Our Ronald McDonald House visit

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Little Miss Darcie Do: The call that changed my life.

It was June 29th. We were sitting in the children's section of the library watching Cam and Kay play with the trains when the call came. It was Darcie's cardiologist. She had consulted with the other doctors in the clinic and they decided that we couldn't wait any longer for open heart surgery. She said Darcie just had too much damage to her heart and was struggling too much. So even though she was still not even 7 pounds it was time to schedule surgery. They wanted us to come in for another echo, EKG and lab work and they were sending our file to Dallas so we could be scheduled for surgery.

We were able to have the surgeon we wanted but he was out of town so surgery was scheduled for July 17th. We have to be in Dallas for pre op appointments at 9 am on the 16th. They will do more labs, x-rays and another echo. We will get to meet Dr. Forbess and they will take us on a tour to show us where we will be. We were told we have to keep her healthy. If she has a fever or illness at any time during the 10 days leading up to surgery they may have to reschedule. We were assigned a case worker at the hospital to help us with out of state lodging and insurance pre authorizations.

We start the process of getting all the details worked out. It is a bit overwhelming. My call list looks like a medical directory. Social workers, insurance case managers, medical supply, home health, nutritionist,  three different hospitals, two different insurance companies, Ronald McDonald House, child psychologists, DDSD, SSI, lactation consultants, Sooner Start, Sooner Success, blood bank, physical therapy, cardiologists, and pediatricians. I call and cancel all appointments for six weeks and have to explain over and over again that we are going to Dallas for heart surgery. No not for one of my parents, for the baby. People are shocked and don't know what to say.

So many people tell me they are amazed at how calm and positive I am. Here is the secret. Just because I can explain complicated medical procedures with a calm positive tone doesn't really mean I am either of those things. I tend to giggle when I get nervous or upset so that covers the concern in my voice. I cry every day. Sometimes it sneaks up on me. I try to be positive and strong for my family and for Darcie but the truth is I am a mess. I don't want anyone to know the real thoughts that go through my head.

So here is the real stuff. And I am warning you don't read any further if you don't want to know the stuff the doctors have to tell you behind closed doors. Our cardiologist asked me how much I wanted to know, how many details of what would happen. I said tell me every bit. If Darcie has to live through it I should be able to at least hear about it. I would rather know ahead of time than wait and be shocked after the fact. She said she always tells the parents to eat while their child is in surgery because you won't want to or be able to eat for a long while after you see them. She will be unrecognizable. She will have so much swelling and trauma that if we weren't told she was ours we wouldn't know her. Because of her size and the probable amount of swelling they may not be able to close her chest so when we first see her everything may still be open. They said to plan on her being in the hospital for three weeks or more and recovery will take six weeks. While this surgery has been done many times and they have successful patient outcomes most of the time it is still open heart surgery and it is invasive and has risks. That is the thought I don't want anyone to know. The fear that I can hardly admit to. We could loose her. A complication, a bad reaction, a small slip and we could loose her. It gets hard to breathe if I even think about it and I have to tell myself it is not even a possibility. She is so strong and determined I just have to believe she will fight her way through this.

I know so very many other families have been through this and worse and been fine. But this is the first time for us and we are struggling. Yes we believe she will be fine and we will get through this and any future surgeries she may need. But it is hard and we worry for her. We have done our research and found the best doctors to help her. I know we have no choice. If we don't do the surgery she will eventually die from heart failure. I know it is what is best for her. So in a week I will hand my baby over for surgery. It is right but it will also be the hardest thing I ever do.

Darcie not very happy about getting blood drawn.

Little Miss Darcie Do: Just Keep Swimming

Miss Darcie with her new feeding tube

It has been too long since I updated but things got a little crazy for a while. I try really hard to think positive and not worry too much about my sweet little hunny biscuit. It is hard sometimes. It is hard when your baby is sick and you can't fix it. Around the first of May Darcie stopped rolling over and seemed to have trouble holding her head up as much.  We were really worried about her. She was lethargic and just wanted to sleep all the time. She was floppy and had no energy.  We were really struggling to help her gain weight. We added extra calories but she was still vomiting and losing ounces. We took her for her cardiology appointment on June 1st and she had not gained any weight since the last visit so they decided to admit her. 

She had a NG tube put in and we started feeding her through the tube. 55 ML over an hour every three hours around the clock along with some medication adjustments and she finally started to gain some weight. The doctor watched her drink a bottle and found that she was getting exhausted. She was expending more energy and calories to eat than she could take in by eating. The tube allows us to feed her more and she doesn't have to work to get it so she can save her energy for growing. 

They also discovered another hole in her heart bringing the total to three. The combined size of the holes is almost a centimeter. That is why she is having to fight so hard. She has a large inlet Ventral Septal Defect between the valves. An Atrial Septal Defect, a hole between the upper chambers of her heart. And a muscular Ventral Septal Defect, a hole between the lower chambers of her heart. 

We got to go home from the hospital June 5th. We take care of all of her feeding and medication through her tube. If she pulls the tube out we have to put it back in. This is traumatic for Darcie and everyone around at the time. She screams and we have to hold her down. We check for placement by listening to her stomach for the bubbles when we inject air through her tube. We are all exhausted but she is gaining weight. She feels better, she looks better and she is more active. As of today she weighs 6 pounds 13 ounces at four months old.  Still tiny but she has gained over a pound since being admitted. She had only gained 4 ounces since birth before her hospital stay. 

She is such a strong little lady. It hurts my heart to watch her struggle and hurt. She is doing amazing now and getting stronger every day. She will be going to Dallas to have her heart surgery soon. Some days I think I wish we could hurry and do the surgery now. I want to get it finished so she can start getting healthy. Other days I think I am not ready for this at all. I need more time. Handing my baby over to be taken to surgery will be the hardest thing I have ever done. I don't want to let her go. But if she can be strong enough and brave enough to go through everything she has been through I will just have to be strong and brave too, for her. She never gives up and just keeps swimming. 

Miss Darcie has her own facebook page now: https://www.facebook.com/DarcieODaniel

Darcie spent father's day in the ER with her daddy. She pulled her tube out and we didn't have one at home to replace it. 

Little Miss Darcie Do Changing the World.

I would like to work towards getting a law passed that requires all hospitals to do mandatory screenings for congenital heart defects in newborns. This would be similar to the law that required hospitals to perform newborn hearing screenings to identify children who are Deaf or hard of hearing. Before the mandatory newborn hearing screenings were passed many children with hearing problems slipped through the cracks and missed important early intervention opportunities. The same thing is happening with children who are born with heart defects. These babies are sent home as healthy. Sometimes this has deadly results. By the time symptoms develop it may be too late for treatment or treatment isn't as successful. 

Congenital heart defects occur in 7 to 9 of every 1,000 live births in the U.S. The challenge is that a baby can be born with a heart defect and look totally normal and healthy. If you can identify and treat kids before they get too sick they will have a better chance at a successful outcome. 1 in 6 babies who die from congenital heart defects are not diagnosed. These cases that are missed are thought to cause 200 infant deaths each year. An estimated 2,000 babies a year could be diagnosed and treated sooner if pulse oximetry screenings were used. This is an inexpensive, non invasive test that is easy to perform and it will help save lives. 

My baby girl has been diagnosed with a congenital heart defect. She was not tested in the hospital even though she is in a high risk group for heart defects. We were told she was healthy and sent home. Luckily I knew something was wrong and asked the doctor to check her heart again. We found her heart defect and are now waiting for open heart surgery. However, she was already two months old when we got her diagnosis. We were lucky to find it while she was still in the early stages of heart failure. Not all children with heart defects are so lucky. 

I am attaching links to a few sites that discuss the pros and cons of the newborn screenings for these defects so you can read about it for yourself.  If you support this idea and can help in any way please let me know. I have contacted a friend who is running for the Oklahoma house of representatives and he has agreed to help me write legislation to present during the next session.  

I want to share Darcie's story. It may help some other family. Please feel free to re post this information. 

                 Darcie Do and her siblings/best friends, Taylor, Cameron and Kaylynne

http://articles.latimes.com/2011/aug/21/health/la-he-heart-screening-20110822

http://www.newstimes.com/local/article/Looking-for-a-baby-s-heart-problems-3550381.php

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Our Family 2-2012

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Darcie First Two Months

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Little Miss Darcie Do. More Adventures in Pediatric Cardiology.

May 10-2012


Darcie gets another echo. This time Daddy was there to hold her hand so she didn't cry.

Another visit with the pediatric cardiologist and another day where we leave with news we didn't want to hear. We keep hoping Darcie's heart will get better or at least not get any worse. Today they checked her vitals and her breathing is more labored, her lungs sound wet and her color is not great. She also has not gained any weight. Still 6 pounds and 19 inches long. She is sleeping a lot of the time and we have a hard time waking her to feed her. Her body is working so hard she is exhausted and using all her calories to pump her blood. 


They did another echo and found more damage. She has another hole in her heart, further down from the first one, in the muscular septum. The original hole is bigger than they thought (9mm). She is in the early stages of heart failure. She is still too little for surgery but if things don't improve we may have to go ahead and risk it. They want her to weigh 11 pounds for surgery. 


They are starting her on Lasix to help remove some of the fluid around her lungs and help with her congestion. Digoxin to help her heart rhythm.  And Enalapril to help loosen blood vessels so blood flows more smoothly and the heart can pump more efficiently.


We are to increase her calories by giving her formula with extra powder added. She can't have more fluid because of her congestion issues. I can't breast feed her anymore. I can pump and add formula powder to the breast milk but she has to get as many calories as possible without increasing fluids. I am really sad about not being able to feed her. She won't take a bottle from me because she doesn't understand why I won't let her nurse. So we are both missing that time together. We have to wake her every 2 hours to feed even during the night. The medication is supposed to help her be more alert. 


We go back to the hospital in a week and see if the medication has helped. She is such an amazing little lady. She will win this battle I am sure. I just have to hold on and keep up with her.  

Little Miss Darcie Do. Fundraising.

Our sweet friends have been helping us with fundraisers to raise money for Darcie's medical, travel, prescriptions, special formula, equipment and some home repairs to keep her safe.   It is hard for us to ask but people have requested to know how they can help. Here is the information:

http://www.youcaring.com/help-a-neighbor/Friends-of-Darcie-O-Daniel/44669



We also have a bank account set up for donations for Miss Darcie.
You  can send donations to:
Darcie O'Daniel
MidFirst Bank
630 W. Main St.
Norman, OK 73069
405-943-8002


Thank you all. We appreciate everyone support so much!