Friday, June 29, 2007

FOUR weeks old today!

Can you believe our little man is FOUR weeks old already? (Not to mention my FIRST baby is four YEARS old on this Sunday!) Josiah is doing really well, but he's still having a hard time with transitioning to nursing full time-- he still lacks the endurance to be a full-time nurser, so my love affair (yeah, right!) with pumping continues. He's sleeping well most nights... last night I finally woke him up after SEVEN hours as I didn't want him to go any longer without eating. I know some would say I am crazy to wake a sleeping baby, but he's just still so little...


In other Mangine family news-- here's a great picture of Nico that Vivian (our social worker) took on her trip to Haiti to visit Nico's orphanage last week. He's pretty big, huh? And CUTE! Still no definite date. We are just waiting on some final immigration stuff-- we know it's mid-July sometime, but no definite date yet... please continue to pray for patience for us.

Thursday, June 28, 2007

The Dog Traquilizer Story

Totally unrelated to Josiah, except that it's a story about his dad...

The Dog Tranquilizer Story

This happened about 4 years ago. Nick and I went out to Manteo with a very little Nia and our dog Strom. Strom was still in his puppy years then and was really bad in the car, so we had taken him to the vet and had the vet prescribe a sedative for him for the car.

This was the weekend of Nia's dedication & naming ceremony in Manteo, so we were expecting a lot of company at my mom's house-- her side of the family was in town for their annual family reunion and my in-laws were also coming for the ceremony, which was on Sunday.

Saturday my mom had to work, so Nick and I were very busy trying to get the house cleaned up, food prepared, etc. However, Nick always gets bad allergies at my parent's house, so I sent him upstairs to take a Claritin (which was a prescription at that point.) So he did, and shortly after he was just WIPED out. (I know you can all see where this is going.) He was jus really lethargic and kept sitting down and putting his head on the table and falling asleep-- saying things like, "I am sorry, I am just SO tired."

Me, being the very ungracious wife I can be at times, started really getting mad at him. I told him I thought he was being lazy, I was tired too, I was up with the baby at night and he wasn't... I told him how much work we still had to do, how it was his kid too so he had to help out... (I know I can be a little *eh hem* overbearing at times... but that's a discussion for another day-- at least I admit it. :)

Well the next morning Nick was still having allergy problems so he went up to take another allergy pill. This is what I hear coming from upstairs... "What happened to all my allergy medicine? I know I had more than this... oh crap... Um, Gwenn?"

So I said, "Yes?"

So he said, "I think I know why I was so tired yesterday."

And I said, "Why?"

And he said, "Yeah, I didn't take an allergy pill, I took one of Strom's tranquilizers."

So yeah, brilliant huh? In Nick's defense, they were the same size and color pills and were both in prescription bottles. However, Strom's sedatives were in a GREEN bottle, and Nick's allergy meds were in an orange bottle. (you know, so you don't accidentally take your dog's pills... :)

Anyway, yeah, so that is the dog tanquilizer story. We are just thankful that we don't own a bigger dog-- or who knows what would have happened?!

Wednesday, June 27, 2007

It's been a few days...

So we are trying to settle into "normal," knowing that we really can't do that as a family until Nico is home... soon, soon, soon! :)

It's been a few days since I have posted. (I'm not going to lie-- two kids isn't all that easy.)

Here's the rundown:
Grandad came for a visit on Sunday.
Monday we just pretty much chilled. Grandpa came over and brought us lunch.
Tuesday Josiah had another well baby appointment-- 9 lbs 15.5 oz! (chunky monkey)
Today we are just pretty much chilling as well-- although we are going to Baskin Robbins to order Nia's birthday cake.

Here's some pics since I know that's what pretty much everyone wants to see.


3 out of 4 of my favorite people watching Pollyanna. (Yes, as you can see in the background, my house is a mess... it pretty much always is a mes now... I am just trying to embrace it.)

My very pale daughter holding a uncomfortable-looking Josiah.

Josiah Stephen with Grandad. I think Josiah is going to be a lot like my dad-- just a guess.

A very sleepy mommy.

Chillin' out in front of the seascape.


Chunky monkey J-man in the bath... His umbilical cord hasn't fallen off yet-- gross. (The dr. said it would probably be a while since he had lines through it when he was in the hospital.) Also, the redness across his chest is just from a band aid-- it's not always that red... and the incision always looks so much worse in photos... it's not really that red in person.)


Oh, and I am hoping to have some time later to post the dog tranquilizer story-- I have had multiple requests for it... :) (I LOVE my husband...)

Saturday, June 23, 2007

Check out how great he looks!

From this:
To this:
in less than three weeks!


Okay, so funny story about today--

I had a headache this morning and I asked Nick to get me one of my ibuprofen... (that's what the doctor had recommended I take.) So Nick got one for me. The rest of the morning I could hardly keep my eyes open. I was so tired. I kept apologizing to Nick (since we had a pretty full day of chores on our agenda) and I said, "I just feel like I have been drugged."


Right before I was due to nurse Josiah the next time a thought popped into my head. I asked Nick-- "Are you sure it was the ibuprofen you gave me?" He said, "What else would it be?" And I told him I was feeling so woozy that it just didn't feel right. I asked him to go check the bottle, and sure enough, he had given me the wrong medicine. He had given me Ambifed left over from when he had a sinus infection. (In his defense they were in the same kind of bottle and in BOTH of our defenses they were shaped and colored almost identically.) Of course on the bottle there are two separate labels-- one said, "May cause drowsiness." the other said, "May cause dizziness." So I had to call the doctor and ask what to do. Long story short, I had to toss all my milk for the next 6 hours.

You'd think a man who accidentally took a dog tranquilizer the same way would check the label more carefully. I am inspired to clean out all our old medications from our medicine cabinet and (probably more importantly) never ask Nick to grab some medicine for me or the kids anymore...

Friday, June 22, 2007

Josiah's post-op appointment!


Today Josiah went back to Duke for a follow-up with Dr. Lodge, the surgeon who performed his surgery. It went great. He had some blood work done, another chest X-ray, and a follow-up ECG. Everything looked fantastic and Dr. Lodge gave Josiah a clean bill of health. He said, "Treat him like you would treat a normal kid." (Sorry Vivian, that's what he said-- a "normal" kid...)


So, we are. No more pampering... just kidding.

So one of the things I wanted to mention-- I just wanted to thank all of you for making Nia such a priority. It's been great the way you've all just given her such special attention-- it's helped her so much in her big sister transition.

Thursday, June 21, 2007

Reality has set in.





So today I did two things--

1. Went shopping to get some non-maternity clothes that I could actually pull up over my kneecaps,
AND
2. Signed up for Weight Watchers. :)

Nothing will make the baby blues settle in faster than Fluorescent lights and three way mirrors. *sigh*

Other than that things are going pretty well. 2 kids is harder than one-- especially one who is almost 4 years old and pretty self-sufficient. But Josiah is a pretty good baby. He loves to be snuggled.

Tomorrow we go back to Duke for his first follow-up with his surgeon. I expect that things will go well and they will be surprised at how great he's doing. We haven't had to put the feeding tube back in as he's been on full feeds since Monday! Pretty awesome, huh?

Many of you have asked if we have had any more news about Nico... well, it looks like we are probably looking at sometime between the 6th-9th of July. It's not as soon as we had hoped, but at least it's only about two more weeks away.

Well, I know this is a short post, but I have to feed Josiah and then go get ice cream... Weight Watchers starts in the morning and I am thinking of "sandbagging it" for my first post partum weigh-in. :)

Love,
Gwenn

Tuesday, June 19, 2007

Why I can't leave Nia alone in a room with Josiah...



So after I went grocery shopping with the kiddos today (our first REAL outing)-- I came home and put Josiah's carseat carrier on the chair as he was sleeping. I went into the kitchen to put away the groceries and the phone rang. I was on the phone for about 5 minutes or so and I came back into the living room and saw Josiah all dressed up like you see above. Nia had pulled his bed roll out of the pack n' play (by dragging a chair over to the side of it so she could reach), put that up over his head, covered him with a blanket, and decorated him with a pink puffy necklace and umbrella. I came into the living room and saw him and literally laughed out loud. I asked her what she had done to her brother and she said, "I decorated him."

So, yeah, notice Josiah doesn't have a feeding tube. He pulled it out again and considering he has had full feeds for almost two days now, we decided to just leave it out unless we need to put it back in. He looks so much cuter sans the tube.

This little piggy went to market...


One of Nia's favorite things to do is to play "piggies" with Josiah. It's pretty dang cute. She's actually a decent "babysitter." Now before you call social services, let me assure you that we do not leave our children home alone-- (although they clearly are "advanced" :) What I mean is that Nia kept cranky Josiah pacified for probably 25 minutes yesterday when Nick and I were cleaning up and washing dishes, etc. She's a pro at replugging him with the pacifier and even knows how to tap it just right so that he will take it when he's crying.

Yesterday J-man had his first "well baby" check... he was a whopping 9lbs, 5.5 oz... almost back up to his birth weight, but more importantly, 6 oz heavier than when he left the hospital 4 days prior... the doctor was very happy with that weight gain-- and we were too considering all the work that feeding has been.

Speaking of feeding-- I am willing to bet money that Josiah will be off the feeding tube on Friday. (Well, I am not REALLY willing to bet money... my husband is an elder after all...) He's been taking full feeds consistently for about a day and a half now. He is also nursing more often and for longer and just pretty much seems like a "typical" baby. In fact, last night all of us slept through a feeding. I had set the alarm for 11AM instead of 11PM and didn't wake up till 1AM... it was great-- we all got a FOUR HOUR stretch of sleep... my first since Josiah was born. It was a great mistake I hope to replicate soon.

One last thing-- we've heard from a lot of people who are reading the blog and praying for us. First of all, THANK YOU for your prayers-- they are really working and we can feel them. Secondly, might I impose upon you for two specific prayer requests--

1- Nico. We should get a firm "date" this week (probably) as to when he will be home... maybe as soon as one week from today??? That's so surreal... I am so excited. Please just pray for all the logistics with getting home home and ....

2- Continued progress with the transition of more than one kid. I still haven't been able to figure out how to get anywhere on time, and Nick has yet to complete a FULL day of work- though he's getting there. Obviously he's going to have to step back a little bit again when Nico gets home, so please just pray that we can quickly find a new "norm" for our family that works.

Thank for caring about us.

We love you,
Gwenn

PS- One last thing... I haven't forgotten to thank all of you for all you've done for us... I have an ever-growing list of notes to write... we've appreciated (and continue to appreciate) all that has been done/given on our behalf. It may be NEXT summer by the time all our thank you's are written, but know that we are thankful and do hope we can find a way to thank you all appropriately, though we know we can never repay you all for all you've done for us... xoxo

Sunday, June 17, 2007

pics...







Okay, I decided just to do a post of pics from today since there were several I wanted to share...

There are several very similar pics here, but I just wanted to prove that babies this young DO smile! Josiah smiles ALL the time... Most of these are just the beginning or ending of a smile, but he gives us the big gummy smiles on a very regular basis.

A day of firsts for little J-man

Happy Father's Day to all the dads out there!

Nick's Father's Day probably left a little to be desired... The 3 AM feeding was terrible last night and Josiah was super cranky afterwards-- I had a meltdown because I was so tired so Nick took the baby downstairs and took over. He woke me up to pump a few times but let me sleep in until 8:30ish... it was fantastic (for me at least.) While I was sleeping Nick took care of feedings, washed bottles, sorted laundry... I told him that if he could lactate he wouldn't even need me around. :)

We went to church and Josiah was very popular. It was so neat to talk to so many people who had been praying for him.

After church we came home and Nick's parents came over-- and brought Strom (our dog) who LOVES Josiah. Josiah seems to like Strom too. Grandpa Ken held Josiah for the first time... Josiah really seemed comfortable with him.

Josiah has had a bunch of full feedings today, leading up to believe that he won't be on the tube for much longer. That's pretty exciting for us. The tube is the last thing that needs to come out before Josiah is just totally a "typical" kid. (I almost used the word "normal" but our social worker Vivian told us not to refer to our children as abnormal. :)

(BTW- I am aware that I over use smiley faces... :)

Okay, I have to go change a diaper-- it's Father's Day so I don't feel right "passing the butt" to Nick. I will download some pics later.

Saturday, June 16, 2007

For Nia the honeymoon is over... :)

So yeah, Nia still loves her brother (too much in fact-- she SMOTHERS him with love) but she's starting to realize that she's not the center of the universe. She can go from happy and giggly to screeching drama queen in about .3 nanoseconds. If it weren't so pathetic it would be comical. :)

Josiah is still a joy. He is definitely developing his "cranky" times, which (unfortunately) coincide with MY cranky times. But hey, after all he's been through, I am going to give him a pass.

He had his first FULL feeding today from a bottle. (Just 7 more to go each day on a regular basis and he can get off the tube....)

I took the kids out for our first "outing" today-- we went to visit Nick and Jat at the NEW Horizon Performance office. They were busy moving in and putting furniture together so we brought them lunch and checked out their new digs. It's great.

Well, not really much else new is happening. Life is pretty boring (thankfully) since we've been home.

Friday, June 15, 2007

*sigh* I love being home...








I just have to say that today was so great. I LOVE being home.



Also, got good news today-- Nico HAS his passport. We will know probably next week for sure the date of his homecoming! I am seriously giddy about this. I LOVE being a mother. :)


Home again, Home again, Jiggety jig...

We LOVE our home. It's so great to be here even if it is a mess... but seriously, if that's our biggest concern that's not a big deal is it? Thanks to everyone for the huge "welcome home" banner... it makes us smile every time we see it... we are going to keep it up for a while, because I am just so encouraged that we are home, and it's great to remember all the people we have pulling for us.

I wish we could post a few pictures, but somehow we lost our camera in the transition from hospital to home. We do have a "backup" camera, but it doesn't always work very well-- even so, I should be able to get some new pics posted either today or tomorrow. If the camera doesn't turn up in a few days we will just get a new one so that we can keep you all in the loop with photos once Nico gets home too.

Josiah had a great night. Nick and I were exhausted during feeds, but it all worked out. He's actually doing really, really well. He's taking more via mouth since he's been home and less via the tube. I'd LOVE to be done with that by the time Nico gets home, but if not, that's okay.

Josiah has his first "well baby" doctor appointment with his regular pediatrician on Monday... I never thought I'd get so weepy thinking about him being a "well baby." My cup truely overflows...

Nia is fantastic. SHe's a little fragile emotionally right now, but she's not at all jealous of Josiah. It's hard to say if it's all the transitions that are a bit of a challenge for her or if it's the fact that she's been with grandparents for 2 weeks now and is not used to hearing the word "no." :) (And of course, that's as it should be... ) She loves her brother like crazy cakes.

Okay, speaking of Nia-- I am going to get off this computer and go spend some time with her now while Josiah is sleeping...

More later...

-Gwenn

Thursday, June 14, 2007

It's looking like home...


(The sign says, "I'm going home today!")
Well, I think that today is FINALLY the day we get to bring our son home. We are waiting on visits from a few doctors this morning, but everything is looking good. Josiah is off his monitors and other than the feeding tube he's going home with, he only has ONE last line in. (Down from 21 after his surgery.) His last line to go is his PIC line which is basically an IV that has a special tube that goes all the way to his heart. That will go today-- and "the club" will go with it. (That's the board Josiah's arm is taped to in all the pictures-- that just keeps him from bending his arm and kinking the tube.)

We will be back at the hospital for his first follow-up appt. probably next Friday, and we will see his speech therapist and OT as well as lactation at that point too. Right now I have been given "permission" to nurse him twice a day, but they think that once he builds endurance a little more that he will have NO trouble transitioning to being fully breastfed. (Which WORKS for me because I am SO sick of pumping...)

We can't stress how very happy we are with the care Josiah has received here at Duke. His doctors and nurses and therapists have just been amazing to him and to us. We feel so blessed to have this team of people on our side.

I got very emotional last night thinking about our journey. These doctors (specifically his surgeon, Dr. Lodge) LITERALLY saved his life. The cardiologists monitored him so closely that first weekend before his surgery and pulled ALL WEEKEND LONG shifts staying on top of his critical oxygen situation. Without the care he received here and at Rex, our sweet Josiah would have not made it. I can't even breathe when I think about that too long.

I think again about the meaning of his name (which we didn't know ahead of time)-- Josiah, healed by God. And I think of how often I have questioned God in his timing with our adoption and this pregnancy-- and I just can see so clearly now how He has been in it with us all along and has been acting on our behalf for OUR benefit so that our transition with our boys could go as smoothly as possible. I am thankful that Nico didn't come home 3 weeks ago. I don't know how we could have made it through this trying to be here and with him at home... we couldn't have done it. It was because of God's mercy towards us that we've had to wait.

I have been clinging to Psalm 13 for months now...
How long, O LORD ? Will you forget me forever?
How long will you hide your face from me?

2 How long must I wrestle with my thoughts
and every day have sorrow in my heart?
How long will my enemy triumph over me?

3 Look on me and answer, O LORD my God.
Give light to my eyes, or I will sleep in death;

4 my enemy will say, "I have overcome him,"
and my foes will rejoice when I fall.

5 But I trust in your unfailing love;
my heart rejoices in your salvation.

6 I will sing to the LORD,
for he has been good to me.

Just a day before Josiah's birth I read the same passage in the NASB version and the last verse is translated:

6I will sing to the LORD,
Because He has dealt bountifully with me.

And I thought about how true that is. I have been so unhappy with our wait with the adoption and so grumpy about being overdue on my pregnancy, but I couldn't deny that God has dealt bountifully with us. We are surrounded with his bounty everywhere we look.

And now-- drumroll please... I have MORE good news to report. I hate to jinx it, because it's not something that's at all definite, HOWEVER, I am too excited not to share it... We got a call from our social worker yesterday that Nico MAY possibly be coming home as early as June 26. Yes, June 26 of THIS year. Yes, less than TWO weeks. Now, it's NOT definite and may not happen on June 26, however, if it's not then, it will be very shortly afterwards. Pretty cool huh? I was so excited I could hardly sleep last night. It was the first thing on my mind every time I woke up to feed. In just a few short weeks our entire family will be together. How much more bountifully could God deal with us?

I have been updloading pics every day... sorry you have to scroll through so many...
http://picasaweb.google.com/ng.mangine/JosiahAtDuke

Wednesday, June 13, 2007

Woo Hoo!



Guess What???? We are going home TOMORROW! (Lord willing.) The doctor that wanted us to be on full feeds before we went home has said that he thinks it might be longer than he anticipated before Josiah is off his feeding tube, so he is just going to go home on it. We are very comfortable with that.

In other news- he is now off of oxygen. He may still dip down at times, but he's maintaining really good levels that the drs. are happy with.

Okay, that's all for now...

-Gwenn

Tuesday Update—June 12, 2007



Well-- another good news/bad news day.

The good news is that Josiah is doing fantastic and he continues to improve every moment. You would never know that he had open heart surgery a week ago. He’s healing so well and he just is really just a normal baby. He’s continues to improve with his feeds—consistently taking at least 50% via mouth. He’s started breastfeeding and is a total champ, but he’s on a limited nursing schedule because of the energy it expends vs. bottle-feeding… so it’s more pumping for me.

More good news—Nia came home today. It was so good to see her and she LOVES LOVES LOVES her little brother.

The sort of bad news is that Josiah is not coming home for a little bit—probably not until at least the end of the week… it’s kind of a long story, but the bottom line is that his cardiologist wants to get him on full feeds before he comes home. So basically we are just waiting to build endurance.

I have a lot more to say but Nick is leaving for the night and bringing his laptop with him, so I will have to update you more tomorrow.

Monday, June 11, 2007

Josiah Birth Story

I finally had the chance to sit down and type up Josiah's birth story. I thought I would post it in case anyone was interested in the details...

Birth Story of Josiah Stephen

I had a normal pregnancy, however, as I was almost 2 weeks overdue my doctor decided to induce me. I was more than ready as I had been very uncomfortable for some time. I suspected the baby was big—the 2 ultrasounds I had to measure the baby were conflicting. One said he was totally average, one said he was large.

I got the call to come into the hospital to start the induction at 6:01AM on Friday, June 1, thirteen days past my due date. They wanted me there at 7:15-7:30AM. So we hopped out of bed, got my daughter up and dressed and brought her to be dropped off with Nick’s parents.

We arrived at Rex Hospital at 7:18 AM and checked in.

About 8:00 AM things started to get busy. Three women came in— one was doing a mobile check-in, one was putting in my IV and one was playing around with the monitors. We were in room 238 and our nurse’s name was Trisha—she was from NY and she was a riot.

At 8:30AM the woman from the blood bank dropped by as we had decided to donate the cord blood. At 8:31 they started the pitocin.

At 10:10 Dr. Tosky came in intending to break my waters, but instead determined I wasn’t really far enough along. I had regressed from my appointment the week before—was at 2 cm and -3 station.

At 12:22 I decided to have the epidural. I wasn’t in a ton of pain, but the contractions were getting stronger and the nurse said there was no reason to wait as I knew I was going to have one anyway. It really hurt as the epidural went it—much more than last time.

At 1:35PM Dr. Tosky came back and broke my waters. There was meconium in the fluid, so they assured us that the special care team would be there when the baby came out.

By 4:40PM contractions got noticeably stronger. Dr. Tosky checked me again and I was at 6 cm and 80% effaced, but baby was still high.

At 5:15 PM the pain started getting bad (even though I had an epidural my bottom REALLY hurt). They increased the epidural.

5:21 PM- 9+cm and 100% effaced, but again, the baby was still high, so they started me on the “rotisserie” (Turning from left side to right side every 20 mins) to help the baby come down. I started on the left side. Was in a lot of pain.

5:32PM Turned to the right side, got a strong urge to push—was still in A LOT of pain.

5:44PM-- 10 cm, tried pushing but it wasn’t productive just yet because baby was still high and we decided to wait another 20 minutes before pushing.

6:12 PM- It was weird, when I was lying on my side it felt like the baby was about to fall out of me, but when I would turn onto my back the sensation would go away… Have I mentioned I was in a TON of pain? The epidural did NOT work as well as it had during my last delivery. Started pushing though.

6:35 PM Dr. Tosky arrived and I continued pushing. It became apparent that the head wouldn’t come out without an episiotomy so I agreed to one—Trish had been trying to stretch me since the beginning, but he just wouldn’t come out. It was frustrating because my contractions started to slow down and so the baby would make progress during a contraction, but then rock back into the canal between contractions. It was so frustrating, and it really hurt. Once I had the episiotomy the head came out in 2 more contractions, but then the shoulders got stuck. It was very scary. Dr. Tosky kept calling for all sorts of people to come in to assist. He had me pushing and pushing without stopping or waiting for the contractions. Because of the meconium in the fluid the baby needed to be suctioned right away, but since he got stuck he wasn’t able to be.

Finally at 6:50 PM the baby was all the way out. He was 9 lbs, 7.3 oz and 20.9 inches long. His heart rate was 115 and he scored 8 & 9 on the Apgar test. I was so relieved when he was finally out, but then my placenta didn’t come out. Dr. Tosky kept trying to massage my uterus, but it didn’t seem to want to come out. We weren’t able to hold Josiah or anything because of the meconium situation, and the special care team started caring for him as Dr. Tosky started stitching me up. (Nick didn’t get to cut the cord either because it was somewhat of an emergency situation.) In addition to the episiotomy, I had a cervical tear that he had to repair.

The regular nursery came in to give Josiah a bath and realized his breathing wasn’t normal and whisked him off to the special care nursery. We didn’t get an update for a long time, but when we did, the news was not good. Josiah couldn’t breathe on his own for what was (at that point) an unknown reason. They suspected it had to do with getting stuck and aspirating fluid, but they did mention that “worst case” it was a problem with his heart. An hour later they called Nick back to the special care nursery and told him definitively it was a heart problem and that Josiah would have to be transferred to Duke University Hospital. They rolled me back in a wheelchair to see him briefly while we awaited the cardiologist’s report. It was before he left Rex that we had the diagnosis—“Transposition of the Great Arteries” and learned that he would need open-heart surgery soon.

At about 1:00AM Josiah was finally transferred to Duke.

Monday morning- June 11

We had a GREAT night. Josiah slept all night long and we had to wake him up for feeds. (Well, we TRIED to wake him up for feeds.) Last night I just prayed and asked God for His mercy on this one-- because I was so tired. It was really nice to be able to sleep-- what a difference it makes in our outlook.

I don't really know what's on tap for today-- they did say they are going to put him on a special machine that may help get him off of oxygen. I had mentioned before that he's really on VERY little oxygen, however, he doesn't do well when they turn it off. So one of the things they suspect is that it's not actually the oxygen he is needing but the pressure of the oxygen being forced into his nose that is helping him to breathe. So they will check that today.

Josiah's incision infection seems to be getting better. I still think it looks gross, but the doctor thinks it's looking good.

Feeds are going pretty well. Since they have upped his volumes (almost doubled it!) he's not taking complete feeds for the most part, but he's doing pretty well still. We're pretty sure he will have to go home with a NG tube, but we are okay with that. He's still losing weight as of yesterday-- (he's down to 8 lbs, 10 oz... so it's good that he started as a chunky monkey.) We are just really ready to go home. Before the surgery they told us that recovery would probably be 7-10 days. Well, today is 7 days since surgery and they keep telling us that we should be going home "any day now" or "withing a day or two."

Oh, one thing I wanted to mention-- THANK YOU for all of your emails. I am sorry that we've not been able to respond personally to all of them right now. The wireless here is awful, and we just haven't had time. But know that we are trying to check email every day and we appreciate all of the support.

Sunday, June 10, 2007

Sunday PM



Sorry we haven't updated in a while... it's been CRAZY.

Remember when I said Josiah was a really chilled out, mellow kid? Yeah. Not so much anymore. Maybe that was just residual morphine working out of his system??? He fussed and cried all night long, and much of today. (Check out the video to hear his wailing...)

Healthwise though things are good. I think they are going to try to work on the oxygen thing tomorrow... see if they can start to wean him off of it.

He's feeding pretty good. They have increased his feeds dramatically. (Nearly doubled it today.) So even though this has meant we've had to use the feeding tube MORE to get his milk in, he's actually taking more by mouth, so that's encouraging. They are training us to use the NG tube for home use. (This is a tube that goes through his nose down into his stomach.) I had to insert one today with the nurse supervising. That was NOT the best part of my day.
I didn't get it on the first try and made him bleed-- that was no fun. But the second try worked well and now I feel more confident that I can do it. Nick has to prove he can do it too before they will send him home with it in. I don't actually mind using the tube for feeds and medicine-- I am just not looking forward to having to put it in. (They can stay in for 5 days at a time though-- if he doesn't pull it out that is-- so I shouldn't have to do it too many times.)

Today we have been trying to take it very easy. We haven't had any visitors and have tried to rest since we didn't really sleep last night. Nick went home for a few hours to rest and do some laundry and I was able to rest(ish) here.

Let's see what else can I tell you? Oh, Nick and I left the hospital yesterday together for about 2 hours and went to the mall. That was really nice. Nick's parents came to stay with the baby. It was weird to be walking around the mall and just see "normal" life happening. I can't really explain what I am talking about -- but I guess after being at the hospital for the past week has just changed our view of "reality" so much.

Nia's coming home to us on Tuesday. We miss her a lot. We are hoping Josiah will be let out very soon and that we can all be back together again. Poor girl has been a trooper through all of this. She's had to just kind of go with the flow and she really has. Thanks Ken + Bev, Deena, Mom + Dad, Gretchen + Jon... I don't know WHAT we would have done without you guys helping us with her.

Today Nick and I have been trying to just examine how our lives have changed because of this, and try to predict ways our lives will be changed in the future. This is definitely the scariest time in our lives thus far. And we've had no choice but to trust that God somehow has the best for us in all of this. We don't really understand all the "whys", but we are starting to see purpose behind some of this. I hope that we sometime get the chance to tell you more about that... but right now I have to go.. You'd think we have nothing to do but sit around all day, but we are actually busy most of the time with the doctors and nurses and lab techs coming in ALL THE TIME. It's always time for another blood draw, medication dose, feeding, pumping, speech or OT coming to observe him eating, changing a poopy diaper, changing his dressing... etc... there's just always something going on.

Okay, I got to go now... I WILL post more tomorrow.

Love you...

-Gwenn

Saturday, June 9, 2007

Saturday Morning-- June 9



Little by little things are getting better with Josiah! He got one of his two remaining IV lines out last night. He had a good night last night—wasn’t up ALL night long. I have found that I enjoy the whole new mom thing very much, except I usually sort of hit the wall during one of the night feedings and just feel like I can’t do it anymore. Nick has been very helpful during these times. He’s a really good dad and is always ready to jump in and change a diaper—usually without even being asked! (Woo Hoo Nick!)


Right now Josiah is down getting a chest x-ray to see how things are progressing with the fluid in his lungs. This morning the doctor said they sounded great, so we're hoping the x-ray will say the same thing.

They have PROMISED me that I am meeting with lactation today to work on breastfeeding. He is slowly but surely increasing the amount he’s taking by mouth. Last night at one of his feedings he actually ate the WHOLE amount by mouth—I couldn’t believe it. And this morning we did a feed where he had all but ¼ of it by mouth… he’s getting there. I am VERY motivated to work on it as I don’t want to take him home with a feeding tube.

One thing he can’t seem to do is get off the oxygen. They tried again last night while we were all sleeping. (That was news to me… I slept through the whole thing.) He’s only on .1 liters of oxygen, but whenever they take it off his oxygen saturations dip by about 15%... it’s weird, but not really uncommon with cardiac patients. The doctor did say that they wouldn’t send him home until he’s off oxygen though—which is good for me, because I think I would always be worried about it.

His skin abscess (from his incision) still looks gross, but they are treating it pretty aggressively with antibiotics so they don’t expect it to become a problem. He will likely get his stitches out today. (His main incision isn’t stitched, it is glued. But where his chest tubes went in and his pacing lines went in he has to have stitches taken out.)

We are really more and more in love with this kid every moment of the day. He’s a very agreeable baby. Gentle and quiet for the most part, but he will wail when he’s not happy about something. And it’s pretty sweet, during the night when he’s awake (and we are not) he will just quietly cry and fuss until you go over and just let him know you are there. I can reach my hand from my bed to his bassinet and I just put it on his chest and tell him I am there and that’s usually enough to calm him down. It’s pretty endearing.

We had a few more visitors last night—Kris and Chelsea Loomis and Deena. It was really great to see them and just get to share our lives with people again. (Pics of their visit are posted…) Deena asked us how we’ve changed since all this has happened… I thought of several things immediately, but I continue to think of new answers to this question.

My first answer is that it has made me so much more “able” to receive help and service from others. I know I keep saying this, but this is just something we could not have gotten through on our own. Our friends and family have just stepped up in HUGE ways to help us. We’ve seen so many people sacrifice so much to help us and it’s just overwhelming because I know it’s something I can never repay. But I guess that part of being a friend and being a member of a family is just accepting that kind of help with a thankful and humble heart. (Something I have previously been no good at.) So thank you again, friends, for all you have done and helping me with this.

I have other things I want to say but I will save the thoughts for another time since this has already gotten kind of long.

Much love to you all…

Gwenn

Friday, June 8, 2007

Well, today was definitely different than any other day with Josiah so far. It was a good day for the most part, but I was EXHAUSTED this afternoon after not sleeping much last night—ah, the joys of a new baby. It’s not that he doesn’t sleep at all, it’s just that he doesn’t sleep at all during the night. He’s been sleeping heavily all afternoon, of course! He’s officially one week old as of just a few minutes ago.

Here are some of the things that happened today:

-They tried to take him off supplemental oxygen completely (twice), but he didn’t really like it and his saturations were too low, so they had to put him on just a tiny, tiny bit. Not a big deal, but something we’d like to see him off of before he goes home.

-We’ve been working more on eating. He actually didn’t do as well this morning as he did last night, but I am pretty sure that’s because he was pretty drowsy today. They did a “swallow study” on him to make sure that everything is going down the right tube—pics of it online. (Everything is going down the right tube just fine.) He’s doing better this afternoon though, so I hope he continues to improve overnight. They will send us home with a feeding tube if they have to, but I would REALLY prefer it if he could just eat on his own.

-Speaking of his feeding tube, he pulled it all the way out today. Remember in my last post when I said he was really strong. Well, yeah. He is. He hooked his IV line on his nose tube and pulled it all the way out. The nurse came in and showed us how to reinsert it in case he goes home with it and we have to do it at home.

- His chest incision is getting a little infected because his chin is in constant contact with it. It’s pretty gross. They are changing the dressing twice a day and have put him on antibiotics… did I mention it’s pretty gross? Blech.

=-We had some visitors today. Kris, Kelsey and Courtney came by and brought us lunch and dessert from Foster’s Market—it was SO delicious. Definitely the best meal since we’ve been here. Jason Gilliam came by as well as Nick’s parents. It was really fun to be able to have visitors and actually be able to let them see our son.

- The doctors are very impressed with his progress. He *may* go home this weekend or early next week if not. Pretty cool huh?

Again, I just have to say how very blessed we are to have you all as our friends. Thank you for all the ways you are supporting us through this time. We love you.

http://picasaweb.google.com/ng.mangine/JosiahAtDuke

Good morning!

Well, yes. Like Nick said yesterday—we are new parents again… finally. It is SO great to be out of the PICU. We are in a regular room. There’s a bed in here for me and a pullout chair for Nick. It’s pretty great.

Josiah is doing really, really well. We had great feeds last night. Over 50% of his food is coming through the bottle—the rest goes in through his tube… but it’s all breast milk so however it gets in, I am just glad he’s eating. I think we may get to try actual breastfeeding today. He’s been put on an every 3 hour feeding schedule. I am on an every 3 hour pumping schedule, so I am either feeding or pumping for about an hour out of every three around the clock, so I am actually pretty tired. I will be so glad when he’s finally nursing and I can consolidate the two. But at least I have a bed in here so I can sleep some. Nick took one of the feedings last night, so that helped a lot.

This kid is STRONG. He’s very strong and he’s always trying to wiggle out of his wires and pull out his tubes… I think he’s telling us he’s ready to come home. He got to wear his first outfit yesterday—a little John Deere sleeper. Speaking of sleepers, in Josiah’s case it should be called a “WIDE AWAKER.” He’s got an amazing capacity to be awake, especially at night. Aren’t newborns supposed to sleep all the time? I am just glad to be with him… even if he’s not sleeping. I never have been happier to change diapers in my life!

Thursday, June 7, 2007


And we're finally allowed to be parents... here's Josiah's first outfit. (Notice the wires coming out of his leg)
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Just letting everyone know that we've moved out of the PICU and into a "normal" room.
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Thursday AM update-- June 7



Okay, so Josiah has the longest toes in the world-- little monkey toes...

As we were driving into Duke this morning I had a sick feeling in my stomach and I realized how much I HATE coming in in the mornings, because I just don't know what they are going to tell me... I sort of feel like I have to brace myself in case there is bad news. Once I am here, I can deal with the situation better, even if it is bad news.

Today was a good news/bad news morning. The good news is that his left lung re-inflated. The bad news is that part of his RIGHT lung has now collapsed. This kid is SO grounded when he's better. :) Again though, it's not much of a concern and he's doing well in pretty much every other area, so he will be moving to a regular room (and out of the PICU) sometime today. YAY! (That is unless, of course, something else changes... I have learned to not get "too attached" to any plan I hear, because it's likely it will change.)

So something I thought was really encouraging this morning... I got an email from my friend Courtney Scholl... Here it is:

Nick and Gwenn,
I was looking through a book last night with Tatum and we came across the name Josiah. It is listed as a Hebrew name with the meaning of “healed by God”. I just wanted to share it with you.

~Courtney

After I boo hooed about this for a while, Nick told me that a few days ago our sister in law Kristi had sent us a message saying the same thing. (I don't know how I missed it!) Nick and I had the realization this morning that Josiah IS healed. His heart is pumping on it's own-- and very well at that. All we are waiting on is his recovery. I think for the past few days I have been asking God to heal Josiah and I just realized this morning that he is already healed.

When you are sitting in the PICU everyday for hours on end with parents who have been here for MONTHS, you realize what an amazing story Josiah has. Praise God through whom ALL blessings flow.

Okay, one last thing-- a funny story from the PICU... Nick got kicked out yesterday. Seriously. He got kicked out of the PICU for falling asleep with the baby in his arms. What a hooligan.

More pics posted-- mostly of Josiah getting his OP and Speech Therapy... (Pretty funny that a 6 day old gets Speech therapy, huh?)

Wednesday, June 6, 2007

Wednesday PM update-- June 6



Today has been pretty good. Josiah is looking great, but we did get some sort of bad news... his left lung partially collapsed overnight at some point. They were hoping that throughout today it would reinflate, but it hasn't. It has gotten marginally better, but if it's not totally better in the morning they are going to have to put a tube in his lung to drain it. The doctors stressed over and over that this is not a huge deal, but it's still sort of a bummer. They are actually very pleased with his progress. We tried to give him a bottle of breastmilk today but he wasn't too interested. They did say I could try to breastfeed in the morning, so I hope that works out.

My sister and her husband came to visit today-- Nia is going home with them in the morning... so I have to go get her packed up. We will post more in the morning.

Until then, we'd love your prayers for:
- Josiah's lung to reinflate
- That feeding would go well in the morning
- That we could have the energy and endurance to keep going -- it's getting pretty tiring.

Thanks again for your visits, your prayers, your cards, the money, the food, the babysitting... the list is truly endless. Nick said to me tonight, "I don't know HOW we could get through this without our friends..."

As usual, a few more pics (and an adorable video!) are posted here:
http://picasaweb.google.com/ng.mangine/JosiahAtDuke

Wednesday AM- June 6




Gwenn here. Well, I (for one) am very anxious to see Josiah today. He continues to do really, really well.

My in laws relieved Nick yesterday evening, and then my mom and Jenny went to relieve her later on during the night. I am SO jealous that they got to spend such good time with him-- you will see in the pics how great he looks! (I am just kidding about being jealous-- it's the good kind of jealous, not the bad kind... :)

They have now taken out almost all of his tubes and wires. They've really cleaned him up, changed his dressings, and his swelling has gone down tremendously. He looks like a different kid.

They said we can hold him as soon as we get there this morning... woo hoo! He *may* even move out of ICU into a "step down" room today-- that's sort of an intermediate step between ICU and a regular room. The great thing about that would be that there is a BED in there that we can sleep in (there's no sleeping allowed in the PICU.) It would probably mean that we are spending more time at the hospital though since there's not a nurse in the room at all times. Nia is going to go out to Manteo with my mom later on this week so that Nick and I can be free to just "live" in his room if needs be. If I am able to breastfeed I will basically need to be there most of the time anyway.

Speaking of breastfeeding, could you please keep me in your prayers? I am starting to have a harder time physically with my recovery from the birth, and I am having a real hard time with a clogged milk duct that's causing quite a bit of pain. Thank you.

There's not much else to report. We know he had a good night, and once we actually see him we will update you more!

Tuesday, June 5, 2007

Tuesday PM update- June 5

Nick just got home from the hospital-- it's been a GREAT day for Josiah.

Throughout the day Josiah got out his chest tubes out as well as getting off the ventilator. He's now breathing on his own (with just a tiny, tiny bit of extra oxygen via a nose tube), and his heart is totally beating on it's own. He seems to be very alert. While you will see he's very puffy, he's looking GREAT. I posted a few more pictures on the blog as well as one short video. Just a quick FYI-- While the really scary-looking tubes are out and I don't think he looks too awful, you may want to preview them before looking at them around children, as they might be kind of scary to a child. (Nia didn't seem to be bothered...)

Nick is pretty tired and I am sure he will sleep well tonight. I was able to rest for a long time this afternoon and I am feeling pretty good. My mom took good care of me. :) And actually, she's just putting dinner on the table, so I have to go!

Tuesday morning update-- June 5



Hello everyone... Gwenn here.

I am doing this morning's update! :) Josiah had a good night. He really didn't have any complications. There was a little bit of "tweaking" medications and things like that, but it was not really a big deal. He woke up at about 2AM and has been awake on and off since. He's on a lot of pain medication (as you can imagine) so he's comfortable.

It was very upsetting for me to see him after his surgery. We knew what to expect-- we had been taken in to see a post-op baby a day or two prior, but it was so different because it was MY baby... know what I mean?

I am not going to post a picture because I think it's too upsetting, but he has:
- 3 chest tubes
- a ventilator
- 4 IV's + one PIC line
- an oxygen monitor (I can't remember what it's called)
- 2 temperature monitors (one for internal, one for skin)
- 3 pacemaker wires
- a catheter
- 3 stick on respiration sensors

Nick and I are doing fairly well. I have been really hanging in there, but last night I finally hit the wall. I just FINALLY broke down and realized I need to slow down a little more. Now that the surgery is over and he seems to be doing well, I think it will finally be possible. We got a room at the hotel across the street last night and came over here to sleep for a while. No one is allowed to visit the PICU between 7-9:30AM as doctors are doing their rounds, so Nick and I came back here to sleep, pump, check email, etc... We will head back at 9:30. Nick is going to stay here today, and I am going to go home for the afternoon. My mom is in town, so I am going to have her take care of me and Nia today. :)

One bit of news that made me happy this morning... One of the things I was really sad about was that I haven't been able to breastfeed Josiah. I have been pumping like a mad woman, but he's only actually eaten 4 times in his short life (from a bottle obviously), the rest has been through an IV tube. They are putting a feeding tube in him probably today or tomorrow (which will go through his nose down to his stomach) and they will give him breast milk in that... BUT, the good thing is that once he's ready to actually eat again, the nurse thinks he will be able to breastfeed fairly easily. He's not attached to a bottle so as he's "learning" how to eat for himself, he can learn by breastfeeding. I know it probably seems like a small thing, but I really want to nurse him, so I was glad to know that they think it will be not only possible, but likely.

Anyway, I am going to go catch a few winks before we have to go back. I posted a few more pics here of Josiah yesterday right before going into surgery. The nurse had him all wrapped up and you couldn't even see any tubes or wires... I love these pics because he just looks like a normal baby...

http://picasaweb.google.com/ng.mangine/JosiahAtDuke


More later-- thanks for reading!

Monday, June 4, 2007

Sorry for the interruption, he's now out of surgery (you're getting this news as fast as I am).

Josiah went in about 1pm, the operation wrapped up about 5. His lungs and heart have started back up (they are stopped during the operation) and that is the biggest hurdle. There are still a lot of things to get past over the next couple of days though, so please keep praying.

So back to why he went in...

Basically, because Josiah was now stuck in the PICU until surgery (because of his new medicine) any reason to delay the surgery was now gone. The schedule worked out for him to go in this afternoon. This is was not a emergency procedure in any way, just a surprise.

We've got some more pictures uploaded at http://picasaweb.google.com/ng.mangine/JosiahAtDuke
So, surprise, surprise, Josiah is having heart surgery as I write.

We came in this morning and found out that the decision had been made for Josiah to have surgery this afternoon. It took us completely by surprise, but it's a good thing.

Basically, because Josiah was now stuck in the PICU until surgery (because of his new medicine) any reason---

Sunday, June 3, 2007

Sunday, 11 PM ish


Everything is looking good. They gave Josiah the medicine to reopen the duct between the two sides of his heart and he immediately perked up. I was able to go in for a moment afterwards and thought "oh, that dark skin complexion was actually blue!"


He's looking better than he ever has, and he seems to be stabilized at an acceptable oxygen level. (Thank you Jesus!)

We are holding up well too-- Gwenn is recovering well and feeling better hour by hour.

We just picked Nia up from Deena's house (thank you Deena for watching her an EXTRA FOUR HOURS!) She was OUT. It's funny, we've been so worried that she's "suffering" without time with us, and really she's having time of her life. (I think we tend to overestimate our importance at times :)

We continue to be overwhelmed with support, love, encouragement and provision by our friends and family. Thank you so very much... we can FEEL your love and prayers. While this certainly is not easy, we are coping very well at this point-- and we know it's because of all of you. We can never repay you or thank you adequately... Please know how grateful we are.

Sunday, June 3 update-- 5:15PM


Today has been an up and down day.

When we left last night we were very encouraged by results we were seeing from the procedure he had had to widen the hole in his heart. However, when we got here this morning, we learned that his oxygen levels have slowly declined all night and continued to drop all day.

He had left the PICU and was moved to a "step down" room, but since his levels kept going down they had to move him back because they are trying a new procedure to help raise his oxygen levels. So, starting in just a few minutes they are going to be putting a "pic" in him (which is like a really long IV that goes from his foot to his heart) and they will give him proglastins which should open a duct between the two sides of his heart. This duct usually closes shortly sometime after birth and they will be giving him this medicine to help open it back up. (His is not all the way closed yet.) We are hoping this works to stabilize him for a few days so that he can have a few more days until his surgery. We still aren't sure when he will have his surgery... but the doctor has said that it will be some time this week.

Please continue to keep Josiah in your prayers. Please pray that his oxygen levels will rise and stabilize.

We've finally got some pictures up. You can see them at http://picasaweb.google.com/ng.mangine/JosiahAtDuke