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.