Posted (Tina) in All Posts on March-13-2008

Ella had a rough night of sleep, so we gave up and called it a new day at 6am.

During the day, she was in a great mood considering she had little shut eye. Our big project for the day was getting to the pediatrician.

We thoroughly enjoyed our visit with Dr. Sarantos. She is so sweet and knowledgeable; we feel so fortunate that she was nice enough to take on a complicated baby like Ella, even for the short term.

Most of the appointment focused on food strategies and Ella’s eating trends. She could not stress enough how much to continue to push through the tough times and get Ella to eat orally with the bottle. She spoke with such conviction, since this was a personal challenge for her with her CDH baby too. On the extreme, she talked about someone she knew that has a 14 year old son that still has his g-tube since he did not learn to eat when he was young.

We discussed ideas such as adding a little bit of sugar to Ella’s formula to make it more enticing. Not only will it add those few calories, but maybe it will make it more interesting for her. She did tell me that when it makes sense with Dr. Kays plan, I can try feeding Rice Cereal to the Bun. We are excited to take that next step and try it when the time is right.

Another mom that reads this blog suggested that we try placing Malox on the g-tube site in the gauze to help with granulation tissue build-up. Dr. Sarantos suggested that we try it; it certainly will not harm her skin. So we are excited to try that remedy to see if it will help with that issue as well.

We are still waiting to hear from Dr. Kays concerning the addition of oil to Ella’s food at night as well as the results from her blood work earlier this week. There is concern that she might be too dry and if that is the case, he may want to change her diuretics.

Whether it is adding oil to food, trying rice cereal or changing the diuretics, we want to make sure and only make one change at a time with Ella. If we get too aggressive, we know that Ella does not respond well to change in the first place. Along with that, if there are any negative side effects, we will not know what is causing the symptoms. For now, we are on hold until we hear back from Dr. Kays.

One change I attempted this afternoon was the weaning of oxygen. I felt like Ella gave Dr. Kays a fake saturation of 94 in the office the other day. And he wanted it higher because I know he wants to wean her (she has been at 500 since she first went on cannulas in mid-December). So while she was asleep and sitting at 100 today around 4:45pm, I weaned the oxygen down to 400, just to see what would happen. There was no change. For now, we are going to try it and adjust if necessary. We do know that the rule of thumb is 90 or above when she is awake and 95 or above when she is asleep. We will see how she does overnight and into tomorrow.

In the meantime, we are still trying to feed orally which is a huge challenge. Ella seemed to be interested in it initially, but I think that she is getting tired of the air issues that it causes. And although Dr. Brown’s bottle is the best for her, the real issue is how Ella tries to suck on the bottle. She does not latch on real well and really go at the eating. She might for a few rhythms, but quickly shifts the nipple to the side and catches her breath. It is hard work for her and not natural to breathe, swallow and suck at the same time. It is hard to explain, but she gets really frustrated and fussy with the oral feeds.

While I am doing this, I can tell that air is getting in her belly so while I am holding her, I will hook up her g-tube one-handed which takes major coordination. Then, I have to hold the syringe as low as possible in one hand while still holding her with the bottle and let her try to eat. This way, she is venting at the same time and the air in her belly can escape. While this is happening, sometimes the gas can get painful so she will push up the food from her belly all the way back into the syringe. Again, tough to coordinate all this on my own. If she decides to really pitch a fit, I have to ask Josh to intervene and turn up her oxygen.

As a mom it is really tough because I feel like I am torturing her. Every 3 hours, I have to feed her and try to convince her, distract her enough to try and get her to try eating orally. It will literally take up to an hour just to get her to take 20ccs. And you can tell it is directly from eating orally because if I give her the binky or stop making her work, she calms right down and regains her color and good mood.

Please pray specifically for Ella and her eating challenges. We need for her to gain weight and progress forward, but we also need her to learn to enjoy eating.

Her last meltdown of the evening occurred during the feed at 9pm. Once she calmed down and fell asleep in my arms, I could feel her breathing hard and deep. She was up and over my shoulder, so I could feel her chest movement and the breaths near my ear.

I stopped for a moment to praise God. My baby girl could not even take a breath when she was born. And here she was after her episode, breathing in and out, with all her cuteness.

Psalm 22:10
From birth I was cast upon you;
from my mother’s womb you have been my God.

Jim and Char Jordan on March 13th, 2008 at 8:38 pm #

Golly you just have to try, try again. Although it is tough the results of not trying to get her to eat are far more disappointing in the future. Keep the faith. Keep at it little family, we love you. Aunt Char and Jim

Mary Brattich on March 13th, 2008 at 9:40 pm #

Hi – I am mom to an 11 year old son who also had a large CDH and many lingering issues so I can relate to what you are going through and know you are getting lots of advice… but want to just comment on two things – first of all a wonderful website on feeding is – esp the Feed your Mind section. Oral aversions are so complicated and I will speak for our situation, but continuing to work on food intake did not work for us. What worked was dealing with the sensory issues – rubbing the gums, esp in the back where swallowing takes place, vibrators on the cheeks and lips – when they are comfortable with all sorts of stimulation there, usually their acceptance of food is much greater. Using the baby toothbrushes that you put on your finger – dipping a nuk brush in different flavors. Is your OT addressing her sensory issues? That is huge for many of these babies who have had long hospitalizations and there is a lot on the internet that you can learn from. Also her PH – you may already know this, but Dunbar Ivy who is in Denver is one of the best pediatric experts in the U.S. and is probably the only doctor who has written about their experience with CDH and PH that lasts past the neonatal period. I just hope you will look him up when you return to Denver. Many of her GI issues will hopefully resolve as she grows – it is just a very long process, but growth really helps everything. I feel for you that you aren’t getting good sleep. That is so tough and I hope that starts to resolve soon for you all.

You sound like wonderful parents and the love you give her goes such a long way – she is a very lucky girl!

Mary, mom to Gianpaolo, many CDH issues, but very happy sixth grader.

The Laz Fam on March 13th, 2008 at 11:15 pm #

beautiful pics! praying for your wisdom, and that you will know exactly what God desires for your sweet girl’s health and improvement. you are both so amazing with her!
on another note, I (K) am headed to Colorado Springs on Saturday — can’t wait to see your beautiful state!
prayers and love ~ KTJB

Matt, Abby, Austin & Caed on March 14th, 2008 at 6:10 am #

She looks great in those pictures! Just take it one day at a time, the Lord has that baby girl in His hands and knows her needs. We’re continually praying for you three, that you will receive rest in Him and peace and wisdom. Every day that goes by is another miracle in itself.

Kristen on March 14th, 2008 at 6:41 am #

Oh my goodness, Ella is so beautiful! I see the face and light of Jesus in her! Yes, thank you Lord for this baby who is getting stronger and stronger, breathing strong and easy on her mama’s shoulder. What a precious miracle! Blessings!

Lisa T on March 14th, 2008 at 9:27 am #

She gets more adorable by the minute. She’s already overcome so much… it doesn’t seem remotely possible that she won’t overcome this next little hurdle, and fast. Go Ella!

Chambers Family on March 14th, 2008 at 3:20 pm #

Suck – Swallow – Breath (SSB) That was tough for my little guy and kept him in the NICU just for that. It also caused a lot stress for him and he would get the hiccups! I hope that she gets better with the bottle… Then later – you be begging her NOT to want the bottle and to switch to a sippy cup! So funny how that works. Full time Mommyhood must be exhausting with little Ella but incredibly rewarding too! You are amazing!

Joel Snyder on March 14th, 2008 at 3:33 pm #

Ella, I just got home from work and just read about your day. I am glad to hear you are doing O.K. and that you will be working on the feeding issue. I am busy working on Tacos eyes and the good news is that she seems to be getting better. I will check on you later. Love,Grandpa!!!! Love,Grandpa!!!!!!!!!!

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