Amaya Faith - Trisomy 13

Eternally Healed

aaronlynch — Sun, 20 Aug 2006 22:02:17 +0000

After 7 awesome days, at 7:00am (CT) Sunday morning; Amaya Faith went on to her eternal home in heaven to be with Jesus. With the bright sunny morning breaking on the horizon, Amaya Faith took her last breath right where she would have wanted to be; in the arms of her mother rocking her gently in a chair, and with dad gently stroking her cheeks. Amaya lived a total of seven and a half glorious days, each filled with love and adoration.

We would like to say thank you to everyone for praying, helping, and standing with us through this time. We are so very blessed and honored to have been Amaya’s parents even if only for a short while. We have hearts bursting with great joy, even in our grief, and look forward to the day when we will spend eternity in heaven with her. Thank you all, we love you so much.

One week old

aaronlynch — Sun, 20 Aug 2006 00:34:25 +0000

Yeah, Amaya is one week old. How precious and beautiful she is. She had a little episode yesterday evening, but with a full blast of oxygen and some vigorous rubbing she started breathing again. She slept all night, making two great nights in a row. Praise God. She has had a great day with just a few d-sats. It doesn’t seem possible, but everyday I love her more and more. The miracle of birth and babies are just amazing and we thank God for our baby girl and every minute with her. I hope everyone got to see her pictures, if not check them out on the last post. They are simply wonderful. The faithfulness of God does not cease to amaze us, He has placed so many wonderful people in our lives. From the people watching our girls, to mowing our lawn, the photographer, nurses, doctors, and today we found out that Aaron’s work is having a bake sale at the base in Iowa with all proceeds going to Amaya. Thank you all to every one and may God bless you as you have blessed us.

Professional pictures

aaronlynch — Sat, 19 Aug 2006 02:08:17 +0000

We had a wonderful photographer come up and take beautiful pictures of Amaya today. He was such a blessing. Click on the link to see them. Photo’s were taken by Rod Evans of Evan’s Photography of Sioux Falls.

View Photos

Day 6

aaronlynch — Fri, 18 Aug 2006 16:50:00 +0000

Sorry it has been so long since our last post. Wednesday night was really rough. Amaya crashed 3 times and the last time it took chest compressions to get her back. They say each time it is getting harder and harder to bring her back. We are continuing to do all of her medical care and are treasuring every moment God gives us with her. We are still praying for a miracle but made the hardest decision of our lives last night, if she crashes again we are just going to hold her and love her. The resuscitation’s are so hard on her and we don’t want to put her through anymore pain. Right now she is doing great, she had a great day and night and we are holding her as much as we can. She is so precious and can’t imagine not having her. She is a true blessing and gift from God. She is on her second round of heart medicine. A repeat echo yesterday showed that the hole was trying to close, so we are praying that this will do it. Her last dose is tomorrow and they will do another echo, please continue to pray.

4 days old

aaronlynch — Wed, 16 Aug 2006 14:37:34 +0000

OK, well 2 hours shy of being four days old, but close enough. Last night was a much better night. Amaya experienced a few d-stats, low oxygen, but nothing severe. She likes to suck her lower lip in and since her nasal passage is open to her mouth she blocks off her airway, we have found a few positions she tends to better on, but she’s a baby and she wants to suck. We have a prayer request, our latest hurdle is that she has a hole in her heart that should have closed up after delivery and hasn’t. They have started her on medicine that can potentially close it, but it seems to work better in preemies. Friday she will have a follow up echo to see if the medicine has worked. If it hasn’t the only other way to close it is with surgery. We don’t know if this is possible for her, because we don’t know if she can be intubated. They tried twice at delivery and it failed. If surgery is not possible than she can live with it open but it allows blood to flow into lungs which a whole new set of problems. So please everyone pray that this medicine works and her heart is closed up properly. We know everyone continues to pray and thank you all. Amaya has showed her self to be a strong little girl and we know that God is with her, we still believe that God can heal her and pray for that daily.

3 Days Old

aaronlynch — Tue, 15 Aug 2006 20:02:39 +0000

She has past the first statistic. She is now over three days old. She is such a blessing, we have spent much of the day holding her and cuddling close her. She is as sweet as can be and we are treasuring every moment. She gave us quite a few scares last night. She crashed 3 times and needed to be bagged and stimulated quite a bit to bring her stats back up, she also experienced 2 apnea episodes. She kept us on our toes all night, but has been having a very good day. Sleeping peacefully and snuggling close with us. Her chromosome test came back positive for full trisomy 13, the doctor’s told us this is what they expected all along, but it still came as a blow. She had her ultrasound that revealed a small simple cyst on her right kidney, that will need to be re-evaluated in 2-3 months. She also started and had two feedings yesterday that she tolerated well, but they have been discontinued until the doctors give the go ahead again. Please continue to pray for her, that she remains comfortable and strong. She has shown us that she is a fighter and we can see her precious spirit is full here. Thank you for all your prayers, comments and love.

Photos of Amaya Faith

aaronlynch — Mon, 14 Aug 2006 15:59:34 +0000

We have uploaded some photos of Amaya Faith. Click on the tab at the top named ‘Photos of Amaya’ to view them. We love you all, thank you so much!

View Photos

Our little gift

aaronlynch — Mon, 14 Aug 2006 13:22:27 +0000

Amaya Fatih had a great night. She is on the lowest amount of oxygen possible and kept her levels up all night! God is awesome and we are blessed just to see how sweet she is. The doctors are still amazed at how well she is breathing on her own and are moving forward to the same goal as us, to bring our baby girl home. This morning she will have a kidney ultrasound to see how her kidneys are functioning as well as trying to see how her digestive tract is set up. Right now she is receiving electrolytes and vitamins through her IV, but we would like to get her started on some feedings. She is not able to nurse or take a bottle because of the severity of her cleft, but we will hopefully be able to use a tube down her throat or into stomach with a g-tube. We will know more after her ultrasound. She is just amazing and we love her so much. A true gift from God. We thank you all for your prayers and continue to ask you to pray for her healing and comfort as she deals with all the doctors and testing. We will get pictures online as soon as we are able and will try to put an update on at least once a day.

Amaya’s Arrival

aaronlynch — Sun, 13 Aug 2006 03:44:40 +0000

Amaya Faith has made her entrance into our world, she weighs 4lbs 5oz and is 17 1/2 inches long. After an ultrasound yesterday with very low fluid levels the doctor wanted to induce this morning. We thought we had another week and were a bit unprepared but couldn’t wait to welcome our sweet little girl. After a very quick labor Amaya was born at 11:23am. She was barely breathing and did not have good color, but after two failed intubation’s she began breathing on her own! Praise God. She is holding her own and has breathing on her own all day. She is on oxygen but is down to about 40% after needing 100% for a few hours. She does have a lot of signs of trisomy 13; cleft lip and palette, small nose, some definite anatomy displacements(esophagus, trach, but not sure of the extent) She has six fingers on each hand, cute as can be. She is however missing part of her scull that is leaving her brain exposed, about the size of a silver dollar. She has just a layer of membrane over the top of it. Tomorrow morning she will have an ultrasound of her kidneys and we are really just taking it moment by moment. We are thrilled that she is breathing and are treasuring our time with her. The doctors are shocked by how well she is doing and we are trusting God. Thank you all for your prayers and support.

Still Strong

aaronlynch — Fri, 04 Aug 2006 04:10:39 +0000

Our little Amaya is still holding her own and suprised us with a 12 oz weight gain in just two weeks. She is up to 3lbs 14oz and is strong as always. Our ultrasound today showed the same findings, semilobar hpe, enlarged kidneys, bilateral cleft lip, but her heart still looks great. She would still not give us any pictures of her face, she is so stubborn, always hides her face downwards or sticks her hands right in front of it. We are scheduled for our induction on the 18th, check in at 7:ooam, however at todays appt. found out I was already almost 4cm!!! Tomorrow is Jaden’s birthday so we are praying Amaya waits until at least Saturday. The doctor said it is possible to still make it to the 18th but not to be suprised if she comes earlier. So right after Jaden’t birthday party I will start packing! LOL. Thank you all for your prayers and your love. Please continue to pray for her complete healing and for her growth as well. We have our last ultrasound next Friday and will also meet with the NICU team at that time to discuss Amaya’s care after birth. Please pray for God’s grace and strength as we know they will be asking difficult questions as they explain options and different scenarios. We love you all.