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

All of our slide shows in one handy dandy place

Our Family 2-2012

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Darcie Birth Announcement

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Darcie First Week

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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!

Little Miss Darcie Do's Heart.

We started to notice Darcie sounded congested all the time when she was a month old. She would gag when eating because of the fluid in her nose and throat. We also noticed her breathing seemed labored and she had a spot on her chest where it pulled in on the left side. She seemed to have poor circulation and her hands and feet would turn bluish and her whole body would get mottled looking.   


At her 2 months doctor visit we asked him to check her heart. He said he could hear a murmur and sent us to the hospital for an echo-cardiogram. They found a hole in her heart and sent us to Children's hospital in Oklahoma City to see a pediatric cardiologist. 

                         Darcie getting an EKG done. She likes for daddy to hold her hand.


Darcie had an EKG done then the cardiologist told us Darcie had a very large hole (8mm) called an inlet ventral septal defect. It was located between the aortic and pulmonary valves so it was hidden and harder to detect. She would need to have open heart surgery to patch the hole.  She is too small for surgery so they want to wait and give her a chance to grow a bit but they can't wait too long because it will cause more damage to her heart. They told us to come back in 2 weeks for another check. They want to monitor her closely. She now weighs 6 pounds. They are hoping to wait 3 months for surgery. 


This is what I have feared all along. Heart issues scare me. I don't want to have to turn my baby over to be cut open. The outcome for this type of surgery is generally very successful. Darcie is not in any pain and is a very happy baby. So we are all focusing on staying calm, strong and ready for what ever happens. 


Here is a slideshow I did of Darcie's first two months:

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Little Miss Darcie Do. Official Diagnosis.

We went for Miss Darcie's 2 week check up on March 8th. She weighs 5 pounds 1 ounce. She is doing well she is just tiny. Doctor says she is strong and her muscle tone is excellent. He declares she is a top notch baby.

Her blood test for Down syndrome came back and shows she actually has a rare form called Mosaic T-21. This means not all of her chromosomes are effected. She has a typical cell line and a T-21 cell line. People with this form of Down syndrome generally do not have as many health issues. The typical features you find with most people who have Down syndrome are not as noticeable with the Mosaic form. Many people who have Mosaic T-21 are not diagnosed until later in life because it is easy to miss the signs.

The doctor did a cheek swab to collect skin cells to test what percentage of her cells are T-21. It will take a couple of weeks to get the results.When we get the test back it shows she is 85% Mosaic and 15% typical. This may change over time because as cells regenerate the typical cells tend to replace the T-21 cells.


Darcie's first week slideshow:
  

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Little Miss Darcie Do. Birth Story.

Thursday February 23-2012




Darcie's birth announcement slideshow:

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My due date (March 6th) was still 2 weeks away. But we had scheduled an induction for February 29th. Darcie was planned to be a leap year day baby. I had yet another doctor appointment at 11 for a non stress test. I was averaging 3 doctor visits a week. It was a full time job with non stress testing, blood sugar testing, OBGYN visits, dietitian visits, and the maternal fetal specialist. I went into the bathroom to get ready for my appointment and my water broke. 


I went to find Harry and said "Hey, guess what? My water just broke!" He was calm as always but wanted to go. I insisted on taking a shower first and calling everyone to tell them we were heading to the hospital. He was a bit nervous because of my history of super fast births. Taylor took forever to get here (21 hours) but Cam arrived in 50 minutes and Kay was just under 2 hours. I wanted to finish decorating the cake I had just baked but Harry said, "Get in the car!!" 

My mom got Cam and Kay from school and they actually beat us to the hospital. Taylor was in the middle of a big presentation in his class so we let him finish and then aunt Sarah picked him up. They arrived just before Miss Darcie made her appearance. 


My water broke at 10:35 am and she was born at 2:06 pm. Only 3 and a half hours. Our doctor didn't make it in time. Darcie was delivered by the nurse after only two pushes. I did not use any pain medication so it was a bit fast and intense. Harry was so wonderful. He held me and talked me through it the whole time and kept me calm.  


When Darcie was born she was so tiny and she was blue. They didn't let Harry cut her cord they just grabbed her and took her to be checked. I kept asking if she was ok because it took her a minute to cry too. I saw her look at me before they whisked her away and we could see her moving so we felt better. My mom came in and didn't even realize she had already been born because she was so quiet. Her color looked better pretty quickly and she started to cry. They wrapped her up and brought her to us and we knew as soon as we looked in her beautiful eyes that she was enhanced with designer genes. We knew and it was all ok. She was so beautiful we couldn't wait to hold her. The doctor had arrived and told us that they were pretty sure she had Down syndrome. We never shed a tear about that because it didn't change anything for us.

She was healthy. Her blood sugar was a little low but her circulation was good and they couldn't hear any problems with her heart. They did a blood test to confirm Down syndrome but it would take a little while to get the results back. We were so happy and started to get to know our new baby girl. She got to meet her extended family and everyone said she was so beautiful. She had tons of hair and chubby little cheeks. We all loved her instantly and it felt like she had always been a part of our family. 

She was 5 pounds 6 ounces and 17 and a half inches long. We got to go home on Saturday the 25th. She had dropped down to 4 pounds 12 ounces. She slept a lot and had a hard time eating for very long. They found out her billirubin levels were high so we had to put her under the lights at home. They told us the hole in her heart had closed up but they never did an echo-cardiogram or an EKG to check for sure. We just focused on getting her to gain weight. She was such a sweet easy going baby. We had a lot of fun spending time with her siblings and seeing lots of visitors. 

Little Miss Darcie Do. The Beginning.

I have a lot to say about our baby girl, Darcie. We found out she was on the way with a call from the doctor on July 23rd 2011. I got pregnant around June 24th so we were a month along. It was a big surprise because I was on birth control and because I had my period just over a week earlier. I had been feeling sick for a few weeks and having abdominal pain. We thought it was my appendix. We were thrilled to find out we were having a baby even though it wasn't what we expected or planned.


On July 26th I started bleeding again and called the doctor. She told me that I could be having a miscarriage but all I could do was rest and wait to see what happened. After a few days I was doing better but I continued to try to take it easy. On August 18th I was resting in bed when I suddenly felt very strange. I was bleeding again and passed a softball sized blood clot. I was heartbroken and convinced I had lost the baby. We went to the ER and were told I could be having a miscarriage. They did a ultrasound and we saw the baby and heard the heart beat. She waved her little hand at us as if to say, "Don't worry I am fine!" I was sent home and put on bed rest. August 22nd we saw the OBGYN and heard the heart beat again. She said I may have miscarried a twin but the remaining baby was fine and growing. We were so relieved. Our baby was a fighter and wanted to survive against all odds.

On September 26th we went for a ultrasound and found out our baby was a girl. We were so excited. She would even up the teams. Two boys and two girls and two very blessed and happy parents. The ultrasound tech said the doctor needed to talk to us and left the room. That made us a bit nervous. The doctor came in and looked at the pictures then said she wanted to check a few things. She ran the wand over my stomach a few times and then gave us the news. Our baby had some markers that concerned them. They found a hole in her heart which they told us may heal and close up on its own before birth or shortly after. They saw an echogenic bowel, a bright spot on the bowel, which could be a sign of bleeding, obstruction, or infection. They also saw esophageal atresia, a congenital disorder of the baby's feeding passage that connects the back of the mouth with the stomach. Instead of connecting the mouth to the stomach it ends in a blind pouch because of a missing segment of esophagus. Finally, they measured her nuchal translucency thickness at 2.9. A measurement of 3 and above is considered elevated so she was on the borderline of normal.  All of these issues are markers for Down syndrome. 

I tried to ask questions but I burst into tears. I was picturing my baby being taken away for surgery over and over again to try to correct these medical issues. The doctor tried to comfort me and Harry held me tight. The doctor said she wanted to send us for additional testing. It could turn out to be fine. We consented to blood work but refused the amniocentesis because of the risk of miscarriage. We knew we loved our baby girl from the moment we were aware she existed. We would not consider terminating the pregnancy regardless of what testing may show. There was nothing that could be done to treat her prenatally so there was no reason to perform a risky test to find out ahead of time. 

The next few months were up and down and uncertain. The blood work they did to test my hormones and proteins came back normal but because of my age (39) and the other markers they told us we still had a chance of Down syndrome. We were not concerned about a possible Down syndrome diagnosis. Harry and I met while working at a hospital for children with developmental disabilities. We know some amazing people who happen to have Down syndrome. We felt we were well prepared for welcoming a special child. What we worried about was the heart defect and other health issues that may complicate her life. 


We had many ultrasounds done throughout the pregnancy. Every time we went to the doctor the news seemed to get better. During later exams they didn't see any issues with her esophagus and they could no longer find the hole in her heart. Her bowel looked fine and her femur was not shortened (another marker for Down syndrome). We decided to wait patiently and see what the future would hold. We knew it would be hard sometimes but it would always be worth it. 


We were told we had a 1 in 100 chance due to my age.
A 1 in 15 chance with age and the elevated nuchal translucency.
A 1 in 3 chance with age, nuchal translucency, and the markers that showed up on the ultrasound. 
92% of parents who are told prenatally that their child MAY have Down syndrome choose to terminate the pregnancy. 
I can't imagine giving up this gift we have been given. 

About our special family

This is our online journal and photo sharing spot. Basically my external brain so I can add our adventures and not forget our special memories. This will probably be a random shuffle of information. Stories about the kids. Cute quotes, cute pictures. Maybe some music and video clips. Just sit back and we will see where this ride takes us. 

Our introduction.

We have four special kids spread out in age from baby to high school. All four kids have medical challenges but they keep fighting. Some of our challenges are epilepsy, crohn's disease, celiac disease, asperger's syndrome, severe life threatening allergies, cerebral palsy, learning differences, physical delays, congenital heart defects, failure to thrive and mosaic Down's syndrome. Our lives may be full of doctor appointments, therapy appointments, medication and school meetings but it is also full of love. 

Mom, Jennifer. I am the one who writes and manages this crazy adventure. 

Dad, Harry. He is the one who supports us all and keeps us calm and moving forward. 

Oldest brother, Taylor will be 20 years old April 6 2013. He is a high school senior and will be attending college in the fall. He has epilepsy, crohn's and celiac.

Middle brother, Cameron will be 11 years old May 23 2013. He is in 5th grade and has asperger's syndrome and severe allergies.

Middle sister, Kaylynne turned 7 years old on January 25 2013. She was born with a club foot and mild cerebral palsy. 

Baby sister, Darcie turned 1 year old on February 23 2013. She is super tiny and has mosaic Down syndrome and congenital heart defects.