Hello, everyone 🙂
Today the doctors decided to schedule in eliana’s G-tube surgery for this Thursday 2:30pm. This is the surgery that I did not want eliana to go through, but I am thankful and excited that G-tube will allow her to come home finally in about two weeks. She’ll be about seven weeks old then.
Thank you for all your prayers! Please continue to pray that she’ll learn to eat by mouth at home over the next months and years!
love, maria
I love to eat. Anyone who knows me a little could tell you that I am an eater. To my shame, alex would readily agree that I live to eat rather than eat to live. So as a wife and a mom, I love to see my family eat a lot like me. It makes me feel accomplished and gives me a good feeling about my job security as a homemaker. Unfortunately, alex and nathaniel are not voracious eaters. Often times I get stressed out about them not consuming enough food and I have to cling onto God to take care of their health. Then came eliana.
Oh. my. I never realized that swallowing liquid could be such a laborious task. I feed eliana twice a day by mouth since she passed her swallow study (Praise the Lord! 🙂 the rest of her feeds go through the NG-tube). Ever since then, she’s been taking between 3-15ml of milk by mouth over 30 minutes (she’s supposed to take about 50ml). It bewilders me to see her struggle so much to get 3ml down in 20 minutes. Needless to say, I get pretty discouraged by the end of my hospital visits. The doctors have brought up the option of G-tube again and with eliana eating like this, it seems pretty futile to even consider any other option. So in the past few days, I have been praying for God to calm my fears regarding the G-tube and to give me peace about going forward with it. As alex would say, if she needs it, she needs it.
God knows me painfully well. Of all challenges, He gives me another family member who doesn’t like to eat. I want to scream and pull my hair out sometimes– especially after she takes 4ml over a long 30 minutes of battle– but I learned to take a big breath in those moments and tell myself that she is God’s daughter and that He will take a good care of her. If my pride before was in having a plump baby with countless rolls, my pride now would be in having a baby that eats so little yet is being sustained by God’s grace and power. 🙂
God has shown so much of His grace in eliana’s life already. With every unexpected turn, I see more of His grace and mercy juxtaposed to my disbelief and sin. I can see how eliana will be used in so many different ways to teach me lessons over this long, long journey. Her life has already challenged me to trust in God in all circumstances and to love Him above all things. May the KOs continue to strive to be thankful through difficulties and be found faithful before God.
Job 23:10 But he knows the way that I take; when he has tried me, I shall come out as gold.
UPDATES:
Eliana will be reevaluated for her need for the G-tube early this week. If they decide that she needs it, she will have surgery sometime next week and be discharged one week after the surgery.
– Please pray that if within God’s will, eliana will start eating well by mouth so that she may not need the G-tube.
– Please pray that I may not be discouraged after feeding eliana. She has been getting worse in terms of feeding and it worries me that she may never get better. Please pray that I will trust in God with eliana. 🙂
Thank you, again, for all your prayers!
love, maria
Praise God, Eliana passed her swallow test this afternoon with flying colors! This was not expected as she failed the previous study and all the doctors informed us that the result will most likely be the same. However, no aspiration of milk into the lungs was seen during today’s test. This will mean that we will, with the help of occupational therapists, try to get her eating via her mouth starting tomorrow. It also means that the placement of a permanent feeding tube is on hold, with the hope that Eliana will do continue to swallow well. Next time you swallow food, thank God for no aspiration pneumonia! Thank you for all your prayers!
thankful,
the KOs
Today, eliana is already one month and two days old. It was another beautiful sunny day in San Diego. It’s weird that eliana has yet to see the sunlight and has been alive for a month. I can’t believe that I have been in and out of the Rady’s Hospital for a month. I wonder when she’ll be coming home with us.
Often times I wake up and think that everything was just a bad dream. But as I start to look around the house, I realize that it’s a continuation of yesterday. My belly is somewhat flatter, my mom is helping out with Nathaniel, and I still have a green hospital ID band around my wrist for when I visit eliana. Tomorrow will be another same day. I’ll have some time with Nathaniel, go visit eliana, come home and do work around the house and wait for another day to begin. It’ll be another day where I have to fight to trust in God and completely rely on His sovereignty. God has stripped all control from me and I have become nothing but a spectator at watching my daughter suffer. I feel completely helpless but keep telling myself it’s not a bad place to be. God has the full control and I can’t mess up anything.
I am thankful that my family can be an encouragement to others through this season of our lives. It is truly not of our own doing. If anything good comes out of this, it is completely because God is helping us. Alex has been such a great example to me as I have never seen him complain or even be anxious through all this experience with eliana. I, on the other hand, go through a wide range of emotions especially when I sit and watch eliana at her bedside by myself. It’s a great time for meditating on God’s word and promises, but also a dangerous time for my thoughts to go buck wild if I don’t take every thought captive to obey Christ.
I think I’m slowly understanding what it means to live for the glory of God– even at the sake of my family’s comfort, my daughter’s health, well being, and even survival. It’s too painful sometimes to think about it, and every flesh part of me cries out “NO!” but God always gives me quiet joy and peace that comes with knowing the truth in His word. God’s glory is what matters and if my life can reflect it through our suffering, so be it.
UPDATE:
Eliana’s swallow study has been rescheduled for this Tuesday at 1:30pm. Please pray for a good result, but that God’s will be done. Also, please pray that I will trust that God’s plan for eliana is the best plan for her regardless of what I think is best for her.
Hello all, again 🙂
This is Maria. I hope everyone’s doing well. 🙂 This morning the cardiology surgeons were rounding on Eliana and they decided to postpone the swallow study because she spiked up a fever with elevation in white count a few days ago. She’s on two big gun antibiotics and they want to give her some time to recover before the study.
I am thankful that Eliana earned more time before the study as I was somewhat doubtful that the result would be changed from her last study two weeks ago. I pray for no G-tube but regardless of the result of the study, I know it would be for the best for Eliana, for us, and more importantly for God’s glory.
Thank you for praying for our family! May my thoughts and attitude be pleasing to God through small and big trials in Eliana’s life.
love, Maria
Hello all, 🙂
Eliana will be having another swallow study (study to see if she is eating properly without having her food go down to her lungs) this THURSDAY at 1:15. If she fails this study again, she will come home with a G-tube with fundoplication. We would love to avoid this as it seems like children who get a G-tube stay on it for many many years.
Please pray that if within God’s will, that Eliana may pass the swallow study. Please also pray that we would care about God’s glory first rather than what would be convenient for us and for Eliana.
love,
the KOs
Hi all,
Eliana’s microarray gene study results are back! Here’s what the report says: 18p11.32 (136,226-562,422) x1, 22q11.1 (17,354,368-17,805,430) x3
In summary, she is missing a small piece of chromosome 18 (a total of 3 known genes) and has an extra piece of chromosome 22 (involving 7 genes). Overall, it is encouraging news, as a smaller amount of genetic material than originally suspected is missing. What it exactly means for her future, only God knows for sure, and we are okay with that.
She is slowly recovering from surgery. She’s still mostly sleeping from all the pain medications. Thanks for your prayers!
My first outfit.
At the end of a long day.
Coarctation of the Aorta
Hello all!
The surgery went well and as planned, with the coarctation of the aorta successfully removed. Eliana also has several holes between the left and right side of her heart called VSD’s.
To prevent too much shunting of blood from the left to the right, she had a band placed to tighten the pulmonary artery.
This band will have to be removed and the holes closed after she grows a bit, likely between six months and one year of age. Of course, this is in addition to at least two more surgeries to close her cleft lip and palate. We are thankful to everyone for your support and prayers and praise God for His goodness in allowing us to spend more time with Eliana here in this world. She is a blessing from the Lord!
She is still on a ventilator in the NICU and expected to recover for at least another week at the hospital.
Thankful,
the KOs
Hello, my name is Eliana! Pray for me!
Hi everyone,
Thank you so much for praying for us! Our family has been doing well held up by God’s grace. After a long wait, we were informed that the surgery scheduled for today has been postponed for tomorrow because the first case in the OR took much longer than expected. We have been assured that it should happen tomorrow around noon!
My first picture with Eliana!
Welcome to my first blog post ever! This is a quick way to get updates on our baby girl, Eliana, and her journey through life, however long God wills it.
Eliana has an 18p- chromosomal deletion that was discovered early in her life. Ultrasounds showed that she had a cleft lip/palate and several heart abnormalities. She was born on June 20, 2012, weighing 4 lbs and 11 oz. Much prayer and God’s grace has helped her heart develop, and she is now scheduled for a more minor surgery than expected to fix a narrowing in her aorta (called a coarctation). The surgery is set for Monday morning, July 9.
After losing weight for the first two weeks, she has now begun to re-gain her weight. She is fed now solely through a nasogastric feeding tube, but the hope is that her interest in eating and ability to safely swallow will improve with time.
She has had a rough beginning to her life, but thankfully, she will remember none of it. Our prayer is that the permanent scars from the surgeries she will undergo will be a continual reminder to all of us, including her, of the faithfulness of our wonderful God to sustain life when no such mercy is deserved.
Thanks for reading, and praying for her! More updates to come!
Alex & Maria
godloveseliana 