dr. block gets a hug

Jonah seems stable for the time being. They took him off his constant pain medication drip, because the overload is apparently what made him stop breathing earlier today. He has been okay ever since. One of the doctor's who saved his life this afternoon, Dr. Block, is one of the most caring and compassionate people I've ever met. He did an amazing job restoring Jonah's breathing while being very careful with his fragile state. After having an oxygen mask, suction etc, Jonah has very few new blisters to show for it all.

And about an hour ago, after Peyton and I had gone back to see him for some great eye-open time, we happened to pass Dr. Block on the way out the door. I gave him a huge hug and thanked him for saving my little boy's life. And he hugged me so tight back. He then asked me how we were doing, let me cry a little, and talked to us for about 20 minutes, helping me understand EB more and some of the diagnosis possibilities. He said that he was trained by some of the first neonatalologists, and that one great woman, who died in her nineties recently, always told him to think about how the family feels and whether or not the parents have gotten to hold their child. He said, "I know how hard this must be on you." And he meant it. He told us a little about the three types and reassured us that we can't make any assumptions about what type Jonah may have. He doesn't think it will be as long as three weeks before we find out a more specific diagnosis. I am very concerned that Jonah is developing new blisters, just from lying in bed, but Dr. Block says this is normal for EVERY type of EB. He said that the Simplex version is the least serious, and that most times, kids can outgrow this and live symptom free - so that version would be great news! However, so many people have left comments about more severe versions of the disorder, I'm going to bed hopeful - people who are married, have kids, or who ARE kids who wrestle with their daddies! Thank you guys so much. I can't wait til I have time to look at all the great sites you've mentioned for ideas and support!

One new concern tonight is that we have tried twice to bottle feed Jonah, and he won't even attempt to suck at all (whereas he was sucking on a paci like a mad man yesterday). This could be just because he's drugged up and tired, but there is some concern that he's developed blisters in his mouth and throat (an indicator of one of the more severe versions of EB), and that he won't suck because he's hurting. Hopefully an ENT and lung doctor will examine him tomorrow to see how he looks from mouth to bottom.


So, specific prayer requests for tonight (or tomorrow for those of you who aren't on a Holy Spirit High and will have the benefit of Ambien to help you knock yourself out):


- that Jonah will have the Simplex version of EB
- that his mouth and throat look healthy and whole
- that he is not in very much pain now that he is on lower doses of pain meds
- that his little body resists infection (STILL the biggest concern and greatest danger)


Here are a couple pics of our attempts to feed our little man. I got to lift his head by putting my hand under the pad he's lying on. The weight of his head in my hand was the best thing to happen all day! I sort of got to hold him. Hooray!



Thanks so much for continuing to love on us and lift our Jonah up in prayer! We know God can do miracles, and Jonah can be healed.

Pictures of Jonah

I'm sure Patrice will add more pictures later but until then, Lauren has updated her blog with the most recent Jonah pictures.

jonah - saturday, feb 28

UPDATE 3:07 pm -
I was feeling a little better this morning after a refreshing 3 and a half hours of sleep (interrupted every hour for a stats check, drugs, and a blood draw). But then I busted out (legally, of course). I then headed straight to Brenner's to see Jonah, where Matt gave me a good report from last night. Jonah stats were stable, he was still breathing on his own, Matt had gotten to spend a whole 10 minutes with him with his eyes open, and also got to go on rounds with the doctor's when it was Jonah's turn. There is no intestinal blockage, so no surgery in Jonah's future, as far as we know. The burn team also came down to make recommendations about Jonah's dressings. They asked that he be covered with the gauze on ALL parts of his body, even the non-lesioned parts (which are few), to further protect him from infection. He's the cutest little mummy I've ever seen.

And to top it all off, my family greeted me at Brenner's with the words:
"Jonah's famous!" "MckMama put a note about him and your blog on twitter."
"I got tweeted by MckMama???!!!"
Although MckMama is TOTALLY awesome, I must admit I'm a little more excited to have access to her gazillion prayer warriors than to be mentioned by her Bloginess. (Although that is way cool too!)

Matt and I went in to see Jonah as soon as I got here today, and we got to speak with the dermatologist. The biopsy came back, and he definitely has Epidermolysis Bullosa. The dermatologist says that he is rare - only 8 cases in every million babies. There are three types of this disorder, but we don't know which one yet. They will now have to do an electronic microscopy on his sample to determine which type he has. She said it could be up to three weeks before we know the results. They haven't really indicated that one of those types is necessarily worse than the other, but I haven't had time yet to research all three. The severity is yet to be determined, and is more a touch and go, day to day sort of thing than a right now thing. Although one doctor thinks he has a severe case, the dermatologist says that, in her opinion, that can't be determined by his lesions right now after having gone through something so traumatic as child birth.

After Matt and I finished our visit, I took Amy back to see him. We looked at him for about 10 seconds when he started turning purple. She and I were both freaking out, trying to get someone's attention. Luckily the dermatologist was still in there and was more assertive in getting someone to attend to him. He was purple for what seemed like a really long time before the alarm went off, and everyone went into action. He had stopped breathing, and it took them several minutes to get him breathing again. Amy ran out and got Matt. And for a few minutes, Matt stood and watched them work on Jonah while I cried in an opposite corner of the room. It was extremely scary, and I still have not settled down from it. I'm somewhere between afraid to leave his side for a second and not wanting to be back in there at all.

On a lighter note (I'm trying to find one per day), before delivery yesterday when all I could have was transparent liquids/jello, I mentioned, with my Maw-Maw in the room, that all I wanted was a Fuddrucker's cheeseburger. Maw-Maw charged the Fuddruckers gates this morning at 10:00 am (they don't open until 11), begged them to let her in, and we had three burgers in our room by 10:45. We're pretty sure she probably told them all our story and had them crying before it was all over. She's great like that. The funny part is that when she came here to Brenner's (before I was here) and told several people her story, she kept saying things like. "All she said she wanted was a "Fubbruckas" (or) "Fuddruckles" sandwich. I've never even heard of that."
She's so cute. Bless her heart.

One of my new commenters reminded me of this verse (thank you):
In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express. And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for the saints in accordance with God's will. And we know that in all things God works for the good of those who love him, who have been called according to his purpose." Romans 8:26-28

It helps me feel okay that I don't have the words, and sometimes I'm too numb for prayer at all.

***

A reader sent me this link about a clinical study being done with 30 patients who have EB, where for the first time, a bone marrow transplant has been used to treat something other than a bone marrow or blood disorder.

We won't know until Monday if this is exactly what Jonah has, but all signs are pointing to yes. The article says that it is a "disease that, though rare, causes the skin to fall off at the slightest touch and inevitably leads to cancer. Most children who have it do not survive to adulthood." This is probably descriptive of kids who have the severe version, but we are hoping and praying that either Jonah has a mild version or the diagnosis is completely wrong. Please pray for one of these two options or a complete miraculous healing for our beautiful, beautiful boy.

There's also a video link on the page of a the toddler age brothers who are undergoing this treatment.

I haven't talked to Matt yet this morning. He went home to get some sleep while mom stayed with me at the hospital. I'm getting released today, as soon as the doctor comes by and gives me the go ahead, and then I figure the next week will be a lot of time spent at Brenner's loving on Jonah as much as we can from outside his plastic sterile box. We can't touch or hold him, but can crack open one of the little doors and talk to him. He acts like he knows us, and will typically calm down when he hears my or Matt's voice.

He seems to be stable at this point. He's breathing on his own, and all his vital signs are strong. He is covered in yellow antibiotic soaked gauze all over his body to keep his lesions moist and infection free. His eyes need to be checked by a specialist since this disease affects the mucus membranes, it could affect his eyesight.

"Fragile" doesn't seem like a strong enough word to describe him. I'm not really in the state to cheer lead and say that everything is going to be okay. I do hope and pray that we find out some really great news on Monday, but it's an overwhelming sadness and anxiety that fill me now. Please pray for Jonah. I haven't yet been able to find the words to pray myself.

jonah update

I just got an update from Matt. He spoke with the doctor at Brenner's. He is 99% sure that Jonah has a genetic disorder called Epidermolysis Bullosa. He said he sees one case every other year. There are two degrees of this: severe and mild. The doctor said from looking at Jonah's lesions, he guesses he has the severe version. A biopsy will be done (I'm not sure when) to determine his severity level. If this is what he has, it affects three things: his skin, his mucus membranes, and his intestines. The two things that doctors worry about the most are infection (because he doesn't have much of his outer skin to protect him) and intestinal blockage from the sloughing of the intestines (similar to what his skin is doing). At this point, Jonah is on three sets of antibiotics, pain medication, and a sugar water drip. He does not seem to have intestinal blockage at this point. If he were to develop that, he will need surgery.

The doctor has seen kids who grow out of it for the most part as they get older, kids who have died from infection or intestinal blockage in early childhood, or people who have died from the same things in early adulthood. It does not affect his heart, lungs, kidneys, or brain.

The doctor said that this is likely what Gabe died of. He said it would not have been caught in the genetic testing we had done because that only tests for the most common things, and they assumed his skin sloughage was because he had died, not that that could have caused his death. Jonah's prognosis, at this point, depends on the severity of his case, which will be determined by the biopsy they are doing tonight. It will probably be Monday before we get the results.

There is no cure.

I'm getting a six hour pass to get out of Forsyth and go over to Baptist to see him.

I can't explain to you how our lives have turned from elation and happiness to complete heartbreak in a matter of minutes. We are both so low right now. It is so difficult to remain hopeful. This is very serious. Please continue to pray for our strength, that Jonah is the toughest baby ever, and for a miracle. Our God can do all things.

There is a possibility that it could be something else, so we just hope that this is not what it is, and that he has something much less serious.

Please keep praying.
Patrice

baby gamecast

5:45 am- Started having contractions on own on way to hospital

6:00 am- Arrived at hospital

8:30 am- Finally started on antibiotic for Group B Strep

9:11 am- Started on Pitocin to induce serious contractions

12:15 pm- Epidural. Much more comfortable now. Baby's heartbeat still very strong.

1:15 pm- Water broke. 4 cm dilated.

2:55 pm- 9.5 cm dilated. -1 station.

Lauren has a few pictures up here.

3:50 pm - This is Patrice. Jonah Alexander was born at 3:50 pm. He seems very strong, but was born with some sort of skin issue. His top layer of skin is peeling pretty badly and he has a few purple lesions on his skin. None of the doctors here seem to know what would have caused that, and he has been taken to the NICU. He will probably be transferred to Brenner Children's Hospital tonight or possibly tomorrow. His skin is very red and raw, and at this point they are treating him like they would a baby with burns. I got to hold him for only a few minutes, but they took him away fairly quickly to begin treating him. They said he could be in some pain, so we didn't want to keep him up here very long. Matt is with him, but they said it would be at least an hour before we "know" anything. Please be praying. It's very scary that none of the doctors know what is going on. How do you treat something you can't identify? I'm so happy he's here, and so completely devastated and scared at the same time. I don't know what he weighed or his length. He seems to be at least 6 lbs. He has light colored hair and is very cute. Thank you for all your prayers so far, but we still need you. Please pray that the doctors would have wisdom, that someone could figure out what is wrong, and that it is something they can treat and not something that he will have to deal with the rest of his life.

baby eve

We have an update. We sign in tomorrow at 6:00 am. Woo-hoo! Great news! I am already 3 cm dilated and 50% effaced, so apparently he's ready or getting there at least.

There was a tiny bit of bad news. My Group B Strep test came back positive. This means I'll have to get IV antibiotics during delivery. That wouldn't really be a big deal, but I'm allergic to penicillin and keflex, the two primary antibiotics used for that. The doctor told me today that she wants me to be on the antibiotics for four hours before she'll break my water. But they will go ahead and start the pitocin so it doesn't really mean things won't progress, it just means there won't be any pushing or anything for at least four hours. It probably wouldn't have gone any faster than that anyway. Without the antibiotics, he could get pneumonia or other bacterial infections.

So, specific prayer requests for today and tomorrow:
- Pray for continued peace and a hopeful outlook
- Pray that we will hear the Voice of Truth, and not the voice of the deceiver
- Pray that whatever antibiotic they choose will work just as efficiently as the others and that I won't be allergic to it.
- Pray that he doesn't break my water on his own before I've been on the antibiotics for four hours. (I'm not really sure what that could mean - probably a c-section or an increased chance of him getting sick)
- Pray that he will survive and that God will get ALL the glory

Thanks for your prayers and messages of hope. You're the greatest!

Check back for updates throughout the day. Hopefully by this time tomorrow, you'll being seeing pictures of who we've all been praying for for so, so long!

famous by association

This link is to a video of our friend and fellow Pinedaler Katelyn who recently appeared on our local Fox 8 news. She did us the great honor of singing at Gabe's funeral, before we even knew her. I really wanted her to sing at his service, but at the time, didn't even know her name. I certainly was in no shape to be making funeral decisions, so didn't say anything about this to anyone except Matt. But the next day, they called from church and said that Katelyn was going to sing. I know it was just a little thing, but also a divine blessing that made Gabe's service even more special to us. She sang for me when I couldn't, and I'll never forget. Thanks, Katelyn!

I wanted to embed this video, but that wasn't an option, so you'll have to click on the below link.

http://www.myfox8.com/news/morningnews/wghp-morning-katelyn-marks-concert-090224,0,6759589.story

So, anyhow, I think this makes Gabe famous by association. I always knew he was a rock star!

update

This is what I came home to today!

And guess what? The doctor said that if he gets the cast wet, he has to come in and get a new one, and we will have to pay for it out of pocket. Um, 'scuse me? We are having a baby BOY here, people. Projectile pee anyone?

So... Matt will NOT be changing any diapers for the next four weeks (well, the doctor said he could if he puts a garbage bag around his cast... yeah, that sounds practical). He has never changed a diaper before, and now he has an out. This guy will do anything to not change diapers. It's okay though. I'll have some help for the first week or so, and I'll just let my brother change the first diaper (mmm...meconium) since he enjoyed it so much with Asher.

3 more days

Hi friends. Well, I have to admit I'm not doing so well these last couple days. The baby seems to be doing fine, but his mommy, on the other hand, is a basketcase. I can't explain why. The doctors and nurses keep reassuring me that everything looks good, but I just can't wrap my head around that and frankly think to myself, "Yeah, yeah, talk is cheap." I hate feeling that way, and I hate that I'm letting Satan get his hands on me like that. I know you guys are all praying, and I just want to thank you so much for that. I can't imagine what kind of shape I'd be in without it. I'm on the verge of tears most of the time - sometimes out of fear, and sometimes out of awe at how many people are loving on and praying for us. It blows my mind, just like it did when all you guys were doing the same for us after Gabe died. I'm hoping this is finally our happy ending beginning.

We had an ultrasound this morning, and everything looks encouraging for the most part - plenty of amniotic fluid, good blood flow through the umbilical cord. The only concerning thing (to me, not to them so much) is that he is measuring small by a couple weeks. They are estimating 5 lbs, 9 oz, but those ultrasounds can be off by a pound or so either way. My main concern with a low birth weight is that his lungs may not be as strong, and that he may have trouble breastfeeding and lose more weight. With a baby that small, losing weight is a scary thing. Gabe was 6 lbs, 14 oz, so I was hoping this one would follow suit. That was pretty good for a 37 week old baby. Maybe the ultrasound was wrong, and he'll be bigger. I just don't want to hurt him by taking him early, but we don't really have any other choice. If I had to go til the end, they would have to put me in some sort of facility for the clinically PSYCHO.

On a lighter note, I have discovered that in addition to the general fear and anxiety about the baby's survival and health, I am also starting to get anxious about the actual delivery. This really surprises me. I've been through it all before, and physically, it was not so bad, so I haven't really dreaded it... until now. I had a dream last night that Matt Lauer came into my hospital room holding the HUGE epidural needle. I climbed up on the filing cabinet and started yelling at him, "You're not an anesthesiologist! You're Matt Lauer! I want to see a resident! Bring me a resident!" I don't know why Matt Lauer. And I don't know why there was a filing cabinet in my hospital room.

In other news, Matt broke his wrist last night. He went to play a pick-up game of basketball at church, tried to stop a guy from getting a lay-up, got knocked down (the guy was a little more solid than originally suspected), and fell on his wrist. It did not swell up very badly (we immediately put ice on it), and he slept through the night, so I thought it was probably just sprained or something. However, we went to the doctor today just to make sure (he's been waiting for 19 months to hold that baby with two arms), and it's broken!!! He's at the orthopedist now. I don't know what kind of cast it will be, and I'm bummed for him having to get his first baby snuggles that way. But I'm also thankful we didn't put it off and got it taken care of.

I guess that's it for now. I'll post again before Friday, and assuming the hospital has wi-fi, Sarah or Shaina will keep you guys updated about how things are going. Please continue to pray. I feel like I have an elephant sitting on my chest all the time. I'm so ready.

me and baby 35 weeks

Shaina took this picture this past Sunday out in Gabe's garden. It's a little late - I'll be 36 weeks tomorrow. I had a doctor's appointment today, and all is still looking good. I am already 1.5 cm dilated, and Dr. Reynolds says that's very encouraging. They've done all the paper work, called the hospital, and set me up for next Friday morning. I asked the receptionist what time we would go in, and she said they will call me next Thursday and let me know... but it is looking good that it will be the morning - which is great news!

Please continue to pray for us - for safety and health of baby; for peace for Matt, me, and our families; an early slot next Friday (so I don't go completely NUTS), and for good progression and a not ridiculously long labor when we get there. That sounds really needy... I'm okay with it. Thank you all so much. We're almost there!!!

a shout out

I have nothing super exciting to post, but I felt delinquent, so here goes...

First of all, I'd like to give a little shout out to my hubby for being so totally awesome. Holla!

While I was at a Leadership Day this past Saturday for Young Life, Matt redid Gabe's entire garden - cut down and de-potted the old plants, went to Lowe's and bought all new flowers, planted aforementioned flowers, and put down a new layer of pine straw.
Plus, he made the bed.
Plus, he cleaned out and vacuumed my car.
Plus, he loaded the dishwasher.
All to make a girl cry like a freakin' baby smile.

And then on Sunday, after I mentioned that I wished my toe nails were painted (a feat that is definitely not possible for me... no pun intended... get it? feet? feat?...anyhoo), so I could wear flip flops during this awesome weather week, he offered to paint them for me!!! What? Doth mine ears deceive me?

"Have you ever painted toe nails before?"
"No. How hard can it be?"
"You'd be surprised, actually."
"So do you go side to side?"
(In my head) "Uh-oh"
But after a quick tutorial, all was well, and he did a great job.

And I got to wear flip-flops! Woo-hoo!!! I've been dressing like it's 80 degrees outside instead of 65, but when all your winter maternity shirts are way too small, and you are tired of the 4 you have that still actually cover your belly (sort of), you get over it and wear your cute shirts. If I'm going to feel like a whale, I'm going to feel like the cutest whale you ever done saw.

On a more serious note, 2 weeks til baby. We are getting more and more excited and more anxious (if that's possible) with every day that passes. Please keep praying. Because I've been so weird about planning for this baby to actually come home, I made a list of things I need to do the other day. In addition to cleaning, it might be good if I washed his clothes, fixed the nursery, set up his health insurance, and found a pediatrician. I mean, you know, whatever.

But before I could do any of that, I wanted Gabe's garden to look good again. I didn't feel right about being all excited and planning for new baby when his garden looked so dead and depressing. But now it's bright and sunny, with new flowers and a full bird bath. So the outside now has its sunshine, and the inside's sunshine will be here in just 15 days. Thanks for continuing to lift us up. Love you all!

me and baby 33 weeks

Here are the latest photos of me and baby.

I had a fat face complex about all the pictures that Shaina took of Matt and me. So here is the one I finally chose...

Here I am at 33 weeks with Gabe. I can't really tell, but I think I'm a little bigger this time. This picture makes me miss Gabe... and the Spring.