Saturday, March 28, 2009

Neonatal ICU Reunion

This morning we went to the Harris Methodist NICU reunion and had such a fun time seeing so many of our sweet friends. During the two and half months Ella was in the hospital we were blessed through wonderful friendships with other parents, doctors, nurses and volunteers. It was so great getting to see so many of these amazing friends again who took such good care of Ella and just loved her like she was their own baby. We are so thankful for each of you and all that you have done for our family! You all have a very special place in our hearts and we are forever grateful for your love for Ella and our family.

Cassie, Tracy and the twins Taylyn and Caylyn, Lisa with her son and baby Haley, Me, Ella, Rick and Eva
Get in where you fit in! Don't you love group shots? These are some of our good friends we made in the NICU. We were all in the same room together for a long time and then Ella and her twin friends were in beds next to each other for weeks and weeks and weeks. These sweet babies were all born extremely premature and when I say extremely I mean like at 24 and 27 weeks. Amazing! They are such fighters and we have said many prayers for them along this journey. It was so fun seeing how far they have come and how big they all are. Rick and I were laughing today because we were all talking about how big each other's babies are now and several comments were made about Ella looking so big. Pretty sure that only in the NICU setting will Ella ever look big to anyone because everywhere else we go people always comment on how tiny she is. Love it. So great to see you guys today and we can't wait to get together again soon! Praying for you all and your sweet girls.

Auntie Florence with all of her little chicks. Love you Florence and we miss your beautiful singing. :) Hope you're still keeping that mic hot with your karaoke. Never give it up, you rock at The Carpenters!

Ella with Miss Sylvia, Nurse Sue and Miss Dorothy
Miss Sylvia and Miss Dorothy are two of the best volunteers! They go up to the NICU every week just to hold and love on babies. Thank you for loving on Ella while she was there and for all of your encouragement. So good to see you both! Sue was the first person we met from the NICU and she shaped my impressions of it before Ella was even born. I remember talking to her on the phone months before Ella was born and she was so encouraging and answered so many questions I had. She gave us a tour of the NICU before as well and at the time it was so hard emotionally to see everything and process that in a few months my baby would be the one lying there hooked up to all the tubes, wires and monitors. On the other hand it was so helpful to know what would take place moments after Ella's birth and see where she was going to be for the upcoming months. Sue remained a constant source of positive encouragement throughout our time in the hospital and we are so thankful for her compassion and care. Thank you Sue!

Ella with "Queen LaTisha" as we like to call her because she is the baby feeding queen. She can get any baby to take a bottle. I think she could get a rock to eat if she had to, she's amazing! There were so many times when we couldn't get Ella to take a bottle and we would just feel so defeated and that's when we'd call in the pro. Ella knew she was in trouble if we had to call in Queen LaTisha. So good to see you, thank you for loving our girl!

Ella with Nurse Shelley and Nurse Crystal
Thank you both for taking such good care of Ella. We loved getting to see you today. Crystal was Ella's nurse many times while in the NICU and she was so sweet with her and Shelley was there the night Ella was delivered. Special ladies!

It was such a blessing getting to see everyone today. There were many that we didn't get to see and we missed you all but hopefully sometime soon we'll get back up there to visit. Thank you again Harris NICU for loving and taking such good care of Ella. We love you and look forward to seeing you again!

Saturday, March 14, 2009

6 Months Old & State of the Union


1 month

2 months

3 months

4 months

5 months

6 months

Cute sister pic

This past month Ella turned 6 months old! Crazy. It really is unbelievable to me in many ways. I don't feel that time has flown by because it has been the hardest 6 months of our life and a day feels like a week for us but it is unbelievable how far we have come. We are so thankful for our sweet Ella and that the Lord has chosen us to be her family. She is a joy and Ella, the meaning of her name being "a bright light" truly fits her. As you know things with Ella have been very hard but we have been and continue to be immensely blessed by amazing family and friends. We are blown away every week as we continue to receive encouraging cards, emails, phone calls, gift cards and checks in the mail for needs we haven't even expressed publicly but the Lord is using the generosity of others to provide for us. It is incredible! We stand in awe of our God and of how he is using our brothers and sisters in Christ to help us as we continue this journey. Thank you friends and family, we are so blessed by each of you.

This has definitely been a bumpy ride so far and we still have a long way to go. I know I for one am still trying to process all that has happened. We are still in survival mode so there is not much time for reflection but the times I do have I completely break down because I have a combination of feelings ranging from overwhelmed, sad, and heartbroken to feeling closer to the Lord than ever before and blessed beyond measure. I think this goes to show that you can have dreams shattered but still have a faith in Jesus that is not shattered. Obviously the way things have played out are not the way I want it to be and it is extremely hard on a daily basis but the Lord is never taken by surprise. He knows exactly what my heart feels and knows all about little Ella and He is hurting right beside us even during the times that I feel He is silent and I'm wondering if He forgot that we are struggling. The truth is He has not forgotten and He uses situations like this for His glory. I like what it says in Isaiah 48:10-11, "See, I have refined you, though not as silver; I have tested you in the furnace of affliction. For my own sake, for my own sake, I do this. How can I let myself be defamed? I will not yield my glory to another." So I look at all of this as the Lord using these struggles with Ella to refine our family so that He will be glorified. This is not about us, it's about Him.

We have the hope of Heaven which makes all of this easier to deal with. Without that, I don't know how people make it through tough situations. Another verse that keeps popping into my head is the one in Joel 2:25 where He says, "I will repay you for the years the locusts have eaten..." I feel like the dreams that have not turned out the way I had hoped, the sleepless nights, the pain and crying over having a child that is not "normal", the time spent in waiting rooms, hospitals and therapy, all of that will be repayed. I know the Lord doesn't owe me anything but I do know that He promises that if we believe in Him we will have hope for the future, joy in our trials and a light for our path. I believe there are going to be better days ahead on this earth and I know for sure there will be in Heaven. Until then, hold fast my friends.

Okay, sorry to get all preachy on you. I really meant to update you on Ella so I'll get back to the task at hand and updating on the state of affairs. Ella has made some good progress in the past 6 weeks since all of her procedures (scope, upper GI, etc.). She has been on a medication called Zegerid for the past 6 weeks to treat her esophagitis and reflux and we have seen a big improvement in her feedings. They are still a big challenge but are better than they were so we are thankful for that. Ella is taking in more volume-wise from the bottle which is great but we are still continuing to put whatever she doesn't finish through her g-button with every feeding. If you remember before Ella would only eat if she was asleep and even then it was a battle but now she eats when she is awake which is a huge step. It's kind of funny because we went from her having to be completely asleep and no one making a sound for her to eat to now her being awake and practically having to put on a circus act for her to take a bottle. Even though I'm home alone during the day I'm a little embarrassed for myself for all the ridiculous noises I make, silly songs I sing and doing everything short of standing on my head at times to get her to eat. However, she is continuing to gain weight so that is a praise. She weighs a little over 10 pounds now so yes, she is very small but she is gaining and that's all we care about. We are still feeding her every 3 hours around the clock but at night instead of bottle feeding she is fed completely through her feeding tube every 3 hours. I assume it will be this way for quite a while longer since she is so small and we are anticipating surgery in the coming months.

So as you can see her habit of always having to be distracted to eat is not ideal either so we are working on that. We have a dietician and occupational therapist who both come twice a month to help with feeding issues so that has been good. My prayer right now is for Ella to eat better when I hold her. I know that sounds weird but the past few weeks she will really only eat well if she is sitting in her bouncy seat and is watching a video so we are working on trying to get her to enjoy eating while being held. Because of this we still are not getting out much at all besides going to dr's appts and church since it is still very challenging and we don't have the luxury of being able to skip a feeding at this point. Also, we are going to start introducing some baby food next week so I'm praying that this process goes well. It will not be for nutritional needs but more for oral and speech development down the road and to start getting used to new tastes and textures. Please be praying about both of these things. So that covers feeding I think.

As far as physical development and her shoulder problems go she is making progress with this as well. In the past month we have seen some exciting things. They probably aren't to anyone else but they are exciting for us. If you remember Ella has limited range of motion in her left arm due to her shoulder problems so up until the past month or so she really wasn't using her left arm much but lately she has been moving it a whole lot more. She is reaching for things more and the other day she put her left hand in her mouth which she has never done! I was so excited! So there have been some big improvements with that. She also has rolled over a couple of times as well and loves rolling side to side on her play mat so that is really good. We have physical therapy once a week which is really helping her and us learn how to help strengthen her arm and overall core. The more she strengthens and uses her left arm now the easier it will be to get her to continue using it after surgery. We are not sure when her shoulder surgery will be yet. I would think that it would be sometime this summer but until she has another MRI we will not know much. Tentatively her MRI is scheduled for the beginning of May at Scottish Rite, we should know a date for sure next week, and from there they will determine their plan for surgery. We'll keep you posted.

Our schedule continues to be pretty rigid and busy working on feedings and filled with therapy and doctor's appointments. Most weeks we have appointments 2-3 times a week and some weeks there is something every day. It is difficult and my attitude is not always joyful but through much prayer the Lord is sustaining us. I know it won't be like this forever. If you would, please continue to pray for our family. We are so thankful for all that you do for us, you are a blessing.

Prayer Requests

-eat GREAT while being held
-continue to take more by mouth and rely less on feeding tube
-for feedings not to take as long (right now still taking an hour or more per feed)
-starting baby food goes well and that she enjoys new tastes
-start sleeping really well at night
-overall health and physical development
-that she feel so loved and not overlooked or left out
-that she continue to adjust well with all that is going on with Ella
-that she stays well and doesn't get sick
Rick and Amy:
-endurance and joyful attitude (Amy on the attitude part :))
-take one day at a time
-guard against fear
-protection from sickness

Thank you for praying. Looking forward to many more answered prayers!

Saturday, March 7, 2009

Ella's new accessory

Ella got her new head gear this past week. Her band came in on Wednesday so we had her first fitting and it fit great so we are good to go. She will wear the band 23 hours a day for probably the next 2 months at least. That is usually the average time frame but it depends on how well the head responds etc. as far as if our time frame will be longer or shorter than that. 23 hours a day, sheesh. Poor girl! I'm just saying that is going to be one fuuunky smelling head. It may be funky smelling but it will hopefully be beautifully round after all of this. It better be. :) So far Ella has done great with it. It does not seem to bother her too much which is good. Every now and then she will pull on it but other than that she is a-ok.

About two weeks ago we went to have the casting done for the band. Now days they have this big high-tech 3-D scanner that they use to take pictures of the head in order to make the mold for the band and the appointment will take maybe an hour. Sounds easy enough right? Sure, for the majority of people but not for the Carders. Oooh nooo. Do you remember how I mentioned that we like to take the hard road for everything so I now use the "go in with low expectations and you will be pleasantly surprised" motto? Yeah, well my expectations were low as far as thinking the scanner would do the job and I was right on this one. Of course Ella was moving too much and they couldn't get good pictures so they had to cast her head with plaster to make the mold. Very messy! Several years ago this is the only way they used to do it but now they hardly ever do it this way because of the fancy-shmancy scanner they now have. Not for us though, we got to go old-school. Thanks Ella!

So instead of our appointment only being an hour, we were there for 3 hours. Real cool. And did I mention it is in Dallas? Yep, another perk. So we will be driving to Dallas once a week for the next 6-8 weeks to have her band checked, measurements done, etc. I normally despise driving to Dallas for things (sorry Big-D friends, just being honest!)especially with how hard it is with Ella to go anywhere but there are some positives. One really good thing about where it is in Dallas is that the clinic is right by my sweet friend Kimberly's house and she is letting us use her house when I need to feed Ella. It is such a blessing. This past week I just loaded up the car with the feeding tube, bouncy seat, videos, etc. and we just moved in with Kimberly for part of the afternoon when I had to feed Ella and it worked great. Such a huge blessing to have a place to go to feed since it is still a challenge for us. Thank you Kimberly!! It was SO fun getting to spend time with you this past week. We love you so much!

Here are some pictures of our journey so far with the cranial band.

Putting the plaster on

The little mummy. I feel like the song "The Monster Mash" should be playing in the background for this picture. I can just hear it, "The-monster-mash, it was the mooonnster mash, the-monster-mash, it was a graveyard smash, the-monster-mash, ah-wooo...ah-wooo." Ella did so good through all of this, hardly a peep until the very end. She is so sweet!

Messy girl!

All clean after her bath

First time to wear the band

BORING! Let's get some decor on this bad boy mom. Yeah, I'm sure that is exactly what she is thinking. More like let's get this thing off please.

TA-DAAAHH! What up? Nice bling girlfriend!

More to come. Ella turned 6 months last week but last week was crazy so I didn't have a chance to update on that so next post I will. Stay tuned!