2 Months Old

Happy Halloween!

It has been one week since we last posted so we wanted to give everyone an update. The ups and downs have continued. Ella will eat good one time and not the next. She has had some good days this week and not as many good nights. However, overall she has made some progress – last week she was eating 30 ML (30 ML = 1 ounce) and this week she has had more feedings in the 45 ML range. This progress is good but she really needs to be eating 60-70 ML per feeding in order to go home without a feeding tube. Therefore, after a lot of discussions and prayer, we have scheduled her feeding tube (G-button) surgery for Tuesday afternoon. We will meet with her doctor on Monday to evaluate everything and we can cancel the surgery if we want to but we needed to get her on the calendar just in case. We don't want her to have to have this surgery and we are still praying that her feedings improve. We beg you to continue praying this as well. However, in case God has other plans than what we are asking, we have gone ahead and scheduled the surgery.

In addition to this surgery, we are going to have an MRI done on her left shoulder. This is probably the first many of you have heard about this additional complication. We didn't know until Ella was born that there was something wrong with her shoulder. You can tell by feeling it that things are not lining up the way they should be. We don't know the extent of it all but she will for sure need major reconstructive surgery to correct it. We have not focused on this or brought it up because it has kind of been on the back burner while we deal with the other stomach defect. However, because Ella will already be under anesthesia for the G-Button surgery, our surgeon is planning on getting the orthopedic team in there to do an MRI so hopefully we’ll know more of what is going on and what the next steps will be. Right now, we are thinking that nothing would be done for another 3-6 months. Hopefully we will have more information and more of a plan after we get the MRI results.

So basically, this is just not a fun time around the Carder household. We are tired and ready for Ella to be home. It has been 2 months today and with the G-Button surgery and shoulder surgery, we don’t really see the load getting much lighter any time soon. Your prayers, comments, phone calls, emails, and texts all mean so much to us. Even though we may not respond, they mean so much and we need them more than ever. We definitely see God’s blessings during this time through our friends, family, church and elders. We had a great week with several elders praying with us and over us and Ella. The peace that we have is truly unimaginable during such crazy times. It can only come from one source – the Holy Spirit of God.

I know a lot of you are praying with your kids. One thing I am learning during this time is that God is God. Sometimes, He answers the prayers the way we ask them and the way we want them as in Eva’s case. Other times, He has other plans to bring good out of not answering them the way we are praying. We worship God, not the outcomes. No matter what the outcome, we worship God. We trust Him. He is real. He knows everything. Read what God says in Job 38 and 39 and Job’s response in 40 (in the Message). Truly we serve a God who doesn’t “need” our advice. He does not owe us anything, in fact, He has given the Carders more good than we deserve. I’m not saying I enjoy what we are going through or that I’m even thankful for it. We’re trying to remain thankful in this circumstance.

Keep praying.

Pray for Ella

Rick here. Sometimes in life, what you see is not always what it appears. That is the case with this picture. Although she is smiling and looks great to us, Ella is not doing great. We just love the picture and wanted to post it because we are thankful. We acknowledge that we have so much to be thankful for – Ella is peaceful, content, her wound is healing fine, her doctors and nurses have been excellent and we’re making friends with other parents in the NICU. All these things we are thankful to God for and recognize them as blessings from Him.

However, Ella is not eating well. Several weeks ago, she was doing great and we had our hopes on going home soon. Then, for some reason, she just stopped taking a bottle and she had to go back to being fed by the feeding tube more frequently. Now we are at a place where she is only eating well every once in a while – way too inconsistent for any of us to be comfortable. The doctors are now talking to us about Ella having to go through another surgery to put a feeding tube into her stomach (called a G-buttom). This would allow us to go home – however, we want her to go home without a feeding tube and no surgery. The surgery would have additional complications due to the fact that she has had the omphalocele surgery.

We understand that God is God. He can do whatever He wants and doesn’t even have to explain why. We trust Him. And if He wants her to have another surgery for this G-button, we will submit to that and praise Him for being God. However, we don’t want this to be His will. We are pleading with Him to have Ella get better without the surgery. We are begging Him to open Ella’s mouth and give her the desire, ability and strength to eat full bottles every time.

We are asking all who read this blog (pass this on to anyone who will pray) to join us in praying that Ella start eating well every time. Her feeding times are 3:00, 6:00, 9:00 and 12:00 am and pm. We want so bad for God to be glorified through her eating well. We want there to be no doubt that God changed her eating habits. We want everyone to know that there is a God and He is good. We know that is the case no matter what happens with her eating habits.

It is times like this that I wish I understood God but it is also times like these that I am so thankful I serve a God who is so big, there is nobody who can grasp everything about Him. What a small God we would serve if we understood everything about Him…If His answer was always “Yes” and we never got to see Him bring good out of tough situations. We serve a Huge God!

Thank you for praying for our family. Please continue.

7 Weeks Old

I love snuggling with Daddy

Sorry Ella but your hair in the back was CRAZY!

Just talking with Mommy

A visit from Uncle Jake last weekend

Snuggle time with Pawpaw

Breakfast is so much more fun when you dress up!

Ella is 7 weeks old today. It is hard to believe that we are closing in on 2 months! Lately it seems like time is creeping by as we wait for Ella to get better and be able to come home with us. This past week has been a rough one for us with the bottle feedings. Last weekend there were a lot of changes made to Ella's feeding plan and nothing was consistent so it kind of set her back this past week. It has been very frustrating and emotionally draining and needless to say many tears have been shed on my part. She has been spitting up a lot this week and only taking half of what was in her bottle during her bottle feedings. She is still getting 2-3 feedings through her tube. I know they have told us that sometimes it gets worse before it gets better so I guess this is just one of those times.

So far this weekend has been much better so we are hoping it will be a better start for this coming week. Please keep praying for her as we keep working on getting her to eat and to hopefully move to all bottle feedings soon. She has come so far and we are so thankful for the progress she has made but there is still a long way to go. Her tummy is continuing to heal well and looks really good. Her surgeon said it will probably be another month or two before it is completely closed but it is looking good. She can come home with it the way it is so that is not keeping us in the hospital, it is her feedings.

We are trying to be patient but it is hard to leave her every day and night, especially this past week when she was having such a hard time. I've been a little more emotional this week and easily worried about what all Ella has to face. In times like this I think it is funny how God speaks to me and I had one of those moments this week. I was putting Eva down for a nap the other day before I went up to the hospital and she got her little Bible to read a story and turned to the story of Jesus calming the storm from Matthew 8. I have heard this story a million times but I felt like that day it was the Lord speaking to me like he did to the disciples saying, "Amy, where is your faith, why are you so afraid?" It was a great reminder that He is mighty to save and will continue to be faithful during this journey with Ella. He certainly has been faithful to us. There have been a lot of hard and scary moments in the past 9+ months and God has been there and delivered us through all of them and I know He will continue to do so.

A Big Week for Ella

Another new hat, thank you Nurse Blanca!
Snuggle time with Mommy.

Ella has made great progress this past week with her bottle feedings. This is a huge answer to prayer so thank you all for praying specificly that Ella would start taking her bottles better. She has increased the amount she is taking to around 2 ounces and is not putting up such a fight when we feed her. We are so proud of her! Her doctors and nurses kept telling us that it would just take some time and it seems that she has finally gotten the hang of it. She is still spitting up frequently but she is continuing to gain weight so that is great. She is up to a whopping 5 pounds 10.8 ounces!

Yesterday her doctor increased the number of bottle feedings she gets during the day which is a good sign that Ella is getting more ready to go to all bottles. She still gets 2-3 feedings a day through her feeding tube but if she continues to take the bottles well then they will take the tube out and go to all bottles. We are very excited with her progress and are hoping that in the next few days they will try to go to all bottle feedings. The other big news is that her surgeon took her central line out and took the wound vac off last night. She looks so good without all the wires! Her tummy is looking really good and her wound has gotten smaller even since last week. They are now putting a cream on it to continue to help it heal and we will continue using this dressing once she comes home. It will still take some time before her tummy is completely closed but it looks really good and all her doctors seem very happy with how it is healing.

We don't know yet when Ella will come home but all of these things are steps in the right direction so we are hoping it won't be too much longer. We are so thankful for all the encouragement and prayers for our family. Please continue to pray that Ella will take her bottles well so we can move to all bottle feedings. Also, please keep praying that her tummy continues to heal well and does not get infected. We'll update when we have more news, hopefully we will have a coming home post sometime soon!

Love, The Carders