Tami Izzi  is available for Immediate support

6-10-07
Thursday afternoon I started getting contractions around 4:00. I was only 29 weeks along and we wanted to get them stopped as soon as possible so we went to the hospital by 5:00. They kept me there for 4 hours and gave me 3 shots of terbutaline, which were ineffective in stopping the contractions.

However, since I was having no cervical changes and the contractions weren't getting stronger (although they were already quite strong and only 2 1/2 - 3 minutes apart), they sent me home and said to return to the hospital if the contractions got worse or my water broke. After we came home I went to bed and then woke up with stronger contractions at 2:00 am. Shortly after that I started bleeding and we packed up to head to the hospital. My placenta was tearing away from the wall of my uterus and in order to give Angeliyah a chance at life we had to go into an emergency c-section as soon as possible.

It didn't go quite as fast as planned because the anesthesiologist had difficulty doing my spinal. It took close to an hour total and she tried in several places on my back and even had to change my body position. She finally got into the space though and we were able to proceed with the c-section. While they were starting to cut into me I prayed and asked God to just give us half an hour with her..."just 30 minutes" I prayed.

Angeliyah was born at 6:20 AM (June 8). She weighed 2 pounds, 14.8 ounces and was 15 inches long. Her lungs were too underdeveloped for her to breathe on her own. She tried a few times but was unable to make any
complete respirations. We decided not to intubate her ahead of time but were open to giving her oxygen by nasal canula or blow-by if it would help. Since her heart had so many defects, she wouldn't have survived more than a day or two on a ventilator and since she wasn't able to breathe at all on her own, the NICU nurses said it wouldn't have done any good to give her oxygen so we just held her.

They gave her to us less than 2 minutes after she was born, as soon as they wiped her off, dressed her and wrapped her in a blanket. She was still moving her mouth, arms and legs every once in a while. She never opened her eyes, but her heart continued to beat for over half an hour. God gave us 32 wonderful minutes with her before her heart stopped...2 minutes more than I asked for.

We were able to get a hold of a photographer from Now I Lay Me Down to Sleep - Infant Bereavement Photography   who was able to come and take pictures of her later in the day. As soon as we get them back I'll send some of them to be posted. She was absolutely beautiful and I can't wait to see the pictures. Physically, she looked like a perfect little girl, just really tiny. The only abnormality that we could see was one extra finger on her right hand. Somehow though, it just looked like it belonged.

Her fingers and toes were the cutest things I've ever seen...very feminine and dainty looking. When Matt and I originally arrived at the hospital in the middle of the night, we stopped to pray before going inside. We asked God specifically for His peace and His strength.

The whole day on Friday both of us really sensed that God was with us and the whole experience was very peaceful. We don't consider ourselves to be the strongest people, but God truly was our strength throughout the delivery, the rest of the day and all weekend. We're just so grateful for the time that we were able to have with Angeliyah. I miss her so much and my arms feel so empty, especially now that we've come home without her.

Because of our faith in God, we know beyond a shadow of a doubt that she couldn't be in better arms right now and we just can't wait to be with her again, and for eternity, when we get to heaven.

Matt and Tami Izzi

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Update 5-21-07
I went to the maternal-fetal medicine specialist today for another ultrasound and I think Angeliyah is doing pretty good. Her growth is up in the 4th percentile now instead of the 2nd percentile. She has a little extra fluid in her brain, but not enough to be too concerned about.
At this appt, the Dr. said she didn't have any extra fingers or toes (which I suspected...when he counted 6 fingers last time, I couldn't figure out where he was seeing the 6th finger, I only counted 5). She has her hands clenched together so it's not very easy to see her actual fingers. You have to count the joints instead. We probably won't know for sure until she's born unless we get a good 3D view of her hands at one of my future appts.
Another good thing was the Dr. couldn't see any facial abnormalities. He took a few 3D pictures of her face and although they weren't very clear (due to low amniotic fluid and the fact that she has her face smashed up against the placenta), he's fairly certain that she doesn't have a cleft lip. However the pictures were pretty blurry around her mouth so he couldn't say for sure. He'll look at her face in 3D again next month. Even though the pictures didn't come out very clear, I was really excited to have some pictures of her face. You can (well, at least I can) clearly see the shape of her forehead, eyes, eyebrows and nose.
Also, she's been in breech position for about a month now. My son Raife did the same thing. He was bottom down from 5 months on and never turned around. I'm thinking that Angeliyah will be the same way. Because I have a wall down the middle of my uterus (the top half of it) and the left side of my uterus is half the size of the right, my babies don't have a lot of options for positions. Anyway, I'm guessing she won't turn around before birth. I was planning on having a repeat c-section anyway, so it's fine with me if she doesn't.

Somehow, even though Angeliyah still has all these problems, Matt and I were really encouraged today. As long as she continues to grow, she should be born alive at least close to full-term if not at full-term, and more than anything we just want to meet our daughter. We are still praying for God to heal her. A couple weeks ago we were feeling a little discouraged and I especially didn't really feel like I had the faith to be praying for a miracle. I was wondering if it was God's will to heal her and if I should even be praying for healing. Since then, it seems like everywhere we turn we keep getting the same message...from our pastor, to the several books we're currently reading, to the new CD I got for Mother's Day, we keep hearing/reading "It's not our job to try to understand the ways or the will of God, it's our job to trust Him". And so even though we really don't understand yet what God is doing in this situation and we don't know if He's going to heal Angeliyah or not, we're going to focus on keeping our trust in God and continue praying for healing for our daughter. No matter what happens, we know we'll be with her for an eternity in heaven someday, but we sure would love to get to know her a little bit before then.

-Matt and Tami

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Update 5-17-07
Matt and I went to see a pediatric cardiologist on May 8 who did a fetal echocardiogram for us. It looks like the initial diagnosis of Hypoplastic Left Heart Syndrome wasn't exactly correct. Angeliyah does have a hypoplastic left ventricle but that is only one of the many problems with her heart. Her heart defects include a double outlet right ventricle (with a large ventricular septal defect), hypoplastic left ventricle, underdeveloped mitral and tricupsid valves resulting in moderate regurgitation, and anomalous pulmonary veins which are probably infracardiac - it looks like they come down around the heart and into the bottom right side of the heart instead of the left side, through the ductus venosis which typically closes up within a couple days after birth.

The cardiologist's best guess is that she'll be born alive (assuming she doesn't develop other problems in her body) and live for about 2 days until the pulmonary veins get obstructed (when the duct they go through closes). He said after that she would go pretty quickly.

I have an appointment with our maternal-fetal specialist this coming Monday. He'll be doing another complete ultrasound to see how Angeliyah is doing as far as her development is concerned. He also has the capability of doing a 4-D ultrasound in his office which he'll probably do if my fluid levels are high enough. I'm hoping we'll be able to do it so we can get some cute pictures of her.

Matt and I have been doing pretty well with everything. We're still praying and hoping for a miracle, but also trying to prepare ourselves for the worst as well. It's hard to find a balance between those two things and ultimately we're just praying that God's will would be done in this situation, no matter what the outcome. We know that we can trust Him and are choosing to do that each day. Please continue to pray for a miracle for Angeliyah and for us as we work our way through the next 2 or 3 months.

Matt and Tami

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4-27-07
Hi, my name is Tami. My husband Matt and I live in Olympia, WA and are expecting a baby girl with Trisomy 13 on August 22, 2007. Angeliyah Grace will be our second child. We have a son named Raife who just turned 1.

We had an ultrasound on March 28 when I was 19 weeks pregnant and at the time we thought everything was normal with the baby. But when we went in to see my OB doctor the following week, he told us that it looked like the baby had a heart problem. He said that the left side of the baby's heart looked very underdeveloped and the right side of the heart was doing pretty much all of the work. We were referred to a maternal-fetal medicine specialist to have a more thorough ultrasound done. I did some research in the days that followed and suspected that our baby had Hypoplastic Left Heart Syndrome.

On April 12, we went to the specialist and he confirmed what I had thought. He diagnosed our baby girl with a Hypoplastic Left Heart and then proceeded to find more problems with her. In our first ultrasound she had been a little bit small, but only by a few days. This time her head measured about 1 1/2 weeks too small, and then as the doctor measured all the other parts of her body, we discovered that all her long bones were short as well. He also pointed out that the bottom of her feet were rounded instead of arched. He told us these characteristics could indicate a chromosomal defect and so we decided to have him do an amniocentesis. For Matt and I, abortion is not an option, but we wanted to know exactly what was wrong with the baby so that we could prepare for her birth.

The following morning the doctor called me and told me that our little girl had Trisomy 13. The statistics he gave me were that 80% were stillborn and of the 20% who were born alive, 95% die in the first month. He did say that very rarely some could have a short childhood, but because our girl has such a severe heart defect he didn't expect her to be one of those children. When we followed up with him earlier this week on April 23, the baby's growth had dropped off even more and now is only in the 2nd percentile. She also has an extra digit on at least one of her hands and a questionable cleft palate. This time when he looked at her heart he wasn't completely sure what was wrong with it. He could definitely tell that it was "messed up" but he wasn't completely certain that the Hypoplastic Left Heart was the main problem. He referred us to a pediatric cardiologist which we will be seeing in a couple weeks for a fetal-echocardiogram. We realize that there is little or nothing they can do for her, but we still would like to know what exactly is wrong with her.

Initially, Matt and I were devastated with the diagnosis and we cried a lot for the first couple days. But we both have faith that God is in control of our lives and of Angeliyah's life and we are learning to trust Him more and more each day. 2 Corinthians 12:9 says "My grace is sufficient for you, for power is perfected in weakness." The word "grace" means divine means of help or strength, given through the bounteous mercy and love of Jesus Christ. We are claiming that gift of grace everyday, for ourselves and for our little girl.

Matt and I believe that God still does miracles, just like he did 2,000 years ago. We are holding on to the hope of Him healing our little girl, and at the same time we realize that He is in control. Our ways are not His ways. He is the only One that can see the big picture and we trust Him to do what is best for us and for Angeliyah. If she is not healed, and she does go to heaven before us, we know that God can turn that circumstance into good. "God comforts us in all our affliction so that we may be able to comfort those who are in any affliction with the comfort with which we ourselves are comforted by God. For just as the sufferings of Christ flow over into our lives, so also through Christ our comfort overflows." -2 Corinthians 1:3,4

For those of you who talk to Jesus, we would appreciate any and all prayers for us. I don't know how we could make it through the next several months without the grace and mercy we receive from Him each day. We know we have a long road ahead of us, but with God as our strength, we know we can make it through.

We would love to hear from other families who are in a similar situation or anyone else who would like to write. We've only been aware of this website for a few weeks now, but already we have been tremendously blessed by the stories we have found here. It is such an encouragement to see the strength and courage that all these families on this site have, and we appreciate everyone's willingness to be so open and to share their experiences so that families like ours can have some hope after such a devastating diagnosis.


Matt and Tami Izzi
tami_rene@hotmail.com