Thursday, May 28, 2009

New Cardiologist and Mommy Meltdown

Update from Thursday, May 28 - May 31, 2009 - We met with Elle's outpatient cardiologist on Thursday. His name is Dr. Wolfe and thankfully he is at the TCH on 1960 - so I didn't have to drive downtown. It still took me 2 hours to get everything together for our office visit though! Both Lee and I are extremely pleased with our choice in cardiologist - he seems like an extremely nice man and unlike our pediatrician visit - he knew and had reviewed Elle's history and asked us about it. He said we were famous and he had been receiving phone calls about our little princess! That was so good to hear - and it was the first thing he told us as he entered the room. Elle's oxygen saturation levels were great and her chest x-ray looked fabulous too. The office visit lasted only about 20 minutes - but Dr. Wolfe sat and talked with us for over an hour. We will be seeing Dr. Wolfe monthly until it comes time for Elle's major heart repair. Right now, it looks like the major repair will be around September but we won't know for sure for several months. I am still recovering from a "mommy meltdown." It started Tuesday night when I tried to breast feed Elle. She had done great at the 6:30pm feeding and had latched on for about 5 minutes. That's huge for Elle! I thought for sure the 9:30pm feeding would go as well as the earlier one had. Nope! Elle screamed for 10 minutes solid and when I say screamed - I mean mouth wide open but no sound coming out - turning purple kind of screaming. Of course I got frustrated and ended up crying myself to sleep that night. Wednesday wasn't much better. Each feeding, I usually start off about 30 minutes early and we start with trying to breast feed and if that doesn't work - we work with the bottle. Each time I tried to breast feed her, the screaming would start again - it was like I was hurting her. By the time Lee got home Wednesday night I was ready to cry and I eventually did lose it. I hate Elle's stupid feeding tube and I hate the fact that she won't take a bottle or breast feed. Never in a million years would I have thought that I would be using a feeding tube and machine to feed my baby. Lee did his best to calm me down - which I greatly needed. It's taken me a few days to recover from the last mommy meltdown. Every time she starts screaming when we are working on feeding, I just get so upset and frustrated. Frustrated that she won't take the whole bottle or let me feed her and frustrated that we have to use a machine to feed her. This morning I was sitting in our backyard on the patio and Lee has turned on KSBJ (the Christian radio station) and I was singing Blessed Be His Name to Elle. It was just the two of us enjoying some mommy/daughter time. The whole time I was singing to her I was making a list of the pros and cons of her feeding tube. The pros far outweigh the cons - and I am now coming to terms with the tube. PROS 1. We don't have to wake her up to feed her - just hook her up to the machine and the feeding begins 2. I know exactly how much I am feeding her 3. Administering her meds is easy and I know that they are going straight to her stomach 4. She is still getting breast milk and is getting her nourishment 5. We can travel with the machine and I can start the pump and drive if I needed to 6. It's not hurting her 7. When Elle has her major repair of her heart done in a few months - the feeding tube will already be in place so it will be one less thing to worry about 8. If anyone ever needs help operating a Kangaroo pump or cleaning a g-tube - I know how to do it CONS 1. It's a machine 2. I feel like I am missing out on a big part of being a mom 3. The tube hanging out the bottom of her dresses doesn't exactly go with her outfits I decided to go to church this morning and Lee spent the morning with our little princess. Before I left, he came in and told me that he thinks we are great parents. He knows I have been struggling with the tube lately and hearing his confidence helps me to start thinking clearly again. He said that in our situation, lesser people would have given up - but we haven't. We are good parents (at least the best that we can be)! We have been there everyday for our little lady and we have loved her more in the last 10 weeks than some people feel in a lifetime. On my way home from church an announcer on the radio said something about being normal and it clicked with me that feeding tubes, feeding machines, cardiologists, audiologist, genetics, ents, surgeons, anesthesiologists, hospitals, doctors, nurses - those are our normal. They might not be every one's normal - but they are ours. Like we have said in the past - it is what it is. The great news is that we go to the doctor on June 4 to have the long tube that is currently coming out of her stomach taken out and it will be replaced by a button. I have no idea what it is going to look like - but it can't be worse than a 10 inch tube coming out of her stomach. As much as I hate the tube - we are still working with the bottle and trying to breast feed - although she screams during the breast feeding - she is doing better with the bottle. She is now averaging 20cc instead of 10cc which is awesome! I continue to pray that Elle gets stronger with each passing day - feeding tube and all. I pray for peace and strength for Lee and myself. I pray for a quiet mind for me that I might look for the good in all the situations we face and never the bad. I have a ton of pictures to post - but I first have to figure out how to download them off my phone. Once I can figure out how to do that - the picture onslaught will begin! Elle has changed so much in the last week - she changes everyday and I am already jealous of her looong eyelashes - she is such a pretty little girl (but I'm not bias or anything)!

Tuesday, May 26, 2009

Ode to the 80's

It seems our little princess can only wear tube socks. Her little legs start going a mile a minute and before we know it - both socks have been flung off and are no where to be found! Lee finally had enough of the disappearing socks so he found the tallest pair of tube socks that would fit her and wouldn't you know it - the socks stayed on for the entire day...that was definitely a first. Of course, the socks aren't the most fashionable things for our little diva to wear - I think she looks like a basketball player from the 80's!

This past Memorial Day weekend was peaceful to say the least. We didn't do anything! I wish I could say that I was super productive but the answer to that is going to be a resounding no. I did spend Saturday morning with 2 of my wonderful friends who treated me to a manicure and pedicure. Thank you Angelle and Jess!! I definitely needed to get out of the house for a bit. Elle is slowly but surely figuring out the bottle. She is now averaging 20cc with every feed so that is awesome! She has also figured out that if she cries - she gets picked up - so she is pretty much held the entire day. Lee kept asking me over the weekend if she usually cried as much as she did. I could only respond that she's a baby and babies cry! Maybe she doesn't like watching HGTV or the Style channel all day and is just voicing her displeasure with a non stop onslaught of Design on a Dime and Clean House!!

I want to thank my wonderful friend Annalee for our amazing blog re-design. It is fabulous..and designed by Fabulous K Creative. I almost cried when I saw the finished product - it is wonderful!!! I told Annalee I wanted a blog that was "happy" and I definitely think she and the wonderful designers of Fabulous K delivered!! Thank you soooo much!!

Sunday, May 24, 2009

You've Come a Long Way Baby!

Saturday, May 23, 2009 was Elle's 2 month birthday. I was looking through pictures and realized just how far our little princess has come. She is truly a miracle baby and we are so blessed. Some milestones (good and bad) in Elle's first 2 months: * Born March 23, 2009 at 7:34pm * Stopped breathing around 10:00pm on March 23, 2009 and had to be intubated * Stopped breathing on Thursday, March 26, 2009 after being extubated * Stopped breathing on Wednesday, April 1, 2009 after having her PICC inserted (this was also the episode where the doctors realized Elle's nose was completely blocked) * Tuesday, April 7, 2000 - had nose surgery to create holes in her nose so she could breathe and had tubes inserted into her nose to keep the holes open * Sunday, April 12, 2009 - Elle's original due date and her first Easter * Monday, April 13, 2009 - had her first heart surgery to insert a BT Shunt into her heart to help the oxygen rich blood flow better to her body * Thursday, April 23, 200 - Elle's 1 month birthday! Moved from the NICU to the 15th floor * Wednesday, May 6, 2009 - Had surgery to insert g-tube and remove stents from her nose * Sunday, May 10, 2009 - My first Mother's Day! * Thursday, May 14, 2009 - RELEASED FROM THE HOSPITAL!! * Sunday, May 17, 2009 - 1st bath at home!! * Monday, May 18, 2009 - 1st trip back to the hospital as an OUTPATIENT! ABR hearing test showed moderate hearing loss which means pink hearing aids for our little princess * Saturday, May 23, 2009 - 2 MONTH BIRTHDAY AT HOME!!!

Thursday, May 21, 2009

The Outfit Says It All

Thursday, May 21, 2009 - We have officially been home a week! This motherhood thing is incredible. Never in my life would I have imagined that sleep deprivation would be so rewarding. Elle is doing well - we have upped her bottle feeding from twice a day to 4 times a day. I don't know if the doctors would be ok with this - but she starts screaming about 30 minutes before she is supposed to eat so I started giving her a bottle before her tube feeding starts. She is getting better with the bottle - but it is still minimal. She is averaging about 10cc with each bottle. She acts so eager to take the bottle and every time I think she is going to finish it...but no luck yet. Hopefully it will just click with her and one day she will wake up and take her entire bottle. That would be so nice! We will keep working and praying!!
1 week down..only 5 more to go until quarantine is over!!

Wednesday, May 20, 2009

Blurry Days

Update from Tuesday, May 19 - Wednesday, May 20, 2009 - WOW! I am still in shock that we have almost been out of the hospital for a week now. I spent the day today scheduling Elle's follow up appointments with all our various doctors. We are booked for the next month with doctor's visits! Lee wanted me to post a picture of Elle's scar from her first heart surgery. You can see her scar underneath her arm. It's healing very well but we will see what the cardiologist has to say when we see him next week. Tuesday and today have been relatively uneventful days. Elle likes to stay up all day long which means little rest for me! Thankfully my mom comes and helps during the day and our wonderful neighbors are making us dinner every other night. We are so thankful for everything!! I never realized the amount of laundry and dishes it would require once we got Elle home! This is insane! I absolutely hate a dirty kitchen and stuff all over the counter tops - but I can't even see our counter tops right now because they are hidden under bottles and syringes (all clean of course)! As soon as I put everything up - it seems like the sink is full again!! I'm confident that we will soon get into a better routine and I will be able to spend some quality time cleaning out cabinets and make room for all Elle's accessories. Since she came a few weeks early, the cleaning out of the kitchen cabinets to make room for the bottles didn't get marked off the to do list. Last night was the first night we let Elle sleep in her pack n play in our room. Since Thursday night I have been sleeping on the floor in her room. For those of you that know me - it is not surprising that I was sleeping on the floor...I have a tendency to do that. The night went ok - so we will see how tonight goes. I am so scared that I will get too comfortable and not wake up to feed her! Lee and I have a system - he takes the 9:00pm feeding -I get the midnight and 3:00am and Lee gets the 6:00am. It's worked out great so far! Please pray for Elle's cousin, Witt. He had a g-tube put in yesterday by the same surgeon that put in Elle's. He also had the same anesthesiologist that Elle had for her nose surgery. We're keeping it in the family! He's still recovering from the surgery and will be for the next few days. You can follow his progress at www.wittharrislupher.blogspot.com.

Where Have the Days Gone?

Update for Sunday, May 17 - Monday, May 18, 2009 - My how time flies when you are having fun (or not sleeping so everything runs together)! Elle, Lee and I are all slowly getting accustomed to being our little family. Sunday night Lee and I gave our little princess her first bath. As most new parents, we wanted to capture the moment on film. And of course, because we have taken pictures of our little beauty everyday - Lee started to get the first bath on video and the memory card is full! So - we only got a portion of bath time on caught on camera. I guess it is now time to sit down and make cds of all her pictures!

video

After her bath, Lee and I changed the dressing around her g-tube. This was so nerve racking! We noticed that the incision looked red and there was some gross stuff coming out of it. I can honestly say that how the next hour transpired solidified my faith in Texas Children's Hospital and the wonderful staff. I called the pediatric surgery phone number we had been given. By this time it was around 10:00pm. A receptionist answered - I told her that Elle's incision sight looked infected. She told me that she would deliver the message to the on call surgeon and if I didn't receive a phone call within 15 minutes - I needed to call back. Five minutes after I hung up the phone, I received a phone call from the operating room - the on call surgeon was in the middle of a surgery - but he had his nurse call me to tell me he would be finished in 30 minutes and he would call me back. Five minutes after I got off the phone with the nurse from the operating room, I received a phone call from the receptionist I had originally talked to. She wanted to verify that I had heard from the on call surgeon. The on call surgeon called me back within 10 minutes and asked about Elle's incision. I was so impressed with how the whole situation transpired! The surgeon told us to wash the incision sight with soap and water and told me to bring Elle in on Monday morning at 11:00am. I am so thankful we have wonderful people like the night staff that were working on Sunday night to help us through situations - no matter what the situation! I still (three days later) can not get over how prompt they were and how thorough they were in making sure we were taken care of. Monday morning was an event I don't think I will soon forget. Lee's mom came over early to help take care of Elle. I was so thankful she came early because it allowed me an extra hour of much needed sleep! I finally got up and started to get all of Elle's medicines together. I quickly realized that I had not allowed myself enough time to get Elle, Elle's stuff and myself together to get out the door by 10:00am to make it to our 11:00am appointment. It really does take 3 hours to gather everything up and walk out the door! Vickie had to leave and as she was leaving, my mom was walking in the door to help me with Elle. By this time it is 9:00am and almost time to sit Elle down for breakfast. I had my mom hold Elle while she was eating while I ran (yes - literally ran) around the house gathering up everything we were going to need for the day. This was going to be our first "real" outing (I'm not counting the dr appt we had last Friday). I also had to pump - so I'm in Elle's room pumping and gathering up the things that needed to go into her diaper bag when I made the realization that I totally chose fashion over function when I bought Elle's diaper bag. It's a really cute Kate Spade bag with blue and white stripes and red accents - totally adorable...but... It didn't hold enough stuff! So then I had to run and find my big purse and started throwing stuff in there too! Not to mention, I had to load up the feeding pump, get the milk together that we were going to be needing for the day (we were going to be at the hospital all day because Elle had an audiologist appt at 2:00pm) and figure out how to use the new stroller! Ahh! I'm getting stressed out just writing about all that stuff! My mom and I managed to get out the door at 10:30am and made it to Elle's appointment with the pediatric surgeon about 15 minutes late - so it really wasn't all that bad. I must say that while my choice in diaper bags is not all that functional - I did make a great decision in getting a "Snap N Go" stroller. It is smaller than Elle's normal stroller - so it was much easier to maneuver in the hospital and in the waiting rooms...plus it held all our stuff! Again, I was impressed with how TCH outpatient operated. We got to the pedi surgery clinic and they ushered us back to a private room since Elle is a heart patient and can't be exposed to a normal waiting room. We didn't have to wait too long before Dr. Minifee, the on call surgeon I talked to the night before came in and checked on Elle. It was pretty funny because Elle held her dress up for the doctor to look at her g-tube. Dr. Minifee said we caught the infection before it got too bad and started her on antibiotics. It was a quick in and out type of appointment. We also made our appointment to go back and see Dr. Wesson on June 4 to take out her feeding tube and replace it with the button. We had a few hours to kill before our appointment with the audiologist. I took Elle to the milk bank so I could pump and set up her feeding pump to get her fed. As soon as I walked in the door all the ladies asked me what I was doing back - I proudly told them - we're outpatient now! They confessed that they always knew my milk when I dropped it off because I used pink pen on all my labels. It's the little things! Since we didn't want to expose Elle to a whole bunch of people, my mom and I hung out around the milk bank in the hallway that connects TCH to St. Lukes next to the NICU until our next appt. We ran into a mom and dad of another heart baby that we had become friends with. They are waiting for their 12 week old baby to undergo a heart transplant. All I can say is please pray for ALL the families that are in TCH. They are all so strong - but prayers are always appreciated. The audiologist appointment was not what I expected it all. It was 3 hours long! Elle didn't do so well because the test requires her to be completely asleep. She doesn't do well with sleeping during the day so we have to go back in a month to continue the test. The audiologist was able to give us an answer on Elle's hearing. She has moderate hearing loss and will need hearing aids. However, she can still hear. She can hear when I sing to her and can hear when we talk to her - it most likely sounds like a whisper to her though. She will be fitted for hearing aids in about 2 months when she is 4 months old. I was so thankful my mom was there. As Elle was undergoing the test, my mom was able to see the computer screen. Since her background is in Deaf Education - she was able to explain what everything meant to me. She was greatly optimistic about the moderate hearing loss so I am optimistic too. The audiologist told us they even make pink hearing aids...I wonder if those will be over the top for our little girly girl?

Sunday, May 17, 2009

Our Testimony

During our stay in the hospital, Lee and I received many comments on how we handled our situation. Not just through the blog or via email, but people would come up to us in the NICU, CVICU and the 15th floor and comment on how we handled Elle and Elle's situation. I guess I just assumed that any other set of parents would have acted the same way - but I guess not. In one particular instance, one of the wonderful people in the NICU came up to Lee and I and told us that she wanted to commend us on our attitudes surrounding Elle's condition. I told her that we had known while I was pregnant that Elle would have congenital heart disease so we had prepared ourselves for whatever the Lord gave to us after birth. She said that in all her years of working with sick children, we stood out. Our family stood out. Not everyone reacts to their baby's situation in the same way we did - even those that knew about the condition prenatally. We told her that a long time ago, we gave our pregnancy over to the Lord. It is what it is and we can't change the situation by being upset - we have to live in the moment and live in the glory of what God created. He created our perfect little angel and yes she does have medical conditions - but she is EXACTLY how God intended her - and how can anyone be upset about that?! We were even asked to speak with another mom whose baby was born with the same condition as Elle. Our nurse wanted this particular mom to be comforted by us and in her words "Y'all have been so strong and encouraging I want her to meet you and see your strength." We all (our parents and Lee and myself) had the strength and courage to face each day in the hospital (and everyday for that matter) because of our faith in the Lord. By everyone's reactions to us - I'm thinking that we were living testimony of the wonderful things He has done! Granted, there are times where it hurts and there is no way to hide that. There are times where I question why this has happened to us. But it is pointless to even think like that because we will never get an answer. I say that - but I think Lee and I did get an answer as to why everything has happened the way it has happened. Before we left the hospital, we were visited by someone who has come to mean a lot to Elle, Lee and myself. She is one of the most compassionate, kind, beautiful people that has come into our lives. We have been so blessed to have known her. She came to see us and after a few minutes of catching up, she told us that in the near future, she and her husband will be traveling down a very similar road as what Lee and I have traveled. She wanted to know how we did it. How did we keep up such a good attitude - how did we exude the faith and how did we cope with having a baby with heart problems. We told her that when we found out about Elle's issues when I was pregnant - we gave everything over to the Lord. It's one thing to talk the talk of being a Christian - but it is an entirely different thing to walk the walk. There was a distinct change in our lives when Lee and I said - ok Lord - we trust you completely. You and You alone are in charge of our lives. After that, we had such a peace about everything. I had the most joyous pregnancy and everyday in the hospital (even the really bad days) were proof of God's wonderful will. Our wonderful friend seemed to take comfort in what we said. We talked for a while and I was so thankful we were able to see her before leaving. Everything happens for a reason. We weren't discharged on Wednesday like the doctors originally wanted because if we would have left Wednesday night, we would not have been able to give our testimony to our wonderful friend. She wasn't working on Wednesday. We weren't discharged until late in the day because the Lord wanted our paths to cross one more time. Had we been discharged early in the day like we wanted, we would not have been able to give our testimony to our friend. We were given our special baby so that we would meet this wonderful person. I firmly believe that we were put in the situation we have been put in to touch our new friends life. She has the power to touch so many lives and by us touching her life, she will be able to give comfort to so many families that are going through situations similar to what Lee and I are going through. While I have tried to not ask why this has all happened to us - I know for a fact that we were meant to be Elle's parents - we were meant to meet our new friend and we were meant to touch her heart. We were meant to be at TCH and we were meant to be there for as long as we were. We were meant to have the attitudes we have and we were meant to have our lives completely changed by a diagnosis early in our pregnancy. Our lives are proof of God's perfect plan. While it might not seem perfect on the outside - it is! It is so freeing and wonderful to have that faith that we are not in control! We serve an almighty Lord - one who already has the plans for our life mapped out. I praise God for everything that has happened to Elle, Lee and myself and I thank him for giving us the most perfect baby we could ever ask for!!

It Feels Like Home to Me

Update from Thursday, May 14 - Saturday, May 16, 2009 - These past three days have been an absolute whirlwind but I am excited to say that we are officially home! Thursday was the longest day in the hospital - going over Elle's medicines with the nurse, making sure all of our follow up appointments were scheduled, finalizing the car seat test (Elle had to sit in her car seat for an hour and her stats had to remain stable), getting Elle's feeding pump and accessories, and of course - picking up all my milk from the milk bank...all 250+ bottles!! Talk about a serious supply of milk! Lee said that as he was wheeling the 2 coolers through the hospital people were asking him what it was. When he said milk - they didn't believe him until he opened up the lids. Pretty funny!! We thought we were going to leave at 9:00am - but we didn't leave the hospital until 5:15pm. It was an extremely long and boring day with the exception of one very special thing that happened - but I am going to save that for another post. Once we had everything taken care of and we were finally free to go - the reality of the whole situation hit me and I couldn't stop smiling. We were actually going home!! Lee went and got the car loaded with all the junk we accumulated in our room while I waited with Elle. When Lee called and said he was out front and the nurse and I walked down to the lobby - I can't even describe the rush of emotion. I saw our car pull up and Lee is beaming just as brightly as I was. I had Elle and we were headed home!! 52 days after our ordeal began - phase 1 came to an end!
Neither Lee nor I cared we were leaving during rush hour - we were just so thankful to finally be leaving! We made it home around 6:30pm and took our little princess straight to her room. She had fallen asleep during the car ride and remained fast asleep as we carried her through the house. It was so much fun! Since we got home about 30 minutes past her normal eating time, we tried to hurry unpacking her new feeding pump and all the accessories. We got it set up like they showed us how to do it in the hospital. We got the milk started and then suddenly an error message came across the screen - "please call technician." That's never a good sign! Elle was starting to get hungry and fussy and I was getting more and more frustrated by the minute when Lee finally rigged the pump to over ride the problem. It was just a temporary fix - but it got Elle fed about 1.5 hours late! I called our medical supply company and was told that a technician would call us back shortly. After we got Elle fed and dressed for bed we decided to intorduce her to the dogs. Reggie and Duchesse have been our babies for the past 4 years so Lee and I were both anxious to see how they would react to their new baby sister. We figured Reggie would be the obsessed one and Duchesse would be the indifferent one. Reggie is the lover of the two and Duchesse is more like a bull in a china shop. Elle was still asleep so Lee picked her up and carried her into the den. At first either dog wanted anything to do with Elle - but once Reggie realized it was a little person - his obsession began. All he wanted to do was love on her - but he gets a little too excited so Lee had to push him away a few times. Duchesse did exactly what we though she would do and took a few sniffs and then grabbed her bowl and walked away - completely indifferent to the whole situation. Elle stayed asleep the whole time - so we're still not sure what her reaction to them is going to be. They have both snuck in a few licks of her feet over the past few days and she doesn't seem to appreciate that at all!

After her introduction to the dogs, it was time for Elle to eat again and we still hadn't heard from the technician. Lee worked his magic again on the pump and was able to get it started while I was on the phone with the medical supply company. By this time, it was 10:30pm and I was tired and just a wee bit upset about the whole feeding pump situation. The company told me that a technician would be out to our house to exchange the pump. I fell asleep on the floor in Elle's room waiting for the tech to show up. Thankfully Lee stayed awake and the technician finally arrived around 11:45pm. I stayed asleep in her room while Lee and the tech worked on the new pump. They got it all set up in time for her next feeding. Lee said the tech was super nice - but the hassle of having to get a whole new pump on the first day was not a pleasant experience. I am so thankful Lee thinks the way he does and was able to figure out a way to get our baby fed while we waited for the new pump. After the feeding pump debacle - the rest of the night went pretty smooth. The next morning was a completely different story. Elle threw up at 6:30am - the first time she had thrown up since back in the NICU days. It scared Lee and me! I know it's normal for babies to spit up - but this came out of her nose and it wasn't pleasant - for any of us. Lee had to go to work so I basically huddled over her for the next few hours - not daring to leave her side in case she threw up again. We had our first pediatrician visit at 11:15am so from 6:00am until 10:45am - I was stretched thin trying to take care of Elle and get all of our hospital info together for the visit. Needless to say, there were a few tears shed from both Elle and myself. I had to stop a few times, take deep breaths and ask the Lord for peace and strength. The most trying time of the morning happened when I was trying to get all her medicines together for the first time. It was definitely not one of the brighter moments of the day. The visit with the pediatrician went ok - I guess I am just so accustomed to having our doctor know all of Elle's information because we were in the hospital for so long that when the doctor started asking about her history all I really wanted to say was - why didn't you look at all the info TCH sent you yesterday? I don't know about the office that we chose to be Elle's pediatrician. I just liked the way TCH operated a heck of a lot better than this office did. At least we were able to wait in a private room and not out in the open with all the other sick kids. My mom came to help me on Friday afternoon - thank goodness! We spent the afternoon organizing Elle's room and trying to clean up our house a bit while Elle slept. Her doctor's visit wore her out! I was so thankful when Lee got home on Friday evening. I was so ready for the weekend so we cold all be together and Lee and I could learn how to take care of our little baby! One of the therapist told me to expect Elle to be just like a newborn even though she is 8 weeks old. Developmentally, if a baby is in the hospital for an extended period of time after birth they start from square one when they get home...and so do the parents! Saturday it was so nice to be together with Elle and Lee. I had plans to go and get some things from Babies R Us and AWoman's Work (fabulous maternity/post maternity store in Houston) - but all those plans were put on the back burner so Lee and I could spend our first full day together with Elle as a family. It was such a glorious day - even when she was fussy! We took turns holding her and figuring out which of her various rockers and toys she prefers. She is such a little angel - although she really likes for everyone to hear her complain! We are still trying to learn her - everything we learned in the hospital has been thrown out - that was such a different environment. We don't have nurses to administer her meds or patient care assistants to come in and take her temperature and change her if we were sleeping. It's all us now!! Everyday is a learning experience, but we are so thankful to be home with our precious gift!!

video

Wednesday, May 13, 2009

Elle Meets Witt

I figured I would post this separately because my post about today was sooo long - but today Elle got to meet her very fabulous and famous cousin - Witt! It was pretty exciting considering all that Elle and Witt have been through and of course their first meeting had to be in the hospital. There is a great video on Witt's blog - http://www.wittharrislupher.blogspot.com/. Karen did a great job of capturing the moment on camera!

Just the Three of Us

While the doctors were discussing our discharge - they also went over the rules and regulations of departing with our little "Heart Baby." We were informed that from today and for the next six weeks Elle will not be allowed any visitors, no outings to the store, church or any other crowded areas. We can only go to her follow up appointments. They told us that her little body will need to adjust to the outside world and the safest place for that is our house. They informed us that any infection, cold, virus, etc. would more than likely go straight to her heart....it is the weakest point until it heals. Lee and I were confused at first because most babies can go out of the house at six weeks old. Not our little bundle of joy. We even have a note to bypass any hospital/doctor waiting rooms.....that will be really nice! So - for the next 6 weeks - we will be quarantined. We want to thank all of our wonderful visitors that we have had over the past 7 1/2 weeks. We greatly appreciate the wonderful visits and gifts for our little princess. We are so blessed to have each and every one of you in our lives!
Elle visiting with her favorite golfer
(my former golf coach - Meghan Bolger Stasi)

And Another Day Down

Update from Tuesday, May 12 and Wednesday, May 13 - I woke up yesterday morning to the resident walking into our room. She proudly announced "we're going to get you guys home today!" I looked at her in disbelief and said "no - you're not." I think she was shocked to hear me say that - but as I explained to her - we hadn't had CPR, we hadn't had car seat training, we hadn't had the follow up with pedi surgery about the g-tube, we hadn't seen Dr. Edmonds about Elle's nose or hearing, Elle hadn't had her hearing test, we hadn't seen Dr. Justino or his nurse regarding a study drug we agreed to put Elle on and we hadn't seen a discharge nurse yet. My reply got the ball rolling and by the time the resident was making rounds with the other doctors, she had already placed calls and put orders in to get everything taken care of for us to leave TCH. When the doctors were making their rounds yesterday I told Dr. Slesnick (the attending cardiologist) that I was concerned about Elle's breathing. She sounded horrible and congested and Dr. Slesnick agreed. She had also started to de-sat the day before in the evening. Her oxygen saturation levels (which are normally in the mid 80's) were continuously dipping into the high 60's and low 70's. This is of great concern because it could mean that the shunt they put in Elle's heart to help it function wasn't working properly. Dr. Slesnick ordered a chest x-ray, another echo cardiogram and also called Dr. Edmonds to get him back to see Elle before the end of the week. Elle has also decided that she hates her crib - she screamed every time I put her into it - so between the doctors constantly coming into our room and Elle screaming - I had a very tiring morning. Thank goodness my mom came around 2 to help. We took Elle for her chest x-ray in the afternoon - thankfully it came back clear. My mom and I spent the rest of the afternoon talking to random doctors and nurses that came in and playing with Elle. She definitely has a huge pacifier dependency!

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The Power of the Paci

Today, I woke up to the transport team coming in and telling me that they were taking Elle down for her echo cardiogram. I asked if they could wait for me to brush my teeth and put on real people clothes and they said yes. I got dressed and walked out of the bathroom and found Dr. Edmonds looking through Elle's chart. Talk about timing!! Dr. E said he would come back later to discuss Elle - but later in Dr. E's world either means 10 minutes or 10 days. We took Elle down to the echo and about an hour later, we were back in our room. I got to see the BT shunt in Elle's heart which was pretty cool to see on the echo. When we got back to the room I got Elle dressed and ready to face the day. Since today will most likely be our last full day in Hotel TCH, I dressed Elle up in her brightest outfit. She is such a little ray of sunshine and I had to make sure her outfit matched her personality!! Elle had her hearing test this morning as well. The technician wheeled her computer into our room and put a sensor behind both of Elle's ears and then a sensor on her forehead. She put a little probe into Elle's left ear and then let the computer do it's job. I think that sound was emitted from the probe and then the sensors were reading Elle's brainwaves to see if her brain acknowledged the sound. She failed on both her right ear and her left ear. We had known from the CT that Elle had some form of hearing loss, but it really sucked to actually hear that she failed the hearing screen in both ears. When the tech left the room I started crying - just from the shear fact that I had actually heard those dreaded words said. I emailed Lee and told him the news. He asked if I was ok and I told him that I was upset - just because I was praying she would be a miracle child with deformed ear canals and perfect hearing. His reply was exactly the reply I needed - he said "she is a miracle child and she is perfect - just the way God wants her to be! And the best thing is...she's ours!" He's exactly right - she is our perfect little angel and we are so blessed to have her in our lives! At 1:30pm, Lee and I had car seat training. A physical therapist came into our room and went over the proper way to put Elle in her car seat. We then had to go down the car to be sure the base was in correctly. As we were waiting for the elevators to go down to the parking garage - Dr. E came flying out of the elevators - talk about timing again! I stayed with Dr. E while Lee went to the car with the therapist and the car seat. Dr. E put the scope down Elle's nose to check to be sure the holes he drilled are still open. Her right side has closed a bit and so has her left side but Dr. E feels that they should stay open with saline drops and suctioning with a bulb. He said he might have to put stents back in her nose - but he will make that call in a month when we follow up with him. Our talk then turned to her hearing. He had already told us that she has ear deformities. She will definitely need hearing aids and may possibly need a cochlear implant. I told him about the hearing test she had and he told me they did the wrong test on her. Since we already knew she had hearing loss - she was supposed to have a diagnostic test done. Since we are being discharged tomorrow, her hearing test will have to be done outpatient with an audiologist. AHH! Dr. Slesnick came by this afternoon and told us that her echo looked good. Awesome! Another thing checked off the list! We had CPR at 6:00 this evening. That was an eye opening experience - it really hit home that we may actually go home tomorrow! We're still waiting on a few loose ends - but hopefully we will be heading home tomorrow - we have the big stuff marked off the list and now it's just the little things that need to be taken care of. I can't believe this whole adventure might soon be over. It's hard to believe that we have been here for 7 1/2 weeks. How time flies!!

Monday, May 11, 2009

One Day Closer

Monday, May 11, 2009 - We are one day closer to going home! The doctors came in this morning and raved over how Elle is doing without the oxygen on. They even felt comfortable enough that they took the tape off her face where they taped the oxygen tubes. Her face is now officially tube free!! The meeting this morning with the doctors was different than any other one because we started talking about pediatricians and follow up visits. The plan is to have us out of here before the end of the week. However, they also said they wouldn't release us until pedi surgery gave their blessing on letting us go home. Dr. Edmonds called this afternoon and will be coming by later on this week to discuss Elle's hearing. She will be having a hearing test either tomorrow or Wednesday. We are praying that Elle has her hearing!! Please pray for our little angel! Little Princess stayed up practically all day. She slept for about 2 hours but other than that - she was up all day. She is such a happy little baby - smiling the whole day and looking all around with her big eyes. She just seems to absorb everything that is going on around her. I loved it!! I love having mom and daughter time everyday where we can sit on the couch together and look out the window. Those times are so special to me. I think I laugh and smile the whole day just looking at her! Everyday she gets the hiccups - but today I caught them on video. I think everything she does is just too cute!

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After Elle's eventful day of cloud watching and lots of tummy time, she is plum tuckered out! Maybe she will stay asleep tonight!

Mother's Day Weekend

Update from Saturday, May 9 and Sunday, May 10, 2009 - This past weekend was an amazing weekend!! Saturday morning Lee and I spent a few hours with our little princess before Lee went home to mow and take care of some stuff around the house. Lee took the picture to the left before leaving - this is what Elle looks like when we use the flash when we take pictures of her - she is all eyes (and this is exactly why we don't use the flash)!! I stayed with Elle until my dad came up to the hospital to be with Elle so I could go home for a few hours. It was dad's first time to babysit all alone and he did great! Dad and Elle watched golf together all day and also got in a few quality cloud watching hours out the window. While on dad's watch, the doctors changed the bandage on Elle's stomach to a more permanent bandage that will keep her feeding tube stabilized until she gets the actual button put in. They also took her oxygen down to room level - so Elle was really doing all the work on her breathing. He also taught her the difference between a hook and a slice! Lee and I were so thankful that we got to go home for a few hours and do "normal" things like laundry and weeding the flower beds! When Lee and I got back up to the hospital, we found Lee's dad, Mark, finally holding Elle! He is such a natural!! She was fast asleep in her Big Daddy's arms! Saturday was my first mother's day and it was perfect! Lee and I woke up early with Elle and spent the morning with our little princess. We gave her a bath and then dressed her up in her Sunday best! I have so much fun getting her dressed everyday (even though she hates clothes - I love them)! After getting our little angel dressed and ready to face the day - I got to open my present! Lee, Elle, Reggie and Dutch made me the most beautiful mother's day card - complete with pictures. I cried when I opened it. They also surprised me with the most beautiful aquamarine ring - Elle and Lee's birthstone. I am one lucky and blessed momma!! I also got one of the best Mother's Day gifts ever - our nurse let us take Elle off of the oxygen! We still had to keep it close by in case her O2 levels got too low - but we finally got to see Elle without any tubes coming off her face! She is just so precious!

Psalm 68:3

"But may the righteous be glad and rejoice before God: may they be happy and joyful."

Friday, May 8, 2009

Update for Thursday, May 7 and Friday, May 8, 2009 - Our poor little Elle had a very sore throat on Thursday. They pulled the breathing tube on Thursday morning and put her on a nasal cannula. This was her first time to have oxygen actually go through her nose! She spent Thursday coming out of sedation and being weened off of her medications after surgery. She was absolutely pitiful and wanted everyone to know about it. She wouldn't cry - but she was definitely voicing her displeasure with having a sore throat and wanting to eat.

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Lee and I thought we would be moved back to 15 on Thursday, but I am glad they let her recover for an additional day in CVICU. I absolutely loved the nurse we had today. Thursday night was uneventful - we managed to get Elle to sleep before we left for the evening and the nurse said she slept off and on for the rest of the night. We called at 5:00am this morning to check on her and the nurse said she was sleeping....I guess a lot can change in 2 hours, because when I walked in to her room at 7:00am this morning, she was not a happy camper. Poor thing was just so hungry and wasn't being fed anything! We had to wait for Dr. Wesson to come and look at her g-tube before they would begin to feed Elle pedialyte. At noon we were moved from CVICU back onto the 15th floor. As we were making our way from the elevators to our new room, all of the doctors and nurses wanted to come and see Elle without her stents in. Our wonderful nurse from CVICU made the comment that Elle sure was one popular baby. Heck yeah she is! We wouldn't expect anything else!! Dr. Ocampo, one of the attending cardiologist, told us that Elle was the most visited baby and most popular baby in the NICU. Of course she was!! Finally at 3:00pm Dr. Wesson stopped by and checked out Elle. He gave the ok to start her on pedialyte. She will be on incremental feeds of pedialyte today and will hopefully start milk through her feeding tube tomorrow. Occupational therapy should also start again tomorrow so we can continue to work with her on taking a bottle. We will also begin non nutrative nursing. Even though we elected to have the feeding tube put in, we still want her to work on suck, swallow and breathing. The feeding tube isn't exactly what I expected but then again, I didn't know what to expect. It really is a long tube coming out of her stomach. There is an "adapter" attached to the end where it can be capped off when she isn't being fed. This long tube is just temporary for about a month. After about a month, we will come back and the long tube will be replaced by the actual "button." Again, I have no idea what to expect. Once Elle finally got something in her belly, she settled in to her new room. She was staring at her monitors - amazed to see them again. It is so weired to hear the beeps and alarms since she had been off everything for a few days before her g-tube surgery. Elle finally fell asleep around dinner time. She sure is a chunky monkey - I just love that little double chin!! Our little angel is such a wonderful blessing! We are so lucky and blessed!!