Enough time has passed and I felt that it was about time to write about my daughter Olive’s journey. This is part for her and part of therapy for me. I would like her to understand what it was like while all the details are fresh in my mind. Before I talk about Olive, I need to talk about my older daughter Meadow.
Meadow had severe reflux and slow stomach motility when she was born. Her stomach was slow to digest food so she never felt hungry enough to want to eat and she also vomited daily until she was 14 months old. Due to all that trauma, she developed food fears and oral aversions. Fast forward 2 years later and she is a whole different kid thanks to speech and feeding therapy.
When I found out I was pregnant with Olive, my husband and I had some fears that she would go through the same things as Meadow did. During one of my ultrasound appointments, they noticed Olive was not growing as well as she should have been. I had what is called a partial umbilical cord insertion. That meant the the umbilical cord grew in the side and not the center. When the cord grows in the side, it cannot spread it’s roots out enough to nourish the baby well. So she was not getting enough nutrients. There was nothing I could do but pray she would get to be a decent size.
Olive was born on May 23, 2011 after only 2 hours of labor she flew out into the world. She was tiny, only weighing 5 lbs 3 oz and she was 17 inches long. She got check out by the doctor and we were told that she was okay to come home with us just like any other newborn.
As you can see she was tiny.
Shortly after she was born, she developed this horrible butt rash that wouldn’t go away. We had her on a special formula because, just like her sister, she was allergic to everything including breast milk. Changes in diet were no help. She had a milk/soy protein allergy. When we took her to the doctor for her 1 week checkup, we thought she had been eating okay, but it turned out she had actually lost weight. The doctor seemed a bit concerned and wanted to see her back in a few days. We were charting what she ate and we thought it was a lot for a teeny baby. We were shocked she wasn’t gaining. When we went back, she still hadn’t grown much. They decided to change her formula again. She also began to vomit every meal just like Meadow had. During all of this, I should mention, I was falling apart mentally between, my husband working around the clock and I was left, sleep deprived to take care of two babies. One had the feeding issues and then we had no clue what Olive’s problems were. We were living in Las Vegas with no family support. We were drowning in medical bills from my older daughter’s many hospitals stays. So, we made the tough decision to spend our savings to pack up and move to Texas to be near my husband’s family. We basically moved in with them for the help and to get back on our feet again.
During the drive from Las Vegas to Dallas, we noticed Olive started to deteriorate. She was eating less and less. We thought it was due to the heat. We moved in the middle of the summer and it was so hot that the AC couldn’t even keep up in the car. She actually got so bad that my husband decided to put us on a plane in Amarillo and she and I flew the rest of the trip. Once we were in Dallas, she still wasn’t getting better. We decided to take her to the hospital to get some fluids. They took one look at her and admitted her for failure to thrive. She was 3 months old and only weighed 9lbs.
We spent the next 9 days in the hospital while they ran various tests on her. Some of the scary ones were for cystic fibrosis and brain tumors. I was an emotional wreck between the lack of sleep and the stress of the move. One of the tests they did was a swallow study. That is when we found out she was aspirating all her food. The nurses kept saying by the grace of god,she was spared pneumonia. They sent her home with an NG tube. That is a tube that goes up your nose and all the way down to your stomach. We were taught how to place it if it came out. A horrifying experience for both parent and child.
When we were home, she still continued to vomit, so much in fact, that she would vomit the tube right out. We ended up back in the hospital to have a G tube placed. That is a tube that goes through the skin and is held in by a balloon. This is what it looks like.
Making the decision to have the surgery, was the hardest decision, but also one of the best I could have made. It SAVED HER LIFE! She did continue to vomit daily until we started the blended diet. Despite her hard beginning, she is the biggest goofball I have ever met and is never without a smile. This photo captures her spirit.
Living with my in-laws allowed us to pay off all our medical bills and save for our own house. We bought a house in April. We will be forever grateful to them for letting us get back on our feet. Olive no longer aspirates and eats small amounts orally now. She is a totally normal 21 month old. Her speech is delayed due to having the tube, but other than that, she is fine. I know in my heart that we will be rid of the tube one day. So that’s the whole long story about my little fighter.
Both girls are beautifull
Thank you!
Wow. What a touching story. My daughter had acid reflux and I thought being sleep deprived from THAT was hard, but it was nothing. Thank goodness your beautiful children are fine and you are back on your feet.
I think reflux is getting more common these days. Probably to do with all the additives in food.
Mercy – that was hard to read! I can’t imagine what it was like to live through. I’m so sorry for all you’ve been through. How awesome that she is doing so much better now and there is hope that she will completely recover. She is beautiful, best wishes for a total recovery.
Thanks
Thank you so much for sharing your story. What a pair of beautiful and brave little souls you have there. I wish you all the best. I know they are going to be just fine.
Thanks! I know in my gut that she will be fine. She has to learn on her terms and that is what she is doing now.
You have beautiful children. Keep up the good work.
Thank you.
Very well written! What beautiful little girls you have! Certainly blessed!
Thank you.
Kudos to both you and your husband (and your in-laws too), for fighting so hard for that sweet little baby. Both my boys had feeding issues (casein and fructose intolerance’s) that were not life threatening, as your daughters were. Scary and frustrating none the less. It wasn’t until my youngest was two that we finally had them diagnosed properly. They are 5 & 7 now and doing well. We struggle with fruits and vegetables because at one point we literally had to entirely remove everything but rice and chicken from their diet and reintroduce everything one by one. Many fruits can still bring on rapid and violent diarrhea if they have more than a few bites. There was a point in our lives where I was just happy to see them eat anything and if it didn’t make them sick and they wanted to eat it I let them have it, because they were so underweight, they looked like I was starving them. Well slowly but surely things got out of control and somehow processed foods crept into their diets. We are now working hard to get things back on track, and it is not easy! But they are old enough to understand why we are doing this, which helps. There are lots of tears, and lots of meals when they just refuse to eat what I’ve prepared but they are healthy enough now to skip a meal if they choose. Your blog has been a real inspiration for me, and has given me many yummy ideas to whip up for them. Also my recent purchase of a Vitamix has been lifesaving! I can add veggies, berries, and citrus (which have more glucose than fructose and glucose helps to move the fructose through the digestive system) to some of the more bothersome (high fructose) fruits and they can enjoy them without GI distress. For the first time in their lives they are getting more that 2 servings of fruit and veg a day, and that makes me feel very relieved. Thank you for your blog, I truly appreciate it!
I can totally relate to your story Sarah. I went through that same thing with Meadow. I was just happy to see her want to eat anything. It has gotten MUCH better, but I will never say it’s been easy. She has come around to liking lots of different foods, but it took time for that to happen. Honestly, I think school has helped her a ton. Your boys are lucky to have you as a mom!
Wow! You should just go by super mom. I cannot imagine! So glad that things are working out!!
Thank you. I just did what I had to do as her mom.
Your girls are beautiful and I know that had to be hard to go through. I send prayers for all!
You are a brave mama! Thanks for sharing <3
Thanks for sharing, that couldn’t have been easy to write! You are so brave, I’m glad that both of your beautiful babies are doing better.
Thank you…me too!
My heart completely goes out to you. I have tears in my eyes reading your story. I commend you for holding it together during such difficult times. I also commend you for getting her off of the formula, and giving her the whole foods diet instead. Amazingly wonderful what you’ve made out of such a bad set of circumstances. *hugs*
Thank you. Getting her off formula was the best thing we could have ever done.
Oh, Melissa thank you so much for sharing this. I am crying. What an incredible story and look at her! She is doing so well and she’s so healthy. Yes!! Good job, Mama!! You are strong even through your weakest moments, that is apparent. I’m glad we ‘met,’ even if digitally
-Rama
Thanks Rama! I am glad we met too. I think we are kindred spirits.
What a wonderful ending
I can only imagine how difficult it must have been. You are a strong family! Take care and thanks for sharing. She is a beautiful, healthy, sturdy looking little girl now!
Thank you. She is my little goofball.
As a momma of a 22 month old son, my heart ached for how desperate you must have felt. She’s lucky to have a mother who advocates for her health and has set out on a mission to change her life for the better. I’m so encouraged by your story and your blog!
Thank you!
Thank you for sharing your story, it must have been such an incredibly challenging time! It’s so hard sometimes when something is “wrong” with one of your babies, the worry that can slip into our thoughts – unwelcome and unannounced! You seem to have a great attitude about it all, and that is the difference between a mother’s Failure to Thrive, and living momness to the full! Congrats on a house too, what a great thing!
Thank you!
Thank you for sharing your story with us. You are such an inspirartion and your girls are just beautiful. You have already touched so many lives through your site and I think sharing this will impact many more.
Thanks for reading.
I hope so! I feel very blessed. A family friend told me once that God puts certain children in the hands of those who will best take care of them. I truly believe that. I have met some amazing people on this journey with my daughter.
People who share personal challenges are super heroes! I am sure your precious Olive got stronger in conjunction with the unconditional love of her family. It may not be scientific, but I think it’s real.
And the name Meadow was a top contender for my little girl Madigan.
Your little girls name is cute too! I just did what I had to do as a mommmy. She is the super hero!
Wow! I almost made it through it without tears…almost. What sweet girls you have. I am so happy to hear that Olive is doing well on a blended diet. So many of the experiences you went through with your daughters are so similar to the ones we have gone through with our son and now our daughter. I totally understand when you say that making the decision to get the G-tube was the hardest decision, but also one of the best you could have made. I have said that so many times about my son! He had been losing weight for 6 months, despite my constant efforts to get enough into him to keep from having to put the tube in. I came up with some pretty intense concoctions during that time. LOL! I was even getting up during the night to feed him since he could suck down his drink while he was basically still asleep. He continued to lose weight. It is a tough call that we as parents have to make some times. Once he got the tube placed, he began to gain weight, but still had lots of other issues, many of which going to a Blended Diet has helped! Having the tube has truly been a blessing!
My daughter has the same condition as my son and I’ve always said that if/when the time comes that she needs a tube, I will do it sooner rather than later because it was obviously the best decision for our son. I’ll tell you what, it is not much easier to make that decision a second time even though I know it will be better all the way around. She is struggling, but we are trying so hard to wait as long as we can before doing the surgery. Like Meadow, she also does not feel hunger, so has very little desire to eat or drink. Due to her condition, her muscles are also becoming weaker which makes it hard to chew and swallow. She fatigues easily so it is just not worth the effort to her to eat. I know it is coming. The only real benefit this time over the last is that I know so much more now. More about nutrition, more about blended diets, etc, thanks to people like you who are willing to share what you have learned. Thank you so much for what you do for us. Thank you so much for sharing the story of your daughters with me. It is obvious that you are a fantastic mom!
Tammy, God Bless you and your beautiful kids! They are lucky to have you as a mom! Someone once told me that God places special children in the hands of those he feels can give them the best care. I honestly believe that. All the stuff I have been through with my girls has only made me stronger and love them that much more. I would not trade them for the world.
I feel the same way!
Wow! What a story. I’m so glad you had your inlaws to help. And I’m thrilled to hear both your girls are doing good. Children are such a blessing. And it’s heartbreaking to have them go through hard times.
Yes, we feel very blessed. Thank you!
You are a geat mother and i wish you the best. are you and your husband on having any more children maybe a son???
Thank you. No more kids for us.
I wish I had started having kids younger than 33. I probably would have had a few more.
I am not a person that cry’s easily, your story brought me to tears. I am so glad to hear your girls are doing well. And you as well. I love your site, keep up the great work.
Thank you! I wouldn’t change it for the world.
I’m so sorry you have had to go through this, but I can honestly say I know how you feel. We went through something very similar with our youngest daughter. When she was born, she spent 5 days in the NICU with an infection and “acute kidney failure”. They had to weigh every diaper until her output was sufficient enough to be sent home.
When she was 5 weeks old, she started making this very funny noise after nursing one morning, kind of like a seal, but not like the whooping cough commercials you see on tv. This continued for about 30 minutes. As we were waiting for the Dr. to call us back and grabbing stuff to go to the ER, she projectile vomited across the room worse than anything I had ever seen. The Dr. said she probably just drank the milk into her lungs without realizing, but since the noise was gone, the vomiting seemed to force it all out and she should be fine.
Exactly one week later, I was changing her diaper and outfit to get ready for bed and she stopped breathing. He chest completely caved in and she had this absolutely terrified look in her eyes as she struggled to take a breath but simply couldn’t. We rushed her to the ER where it happened 6 more times. The four nurses that had gathered in our room didn’t even know what to do; they just kept passing her around trying to stimulate her to breathe but it wasn’t working. Finally the Dr. transferred us to a different hospital that was better equipped to handle this type of thing.
She spent 7 days in the pediatric ward where they scared us with ideas of strokes and seizures before they finally realized she has “Extreme GERD” and “GERD-induced apnea”. She had to have the nose-insertion tubing in for days for testing. They said her stomach produced so much acid that it was coming up her esophagus and blocking her airway. They put her on a bunch of medications and finally sent her home even though she was still having episodes. I spent 4 months doing an extensive elimination diet to see if it was caused by anything I was eating, but it turned out it wasn’t.
We were instructed to keep her upright whenever she slept and to feed her in very small amounts every hour around the clock, and hold her upright for 30 to 45 minutes after each feeding. If you do the math, you’ll realize that she was in our arms 24/7. The insurance denied us an apnea monitor (don’t get me started) so we had to buy one out-of-pocket. I can’t remember the last time I had a good night’s sleep because it has failed to go off during an episode on more than one occasion.
She just turned 1 a few weeks ago and she is definitely doing much better, but her monitor still goes off about once a week, she eats small meals around the clock, and she doesn’t sleep well because she hates her sleeping wedge that we bought to keep her at a 45% angle (also not covered by the insurance). Supposedly, most babies grow out of it, and most of the ones that do do it between 12 and 18 months. So, we are entering what may possibly be the light at the end of the tunnel, but only time will tell.
P.S. Your girls are beautiful! Treasure every day
Bless her heart. I know EXACTLY what you are going through. My older daughter had slow stomach motility and I would have to hold her upright for hours after feedings. Sometimes I didn’t even eat because I was so afraid that if I put her down, she would puke. There is a light at the end of the tunnel for sure and you will be there. I never thought the vomiting would end. Hang in there mama! Have you tried propping blankets under her crib to help keep her upright? We did that with Meadow.
Oh my gosh! Same here! I lost so much weight between the stress and the fact that I’d rather hold her to be safe instead of eating. Her umbilical cord was also to the right and she was failure to thrive. I had to pump my breastmilk and add formula to it to double the calorie load for 3 months. It was crazy.
As for the crib, we co-sleep. (Controversial, I know, let’s not go there – it was a decision we made to be closer to her because of how ridiculously often her alarm goes off, not to mention it doesn’t actually go off until she has reached 20 seconds of non-breathing.) Anywho, we fashioned her Boppy pillow in a way that holds her comfortably, keeps her upright, and doesn’t drive her nuts like the wedge apparently did.
I have switched my entire family over to almost all “real food”. We rarely buy processed food and I make almost everything from scratch and use pretty much organic everything. No colors, additives, MSG, GMOs, nothing artificial, but she still refluxes and just had her Zantac dose increased for the fourth time. It’s nice to know that nothing I am doing/eating/feeding her is causing it, but at the same turn that also means I can’t do anything to fix it. I have to try not to focus on it because it can really get to me some days. I don’t think anybody realizes how hard it is unless you’ve been there. I still have people give me grief about “spoiling her” because I’m “holding her too much” and I “never let her cry” – I could never get them to understand that she needed to be held upright constantly and that she would reflux severely every time she got upset and cried. They don’t understand why I can’t drive alone with her – they think I’m babying her by insisting another adult be in the back seat with her, but she refluxes a lot in the car and the recline on her car seat would make her choke and gag and we have had to quick pull over in the emergency lane more than once because she was starting to aspirate. These things aren’t choices – it’s required. I know you understand all of this, I just wish other people got it. I actually wanted to make T-shirts that said “Don’t judge me – there’s a reason for everything I’m doing.”
I would so buy one of those T shirts! LOL. We have co-slept many a night, but they sleep in their rooms as well. Some nights both of them end up in our bed. I can’t lie. I kinda enjoy the snuggle time.
Have you thought about trying a new med? Zantac didn’t help with my older daughter. We put her on prevacid and finally saw some results. We gave her that until she turned two and then we stopped it because she no longer refluxed. We just stopped Olives reflux meds too. Now she is only on an allergy med.
For some reason, her ped doesn’t seem receptive to changing meds. When she was 6 months old, he said starting solid foods would help her. When she was 9 months old, he said giving her more solid foods would help. He increased her dose at 12 months. It works, but if she oversleeps and misses a dose by 30 minutes, she wakes up refluxing. As for co-sleeping, I would let her stay in her room sometimes if it were closer – our house is laid out very poorly. It’s long and the bedrooms are on opposite ends. But it works for us
That made me cry. Because you had to go through all that and because both girls are doing great now. I love your hair in these pictures!
My girls are strong fighters. Thanks! When I lived in Las Vegas, a friend of mine was a hairdresser so my hair changed a lot. It’s kinda boring now. lol.
Thanks for sharing your story. Two very beautiful children with beautiful names. You are one strong mama and it looks like your girls are taking after you. I’ll be keeping you all in my prayers.
Hugs!
Thank you Heidi.
I love them to bits!
Wow, my heart goes out to you. When something is wrong with your child, it’s so heartbreaking. I’m so glad she is doing better. My prayers for you all for continued good health. Boy, and people think they have problems. You are a terrific mother, and your daughters are lovely.
Thank you. I feel very blessed to have them.
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God, you made me cry… I wish all the love, luck and happiness to you, your husband, the charming princess Meadow and this little fearless and beautiful baby Olive. You’re such a sweet miracle! (Not to mention how much I love your site and food
)
Thank you. I feel very blessed. <3
I have been following your blog for several months now but somehow missed this part about Olive until just now. All I knew before is that she was tube-fed. Good God, I am sitting here at work with tears running down my face. I have a one year old and three year old and just can’t imagine. I am lucky to say that my boys are both healthy but I had a scary pregnancy with my second….I developed cholestasis of pregnancy and had to be induced at 38 weeks….and I constantly think to myself maybe if I would have eaten better I could have somehow avoided it. I wasn’t as diligent about my eating as I was with my first pregnancy (due to having a toddler running around) and I just wonder. Anyway, both your girls are beautiful and obviously both thriving
Thank you! I love them to pieces and feel very blessed.
Olive’s story touched my heart! We have gone through many of the same issues with our son, James, who is now 3 and a half. I’ve had a rough round of pregnancies…a miscarriage, pre-eclampsia with my 6 yr old daughter, another miscarriage, the stillbirth of our first son, and then intrauterine growth restriction and pre-eclampsia with James. He was a 3lb. preemie at 34 weeks and ended up spending 3 months in the NICU. At less than 2 weeks old he developed necrotising enterocolitis (NEC), a potentially fatal infection of the intestines. He had emergency surgery and they had to remove 80-90% of his small bowel, which had already died, leaving him barely enough to survive. Due to the trauma and swelling, they could not close the incision across his whole abdomen, so he was left with an open wound, which took 2 months to heal. He had an NG (nose) tube for formula (literally only 1 tsp. per hour), an ostomy bag, and a central line (IV) in his chest for TPN nutrition. We had to fight to take him home after 3 months, as he still had all these medical contraptions we had to learn how to care for. It was terrifying, but as a parent you do whatever it takes to care for your child. He was hooked up to an IV pole and feeding pump up to 20 hours per day, but that didn’t stop our little fighter. He had bowel reconnection surgery at 9 months old (when they put in a Mickey button G-tube) and, by the grace of God, weaned off of TPN by age 2! He needed a few months of PT and feeding therapy, but luckily he got over his aversions quickly. (I feel ya about the daily vomiting, though!)
Now he’s able to eat pretty much anything orally, but still relies heavily upon his formula for calories (Pediasure Peptide 1.5), which I know is filled with sugar and who-knows-what chemicals…not to mention how insanely expensive it is! You mentioned that Olive was on a blended diet. I’d LOVE to find out more about this from you!! I’ve had a hard time finding information about high calorie blended diets for G-tubes that are geared towards kids (most are for adults and include supplements, etc.). Could you direct me towards the resources you used, recipes, etc? Please email me privately if you have a chance.
Thank you!!
Oh my gosh, your story is bringing me to tears. You boy is a fighter for sure. I had very complicated pregnancies with both my girls…some details I didn’t even get into on this post. Feel free to message me if you want to talk more. I would be happy to answer any questions you may have. melissa@mywholefoodlife.com
Oh my word – what a scary time! I’m so glad she’s doing well now. There’s just nothing worse than when your baby hurts.
Yes. It’s rough when our littles are hurting. She has come such a long way and I feel very blessed.
What is the ducky part protecting her skin made of? I am supporting someone who recently got a new Gtube and it is rubbing her skin, causing skin breakdown. She did not have this issue with her last tube. Is it homemade or something I can purchase??
thanks
Yes! There is this amazing company called Tubie Whoobies. They even have a FB page and there are so many designs. They also do custom made ones as well. They don’t bother her skin at all. The tape used to irritate Olive as well and we love the whoobies.
Thank you so much, I am Definetly ordering some!
You’re welcome!
Wow your story touched my heart. I can’t imagine what a difficult time that must have been. Your girl is a fighter. She is almost a year to the day older than my daughter and I can’t imagine going through that with a newborn and a toddler, what an amazing mom you must be. Just wanted to say your blog is changing my life, your recipes are so yummy and easy and I feel so good serving these foods to my little one and hubby. Thank you!
Aw, thank you! You are so sweet. I am so happy you like the recipes.