Four weeks old...a bit late

Sorry it's been so long since our last post. We've been in the hospital and I just haven't had the energy to update you all. We were discharged this morning though...thank goodness!! Joshua is being treated for a yeast infection near the insertion site on his leg. Thankfully it wasn't anything more serious. Friday and Saturday night we stayed with Josh in the hospital. What an experience! I slept in Joshua's crib with him while Ben slept in the chair that pulls out into a bed (which also doubles as a torture device). Of course, after our second 5 day admission to the hospital, I'm pretty sure that hospitals in general are torture devices. There's nowhere to get comfortable, just when you fall asleep the doctors/nurses have to come in and poke, prod, take temperatures, give medicine, or draw blood, and the food...don't even get me started on that! Thankfully, Joshua is a trooper and has maintained his pleasant nature throughout his stays here. Unfortunately we can't say the same about his mother. :( I finally reached the point that I refused to let them take his vitals because they kept waking him up when I had just got him down. I'm sure they deal with cranky parents all the time though, and they just accepted it and let me call them when I was ready for them. I'm so thankful that his nurses were wonderful (for the most part) and that they respected our wishes as his parents.


Ok...on to the good stuff. Joshua turned four weeks old on Friday! At weigh in this morning, he was 9 lbs, 6 oz. Maybe this massive pound a week growth spurt is starting to slow down. He is so much more alert than ever before and he just loves to stare at everything. He is unbelieveably strong and tries to sit up when he's laying down. He will pull himself into a sitting position if you let him hang on to your fingers when he's on his back. He also loves tummy time and will hold his head up for a really long time when he's on his tummy or when he's on your shoulder. I'm constantly amazed at how strong he is and how much he's growing and changing. He is quite the cuddlebug as well, and just loves to be held all the time. Of course, it's not hard when you have this little face looking at you while you hold him!

Hopefully posting will be more regular from now on as we will be home. Let's hope we don't have to see the hospital again for quite a while! For now, I'm going to go take a shower and a little nap with my son. We're all exhausted.

When it rains, it pours!

Wanna hear a funny joke? Ready for it? Ok...here it is...we found out on Friday that we have to move. AGAIN. Ok, so it's not really funny and it's definitely not a joke. Our landlord is being transfered back from St. Louis and there is a clause in our lease that if her job moves her back, she can terminate the lease. So she is terminating our lease and wants to move back in at the end of June. So keep it in prayer and we'll keep you updated on where we'll be moving to next. Maybe we should start our own moving company. I mean, this will be our sixth move in the four years we've been married. We're getting really good at it. :)

The other thing that's happening now is that Joshua is back in the hospital. It's not serious, it's just a precaution because his doctor is so conservative. I noticed some redness & draining around the central line insertion site on his leg and asked his doctor about it today. In order to be safe rather than sorry, Dr. Keim admitted Josh to start a round of antibiotics to kill any infection that may be starting. If they find out that there is no infection and it was just skin irritation, they'll stop the antibiotics and send him home. If they find out that there is an infection, he will still be sent home and we'll just have to add the antibiotic treatments to his antiviral treatment. Either way, we should be home in a few days.

Ending on a good note is always a good thing. So here we go...Joshua weighed in at 9 lbs, 4 oz today at the hospital. Holy moses! Apparently he puts on weight like his mama...just by thinking about food. :) He is awake more and more of the day and loves to stare out the window or look at you while you talk to him. He is such a blessing!

Three Weeks Old!

How is it possible that our little boy is three weeks old already?! Of course, it feels impossible that he's been here only three weeks too. I feel like I've always known his face and I can't quite remember what we ever did without him. I do remember something about sleeping and eating warm meals, but sacrificing those for Joshua is totally worth it. :) He's changed so much already in these three short weeks. He's a strong little one and loves to lay on his tummy and push up on his arms to look around. He holds his pacifier in his mouth by himself too! He's found his voice and the little kitten-like cry is a thing of the past. He's not afraid to voice his opinion and does so with ear piercing screams. His angry cry is super sharp and loud and his whole face goes red when he yells. His outbursts are short lived though...and once he makes himself heard, he calms down and stops crying. He is wide awake between 9-11pm and then again around 2am. It makes for lots of one on one time with mommy between feedings and we have lots of deep conversations. Unfortunately, his medication is giving him lots of gas and there are lots of screams at night which wake daddy up quickly. Poor Ben jumps into action right away when that happens, using the magic "shh, shh, shh" noise and walking Josh around the room if need be. Fatigue has set in deeply for Ben. Deeply enough that the other night when I woke Ben to ask for some help with Josh he replied, "I'm kind of sleeping here, Jamie." I laughed for quite a while over that and we both got a good laugh out of that the next morning when I told Ben what he had said.

Joshua had a follow up doctor's appointment on Wednesday and the doctor was very impressed with him. He weighed in at a whopping 8 lbs, 11 oz on the old fashioned weighted scale with the slider bars...you know what I'm talking about. In disbelief, I asked that they weigh him on the digital scale because that one must be way off. I mean, he weighed 7 lbs, 9 oz in the hospital on Thursday night. There's no way he gained over a pound in that short amount of time! So we weighed him on the digital scale and it turns out I was right. But not by much! The digital scale registered 8 lbs, 7 oz (50th percentile). The nurse asked if he we were supplementing with formula and when I told her that we weren't, her eyes got wide and she said, "Way to go, mom!" So yay for me! Joshua is now 21 inches long (50th percentile) and his head is measuring 13 3/4 inches (25th percentile!!). He is really perfect.

The best is yet to come!

Today is our fourth anniversary! We had a little family outing to a restaurant to celebrate and Joshua was so good. He just looked around while we ate and eventually fell asleep. It was nice to do something to mark the occasion.

In the past four years I've watched Ben finish his degree, graduate, work tirelessly, provide for me constantly and sacrifice for our future. We've laughed, cried, yelled and been silent together. We've traveled all over the U.S., traveled to the Caribbean, and planned future travels all over the world. Of all the things we've done together, however, Joshua is by far the best. Watching my husband hold our baby is an amazing feeling. It makes my heart smile to watch Ben rush to pick up Joshua when he comes home from work at night or hear him comfort Josh with endless patience when Joshua is in crying out in pain or frustration. Ben is an amazing father and an even more amazing man.

My prayer for Joshua is that he follows in his father's footsteps and grows into an intelligent, strong man. A man of honor and integrity. I hope that his smile will light up a room the way his father's does and that he will be as loved and respected as Ben is. I want Josh to emulate his father's determination and work ethic. And hopefully someday Joshua and his wife will be celebrating their anniversary and she will feel exactly like I do - so very thankful that she has the privilege of sharing her life each and every day with such a wonderful man.

Ask and you shall receive...

Aunt Jodi asked for "more pictures, please"...so here you go!

I know that many of you are wondering how we're giving Joshua his medicine. Well, this is how. He gets two doses a day, one at 9am and one at 9pm. The medicine is all contained in the ball and the tubing is connected to it. The little green circle with '50' on it is a filter to get rid of any air bubbles or impurities that may be in the meds. Basically, we have to flush the central line with saline, then hook this up to the port, let it infuse for an hour, disconnect the ball (which totally deflates when the medicine is no longer in it), flush the line with saline again and then flush the line with heparin. Pretty easy, huh? A home healthcare nurse will come twice a week to make sure everything is ok and to do bloodwork that she will then submit to his doctor to make sure his blood count is good and he's tolerating the medicine.

Now, for what you really want. The latest pictures of our beautiful, perfect little boy. :)

Ok, this is not the best picture of Josh, but I am posting it to show off his cheeks. Go ahead...look at those cheeks and just try not to kiss the screen. I dare you.

Two Weeks Old!

We got an unexpected gift today to mark Joshua's two weeks on this earth...

WE GOT TO BRING JOSHUA HOME!!

That's right, I am watching my son sleep peacefully in his pack'n'play in the comfort of our own living room. We are so, so, so blessed. We knew that there was a possibility that we could come home early, but I had no idea that it might be this early. Around 2pm we found out that we were being discharged tonight and the mad scramble began. We have a home healthcare service in place to come twice a week to check on Joshua's Broviac line (the central line in his leg) and to draw blood to make sure that all is going according to plan. We also have a pharmacutical company that will deliver his medicine to us so that we can administer it on a daily basis. We have all sorts of follow up appointments with all the specialists as well to make sure that Josh continues to thrive as he's doing now. It's amazing what can happen with enough prayer and with enough doctors working toward the same goal.

So let's go back a bit and we'll recap all of the different doctors findings so far. On Wednesday, the neurologist looked Josh over and showed me the CT scans and explained what the worst case scenario could be. Worst case would include seizures and cerebal palsy. He did say that Joshua looks good for now and that we have about a 50/50 shot at ending up with CP and a 25% chance of having seizures. I'll take those odds!! The occupational therapist that saw Joshua on Thursday said that he really looks good and that he is doing exactly what he's supposed to be doing. She gave us some stuff to work on at home with him, but all in all he's perfect. Today, the rehabilitation doctor came to look at him and said that if Joshua does develop CP, it will likely only manifest in something as simple as an uneven gait (he might walk a little funny). That was such a relief to me! He had a more intensive hearing test done today as well but we don't have the results of that back yet. Basically, everyone who sees him says that physically, he's perfect. So now we wait to see about the mental component.

Thank you, thank you, thank you for your prayers! I don't think Joshua would be doing as well as he is if he weren't completely covered in prayer. We love you all and can't wait to introduce Joshua to you!!

Updates...

God is so good! He has given us family and friends who are unbelievably supportive and who love us so much. I am so touched by the outpouring of love and support for Joshua, Ben and me during this time. Thank you from the bottom of our hearts. Knowing that we are so supported in prayer is making this time so much easier for us. Everyone is asking what they can do. Honestly, the best thing you can do for us is be on your knees in prayer. I am so thankful that God has orchestrated this so beautifully. We are at the best hospital with the best doctors in Northern Virginia. We are able to pay the bills with only Ben working so I am free to be with Joshua all day. We have friends locally who are supporting us with their love, and family who is coming to stay to help us out (my mom is arriving today and will be staying for at least a week, and my sister and her husband will be up on Thursday to stay for the weekend). Aren't God's blessings amazing?!

Yesterday was a long day for Josh. He had surgery scheduled for 12:30pm today to insert a central line to make it easier for them to give him his medicine. This way they don't have to stick him as often or change an IV. He was NPO (allowed nothing to eat) from 6am on and his last feeding was at 3:30am. I was a little annoyed that they hadn't fed him once more before he was NPO, but there wasn't much I could do. It turned out to be a great blessing. I was expecting a very unhappy little one when I got there in the morning, but our son is a very relaxed child. He slept all the way through until they called to say they could take him early and get it over with. I was thankful at that point that he hadn't eaten closer to the 6am cut off time. His surgery went beautifully and he is now the proud owner of a central line in his groin. The doctors did a great job and it looks good, it's just really difficult to change his diapers.

One of the doctors we saw yesterday was the pediatric opthomologist. He was looking for any signs of damage to Joshua's retina and other parts of the eyes that CMV can damage. The doctor said that there is no retinitis at all and he looks perfect. Yay! Today, Joshua is scheduled for a CT scan and a visit from the neurologist. This is the big one. Hopefully this visit, along with the CT will tell us more about what parts of Josh's brain will be impacted. I'll try to update tomorrow to let you know how it went. We've been coming home at night to sleep so the only time I have access to the internet is either really late at night or really early in the morning before I go. Both times, I'm pretty groggy. :)

I know there haven't been any daily pictures lately, but we've been kind of busy. :) Joshua is continuing to change and grow and get really, really fat. His little cheeks are more like the jowels on a bulldog now and we love it! This is Joshua's crib. It makes me feel like he's an exhibit in the zoo and they insist we have the siderails up whenever he's in the crib. Like he's going to make a mad dash for it or something...

We have a completely wired baby. See the wires coming from his feet? They measure his blood oxygen, his heart rate, his respitory rate & a bunch of other things. If any of those things change beyond the normal limits, his nurse comes running.

Poor Joshua kept knocking himself in the head with his IV before they took it out and put in the central line. It was unbelieveably heavy!!

This is Joshua modeling the world's smallest hospital gown! :) We dress him in his clothes, but yesterday morning he had a sprinkler episode and the nurses changed him into this.

Finally, here it is. The smile that lights up my day! I caught the tail end of it the other day just as he was closing his eyes. He looks so mischevious!! That he gets from his daddy. :)

I'm not quite sure how to start this post. I want to be posting all the wonderful things that Joshua is doing. I wish I could tell you that Joshua is well and that we are all happy at home. Instead, I am posting to tell you that our sweet baby was admitted to the hospital yesterday for antiviral treatment. He will likely be in the hospital for around six weeks.

At discharge, our pediatrician noticed that Joshua's head was measuring a little small compared to the rest of his body. They were concerned that the plates in his skull may have fused prematurely which would've been a problem as he grew and his brain got larger. We were sent for x-rays and an ultrasound to determine if that was the case. Thankfully, the ultrasound showed that he was just fine and that the plates are open and not fused. They did find something else for concern, however. There are calcifications in and around some of the veins and tissues of his brain. They ran a blood panel and found that Joshua is positive for a virus called cytomelalovirus (CMV). This is a virus that I would've contracted early in my pregnancy and passed along to Joshua. I had no signs or symptoms of this virus and would never have known about it had Joshua not contracted it. To save you a trip to the internet to google it (please don't...it's a really scary virus and the internet gives super scary information), CMV causes lots of problems, including blindness, deafness, and cognitive issues. Because it is so early, we have no idea how Joshua's brain and development will be impacted, but we know it will be. His symptoms could range from a mild learning disability to something much more serious. Because there are calcifications present, we know that some damage has already been done and is irreversible. We don't know how much damage has been done or the severity of it and we won't have those answers until he is older. Thankfully, his hearing seems to be intact and the antiviral medication that they are starting is really good at preserving hearing.

We are obviously very upset with this diagnosis, however we are so thankful that it was found this early and from something as simple as microcephaly (small head). Most doctors may not have caught that and we are so thankful that our pediatrician was on the ball. We are also thankful that we have some of the best pediatric doctors in the country looking after our son. The pediatric infectious disease specialist is the best at what he does and we feel very secure with him heading up Joshua's treatment. Joshua will be seen by opthomologists and neurologists to see if we can figure out what part of his brain is effected by the calcifications, which will hopefully give us a better idea of how he will develop.

Today at 12:30pm, he is scheduled for surgery where they will put a catheter directly into this chest so he doesn't have to be poked for an IV again and they will continue treatment. He started the antivirals last night and each time I called and checked on him, they said he was sleeping comfortably and was just fine. Today will be a bit of a trial, I'm sure, as he can't eat after 6am this morning because of the surgery. It's going to be hard to sit with my son and not be able to feed him until after his surgery. Six hours is a long time for him to go without food! Most of my days will be spent at the hospital from here on out, and probably some nights too. Our cell phones work in the unit, so if you need to call, feel free.

On a final note, we know that our God is bigger than we could ever imagine and that He can heal Joshua with a word if it is His will. If it isn't in His will to heal our son completely, He will give us the means to deal with it. We know that He loves Joshua even more than we do (which is so hard to imagine!), and we trust that His plan is perfect and that before Joshua was even a thought God knew that we would face this and has given us the experience and the strength to deal with it. NOTHING happens without God's permission and this is no exception. We don't understand why it's happening to our baby, but we have no doubt that there is a reason and that God is in control. My sister-in-law, Carly, put it perfectly in an email to me yesterday. She said, "God saw fit to leave Joshua in your care. And not because He looked down and said, "I guess that couple will do" but because He looked down and and said, "There, that couple. They will be perfect for this baby." Thank you, Carly...we needed to hear that, and we whole heartedly agree!!

I'll end on a happy note. My son is a champion eater. Of course, he comes from good stock. Both my family and Ben's family are all about food. At breakfast, we talk about what's for lunch. At lunch, you discuss what's for dinner, and at dinner, you dream about breakfast. It's a never ending cycle really. Anyway, Joshua loves to eat and his diet seems to agree with him. He is already up to 7 lbs, 7 oz. Just to remind you, he was born at 6 lbs, 12 oz and was down to 6 lbs 7 oz at discharge. A week ago at the doctor's office, he was 6 lbs, 10 oz. Yep, that's right...my son has gained almost a full pound in just under a week. The doctors were very impressed. He has also gained a 1/2 inch in length and is now measuring 20 3/4 inches long. We are so proud of him. :)

The first few firsts of many firsts...

Today is our first day without daddy. Ben went back to work today, and I've never seen him drag his feet more. Thankfully tomorrow is Saturday and we get him back for a full two days. Yay! Here are a few more firsts for you...

I guess if you can call a good wiping down with a wet washcloth a bath, then Joshua had his first bath at home yesterday. :) He wasn't too keen on the idea at first, but after daddy held his hand, made the magic "shhh, shhh, shhh" noise, and said "It's ok, buddy. Daddy's here", Joshua settled into it and seemed to enjoy the rest of the bath.

He also had his first trip to Ben's workplace and his first experience with people trying to wake him when he was sleeping. Normally, people try to keep a sleeping baby sleeping. But Ben works with some pretty boisterous guys who talk loudly and joke and laugh and wanted to see him awake. Joshua didn't mind it one bit and even obliged and opened one eye to look at them.

The last first I'll share is his first experience in his new Moby Wrap. I wanted to be able to 'wear' him for many reasons. It helps with the bonding, it makes the baby feel secure, no one can touch him unless I allow them to, and my hands are free to do whatever else I want or need to do. The Moby Wrap is this giant (18 ft long!) piece of thick jersey material that you wrap around you and then tuck the baby in it. We wrapped me up like a mummy and then settled Joshua into it. He LOVED it and so did I.

This morning, during his 3am feeding, I had a first too. It was the first time I realized that no amount of exhaustion could dampen the thrill of that first really big smile. Joshua smiled this morning! It wasn't really the first, as he's been doing it since day one (I just thought it was gas originally!), but this smile was different. It was a full out, eyes crinkled around the edges, gum showing smile. You know, the kind of smile that stops your heart it's so cute. It was such a big smile that I realized that he has a dimple in his right cheek. I was so upset that I didn't have my phone or a camera or something to document it! He did it two or three times and then fell asleep. Maybe it was a good thing that I didn't have a camera to take a picture of it. Now, that first beautiful smile is all mine to keep in my heart. Don't worry...I'm sure you'll get plenty in years to come. :)

I just heard my son fill his diaper so I'll end for now and leave you with your daily Joshua cuteness fix:

More Joshua...

Our first few days home have been a rousing success. Joshua never cries unless he's really hungry or lonely. We've been blessed with a very relaxed little boy. He is sleeping around 3 -4 hours between feedings at night - we are certainly enjoying that little gift! He is also eating in true Nodine fashion - he's up 3 oz from his discharge weight! Both Ben & I are so proud of our little man. We have no idea how we ever lived without him!