Pictures from Tuesday

I was home from work Tuesday because Julie had a severe case of mastitis -- what a wretched illness! She's recovering now and is over the 104 degree fever (very scary) and much of the soreness. Seems that we just can't get a break. I had to laugh at that point yesterday. We're much better today.

I had some quiet moments with Jonathan while she was at the doctor and Jackson was at his mother's morning out yesterday. His billirubin count is going down, so his jaundice should get better. He's eating great, but not gaining the weight he should be. We're making sure he gets the highest calorie stuff. Please pray specficially that his little body will gain the weight he needs to stay healthy.

All of your love and support is unbelievable. Please be patient with Julie and I as we back with those of you who've emailed, called, sent cards, and left posts here. I wish I could answer them all right away. The meals and gifts have been wonderful, too. Thank you so much. Know that we're getting your messages and they help brighten our days. Enjoy the pictures.

Jamie

Julie's Perspective

Monday, November 14, 2005 will forever be imprinted on my brain. Jackson and I started the day out by going over to Nana and Pops' house to play with Emma and Eric while Aunt Emmy packed the car to head back to Simpsonville. The kids and I were in the playroom. I was a bit uncomfortable but not anything out of the ordinary. Emmy and her kids left around 10 or 10:30am.

I was still in nesting mode and on the lookout for a few things. Jackson and I went shopping. I kept feeling contractions but didn't pay any attention. My doctor told me that if I didn't know if I was in labor, I was not in labor. I figured that these contractions didn't seem too bad, so I was probably okay.

Around 11am, I called the doctor's nurse and asked her if I could be in labor even if my water had not broken. She said to look for contractions five to seven minutes apart. I described my symptoms - I had lower back pain that kept me up the night before and I was having contractions closer and closer together. She said I should come in. I told her I didn't want to come in only for a false alarm. She said, "I really think you should come in, Julie." So, I made a tentative appointment for 1:00pm. I was going to cancel if my pain calmed down.

Jack and I were close by so we stuck around and went to Babies 'R' Us. After a while, I figured out that my contractions were around seven and eight minutes apart. At 12:05pm I decided to go home (20 minutes), pack a bag (10 minutes), and drive back (20 minutes). So, we set off for home.

I called Jim, my father-in-law. He was in the middle of a phone conference and asked if it could wait. I told him I thought I may be in labor and could he be on standby for Jack since he was the only person in town? Betty was in Montgomery packing her Mom for a move to Birmingham, Jamie was on business in Nashville, and my family was in Columbia. He said that was fine.

I got home, ran inside, tidied up, packed my bag, packed Jackson's bag, and then headed back to the hospital. At 1:10pm, I arrived at the doctor's office. He checked me and said I was five centimeters dilated and needed to be admitted to labor and delivery. His nurse walked me and Jackson down. The nurses at the desk asked who was being admitted and I said it was me. They said, "You are so calm!" To be honest, my pain was not that intense, probably because my water had not yet broken.

The nurses entertained Jackson with juice and coloring until Pops got there. Pops took Jackson home with him. I had called Jamie at 1:30, knowing he had a really important meeting in Nashville. I didn't call him earlier because I was afraid of a false alarm. He told me he already had the meeting and was on his way. I figured he wasn't telling the truth and I was right.:) He left a really important meeting so he could be here for the birth. I was simply afraid he wouldn't make it in time.

There were no rooms available at the time of my admittance so I was in the recovery room. Eventually, I was wheeled into a room. Soon thereafter, our neighbor arrived with Jamie's bag. Jamie had called him, walked him through the house over the phone, and got him to pack Jamie's bag. I could not believe it!

My doctor had broken my water for me when I was first admitted. Later, when I got to ten centimeters and the nurses were checking me, they noticed that all of the water had not yet drained which explained why I wasn't feeling that much pain. Once they got all the water out, I decided to go with the epidural. I wanted to go natural and when I asked the nurse if it was much worse as the baby actually came out she said that most women screamed. I decided to go with the epidural. I got it around 3:45pm but the anesthesiologist didn't realize I was going to start pushing right away. I could still feel everything. He upped the dosage two or three times until finally I couldn't feel anything. Jamie got to the hospital around 4:20 and Jonathan was born at 5:10pm.

When Jonathan emerged, I immediately noticed his thick neck. At my 20 week ultrasound, I remember the tech not being able to get a good neck measurement. That always stuck out to me. When Jamie cut the cord and Jonathan was handed over to a nurse to be cleaned up and examined, I asked her if Jonathan had symptoms of Down Syndrome, thinking she would dismiss me with a "Oh, no! He just has a chubby neck!" Instead, she said, "Actually, since you asked, he has four characteristics of Down Syndrome - extra fat on his neck, slanted eyes, spacing of eyes, and one line traversing his palm rather than two." Rather than euphoria, we felt shock and as if our breath had been knocked out of us.

Any baby would have changed our lives forever. Please understand - we love Jonathan dearly. We were totally unprepared for this and it is taking some time to get used to.

I feel tremendous sadness. I feel I have failed Jackson. I had not planned on being active in my child's life for my lifetime but I will have to now. I feel robbed. I feel numb. I cry most days. I hate it when people say, "God gives special people special kids." I hate that my child will carry a stigma with him the rest of his life and that people will stare at us when we shop, go out to eat, or travel.

What I have said in terms of what I am feeling may shock some of you. However, before you judge, simply put yourselves in our shoes. I know it will get better. In fact, Jamie and I will probably be the best parents both of our kids could have. Still, this has been a blow.

Thank you for your prayers. Please continue to pray for us in these ways:
1 - Jamie and I will work together and not against each other.
2 - We will balance Jackson's needs along with Jonathan's.
3 - We will adjust to this situation.

Signing off for now,
Julie

Jonathan Comes Home!

These pictures speak for themselves. We had a great Thanksgiving dinner with the Dobbins and Warren families at our house. Deep fried turkey--delicious. We went to the NICU mid afternoon. We arrived home at 6pm on Thursday. We did better last night than Thursday night -- all four us actually slept. While he's been on mom's milk since birth, Jonathan's slowly transitioning back to Julie feeding him instead of the bottle.

Jackson's getting over a cold, so we're having to keep him away from Jonathan. He's better today. Jonathan's monitor has had a few alarms, but most have been false ones. Even if his breathing slows, he gets back to where he needs to be in a few seconds. It's all starting to sink in. We're enjoying Jonathan in all his wonder. If we can focus on the "now'" and not "years from now", we can have a good day.

Please keep praying for our family. We feel it.

Jamie
(see pix below)

Wednesday PM

Jonathan has breathed on his own since Monday night. His heart condition doesn't seem to be causing the lower oxygen levels at this point. Often when he's sleeping on his back, he gets so relaxed that his tongue obstructs his airway. So, the doctors have slept him on his tummy. This has been graet for his levels and breathing. He's done so well, we're planning to bring him home tomorrow. Thanksgiving will take on a new meaning for the rest of our lives.

Today, we fitted Jonathan with his new heart/ respiration monitor. We have the peace of mind that we'll know within seconds if his circulation or breathing aren't within acceptable levels. Imagine your smoke detector going off -- it's that loud. It's a little band that we velcro around his chest. He'll wear this little unit for a few weeks up to a few months (except for bath time). It even travels with us.

We're a little scared to bring him home. We had a 1.5 hour training class today, a refresher course on CPR, and all the extra things we need to know to care for him. The monitor did go off a few times at the hospital today. He'd get super sleepy and his breathing would slow. He needed a gentle shake and re-position to get back up. It's a real sensitive unit, too. So, often if he moves around it will go off. This will take some adjustment on our end.

Jackson's excited about his baby brother coming home... he obviously doesn't comprehend that this is the final night of his reign as the sole Warren prince.

After we fry a turkey with the family tomorrow and eat all the trimmings, Julie and I will go get him from the NICU. Look for new pictures and posts tomorrow PM.

Please pray that his lungs continue to strenghten and that he learns to regulate that breathing. As he gets older, it should improve. Pray for wisdom for Julie and I to be vigilant as we care for him. Pray that Jackson learns how to share us with his brother. With all the emotions of fear and uncertainty, I'm so excited that all 4 of us will be under one roof tomorrow.

May all of you count your blessings and rejoice on Thanksgiving.

Jamie

Breathing On His Own!

Julie returned tonight from the hospital to report that Jonthan's nasal canular has been removed! It's key that his oxygen saturation levels stay above 90. He must do this on his own for 48 hours before he comes home. Julie said he was down in the 80s some, but that he would eventually get back up above 90. We obviously want to get him home ASAP, but really want those lungs to be strong. I have a hunch his healthy appetite is helping him out (my non-medical opinon).

Please pray specifically that his saturation levels stay strong above 90. This is the first time in 5 days he's attempted this. It's a huge step for him.

I want to take a moment to thank all of you for the unbelievable outpouring of support on our family. All the prayers, calls, emails, offers to help or listen are in a word... overwhelming. I spoke with my parents tonight, and we all said that we had no idea that so many people loved and cared for us. No idea. We will never be able to thank you all enough. It seems so unreal. Know that we'll "pay it forward" to those who will walk where we are now.

We're not out of the woods by any stretch, but I wanted to take a moment to count our blessings. I wish I could thank all of you personally. Our church, RBF, my parents church, our family, our friends -- your encouragement has held us through all this. I wish that Jonathan could know what an impact he's made. My father said it best -- this 7 pound, 6 ounce little human has impacted more people in the last 7 days than most of us do in a lifetime.

Keep praying for our son. It's working.

Jamie

One Week Old

Jonathan is starting to smile. He's getting almost everything done to head for home. We're still waiting on that oxygen saturation to stay up on its own.

The little guy drinks bottles of mom's milk like a frat boy at a weekend party. He set a time record today when I dropped by to feed him at 1pm. This healthy appetite is atypical for Downs babies (who are usually sluggish eaters).

I vacillate between anger, hope, sadness, and joy (when I'm with Jonathan) throughout the day. But, I know that all of these feelings are a part of it. So, it's OK. My father likened this journey to climbing a mountain. It's tough and arduous at times. You can get hurt. But, the perspective and view after you've been climbing a while is the reward. You can help those coming after you. And, you can gain strength from those who've gone before you. I thought the analogy was perfect. Special thanks to him for this photo.

Jamie

Sunday AM

Joanthan's on less supplemental oxygen now than he has been. He's still eating very well. He's come off the lights for now. If his billirubin stays down, he'll be done with the 'sunbathing'. I got to hold him for about 30 minutes this morning. His temperature dropped a bit - not being in the isolate (that's the enclosed case he lies in to keep his temperature steady). So, they put him back in. He's wearing his own clothes now. It's good to see him in those vs. the drab hospital stuff.

Please pray that his lungs with strengthen. If he can breathe room air without any help from the canular flow, we'll start the 48 hour clock to coming home. While it would be wonderful to have him home on Thanksgiving, he might not be ready then. Julie's feeding him now. Thanks for your continued prayers. We feel them.

Jamie

Saturday

The the hospital has wireless access, so I'm here with Jonathan typing this. I got to hold him some before Julie arrived for his 12:30 pm feeding. He' really active today. Oxygen level is good -- but he still has the nasal canular. The Oxygen levels are keeping us here. He has to have at least 48 hours of unassited breathing before he goes home. We did get the preliminary chromosome reports back. Jonathan tested postive for Trisomy 21. It's the vanilla-type, run of the mill Down Syndrome. We'll know in a month if we're at risk for subsequent pregnancies or if he has another type. This news, while saddening, brings the first bit of closure to our situation. Julie just said to me "it's going to be OK." It's the first time I've heard her say this since he was born. I agree. It will be Ok because we'll do it together.

Eat up!

Jonathan is eating very well -- whether Mom's feeding him or he's taking it from the bottle. Tonight I got to feed him. He was tired, but eventually got down the 40cc he needs to eat.

Jamie

Catching Some Rays...

We learned this morning that Jonathan's billirubin levels rose overnight. He'll need a few days under the lamps to help the jaundice - common with newborns of all types. This shouldn't delay us much. As long as he continues to make other progress in his oxygen levels and eating. You see he's sporting designer eye shields - only the best for our boy!

Julie is Home

Julie and I came home last night. So, Jackson and us are back under our own roof. Jonathan is still in the NICU. We'll start the process of visiting him whenever we can. It's not supposed to be this way... us home and him there at the hospital. It was a sad drive home last night. But, we had a good dinner.

Jamie

'Pops' and Jackson with Jonathan the night he was born.

Original Email - Nov. 16

Dear family and friends,

We wanted to share with you that Julie delivered our second child on Monday, Nov. 14 at 5:10 pm. Our first born, Jackson, now has a beautiful, younger brother -- Jonathan Hall. We’ll call him Jonathan. 7 pounds, 6 ounces;19.5 inches long; delivered the “normal” way (no C-section).

Jonathan’s due date was December 1—he was 2.5 weeks early. Along with the unexpected early arrival have come some other unexpected challenges with him.This email is rather long, so I’ll try to give you the quick facts up front. If you like, you can read the details below (for example, how I almost missed being there for his birth). Also, please feel free to forward this to anyone who might be interested.

Immediately after his birth, we noticed that Jonathan was sluggish. We also noticed that he had some physical features that weren’t quite normal. While in the nursery early Tuesday morning, he quit breathing and required oxygen. This indicated that there might be some cardiac problems. He was immediately put into the Neonatal Intensive Care Unit (NICU) and is still there today. All these signs and the initial exam from his pediatrician indicated that he might have Down Syndrome. While the chromosome studies will confirm the diagnosis,we’re 99.9% sure that he has this condition.

Quick facts about Down Syndrome:
For those of you who don’t know, Down Syndrome is a chromosomal abnormality that occurs in 1 out of 700 – 800 births. This is no known cause and can happen to anyone. It’s a genetic mistake that happens when cells start to divide at conception. Children with it experience some level of mental retardation, greater physical challenges and risks for disease. Their typical life span is shorter than normal. Their faces are slightly more round, eyes are closer together, and have other indicating features.

How we are feeling:
In a word, we are devastated. All the hopes and dreams for him having a normal life are shattered. We have experienced shock, anger, grief, and the deepest sadness we’ve ever felt. All of the questions and long term implications have flooded our minds. Our lives will be forever changed, and we’ll have to learn new ways of parenting, adjusting, and raising him and Jackson. The hardest thing is that this is permanent. We are experiencing this as more painful than a death. The good news is that we actually slept last night, and we ate this morning. These basic things make a difference. We're feeling hope for the first time today.

All of you:
I received about 40 calls to my cell phone yesterday. I haven’t returned manyof them Julie received about half that, and the phone here in the room is ringing constantly. I can’t thank those of you who have called enough. I’m sorry we’ve been detached, but this situation has been the toughest thing we’ve ever had to deal with. I appreciate all of the encouraging words, scriptures, and prayers. We haven’t mentioned the Down Syndrome until we were sure. Sorry if we’ve seemed vague or evasive. Thank you for your patience as we’ve slowly given everyone details of Jonathan’s condition.

Jonathan’s heart:
One of the main challenges with Downs children is the congenital heart defects. Jonathan has an Atrioventricular Canal Defect. This means he has a hole in the center wall that separates the two halves of his heart. Two valves also aren’t functioning properly. This allows low and high oxygen blood to mix and it puts undo pressure on his lungs and blood vessels in them. This must be fixed. Our goal is to have this open heart surgery in the next 30 to 45 days. If successful, this should be the only heart surgery. We’ve got to keep him healthy so he’ll be ready.

Support:
There has been an overwhelming outpouring of support. It seems we’ve joined an elite club of parents with a special needs child. There are early intervention programs of physical, occupational, and speech therapy. We’ll start these programs as early as next week. We’ve had nurses and case workers who have Downs kids come by to let us know that they’ve been there. We have more cell and home phone numbers of helping people than we could call.

What we need right now:
So many people want to be helpful by being positive. We appreciate the intent, but canned answers do more harm than good. We know that eventually we’ll see that this experience will be a blessing and open doors that we wouldn’t otherwise have. However, we don’t feel that way right now. We want to be real about our hurt. It’s therapeutic for us to be real. So, telling us that “special kids are matched with special parents,” “God’s in control,” or “you need to give it to the Lord” – while true – isn’t something we need to hear.What we do need is your prayers. We need you to let us be real with you. I’ll probably be able to respond to email quicker than calls. You can call if youlike, just please be patient with us getting back with you if we miss your call. We’d love to hear from you.

Jonathan’s name:
His first name means “gift of God.” We selected this name ahead of time as oneof four possible names. After having him, it seemed especially appropriate.“Hall” is a family name from Julie’s side of the family.

Monday, November 14:
I had scheduled my last business trip before Jonathan’s due date for this day. We were 2.5 weeks away, so I thought it would be fine. It was a one day tripto Nashville. I got a call from Julie at 1:30 pm telling me that she and Jackson were at the hospital and she was dilated to 5cm. I immediately left the meeting and began to drive home—setting a land speed record. I talked on my cell the entire way back to make plans. One of our neighbors went to our house filling up a bag of things. Julie had been having contractions for several hours, but didn’t really feel all that intense. Once she knew she was in labor she was immediately admitted. I talked to family, and my Dad came tothe hospital and took Jackson to their house. I arrived at the hospital at4:20 pm (in time for Julie to start pushing). Jonathan was born at 5:10 pm.

Next steps:
We’re going home today. Julie’s recovery has been much easier than with Jackson. She’s feeling very good physically. Jonathan will come home as early as tomorrow or maybe several days from now. It all depends on his ability t obreathe normally, keep a stable temperature, and make sure he doesn’t have any infections. Jonathan has been off his oxygen since last night. That’s good. He fed this morning and got off his glucose drip. That’s good, too. We’ve been able to hold him a few times since he’s been in the NICU. We’ll go to feed him again this afternoon at 3pm. For the next several days we’ll be uphere most of the time that the NICU is open. Once we get him home, his care will be much like a normal baby. We’ll just have special things to look out for. Jackson has spent the last 2 days with my parents and is very proud of his little brother. He’s been up here to see him some. It will be good to be back at our home with him tonight.
Thanksgiving will be very special next week when all four of us will hopefully be home together. Julie’s family is coming into town over the next week.

This is an unexpected set of challenges that in time we’ll grow to accept.While we’ll never know the reasons for this (this side of heaven), we’ll do the best to provide a safe, nurturing home where our kids can thrive. We are Christians, and know that God has purpose for this. He also has every bit of strength we'll need for it, too. Someday in eternity, the four of us will be together as complete, perfect people in the midst of Jesus. I’m so blessed to have Julie as my partner along this path. And, I love my sons… my 2 beautiful sons who will emerge more and more special in their own unique ways.

Our families and friends are so wonderfully loving and supportive. Knowing we’ve had so many people praying and caring for us has been a comfort. I will never be able to express my gratitude for your love.

I hope to return to work on Monday of next week. Attached is a picture of Julie and Jonathan shortly after his birth.

Jamie