Our CDH Journey

Happy 1st Birthday my precious angel!

2010-02-03T00:49:00.009-05:00

*~ Happy 1st Birthday Joseph ~* We miss you VERY VERY much.

While today I was suppose to be buying you balloons, your first birthday cake, celebrating your birthday with your sisters and daddy, maybe taking you to Chuck E. Cheeses and taking wonderful photos of how big you have got. I'm here wondering why aren't you here? Why does CDH happen? Why it had to happen to us? and Why you didn't deserve a chance to live?

Life is very tough and unfair but I want to thank everyone who has been there for us during the good and bad times.

One of my favorite photos of Joseph:

Joseph we LOVE and MISS you very much!

xoxo,

~ Mami, Daddy, Alyssa, and Sofia

Happy Halloween!

2009-11-03T00:49:00.005-05:00

We had a little Halloween party at the house on Saturday and we set up a photo booth downstairs to snap some pics of us and some of our friends at the party. Check out a few pics of us :)

Super Heroes + Princesses

Our beautiful princesses :)

Alyssa - " Sleeping Beauty"

Sofia - a not so happy to take pictures "Snow White"

Batman + Batichica

LOL

We hope everyone had a great Halloween.

~ Carla, Sky, Alyssa, Sofia, and angel Joseph

Family update

2009-10-15T02:47:00.005-04:00

Sorry for not posting to the blog in sooo long. I had to take a much needed break from CDH. Sky and I noticed that I had got obsessed with CDH blogs, articles and anything you can think of that has to do with CDH. I felt and still feel like I need an answer to why CDH happens and why it had to happen to us. The obsession got really bad and was affecting my life and family a lot, so I need to re-focus. The more I read the more depressed I got. Sorry again for not replying to emails and blog posts. Thank you again to everyone that emailed, called, and has been there helping us since day 1.

We are back to "normal" and very excited about the holidays :) Sofia turned 2 in August and thinks she's the boss of the house telling people "No" all the time and throwing tantrums if you don't give her what she wants :)
Alyssa is also doing very good she turned 6 last month but thinks she's 12, lol... We decided to homeschool Alyssa this year (Kindergarten) and she loves it. We are doing a lot of fun family stuff together that we didn't do before so that's very exciting for us.

Everyone keeps asking me if we are going to have another child and right now I just don't know. Sometimes I say yes maybe in two years and then I take it back and say no, thinking that this could happen again but we'll see :)

Check out a few pics below:
Sofia

Alyssa and Daddy

We had to take new bio photos for our new website :)

I hope everyone is doing GREAT!!! :) and thanks for checking on us and not forgetting about Joseph.

~ Carla

Happy Mother's Day

2009-05-10T23:05:00.000-04:00

This weekend we celebrated Mother's Day by taking the fam out for some fun. We've been working hard for the past few weeks so it was nice to finally get away from the office and enjoy some family time. We started out by going to ZOOATLANTA and letting Aly and Sofia get a little exercise running around the park. Today we took Mommy shopping and to eat at her favorite Japanese steak house - Kani House.

Here are some pics I took yesterday at the Zoo. Shot with my little point and shoot Nikon.

I hope everyone else had a great Mother's Day.

-Sky, Carla, Alyssa, Sofia, and our angel Joseph.

Need Prayers for the NICU at Egleston

2009-04-28T01:05:00.004-04:00

2009 was supposed to be a GOOD year, what happened? I hope everything starts to turn around in a good way for everyone as of right now 4/29! Lauren one of Joseph's favorite nurses just emailed me with more terrible news :(
Terri Wade one of the nuses at the NICU at CHOA-Egleston passed away. Terri was merely having headaches two weeks ago and went to the doctor to get some medicine. The next thing they know is that Terri's being taken to have brain surgery. Unfortunately, her body was just not strong enough to recover and yesterday she went to heaven with all the NICU babies that have passed including Joseph. Please keep Terri's family and the entire staff at the NICU at Egleston in your prayers.

Terri:

2009 people that passed away "related to me/that I know": (Yes, I made a list)

1- Our beautiful son Joseph, we will miss you forever!
2- Ryann (CDH baby)
3-Addison (CDH baby)
4- Maxton (CDH baby)
5- Kaden (CDH baby)
6- Skylar's Grandfather (passed a few days after Joseph)
7- Clyde's Grandmother (a friend)
8- Terri (nurse at the NICU)
9- My mom's co-workers sister
10 - Father Mendez
11- 2 of my grandma's friends
and the list goes on...

I know we haven't posted in a while I just haven't been very happy with God lately so I didn't want to write something I will regret. I got very upset the other day, when I read the news about a father in WA killing his own 5 children b/c his wife was leaving. I just don't understand why would a person like this gets to have his children while Sky and I and many other parents that just want nothing but to love their kids, have their kids taken away?
Sky and I are doing okay, we still have our days but we are doing a lot better. We have been working non-stop which is helping us. We also decided that we need to start having more family time so we have been going out with the girls a lot. Sky and Aly's new hobby is fishing. Sofia likes to talk very loud and scares the fishes away, so her and I have our fun at the park and eating candy :) while they go fishing. I will post more about how we been doing later.

Thanks again to everyone for your support, prayers, and donations. Also, we will be taking all the items we bought with your donations to the NICU this week and post pics soon. Shopping for baby things and no bay was very hard but something I felt I needed to do.

Hugs,

~ Carla

CDH - Awareness Day Slideshow

2009-04-01T23:20:00.005-04:00

Thank you to everyone who wore turquoise on 3/31 to support and spread awareness about CDH. Check out the slideshow to view some of our supporters :)
Oakley and her family released balloons in memory of Joseph and other babies who lost their CDH battle. Thank you so much for always supporting us Brian and Sheree. We would also like to send a big thank you to my family out in Puerto Rico and Skylar's fam out in Texas that are raising awareness throughout the state. The students pictured in the slideshow are Dave's (Skylar's dad) media students and have been supporting us throughout our CDH journey. They are all so awesome. We really appreciate all the love and support you all have been sending us and others who are enduring the CDH roller coaster.

Love,

Carla, Sky, Alyssa, Sofia, and Joseph (our Angel)

March 31st - CDH Awareness Day

2009-03-28T03:30:00.003-04:00

Next Tuesday, March 31st is CDH (Congenital Diaphragmatic Hernia) Awareness day. Please wear turquoise to show your support for CDH and honor Joseph.
Feel free to send us a photo of you wearing turquoise so we can post them to the blog. Email your photo to cdh@sky-carla.com

Thanks,

~ Carla, Sky, Alyssa, Sofia and angel Joseph

Thank You

2009-03-23T13:34:00.000-04:00

First of all we want to thank everyone for all the comments, emails, yummy food, beautiful flowers and cards we have received. It means a lot to us that Joseph has touched so many lives in so many ways in so little time. Sky and I have learned a lot through this CDH Journey and one of our new goals is to help raise awareness and research for CDH. We know one day they will find the cure and the faster they can find it the less babies will pass and less families will have to suffer.

We would like to provide other options for everyone who wants to send their condolences. We are encouraging people to choose one of the options below for donations in Joseph’s honor.

Option 1: For Children’s Healthcare of Atlanta NICU (Things for the newborns)

Sky, Joseph and I made lots of new friends (nurses, doctors, other parents, other workers) while we were at Egleston and everyone was very nice to us. The money collected from option 1 will be used for buying the newborns mittens, socks, hats, pretty blankets, small stuffed animals, books for parents to read to their babies and more. We will also get a few outfits, so parents can use them if the baby passes. Sky and I will be taking photos of all the items purchased and post them to the blog.

To make your donation click below:

Option 2: For Children’s Healthcare of Atlanta NICU (Hospital equipment)

I tried getting the hospital to open an account for CDH research but is not something they can do right now. So if you want to donate directly to the hospital please send your donations to the address below. The money collected from option 2, will be used for new equipment for the NICU at Children’s at Egleston.

Children’s Healthcare of Atlanta
Attention: Tribute to Joseph
1687 Tullie Circle NE
Atlanta, GA 30329

On the memo line please write "in memory of Joseph Carter DeJohn."

Option 3: Breath of Hope

You can either send a donation or purchase CDH Awareness Wristbands so you can wear them March 31st (CDH Awareness day.) Elizabeth has been really nice to us and sent us a lot of helpful documents and nice cards. Thanks Eli! We will be wearing the items you sent us on 3/31.

Website: http://breathofhopeinc.com

Option 4: CHERUBS

Dawn is also very nice and is working with hospitals/doctors with CDH research.

Website: http://www.cdhsupport.org

Thanks again for everyone’s support :)

Sky + Carla + Aly + Sofia + angel Joseph

Angel Addison

2009-03-11T23:00:00.003-04:00

After 22 days of fighting Addison lost her battle to CDH today. Please keep Addison and her family in your prayers. We are heartbroken by the news. We know what Marion and Jason are going through. Marion if you read this I want you to know that we are here for you. Anything you need let us know and please don't hesitate to call me at anytime if you need to talk.

Check out Addison's blog here: http://virginiaaddisonacord.blogspot.com

Also, mark your calendars for March 31st (CDH Awareness Day.)

Thanks,

~ Carla

Joseph's Memorial Service

2009-03-01T18:40:00.002-05:00

Sky and I warmly invite our family, friends and supporters to join us Tuesday, March 3rd at 10am for Joseph's memorial mass.

Details:

Immaculate Heart of Mary Church
2855 Briarcliff Road NE
Atlanta, Georgia 30329

Website: www.ihmatlanta.org

R.I.P my little warrior!

2009-02-27T23:42:00.002-05:00

It's so hard to continue to think about what's going on, but Joseph's memory must live on. I recently took my last photographs of Joseph and I will cherish them forever as they are some of the most personal and important photographs Carla and I have ever taken. I'll share a few with you. Thank you all for your prayers and support once again. I miss my little man, and I will not accept any reason why he is gone. Every moment we had with him was so precious. I have tears in my eyes as I post this.

RIP Joseph. We will always miss and love you. Please send prayers and love out to all the other families that are going through hard times with CDH and other sicknesses occurring in children around the world. We all need it.

-Sky

Joseph Carter DeJohn

2009-02-27T00:50:00.005-05:00

I’m sorry to say that our beautiful baby boy passed away yesterday 2/26 peacefully in his mommy’s arms. We had 23 amazing days with Joseph and we are very happy we had that time with him, but at the same time we are very sad and angry that he is no longer with us. That’s not fair :( I wish things like this didn't happen, we are good parents and Joseph was a wonderful son. He fought the most he could even when the doctors gave him 0 chance. He was very strong and he fought till the end.

Joseph we LOVE you a lot and I’m very very sorry there was nothing else I could do to help you and keep you here with us. We will miss but we’ll never forget you. I can't believe we wont see you grow. I try to understand the reason why you had to go, but nothing makes sense. People say I will understand one day but honestly I don't think I will. I just wish God gave you a chance and left you here with healthy lungs and a good heart.

Thanks for everyone’s support and prayers. We will update soon with Joseph’s funeral arrangements.

We lost a son and gained an angel!

Thanks,

~ Carla, Sky and family

CDH - Repair Surgery

2009-02-26T00:21:00.001-05:00

After going off ECMO Joseph went through some very rough days. His oxygen levels, blood pressure and heart rate kept going crazy some days up and some days down. So the doctors decided that the best thing to do at this point was to do his repair surgery before everything started to go down and not come back up. As soon as we would schedule his surgery he would start doing better and we would re-schedule. After a few days of scheduling and re-scheduling his repair surgery, Joseph finally had his surgery this past Monday 2/23. The doctors were giving us very low chances of Joseph surviving the surgery, but we wanted to risk it anyways b/c we knew it was the only way we could give him a chance in life since nothing else was working. The Oscillator and Nitric Oxide where on the highest settings and he was on over 10 medications. Joseph’s surgery was a success! He is sooo strong and he is only 3 weeks. After the surgery the surgeons told us that Joseph was missing the entire left side of his diaphragm and that’s why his intestines were all in his chest moving his heart to the right and pressing his lungs. Joseph did great after the surgery but on Tuesday night his heart rate started to go up on the 190’s to 205 range and his blood pressure started to go down. On Wednesday the doctor ordered some X-ray’s to see what was going on and they found that he had air in his abdomen that was coming from his chest “leaking” through the gortex patch they placed as a diaphragm. The air comes from the space the intestines were in. So on Wednesday just at the age of 3 weeks Joseph had his 4th surgery to place a tube in his abdomen to release the air. The surgery went well but it didn’t fix the problem he was still having issues with his heart rate and blood pressure. The pressure in his lungs is soooo strong b/c of the pulmonary hypertension that is making his heart work a lot more and that's why his heart rate is so high and starting to fail.

Please keep praying for Joseph.

~ Carla

No More ECMO! :)

2009-02-18T21:04:00.007-05:00

The past couple of days have been very crazy full of ups and downs. On Sunday they had to change Joseph’s ECMO machine to a new one because the one he had since the day he was born was full of blood clots and the more blood clots the more chances of them going into his brain (very scary, I know.) They also tried to ween him off of ECMO on Sunday, but its was a complete failure. Joseph didn’t do well with just the conventional ventilator and no ECMO. On Monday he got an ECHO and it also showed no improvement, after Sunday everything just kept going down the hill little by little. Yesterday, we had a meeting with Joseph’s Doctors and got the worse news possible. They had told us that his lungs weren’t developed enough for him to survive and said he most likely won't make it. Sky and I were devastated! We didn’t want to give up but the nurses and doctors had done all they can. I cried and cried all day and all night yesterday, I didn’t want to loose my baby boy. The plan was to ween Joseph off ECMO today (Wednesday) using a more powerful ventilator (high frequency ventilator) no matter if it worked or not. Today was officially my due date and I just couldn’t imagine him dying the day he was supposed to be born. Knowing that your child is going to die is the most horrible thing that can happen to a parent.

After 15 long and rocky days on ECMO, Joseph had his second surgery today to take him off ECMO. Yes, no more ECMO!!! When we arrived at the hospital this morning his primary doctors and nurse were smiling. They told us that Joseph made an amazing improvement overnight. His stomach had lowered a little and his lungs had finally expanded. What a MIRACLE!!!! Both of his lungs are working and the ventilator is supporting them. Please keep your fingers crossed for him because there is still a chance things could go south while he is off ECMO. We are just giving his body a chance to adjust to the new conditions. We are still hopeful because he is a WARRIOR.

'Joseph's Domain' with new ventilator + nitric oxide (left) before ECMO removal

Joseph's primary nurse Lauren is such an amazing person. She has taken such good care of him from day one and is a big reason he is alive today. She loves him and is dedicated to his survival and well being. Many many thanks go to her.

Here is Joseph right after surgery (to remove ECMO)

Joseph and the high frequency ventilator

We have been by his side through it all and will continue to be there for the rest of our lives. Here he is gripping daddy's hand.

I have nothing but GREAT things to say about all the nurses and doctors at Children's at Egleston. Joseph also has a neighbor named Oakley who was born on 2/12 with CDH. She is also a little warrior and is battling this monster right along side Joseph. Oakley's parents are great people and we have been supporting each other in the hospital. We are so lucky to have new friends going through a similar situation with us. Please send your prayers out to Oakley and her family as well.
Thank you all for your support and prayers for Joseph and our family once again.

~Carla

Joseph's update | Week 2

2009-02-14T15:08:00.007-05:00

Hello everyone,

I just wanted to give you guys a quick update on Joseph's condition. We are still on the CDH roller coaster. But it's not fun. He had a good day on Tuesday and his ECMO flow went down to 200! They were planning to ween him off the ECMO flow to see if he could hold his own and then the next day he wasn't doing so well and they ended up turning the flow up to 300. He's back down to a flow of 270 now but he is having problems with his blood pressure being too high. The nurses and docs aren't sure why. Hopefully he'll have another good day soon. He is enjoying our company though, and we love being in the NICU with him! We witnessed him open his eyes for the first time Thursday night and that was simply amazing. He was also baptized on Thursday.

Here is Carla rubbing lotion on his skin. He likes it but he hates when people touch his feet.

His little body is so swollen and full of fluids that he looks like a fat baby. The swelling will go away as soon as he is off ECMO.

His nurse Lisa made a special Angel Blanket for him. She loves him so much and spoils him all the time. Such an amazing person! (That's her on the right in the 2nd photo from the top)

I have to send a special thank you out to all the nurses, doctors, and technicians that take care of Joseph 24/7. They love him so much and it shows in the care and treatment he is receiving. Also, I'd like to thank all of you wonderful people who keep Joseph and our family in your prayers. It's working.

-Sky

Joseph's update | Week 1

2009-02-09T23:41:00.005-05:00

Hello everyone. Just wanted to give you an update on what's been going on.

First off, we would like to thank everyone for their support and prayers. We are so blessed to have such amazing people keeping us in their thoughts and prayers during this difficult time. Joseph has definitely benefited from your love. This has been a crazy week for us but luckily we have gotten some amazing support from our family and friends. Carla's family has been taking care of our girls and my dad and step mom drove down from Houston to support us and spoil Alyssa and Sofia as well. They were also able to visit Joseph in the NICU.

Carla and I have been visiting with him everyday and he is improving little by little. He has his good days and bad days. He started out at a flow of 400 on the ECMO machine his first day and now they have taken it down to 270. The numbers have been going up and down but the goal is to get it down to a flow of 200. The ECMO is basically his life support, but the more they turn the flow pumps down means the more work Joseph is doing on his own which is great. We also found out that his heart hasn't been pumping as strong as it should so they are going to do an ECHO (heart exam) tomorrow. The nurses are doing their best to keep him sedated and relaxed because he's getting uncomfortable and fighting to get off the bed at times. We've noticed him kicking his feet and waving his arms. It's exciting to see him move but the nurses are worried about him pulling the wires and sensors off of his body. He knocked his oxygen monitor off yesterday and the nurse almost went crazy trying to figure out what happened. He is definitely a strong fighter, but we need him to relax. We are just praying that his lungs and heart are as strong as his will.

Joseph took a few steps back today, so hopefully we'll get back in track tomorrow. His lungs are a little more compressed than before, he had blood transfusion, and they had to add a few more medications including one more for the heart, so he's currently on two medications for the heart.

Here is a shot of Joseph chillin with his cool shades.

Mommy holding his hand. He is so relaxed when he senses Carla is around. She whispers to him and he reaches out for her. So touching.

Us with our little warrior.

Thank you and God bless you all. I'll be back soon with more updates.

-Sky

Joseph's Debut

2009-02-03T20:36:00.003-05:00

Hello everyone. I recently had the opportunity to spend some time with my little guy over at Children's Healthcare of Atlanta (Egleston) for a couple of hours. He is doing a little bit better now. He is receiving and maintaining the correct oxygen levels, his heart rate is good, and his respiration levels are ok. All thanks to the ECMO machine. He is heavily sedated so he isn't moving except for a couple of hic ups here and there. I do love the fact that the doctors encourage us to interact with Joseph even though he is in a very delicate state. I was able to touch his hands, rub his chest, caress his head and talk to him. It was a surreal experience! and we get to see him 24/7 while he is on the ECMO. The RN's, doctors and techs are amazing. They really care about getting him well and are very confident in what they do. They also make it a priority to ensure that we are fully informed on what's going on and that we are comfortable in the presence of Joseph under all of the overwhelming machinery and technology thats keeping him alive.

Here are some shots I took while I was in the NICU. I hope these images aren't too disturbing.

Before ECMO

Joseph is on ECMO now (day 1)

Thank you guys for all your support. It has really helped us look forward to the future during this difficult time.

-Sky

Joseph has arrived!!!!!

2009-02-03T11:32:00.001-05:00

Joseph Carter was born this morning at 3:34am. He weighed in at 7lbs. 9oz. and measured 20.5 inches.

His condition is more severe than we were expecting. His left lung is very tiny and his right lung “the good lung” has a hole in which the oxygen they are pumping in is escaping. They are trying to fix that problem now. He’s on 100% oxygen right now and the antibiotics and medicines and not helping him get any better. He was transferred to Children’s at Egleston around 7:30am this morning so they can do more tests and get him on ECMO a.s.a.p.

To be honest, right now Sky and I are a complete mess. We are right next to the baby nursery and upset that our baby isn’t in there. Hopefully we’ll get better news later on today. We are trying to stay positive, he’s fighting so we will too. He tried to cry when he was born but every time he started to cry he choked.

We’ll try to keep everyone updated as much as possible, Please keep him in your prayers.

Oh and Sky took some beautiful pictures of the little guy during and after the birth. Even though he didn’t want to get out the camera, which is unusual for him. Sky has been in a daze the entire time.

Thank you all for your support. Connecting with you guys through our blog and emails have really helped uplift our spirits. It means so much to us.

Sky + Carla

37 weeks and 5 days - update

2009-02-02T21:03:00.004-05:00

Hi! First of all I want to thank everyone for their emails, prayers, calls, gifts and support :)
Quick update: I had another weekly check up today and everything looks good. The baby was put on a monitor to track his heart rate since he hasn’t been moving as much as he was, but as soon as they turned the monitor on he decided to start moving all over the place which is good b/c we know he’s okay, but funny that he decides to start moving when I’m telling the doctor that he hasn’t been moving, lol.
The doctors have scheduled an induction for next Tuesday, Feb. 10 so let’s see if he stays in until then :)

Question for other CDH moms: What do I need to bring to the hospital for the baby since he will be at the hospital for months?

Thanks!

~ Carla

37 weeks - update

2009-01-28T00:09:00.005-05:00

Sorry for not posting in a while it’s been a little crazy over here :)
Last week I went to see Dr. H (Perinatologist) for our every other week appointment and we found out that all the intestines are up. Before we only had the stomach and about 1/3 of the intestines in his chest and now they are all up giving the lungs less space to grow and develop. The baby looked good and he was doing his “practice breathing” so at least that’s good news. His estimated weight last week was 6 lbs and 7 oz. and the amniotic fluid was on 18.2 which is good b/c it was high in previous appointments.

I also had my ob/gyn appointment this past Monday, my blood pressure was good and I have already dilated 3cm. So we are just waiting on him to decide to come out :) I hope he comes soon now that his situation has gotten worse.

We will be delivering at Northside Hospital, and as soon as he is born they will take him to the NICU at the same hospital. After they stabilize him and they see what we are dealing with, if he needs the ECMO machine (which I hope he doesn't) he will be transferred to Children’s at Egleston and if he doesn’t need it he will be transferred to Children’s at Scottish Rite which is across the street from Northside.

My next ob appointment is next Monday 2/2 but I don't think I'll make it :) Maybe we will have a super bowl baby.

~ Carla

Happy Birthday to me :)

2009-01-14T04:31:00.006-05:00

Today's my birthday, Happy B-day to me!!! The baby has been moving a lot lately, so at least I know I'm not going into labor soon. I have so much to do and I'm running out of time. He will be here in less than 5 weeks, and walking like a pinguine doesn't help me go any faster ;) His new hobby is getting stuck in my ribs.

Today I'm 35 weeks, time goes so fast the baby will be here soon.

~ Carla

Good and Not so Good News

2009-01-11T22:47:00.001-05:00

First of all I want to thank everyone for your support, it really means a lot to me. It's amazing how in situations like this people who don't know each other can actually be your best support and that voice that you want and need to hear saying that everything will be okay. I know that so many other moms that are dealing or have dealt with the same/similar situation I'm dealing with take their time to support me (a stranger) while I have "friends" who have disappeared during this difficult pregnancy.

The appointment with the Perinatologist last Friday 1/9 went okay. We received good and not so good news. The good news is that the baby is still growing well. He is measuring about 2 weeks and 1 day bigger (36 weeks and 2 days) and he weighs about 6 lbs. and 1oz. which is good for him b/c he will do better during and after the surgery. Now the not so good news is that they can see two lungs but they think they haven't had a chance to develop. The perinatologist doesn't even want to give me a 5% chance for each lung. I'm still crossing my fingers that the lungs did have a chance to develop and that they just can't see them b/c they are to smashed to be able to see.

~ Carla

My 2 Cents for what doesn't make sense.

2009-01-08T19:25:00.000-05:00

This is indeed a very difficult situation we are dealing with. It hasn't really hit me yet because I haven't given it a chance to sink in. I was so excited to finally be having a son but when I found out that we could be possibly preparing a funeral for him after his birth or even later on in his childhood I just couldn't believe it. I have to give thanks to Carla for doing her best to stay positive and healthy for the baby's sake and also to our families for their love and support. Carla's mom has come to stay with us to help Carla out and my father and step mother have already blocked off time in their busy schedule to be in ATL as soon as Carla goes into labor. I think Carla will need all the support she can get during her labor and postpartum. I have to stay strong so I can continue to hold everything together for our family and business. My step mother Mignon sent me an email with a scripture a little while back that I read everyday. I'm not a very religious person but I have gotten closer to God on a personal level and it definitely has helped me keep it together.

Here is the quote I read everyday (It's posted on the wall next to my computer screen so I have to see it)

Let Go, Let God
I let go of all concern and trust God for the perfect outcome.
Awaiting the outcome of a situation can challenge my peace of mind, but only if I let it. I choose not to let it.
Looking to God in prayer, I call upon my vital source of inner strength. I deepen my spiritual understanding and gain greater insight and patience. During my prayer time, I release any concerns and preconceived ideas about how the situation will unfold. I am ready for great results.
My faith in God helps me replace any negative perception with a positive outlook. With renewed strength, I relax into a realization of God's presence and let events develop according to divine timing.
Through greater strength and deeper faith, I trust God for the right resolution and the perfect outcome.
"What is my strength, that I should wait? And what is my end, that I should be patient?"--Job 6:11

-Sky a.k.a Daddy

34 weeks check up

2009-01-08T00:55:00.001-05:00

I had my regular two weeks check up this week and everything looked good. The midwife had a hard time trying to hear the baby’s heartbeat b/c he kept on moving around and around but after 15 minutes he gave up and let us listen for a little bit and she said it sounded good :) We have less than 6 weeks before he arrives and the closer the date approaches the more excited and nervous I feel. I still don’t understand why this is happening to us. The not knowing if he will survive or not is driving me crazy. This pregnancy has been really different from my previous two. I have not let myself enjoy it b/c I know I will get more attached to him and I know it will be more devastating if he dies. I’m still staying positive, but it is a very hard situation to live and go through. I have another appointment with the Perinatologist on Friday so we’ll see if we get better news :)

Happy New Year

2009-01-01T23:48:00.000-05:00

30 weeks ultrasound

2008-12-12T02:22:00.000-05:00

Below is a pic of the baby during an ultrasound at 30 weeks. If you look at his chest you can see "little dark/gray spots" those are part of the intestines that are in his chest.

The Beginning of our Journey

2008-12-10T23:14:00.000-05:00

Here’s what’s been going on in our lives…

11.15.08 – What an exciting day! Sky, Alyssa, Sofia and I went to the doctor for the initial ultrasound. This is one of those important days that every pregnant woman anticipates. After the “horrible” first trimester [when you are always tired and throwing up] the day of the ultrasound makes you feel so good and you'll know it was all worth it. It is so nice to finally get to see the baby moving inside you and find out whether it is a girl or a boy. I think everyone gets more attached to their baby after they get to see him/her growing inside of you.
As soon as the ultrasound started we immediately saw that it was a BOY! How exciting… The nurse started measuring the baby to make sure his growth was normal. After measuring him for about 20 minutes she told me to go walk around and come back in 10 minutes and that she was having trouble with the measurement. I asked her if anything was wrong and she said, “I just take the pictures and measure the baby so I don't know.” After she said that I was a little confused, was she saying that b/c something was wrong or b/c she really just takes the pics, measures the baby but doesn’t know if everything is okay. I went walking and came back and the nurse was accompanied by another nurse, she said she went to get help to see if she can get the measurements. I was like okay, do whatever you need to. They measured him for about 30 more minutes, at this time I knew something had to be wrong b/c the ultrasound didn’t take that long when I was having my daughters. I asked them many times what was going on, and they kept saying “We just take the pics and measurements, if there’s anything wrong I’m sure the doctor will tell you.” We left and went to celebrate the fact that we are having a boy finally! We called our family and friends to tell them the big news, and everyone was so excited, already asking and giving us ideas for names :)

11.18.08 – When I woke up to check my phone the next day I had a voicemail from Midwife K from the ob/gyn’s office to call her a.s.a.p. and that she has to talk to me about the results from the ultrasound. This was odd because I've never received an urgent call from a doctor or midwife with my first two pregnancies so I knew something bad was up. The Midwife K said that the baby was measuring 2 weeks bigger than he is supposed to but that’s not a problem and what she’s concerned about. She said the baby’s abdominal organs look like they are in his chest and that she would like for me to see a High Risk Maternity Doctor/Perinatologist. I asked her for more details on what was going on but she said she didn’t know the medical term and she wasn’t sure on what was in his chest. They made my appointment for 11/20. I kept researching online on what the baby could have and to see what I did wrong for him to be going through this and nothing made sense. I cried and cried and nothing Sky could say or do to help me worked. I was completely devastated that my baby was going through something and I couldn’t understand why and what it was.

11.20.08 – Finally the day came that I was anxiously waiting for- I wanted some answers and even though they weren’t the answers I wanted I found out what was going on. During my appointment Dr. H (the perinatologist) did another ultrasound to confirm what the first ultrasound said was right. He explained to me that the baby’s diaphragm (what divides the chest and abdominal organs) had a hole. This happens for no specific reason to 1 in 2,200 pregnancies. Since the diaphragm isn’t completely closed any abdominal organs can go through this hole and go up into his chest. The baby was diagnosed with CDH – Congenital Diaphragmatic Hernia. Our little boy has a hole on the left side of his diaphragm in which his stomach and parts of his intestines went up through and are now on his chest. That was the horrible news but not actually the “main problem” b/c the stomach and intestines can be lowered to where they have to be with surgery after he is born. The main problem is that since his organs moved into his chest and pushed his heart to the right, the organs are taking up the space where his lungs need to grow. If the lungs don’t fully grow the baby wont be able to survive outside of the belly. The baby’s lungs have too much pressure on them right now so we wont know if he'll be able to survive outside the belly until he is born and the organs are shifted back into place with surgery. They did an amniocentesis to see if the baby also had any genetic problems.

11.24.08 – Dr. H called saying that we have good news and that the baby has no genetic problems. Right now he's giving the baby a 60% chance of survival. Which I guess is better than the predicted 20% or 50% but knowing that I have a baby inside of me growing everyday and that as soon as he is born he might die is just not what a pregnant woman wants to hear, know, or experience. I still don’t understand why this has to happen to us.

12.08.08 – I had my bi-weekly appointment at the regular ob/gyn. The baby’s heart sounded perfect and I had my glucose test.

12.09.08 – They called me from the ob/gyn saying that I passed the glucose, so no diabetes :) and that the baby is just measuring two weeks bigger b/c he’s a big baby. I guess thats all the good news we'll get for now.