Tuesday, June 30, 2009

The Past Week in Pictures and Words

Our little princess is growing so fast! This past week has flown by - but not without us snapping a few (ok - a lot) pictures. I am a huge fan of bows - I try to put on in Elle's hair everyday. What I really love are bows that are bigger than her head that will only stay on her head with the help of a headband. Unfortunately, I think I might have scared Elle the first time I put a headband on her because now she screams as soon as she sees the headband. I was able to snap a few pictures before the screaming started of this new flower headband!

Elle was happier as I was taking off the headband

On June 26, 2009 - I had to take Elle to TCH to visit with Dr. Wesson's nurse, Kathy. I was afraid Elle's button had become infected (again) and I wanted Kathy to take a look at it. Thankfully, Kathy said Elle's tummy looked good - the redness was more attributed to a scar forming than it being infected so we were good to go.

Our little chunky monkey waiting to see nurse Kathy

Friday afternoon my mom and I went to a memorial service for a precious little angel. The first night I walked into the NICU to see Elle I saw a friend from high school. He and his wife were proud parents to precious twin boys born at 25 weeks. We ended up being in the same pod in the NICU so I would go and visit with the boys and they would come and visit with Elle. As Elle progressed and we were moved to the cardiac recovery floor on our way to going home, I would still run into the boys mom in the milk bank. I constantly read their blog to keep up with their progress. At one point, it looked like both boys were doing great and close to going home. Unfortunately, one of their dear little boys took a turn for the worse and on June 22, 2009 he left his earthly parents to be with his Heavenly father. The memorial service was truly a time to glorify his little life. It was definitely sad, but both the mom and dad are such strong Christians that you couldn't help but notice their peace and strength that could only come from their faith in the Lord. We left Elle with my dad and when we got home - we found both of them asleep. It seems that the only person Elle will do any form of tummy time with is my dad. It's whatever works!!

Saturday, June 27, 2009 - we headed over to Uncle Jake's house to celebrate his birthday. Elle has started to grab onto things now. It's funny to watch her little hands work and try to hold onto anything that is put in front of her. She was holding onto her pacifier and let it go on her face. I think we were all just in shock that she didn't instantly burst into tears. Of course, we all started laughing hysterically. I had to take pictures before taking it off of her. She was moving her head back and forth trying to get it to fall off - but no luck. I don't think she found it as amusing as we did!

Sunday, June 28, 2009 we introduced Elle to her first Baby Einstein video. One of my wonderful co-workers bought Elle this dvd. We weren't sure how she would react to it, but she loved !! Because her hearing isn't too great, we have noticed that she is super visual. She absorbs everything that is going on around her. When Lee put the dvd on, she sat there with eyes wide open just starring at it. We had to put it on repeat to keep her happy! It is so amazing to see her grown and learn and progress. Her little hands are constantly in her mouth - she was one very happy baby sucking on her hands and watching her video!

Monday, June 29, 2009 we went to see Elle's cardiologist. We got great news that her BT Shunt is still functioning exactly how it is supposed to and looks good. We just have to go back every month from now until surgery which will be sometime before flu season. Before we left for the cardiologist, we had Elle in her crib at my parent's. She was playing with some rings that we have strung across the crib and she started to bring the rings to her mouth! This was the first time she was grabbing things and holding them and aware of where she wanted them to go. During her echo, she was grabbing the tech's hands and trying to bring the wand and the tech's hands into her mouth! It was hilarious! The tech would put the wand on Elle's chest and it wasn't 2 seconds before Elle's little hands were wrapped around the wand. She ended up with the gel all over her little face because her hands were all over the place. Dr. W is very impressed with little Elle - we pray that the shunt will continue to do it's work and pump her little blood to all the places it needs to go!

This week we are getting ready for our first over night visitors since we have been home! Our friends, The Millers, are coming in from Mississippi on Friday to spend the weekend with us. We are so excited - and so is Elle! I can't wait for Friday!!!

Wednesday, June 24, 2009

They Say It's Elle's Birthday...

Tuesday, June 23, 2009 our sweet baby turned 3 months old!
Some big milestones for our little girl:
* She is weighing in at 10 pounds 8 1/2 ounces
* Elle has now discovered her hand and sucks on that more than she does her pacifier
* She still can't hold the pacifier in her mouth for very long - but she is getting better at it!
* She is sleeping through the night and is very much a morning person - she is asleep before 9:00pm and awake around 8:00am
* She doesn't sleep at all during the day!...maybe that's why she sleeps through the night!
* She has started making big open mouth smiles - the kind that melt your heart
* She is a talker! When she gets going - she will tell you a story!
* Her favorite places to be are lying on the floor underneath the ceiling fan or on her changing table
* She just recently learned to like baths...recently like yesterday
* She has now officially grown out of her first newborn outfit
* She's not a big fan of car rides - but if she is eating while riding in the car - it is a good combination for getting her to fall asleep...even if it is only for 10 minutes
* She is super visual - her eyes are always moving - absorbing everything that is going on around her
* She's not a big fan of tummy time - but we're working on that!
* She is our precious little angel and we are so blessed by her little life!!

Sunday, June 21, 2009

The first of many

Today marked a momentous day in the Lupher household..the first Father's Day for Lee! I thank God everyday for my wonderful husband. Elle is one lucky lady to have such a great dad! He provides for us, he comforts us, he loves us unconditionally, he is our rock, he prays for us (sounds like another Father I talk to daily too)! I was thinking about it today and it amazes me at the strength Lee has. He was there everyday for our 52 day adventure in the hospital. He comforted me before Elle was born and he comforts me now that she is here. I look to him to answer questions that he probably doesn't know the answer to (why is she crying? why is she sleeping? are we supposed to do that? how do I handle that? is that normal?)...He is one amazing dad and such an amazingly strong Christian. His faith has moved me on so many occasions and has been an inspiration to me and to many others. He follows the Lord Jesus Christ with his whole heart and prays that Elle will grow to be a strong Christian girl and we will raise her in a strong Christian household. Elle and I are so blessed!

Saturday, June 20, 2009

Popsicle Friday

Summertime isn't complete without a few Popsicles. Since Elle isn't old enough to eat them yet - she's content to wear them!

Friday marked the end of my first week back at work which was a very tough week for other reasons not work related. I can honestly say I was absolutely exhausted but I loved being back at work. My mom is watching Elle and I think each day got a little easier. Our next project is to outfit their house with baby gear so I don't have to pack up everything plus the kitchen sink every morning. When I was growing up, my dad referred to my mom's car as the traveling trashcan. I can totally understand where that phrase comes from because it seems that ever since Elle came into our lives, my car has turned into a traveling trashcan..maybe it's more like a traveling baby superstore. Everyone says that eventually it gets easier to walk out the door with the baby and all her gear - but I'm not there yet. The rough part of the week revolved around my darling husband. He hasn't been feeling himself lately so Monday and Tuesday night he spent doing a sleep study and Wednesday night he spent in the emergency room followed by a visit with his primary care physician for a physical and a visit to the cardiologist. There hasn't been any definite answers given yet other than he has sleep apnea and has to wear a CPAP at night. I could have told him that! We pray that his issues either correct themselves or the doctors are able to find something and fix it. I know he hates not feeling well and I hate it for him. He has been such a rock during our hospital stay and while we have been home. I think the stresses we all went through are finally catching up to him and affecting his body. I will say that after spending Monday and Tuesday night alone, I truly admire single parents and what they must go through everyday. I was only alone for a few hours and it was hell - the strength, wisdom and patience they have to have is astounding and gifts I absolutely find incredible.

Yesterday afternoon after I had gotten off of work my mom and I had a few errands to run. A few weeks ago I was having some serious issues with Elle's feeding pump. Don't get me wrong - I still hate that she has to have it, but yesterday I learned to appreciate it. Elle was eating her 3:30pm feeding and mom and I were ready to get our errands finished. We loaded Elle up and put her feeding pump in it's little back pack and off we went! It was so nice to just be able to get up and go even though she was eating. This machine does have its perks!

On a side note, please pray for our darling nephew, Witt. He is in the hospital right now hanging out with Elle's friends in cardiology. The doctors did a heart cath on Thursday and it seemed to have left more questions than answers. He is one tough little guy and is such a little fighter (and so are his parents)! You can follow him at www.wittharrislupher.blogspot.com.

James 1:2

"Consider it pure joy, my brothers, whenever you face trials of any kinds, because you know that the testing of your faith develops perseverance."

Tuesday, June 16, 2009

Sleepy Sunday, Manic Monday and Terriffic Tuesday

Saturday, June 13, 2009 Lee and I went to my uncle's 60th birthday party. It was a wonderful few hours out - surrounded by friends and family. I didn't want to leave - but we had to be back home by 9:30pm to feed Elle. Mark and Vickie spent the evening with our little princess and they did great! The feeding machine is still a little daunting for everyone so until the grandparents feel comfortable with it, Lee and I will handle it. I was so nervous when we got home that I wasn't going to be able to stay awake for the midnight feeding. I did everything to keep myself occupied so I wouldn't fall asleep - I think I might of even washed a few loads of laundry twice! I surprised myself and even woke up for the 3:00am feeding - thanks to the 4 alarms Lee and I have in our room. It's a good thing our little lady is hard of hearing because those alarms are boarding on ridiculous. My roommates from college can attest to my ability to sleep through multiple alarms. Needless to say - Sunday was a very sleepy day - for all of us!

Monday marked our little angels 12th week here on earth. I can't believe 12 weeks have already gone by - they have flown! It also marked my first day back at work. Elle and I spent the morning together and I dropped her off at my mom and dad's house before heading into the office. Thankfully my mom and dad's house is literally across the street from my office so I was able to run over to their house a few times during the day to check on Elle and get her feedings going. It will be a slow progression back into working - not to mention juggling all Elle's doctor appointments! It was so nice to be back at work and communicating with adults! It's not that my mom and I didn't talk to each other every day while we were tending to Elle - but our conversations were centered around the little lady and our voices were several decibels higher!

It was much easier to get Elle ready to leave this morning. Yesterday was a learning experience - and again - I am surprised that it takes so much to walk out the door! It truly does take 3 hours to get ready!! We went to see the pediatrician today for Elle's feedings. She is now 10 pounds 1 oz! Yeah for double digits!! Because she is sleeping through the night - we can now officially take out the 3am feeding - yeah!!! We are increasing her per feeding fluid to 3.5 ounces 7 x a day. Over the next few days I will be slowly increasing the feedings from 3 ounces to 3.5 ounces. We can't over fill Elle's little belly!! We also stopped by TCH to get Elle's OT and PT scheduled. We are still waiting to hear back from the therapist to schedule everything - but hopefully we can get that stuff straightened out soon so they can help Elle with taking the bottle.

Elle has started making theses huge open mouth smiles - she is such a little personality! We are so truly blessed with our perfect little baby!

While I am writing this I am watching The Little Couple on TLC. Jen, the doctor, is one of the Neonatologist in the NICU at TCH. We would see the camera crew hanging out in the lobby while she was doing rounds. I saw a few of our nurses on the show which was fun to see and they even showed the inside of the NICU a few times..ahh...the memories!

Friday, June 12, 2009

Too funny not to share..

Elle in her bumbo for the first time on June 10, 2009
Not too sure about it
Maybe I can make this thing work

Nope - Not a Chance!

Endocrine, Audiology and a nod to the Flintstones

Update from Thursday, June 11 and Friday, June 12 - We had a full day at the hospital on Thursday. Our first appointment was at 10:30am with Dr. Chi, Elle's Endocrine doctor. I had to hook Elle up to her feeding machine while we drove to the hospital and I didn't stop the machine in time so our little princess was a wee bit full by the time we got to the hospital. I measured out the amount she was supposed to have before we left the house - but I'm pretty sure I didn't look at the numbers correctly (who knows). Let's just say she had her Thanksgiving meal on June 11! It wasn't too incredibly bad but it did put her to sleep for a majority of the morning. She woke up at the end of the endocrine appointment - just in time for Dr. Chi to see how adorable she is! The endocrine appointment went well. Basically all the doctor told us was that the next time Elle is in stress (sick or anything like that) and she has her blood drawn - we need to make sure her calcium levels are checked. The doctor explained that when Elle was born, her calcium levels were extremely low - which could have led to the seizure she had 4 hours after birth. She received calcium for a long time while she was in the NICU and eventually they stopped the calcium to see if her body would self adjust - which it did. The reason the doctors want to check her calcium level at a time of stress is to see if her body produces calcium during those times. There are different glands that are affected by CHARGE syndrome - which leads to the making (or not making) of calcium and other nutrients. We will see if she has those glands and if they are functioning should she ever go into distress. For right now, the doctors are satisfied with her progress and the last blood sample they took (they didn't even take any blood at the appointment). The next appointment we had was with audiology at 1:00pm. I was dreading that appointment because Elle had to be completely asleep for the entire 3 hour ABR test. How do you force a 11 week old baby to sleep - especially one that just slept the entire morning? Bigger kids that get the ABR test are sedated - but not infants! We got into the room and I hooked Elle up to her machine to feed her lunch. We brought the boppy this time, so I settled into a chair with her. She wanted nothing to do with sleeping! She squirmed so much she threw off some of the sensors the doctor put on her head! They had to be re applied several times. I also brought the sleeping wedge that we put in Elle's bed at night so she is inclined a little. I tried to put her on that so she would fall asleep - but NOPE! She wanted nothing to do with that either. I picked her up and just as I was about to get frustrated and ask to re schedule -she fell asleep on my chest - on her tummy. She never sleeps like that so I was shocked - but she was out! The doctor was able to do the ABR test, a bone test on her inner ear, the newborn screen (again) and make ear molds for hearing aids all while Elle slept! Hallelujah!! The ABR test showed that Elle has moderate to mild hearing loss in her right ear and moderate hearing loss in her left ear. the last time we did the ABR, Elle woke up in the middle of the test so the audiologist was only able to diagnose the moderate hearing loss. With the completed ABR, she was able to get a more exact measurement on what Elle hears. She was completely shocked when she did the bone test on Elle's inner ear because it showed that at least one of her inner ear responds - which means she can hear. Because of this finding, we will now have to go and see Dr. Edmonds because it could possibly mean that Elle's hearing loss may be fixable with surgery (tubes in her ears or something along those lines). She still did ear molds to be on the safe side so we can go ahead and get hearing aids made if Dr. E says the problem isn't fixable. We don't go see Dr. E until July 6 so for now we just wait. Dr. Eason (the audiologist) showed us baby hearing aids and they are absolutely adorable! They are super sleek and streamline and when we put the sample on Elle - you couldn't even see it! If she needs hearing aids - my vote is still on pink - possibly pink with sparkles!!
Elle asleep on my chest with the silicone in her ears for the ear molds..a mini Princess Leia
I absolutely love getting Elle dressed everyday. Right now we are trying to figure out what fits her and what doesn't so every morning we go through no less than 4 outfits. She is tiny for her age(even though she looks huge in pictures - I get really close up) so she still fits in newborn and some 0-3 month stuff. Everything else just swallows her. I pulled out this outfit this morning and just laughed! Of course Friday has to be animal print day!! It's pink leopard print and with Elle's hair in her bow - she looks just like Pebbles from The Flintstones!!

Wednesday, June 10, 2009

Oh My Goodness

I love a great give away and while I was "blog stalking" this evening I came across a friend's blog that had a link to a great give away! The site is called Fancy Schmancy Designs and it is absolutely the cutest stuff!! I love a good polka dot on anything!! Check out her fabulous blog at http://www.fancyschmancydesigns.blogspot.com/ and enter to win an adorable cake plate!

Jam Packed Days

The past few days have absolutely flown by. I posted Elle's raspberries on Saturday with the intent of following that up with a doctor update. Now it's been 4 days and I am just now getting to the update! Friday, June 5, 2009, Elle had her doctor appointment for her 2 month exam and vaccinations. Elle did great during the check up! I made a request for the doctor to write a referral for occupational and physical therapy for Elle. She has plateaued at 15cc - 20cc for her feedings and I am concerned about that. I don't know if she has become accustomed to the feeding tube and knows that she will be fed that way so she just stops with the bottle or if there is something else going on. She definitely knows what the milk going into the bag means at 12:30, 3:30, 6:30, 9:30... She watches me so intently while I fill up the bag and prime the machine. I know she has it all figured out by now. I am hoping that an occupational therapist will be able to help with the bottle feedings. As for physical therapy - I want to know how to work with her for tummy time with her button. We got the ok to allow her to be put on her tummy - but she screams every time we do it so I'm thinking her button might be digging into her stomach and making it uncomfortable for her. Every little piece of advice will help!! The doctor also gave us the ok to start introducing Elle to the world. We can't go over board - no Wal-Mart, no church, no crowded restaurants..but we can start living our lives a little more normally than being stuck inside 24/7. This means Elle can slowly start having visitors! BUT - we ask that if you are sick or have been in contact with anyone that is or has been recently sick (including children) - please stay away! Lee and I are still leery about too many visitors so don't get upset if you drop by without calling first and I ask you to come back! The last thing we want is for Elle to get sick and end up back in the hospital! Speaking of sick, Elle had to get all her vaccinations. I couldn't watch because I was holding Elle's arms down - but she screamed so loudly! I felt so bad for my little baby!! She was miserable all weekend too because of the shots. Her little legs were just killing her and she screamed every time we would even touch them. Sunday afternoon she was feeling better so we took her on her first outing (other than to the doctor). We went to Lee's brother's (Austan) house that is being renovated after being demolished during Hurricane Ike. It looks so good! Vickie, Lee's mom, and I stayed outside with Elle and pushed her around in her stroller while Lee, Austan and Mark worked on taping off stripes for Elle's cousin, Witt's, room. We eventually had to turn the AC on in Mark's car and let Elle sit in there. Vickie got some great pictures of our little princess reclining in the AC. On the way home, we stopped at Garden Ridge to look at patio furniture. It wasn't crowded so we felt ok taking Elle in. I must admit that it was terrifying to take her into a store for the first time. She ended up getting hot so we had to take her out of her carrier and hold her. I kept looking at people that would walk by us and the first thought usually was "that person looks germy." I don't think I will ever get over that feeling of analyzing people that walk by me now. I think I picked it up in the NICU where I would scowl at people if they didn't wash their hands for long enough or if they had a runny nose or anything. Monday morning we had an appointment with Dr. Edmonds. We were praying that both holes he surgically made in her nose had remained open. He put some numbing stuff down her nose and then inserted the scope. We got to watch on a television screen what he was seeing as he inserted the scope. Her left nostril is still pretty open but her right nostril has closed a lot. There is a membrane covering the hole and only leaving a tiny opening. He said that the hole is big enough for her to still be able to breathe but we will have to have it corrected in a month or so. This means another surgery and more stents. Great. While he has her sedated he will also go in a snip her frenulum (the little piece of tissue that connects your tongue to the bottom of your mouth). Elle's frenulum is at the very tip of her tongue which may be inhibiting her ability to take a bottle and will definitely inhibit her ability to talk. Dr. E said that when she starts talking Spanish she won't be able to roll her "r's." I said that considering where we live - we should probably fix that! We go back in a month to check on the holes in her nose and probably schedule surgery. She will have to have this surgery before heart surgery so she can breath after having her heart fixed.
Elle is learning more and more every day. She is a little sponge! She is mimicking me and I swear I saw her do the sign for hungry yesterday. Vickie taught her "patty cake" and now she is rolling her little hands like Vickie showed her to do. She is holding her head up great and this morning my mom and I even put her in her bumbo chair. Now we just need her to figure out how to keep her pacifier in her mouth! She is sleeping through the night from 9:30ish until 3:30ish. She is only awake about an hour and then sleeps until 7:00am. I am going to ask the doctor if we can stop the 3:00am feeding because she is waking up when I attach her feeding tube. I'm pretty sure she would sleep all the way until 6:00am if I didn't wake her up.
Lee and I started a class at church on Monday night that is called "Shepherding a Child's Heart." The first meeting was quite interesting and the class revolves around Proverbs 4:23 - "Keep your heart with all vigilance, for from it flow the springs of life." Basically, "For out of the overflow of this heart his mouth speaks" (Luke 6:45). The part that I thought was the most interesting is the fact that frustration is not a "biblical term." There are no passages of Scripture that speak to frustration. We need to assign terms to attitudes and actions that are biblical terms and move our thinking toward the Bible instead of away from it. I'm not "frustrated" when Elle starts screaming - I'm angry that I can't calm her down. I'm not frustrated when I see other moms with perfectly calm babies - I am coveting what they have (a calm baby). It really put a lot of my feelings being a new mom into perspective. Until I can identify my feelings using biblical terminology, I can't use the Bible to understand them. It should be a very interesting class and I am so glad Lee and I signed up for it. It's our "date night!"
Tomorrow Elle has a day filled with doctors. We will go and see the Endocrine doctor as well as the Audiologist. Yeah for a full day at TCH! Hopefully we will get to see some of our old nurses and say hi!

I couldn't resist taking this picture at 3:00am this morning - she just looks so cute all snuggled up!

Saturday, June 6, 2009

Mini Raspberries

Ever since the day we found out that Elle had to figure out how to breathe out of her mouth because her nose was completely blocked - we have said she is such a smart little girl. She didn't give up and just decide to stop breathing - she figured out how to breathe out of her mouth until the doctors clued in and helped her start breathing with the help of a breathing tube. My mom calls her gifted and talented. There are certain things that we work on everyday. One of the things that we do is when I am finished changing her diaper - I blow raspberries by her face and then tell her it is her turn. She just stares up at me like she is trying to figure out what I am doing so she can do it too. She also stares at my hands and my moms hands as we sign to her. I just know she is absorbing everything that we are doing. The other day I was blowing raspberries by her and she figured out how to do it! Lee asked me if I thought she was really mimicking me - and I really do. I think she is such a smart little girl! Please ignore my annoying voice and crooked attempt at a video!

video

Thursday, June 4, 2009

The Past Week in Pictures

Sweet baby sleeping
Elle and Uncle Benny

This is what happens when Lee dresses Elle - her bloomers end up on her head and she is NOT happy about it

Elle hanging out on the couch

The sequence of what happens when her pacifier falls out of her mouth
We are so blessed by this little angel!!

A Day of Doctors

Thursday, June 4, 2009 - We have been home from the hospital for 3 weeks now. That just absolutely blows my mind. Today began the rest of the follow up visits. We have everyday booked from now until June 11 with doctor visits. Today's appointments went really well. The first appointment was with the research nurse we are doing a study with. We agreed to be a part of a Plavix study. The way we see it - it is one more set of eyes watching over Elle. The doctor that is in charge of the study is Dr. Justino and he was the attending cardiologist when we were moved to the 15th floor. He is a wonderful doctor and when he asked us to be a part of the study, we really didn't have to think twice about it (although we did take our sweet time signing the paperwork). Everyday I give Elle some of this study drug. It is either Plavix or a placebo - we don't know. They are studying to see if Plavix will be as effective in infants as it is in adults. The risks are minimal and it is not only benefiting Elle, but may also benefit children in the future that need to have medicine after getting a BT Shunt. Gina, Dr. Justino's research nurse saw us today. She weighed Elle and our little princess is now weighing in at 9 pounds 6 ounces. She's gained 2 pounds since birth! She is also 21 1/2 inches long. She's grown over 2 inches in the last 10 weeks!! After seeing Gina, we went to see Dr. Wesson so he could take out her feeding tube and put in the button. Lee went with us because we had heard that the procedure to take out the tube was horrible - that the doctor basically yanks the tube out of Elle's stomach. Well - it's true - he did have to yank it out - but it wasn't that bad. Dr. Wesson covered the area of Elle's stomach where the tube came out with gauze and before I could even blink he had the tube pulled out and was putting in the button. Elle didn't even really cry - she kind of yelped and then was fine. She screamed more when she was having the x-ray done to make sure the button was going into her stomach than when Dr. Wesson pulled the tube out. She is such a little trooper!

Elle dressed and ready for the doctor

Elle's tube with the massive dressing that kept the tube from being pulled out

Elle waiting for Dr. Wesson - no dressing on her tube

And the button is in! We attach the feeding tube from the machine directly to the button and off she goes!

And she's out!