 2008

ANDREW - We are in a sort of holding pattern for the next couple of weeks with Andrew, because doctors are letting Andrew rest and heal before he has any more tests. Plus Andrew's Urologist is out of town for a week, so there may be a few days here and there that we will not have any new news to post. Not much will be happening until around May 17th, when his renal scan and kidney surgery is tentatively scheduled. The past couple of days Andrew has been very responsive. In fact, yesterday when Steve went to visit him he says that when he went up to his crib, Andrew opened his eyes... and smiled! I've seen Aaron smile before too but I'm guessing he had gas (I know it makes me smile too.). Anyhow, this afternoon when I was at the NICU Andrew continued to look at me and followed my movements as I took his temperature and changed his diaper. The nurse who was assigned to both babies the day of Andrew's surgery came over to his crib and was AMAZED at his progress. Last time she saw him he had recently come out of surgery, he was quite swollen, and was on a ventilator and was very sedated. I am continually grateful for his miraculous progress. Today Andrew pulled out his feeding tube on his own, which gave Andrew's nurse a bit of a scare. The nurse had to order an x-ray to ensure that the premature removal did not damage his healing esophagus. Luckily there didn't appear to be any damage and the nurse was able to re-insert the feeding tube. So this was the only drama that occurred today. But overall he continues to be doing very well and we are working hard to ensure that he gets the rest that he needs. (PICTURE: Andrew's new crib without all of the special equipment)

AARON- Yesterday Aaron's umbilical cord fell out, which was a big event for us. He now has the cutest little outie. He is also doing very well and continues to be sleeping and eating very well. He has been more sleepy today, which we attribute to a growth spurt. We are amazed at how fast he is growing. We keep reviewing the pictures we took of him during his first few days, and he has definitely getting bigger. Tomorrow we are planning to take him to church with us for the first time. Since all he does is sleep between feedings, I don't anticipate any problems to arise. With a newborn of only 3 weeks what problems could occur anyway? Except maybe a big diaper blowout. (PICTURE: Aaron with his shirt saying "Crying it gets the job done")

DAY 22- FRIDAY, MAY 2, 2008

Today it has now been 3 weeks since their births! However, if they'd been born on their due date they'd still be a week from being born. I'm sure glad I didn't have to wait until then. I would've been miserable!

ANDREW- Today in the NICU nurses played "musical cribs" with Andrew. This morning when I went to visit Andrew he was not in his lucky corner anymore. He had been placed in an open crib rather than in the isolette and was now in a nearby corner. Then later in the day he was moved to a different location in the NICU and this evening when I went again he was being moved back to the spot near the lucky corner. When I mentioned to the nurse that he was no longer in the lucky corner she said she hoped there was more than one lucky corner there in the NICU. I do too! Andrew's lucky corner is a special corner to us though. Almost 3 years ago some friends of ours had their daughter in the very same corner for almost 3 months- and she did remarkably well. NICU doctors are considering moving Andrew across the hall to the Special Care Nursery, one level down. However, due to his nephrostomy tube (and all he's been through) they will ensure that he still has a Level 3 nurse. The NICU is expecting some more babies-- including a set of twins at only 25 weeks gestation. So doctors and nurses were scrambling around today getting ready for them and other new babies and shuffling cribs around. Right now things are temporarily on hold with Andrew for a couple of reasons. The urologist, who will be the one overseeing any kidney tests and surgeries, is out of town for a week. She wants to wait to do the surgery until he is at least 5 weeks old-- 2 weeks away. I can be impatient at times and am very anxious for him to be discharged but this will allow him time to continue healing from the TEF surgery and grow stronger. He is slowly improving on the bottle feeding. However, he still struggles on the sucking, swallowing, and breathing all at the same time. EAch day there's small improvement. It's just going to take time. At last check (last night) Andrew is now at 6 lbs. 2 oz., down slightly from the night before.

AARON- We are not sure exactly how much Aaron weighs but today I took an informal weight. After stepping on the scale by myself (I am keeping that number confidential!) I then weighed myself again while holding him- when he was wearing only a diaper. The difference- 5.8 lbs. So he's roughly 5 1/2 lbs. That's about what I expected. He's continuing to grow stronger each day and we will probably begin taking him places a little. It is so fun to have him home with us and we love him more and more each day. We look forward to having Andrew home eventually (3 more weeks maybe??) and having them together again.

DAY 21 - THURSDAY, MAY 1, 2008

I can't believe it's already May!  We now have to say, "Last month...." when referring to having our babies and all that's taken place.  Time flies when you're busy (and not getting as much sleep!).  Fortunately there's no big changes but when they're this young changes seem to happen every day.  Anyway, here's the update...

ANDREW-  Today when I went to the hospital for my daily visit (thanks to our many great friends who volunteer to watch Aaron while I go) I got lucky-- he was wide awake! At least for a little while.  I go at one of his feeding times and if he's awake then he gets to do as much from the bottle as he can.  What he can't do is put down his feeding tube.  So far he's had to have it through the feeding tube each time I've been there.  He was able to drink down 15 cc out of the total 50 cc that he gets, but it's more than what he's ever done when I've been there.  His nurse also said she doesn't see why he can't be moved to a crib (has to be approved by the doctor though) because he is doing so well.  Andrew is now stable and is monitoring his own temperature very well.  It's amazing to see the progress he has made over the last 3 weeks. (PICTURE: Andrew sleeping in the arms of Daddy)

AARON- Aaron has now outgrown his preemie clothes.  When I put a preemie outfit on him the other day I couldn't snack the top button for fear he'd choke to death.  So I put him in one of the newborn outfits and he drowns in it.  I have no doubt he'll grow into them soon.  I'm don't know what his weight is exactly but I'm sure it's close to 5 1/2 lbs.  Still very small.  Especially considering that I was twice that when I was born-- 3 days early.  My poor mother! (PICTURE: Aaron trying out his new swing)