Dubuque, Iowa (IA) - Full trisomy 13
Photos by Ovation Photography

The last few weeks of his life, he was very cuddly and wanted to be held all of the time, and now I am glad that I did hold him and cuddle him a lot. Bennett was having some difficulty breathing on Saturday night, so we took him to the hospital. He was very agitated at this, which made his lungs worse. He was transferred to the PICU at 2 AM, where he ate and ate and ate. He was so tired but refused to sleep. We spent all night and all day holding him and feeding him until he had no strength left. So, we just held him and loved him. He was working very hard to breathe, and the CPAP didn't work, and the NO only worked for 1/2 an hour.

Nothing was going to make things better this time and Bennett knew that because even when he had no energy he was fighting the doctors. Jordan and I decided that Bennett wanted to go home to Jesus on Easter Sunday and rise with him. We held him until he was ready, then put him in Jesus' arms so he could take him home.

It was so beautiful and peaceful, and it was perfect being able to hold him and hand him over to Jesus instead of having him taken away. Every single day of Bennett's life was happy and precious, and I would not change anything or take back any of the time we had with him. If anyone needs to talk, feel free to email Jordan and I, and I will even give my phone #. The MIRACLE is now safe, happy, carefree, at peace, and has eternal comfort in heaven, but everybody misses him very much.

Jordan, Emily and Bennett Meyer
lovinglife_bennett@yahoo.com

- - - -

Update: 2-15-08

Bennett has been home for 2 weeks now and he is doing very well. His color is no longer jaundice, he weighs 9 lbs 2 oz and is 22 inches long. He has his first tooth that just broke through the gum, his eye tooth, the other ones are working on coming in. He likes to chew on the nipple of the bottle when he gets a chance. he is talking more and making all kinds of sounds. Bennett likes to sleep in his big boy crib in his own room at noght. He does quite well. He must be growing because he is eating quite a bit. He likes to be read to and to look at his toys. He sometimes reaches for specific toys that he wants to touch. He still holds his breath in response to pain but we can prevent them by blowing lightly in his face. He also likes Baby Einstein dvds. Our last stay in the hospital was a success. A doctor actually told us that he did not know what happened maybe it is a miracle because "this just doesn't happen." After reading and reviewing Bennett's chart he told us that he agrees with us; Bennett has no current life limiting anomalies. He still is treated unfairly by some doctors because of his diagnosis but we are making progress. We let the medical personnel that we didn't want an unneeded IV. We also told them that Bennett needed to eat because it was very important to him. They also wanted to put C-PAP on right away but we knew that Bennett dos not like tubes and he wasn't breathing poorly. His oxygen was just low. In the PICU they agreed with all that we said.

To all who have babies with the diagnosis of Trisomy 13:

Let's try to change the minds of the medical world. Let's have hope, we have proof that lfie is possible. The time is now to start advocating for the lives of these children. Little miracles happen everyday. I believe that the children on this website are all little miracles. Nobody knows a child better than their parents so be an advocate for your miracle.

God Bless and feel free to e-mail us at our new e-mail lovinglife_bennett@yahoo.com 

Jordan, Emily and Bennett Meyer

Update 1-11-08

Bennett is back in the hospital, we went and got two month shots and with the pain of the shots he cried really hard and had one of his episodes. All we had to do is blow in his face and he started breathing again, and this did happen three more times at home. Then, Saturday night, we had to use the amboo bag to get him breathing again. He was fine all night, then the next day had more spells where we had to blow in his face.

On Sunday night, Bennett got really upset, and we had to use the amboo bag again. I felt that he had a very weak pulse, so started chest compressions. It only took about ten and he was breathing again, but very shallow and was a dusky color. Jordan and I decided not to call the ambulance, just to drive him to Mercy Hospital in Dubuque. There they tried ten times to get an IV but could not. We asked to be transferred to IA city. Bennett loved the ambulance ride, smiling and breathing on his own. He did very well that night in IA City, but the next day he was very fussy and was crying all of the time so they put a nasal cannula on him. It was noticed later that night after Bennett's lungs had filled up with fluid and his right side of his heart started to fail that he was left on 100% oxygen. This is considered dangerous due to the holes found in his heart. He was put on nasal C-PAP, and improved dramatically.

It is now Friday and last night and yesterday we were having problems with huge boogers clogging his breathing tube and making it more difficult for him to breathe.

When the nurse went to change the breathing tube last night, as soon as she took it out, he sighed as if to say, "Ah, I can finally breathe easily." They watched him and sent the DR. in, and realized that he was doing fine with no assistance or O2, so he has been comfortable and happy ever since and he is even statting regularly at 100% or close to it.

We still have not figured out why he has the spells, maybe because he has pulmonary hypertension, maybe because of the holes in his heart, but we don't know which was the problem first. If anyone has any suggestions, comments, or is able to help with some insight, please do. We just want our baby boy to be happy and healthy.

Emily & Jordan
lovinglife_bennett@yahoo.com

- - -

Update 12-30-07

Bennett is doing well. The ventilator is out and he is eating on his own. He does not like the fortified milk that the hospital is giving him and prefers unfortified breast milk. He loves to be held, especially after being in bed for so many days. They are taking the feeding tube out today since he is eating on his own. Hopefully we will be home in the next day or two. He is looking forward to goin home and having his first real Christmas.

To all parents with a child with trisomy 13:

Don't give up if your child is sick and you are faced with the decision with putting them on the ventilator. Give them the same chance as any other child. Although the doctors say that children with trisomy 13 are less robust, that is not always the case. Bennett has shown us that he has a will to live and he is loving life. No bout of pneumonia is going to hold him down.

GO BENNETT ;) Everbody loves you

Emily & Jordan
lovinglife_bennett@yahoo.com
 

Update 12-28-07

Bennett is doing well, the vent tube is really agitating him,  hopefully if he does well with his pressure support test today the doctor will extubate.  He will go on high flow nasal cannula, which he will appreciate.  He really does not like having tubes.  He stayed awake almost 17 hours straight the other night, so was really tired and cranky.  Just repositioning him and suctioning out his nose and mouth really made him mad and he exhaled all of his breath and wouldn't take it back in fast enough, so they had to bag him.  This happened 3 times within about an hour and a half, but hasn't happened since.  He finally slept most of the night last night and most of the morning.  He woke up and started crying and has been crying for about an hour now, but the doctors want to ride it out and not give any pain meds because they are pretty sure they will extubate in 3 or 4 hours and do not want him sedated when he has to breathe on his own. 

I got to hold him last night and he found comfort in it for a while but just kept crying so we put him in a swing.  Just the position change seemed to help.  I can't wait to cuddle him when he gets that darn tube out.  It seems like it is agitating him more than helping at this point.  He is on 25% oxygen, so just 4% higher than room air.  Hopefully we will go home within the next week on no oxygen!  We just keep praying and ask for all of the prayers that we can get.  Peace and MERRY CHRISTMAS!

 If anyone wants to see the pictures taken by the photographer, OVATION PHOTOGRAPHY, you can go online to http://www.ovationphotography.net  - Click View My Photos and then use password bennett.  They did an excellent job.   

We will try to get recent photos posted after we get out of the hospital, so hold tight, he's a cutie pie!  He really knows how to grin!

 It is hard seeing him go through all of this, but he is a fighter, and any child could get pneumonia and be in this same situation.  We always remember to give him the same chance if not more of a chance than would be given to any other baby. 

 For all who would like to know, he was born on October 24, 2007, so is about 10 weeks old.

Emily & Jordan
lovinglife_bennett@yahoo.com

 Update 12-22-07

Bennett got a cold a couple of weeks ago. After a week of having this cold we took him to the doctor in Dubuque and found out that the cold led to pneumonia. The doctor in Dubuque admitted him into Finley Hospital. The first morning that we were there Bennett got upset and pushed all the air out of his lungs and couldn't get it back in. We had to bag him and help him get it back. This happened three other time in the next two days. Bennett's dad asked the doctor on Monday night if it would be better for Bennett to go down to the University of Iowa Hospitals because they have more experts in this area. The doctor agreed and we transfered Bennett on Tuesday morning.

Tuesday when we got down to Iowa City Bennett had a breathing episode in the ambulance and then another one in the inpatient pediatric unit. We then moved Bennett to the PICU. Bennett was put on C-PAP and he did alright for a while. On Tuesday night Bennett had another breathing episode and he god not get his stats back up on his own. Emily and I had to decide to intubate him. After he was put on the vent he got his stats up. Over the next couple of days he was and still is improving. The doctors say that he should be off the vent before Christmas.

Thank you to all of you who are praying for Bennett and to all that are in our situation keep on fighting and have hope. Remember that you are doing it for your baby and not to your baby.

PS Bennett's liver has gotten much better and his color is turning pink.

Update 12-4-07

Bennett is doing very well, he is home with us and is now 6 weeks old. He is not having any difficulties, just a little jaundice, so they are keeping an eye on his liver. He is eating on his own out of a bottle, which the doctors told us he wouldn't be able to do, breathing on his own with no apnea spells and no oxygen. He has been smiling, scaring himself when he makes a noise, he likes tummy time and can pick up his head and turn it both ways.

He was born at 4 weeks premature, and weighed 5 pounds 11 oz, 19 inches long, he did very well in the first few hours with APGAR scores of 7 and 9 out of 10, but had some breathing difficulties the next 2 days. We chose to help him with his breathing, he was on CPAP then nasal cannula, then nothing, all the while the doctors telling us we should do the "nice thing". We felt he deserved a chance at life just like any other preemie baby, and he took that chance and is doing great after 2 weeks in the ICU. He now weighs 6 pounds 14 oz and is 21 inches long. He is a very good baby and can see and hear we have learned, which, again the doctors said he may not be able to do.

To all women carrying a baby with trisomy 13, have hope, little miracles do happen, and let me know if you need anything. I had an epidural because I could not handle thinking about the labor pains and worrying about how he would do when he was born. This helped me to concentrate on Bennett. It only took 30 minutes of pushing, and we were blessed with our baby boy who looks just like his daddy! Oh, also, the most important thing when a baby is born is to let him or her know he or she is not alone.

Bennett had more apnea spells when I wasn't there than when I was, and without us by his side, I have no doubt that he would not have made it. A hospital is a scary thing for a newborn. It calmed Bennett and let him know he was not alone when we rubbed the top of his head and talked to him. Having a family gave him a will to live, and we never left his side the whole while. There were times when I was so tired that I did not feel like I could support him any more, but with the help of my family and God, I made it through, and now life is wonderful.

Jordan, I, and Bennett want to make a difference in how parents approach bringing precious life into this world, so if there are any parents who need support or help making decisions, Jordan and I are very pro-life and Bennett is proof that trisomy 13 is not "incompatible with life." Bennett is my hero, he has gone through more than I would have the courage to go through, and is very good at living and loving and most of all snuggling! If anyone has any ideas on how we can begin to save lives of precious babies with trisomy 13, please let Jordan and I know, and we would be honored to take part.

- - - - -

Update 8-22-07

Doctor's appointment on 8/21/07 with Dr. in Dubuque went well, no gestational diabetes, iron was fine.  Also, Bennett grew a bunch since our last appointment.  Uterus measurement was 28 cm which puts me at about 28 weeks, so between November 12-19 I can expect him! 

Last appointment which was 25 weeks, it measured about 23 cm, so slightly small, but he made up for lost time!  No weight gain in the past 2 weeks, but so far I have gained 26 lbs, so I am right on track!

Still praying and enjoying every moment & movement, reading to him every
night and playing a music box for him before bed.  We love him more than
anyone could know.

Feel free to email Emily or Jordan
lovinglife_bennett@yahoo.com

- - -

Update 8-20-07

All is going well, feeling well, getting much bigger. Bennett has been moving a lot and rubbing right up against my skin so I can feel him.  Has gotten the hiccups a couple of times this week.

On Wednesday, 8/15/07, Jordan and I went to church for the holy day.  Every night we have been praying to St. Jude for Bennett. He is the patron saint for hopeless cases or cases almost despaired of. Also of miracles! We sat down, and I saw a prayer sticking out of the hymnal and looked around to see if it had been handed out to everybody. It hadn't, so I figured someone had left it behind. Guess what it was? A powerful novena to St. Jude, to be prayed for 9 days in succession and a sign of prayers being granted on the 8th day. The 8th day just happens to be our appointment with the Doctors in IA City about Bennett!

Appointment with Dr in Dubuque on Tuesday 8/21, Birthing class that night, IA City appt on Thursday.

Feel free to email Emily or Jordan
lovinglife_bennett@yahoo.com

8-2-07

Feeling well physically, feeling hopeful instead of hopeless after visiting this website.  Praying for our first child and doing everything possible to stay healthy.

Bennett John Meyer is our first child, I am now 24 weeks along with a due date of November 19, 2007.  We were told that Bennett's umbilical cord only had one artery instead of 2, his cisterna magna and his ducts going to his kidneys were slightly high in the normal range at our 20 week ultrasound.  We chose to go to the University of Iowa Hospital for
further testing.  At this appointment the Dr. said that there were multiple abnormalities and that many of them led her to believe that our baby had a chromosomal abnormality called Trisomy 13, which is "incompatible with life."  Jordan and I were devastated.  We were offered abortion, but believe that it is not our place to decide who lives and who dies.  Only God can do that.

The doctors say that Bennett has arachnoid cysts in the lining of his brain, a cyst above the third ventricle, a splayed and hypoplastic vermis which controls balance and coordination, a thickened nuchal fold, eyes are 1 cm farther apart than usual, a possible heart defect: slightly enlarged R atrium, possibly abnormal ventricular outflow tracts which suggest transposition of the great vessels, slightly enlarged kidneys, one kidney with an extra collection site, an opening in his lumbosacral spine suggesting a neural tube defect but the skin covers it, it is not open the the outside, his transverse processes of his vertebrae are splayed, and he has an extra pinky on all limbs.

No cleft lip or palate, normal lungs, diaphragm, bladder, stomach, intestines, legs, arms, cervical and lumbar spine, cerebrum, and no other defects noticed.

He is a blessing to us as we both really want children.  The pregnancy is normal, only had 5 days of morning sickness, fetal heart rate is good, Bennett moves and kicks/punches a lot, especially when playing Battleship and reading children's books as well as during mass and prayer. 

Jordan and I want Bennett to have a chance at life.  We wish to check into things further to find out what will limit Bennett's life, and if his brain will allow his organs to function, we wish to try to save him even if it means surgery.  God will ultimately decide, but we just want the doctors to give him a chance instead of just "letting him go."

Feel free to email Jordan or Emily
lovinglife_bennett@yahoo.com