Day...Who Cares, We're Home!!!

Hello!! Sorry it's been so long since I posted, who knew having a baby at home would take so much time?!?!?! I'm working on this post all day!! I uploaded the pics this morning, am typing now in the afternoon and will no doubtedly finish this post sometime tonight!! (Edited to add: I started this post several days ago and am just now finishing it!!)


Well after 105 days in the hospital, Joshua is now home!! He arrived home around 6pm Thursday evening (Christmas Eve). It is such a joy and blessing to have him here with us. I just can't believe it has happened. We're adjusting to our new life as a family of 5 and dealing with the celebrations around Christmas and Joshua's medical care. It's been a lot to juggle and we're not yet completely settled in. The first three nights a nurse came to help us set up his IV feeds and make sure we knew what we were doing, now they feel very confident in our abilities and only will be coming once a week to check on him, draw blood, weigh him and things like that. So we're officially on our own now. We are responsible for preparing his bags of food, running the lines and hooking it all up to his central line. We also have to flush the line when we hook him and when he take him off of it. He is hooked up 21 hours a day with a 3 hour "window" in the evening where he's not hooked to anything. We also have to keep track of his input and output. We write down whenever he has a bottle (10ml a time), how much IV food he has and we weigh his diapers to keep track of the output. It takes about 90 minutes a day to do all of it. It's not too bad and we're learning how to work everything in. It's all worth it to have him home!

He's doing really well at home. He's having regular poops, lots of gas and no spit ups. If he continues to do so well and is able to regularly up his feed amounts he may not have to ever go back to the hospital for a stay and surgery!!! I really believe that he is getting better. I just know it!!! He's gaining weight (up to 14 pounds now!), and has never had a better week as far as spit ups and things go, so I really feel good about saying I believe he is doing better!!! We email his surgeon daily and he's very pleased with how well he's doing. Praises to God!!!





Bundled up and ready to go...and not real happy about it!! He calmed down and fell asleep on the drive home though.

Being carried through the doors of the NICU by one of our favorite nurses. He's free!!!

His first elevator ride! My three babes together at last!!

So the next morning, was Christmas morning. Joshua and I spent the night downstairs. He slept half the night in the bassinet insert of his pack n play and the other half in my arms in the rocking chair. He and I were up around 6, but we waited to wake the family up until 7! Noah and Abby were very excited and came running!!

Joshua ended up falling back asleep during the present opening, so he didn't notice all the cool Wubba Nubs and other things we got him!!

Noah of course got lots of Legos. He loves Legos!!

Abby loves stuffed animals more than anything and was so thrilled with her stuffed rock house full of dinos!!

Stocking time!! They got a few small gifts and build a bear gift cards. We also got tickets for the Harlem Globetrotters in Noah's stocking and tickets to the Mary Poppins broadway show when it comes in April in Abby's stocking. I think they were pleased.

Even Jasmine had a few things in her stocking!! She is finally getting used to the crying baby and his noisy pumps!! She was afraid of the pumps the first few days, but now she just ignores them. She's done plenty of sniffing Joshua and seems to have accepted him into the pack!!

I so love them in their matching pajamas!! They are so cute!!

All three kids got new 'wheels' for Christmas so we took them all out for a ride. Noah got an electric scooter from my parents, Abby got a scooter from us and Joshua got his stroller!! It was chilly but sunny and nice out. I was able to push both the stroller and the iv pole. I never thought I'd be doing that, but I'm just so thankful to have him home!!

Because Joshua has a central line in his chest, we're still doing sponge type baths here with him at home. These are pictures from his first bath at home. I wash his body with those Huggies bath wipes and then give him a full shampoo because he has so much hair!! He's a pretty good sport about it but sometimes gets mad about it!!

This was from Joshua's first family outing. We went to church and lunch on Sunday. He slept through church and had a bottle at lunch, so he was happy!! I thought Noah and Abby looked so cute and so grown up!! I mean Noah's going to be 10 in a month, aaaahhhh!!

And finally just a cute photo of the baby!! I couldn't wait to get him home and dressed in all the clothes I got for him. In the hospital he could only wear button up sleepers because of all the wires and tubes. But at home he just has the one set of tubes, so he can wear just about anything.

So that's it for now. I'll really try to update more often. Now that the holidays are over and things are settling down, it should be a little easier!!

Day 98 - A Break!

Today is day 98 of Joshua's life and hospital stay. We have just 7 days until Christmas! And Joshua may actually be home for it!!! He now weighs 12 pounds 11 ounces. He has his nose tube out again today and is doing well. He's had one stool and lots of gas!! I truly believe that he may be healing himself (well with God's help of course!!) and that he may not need another surgery. Boy that would be so wonderful!! But we won't know for a few more weeks, so we'll be patient and keep praying!

So the exciting news is that they've decided to send us home for a break!! We will get to have our baby home for a few weeks and then we'll go back for the surgery if it's necessary. He will be coming home with a central line in his chest for his intravenous foods and medicines. Steve and I will be responsible for the care of that, except for the dressing change on the line. We will be hanging the feeds everyday, flushing the line and adding all vitamins and medicines to the bag of fluids. I began training today. Everything has to sterile because the line goes straight to his heart. So it's a little scary, but I think we'll be extra careful and everything should be fine. They told us they felt very confident that he would be fine under our care. They felt that because we have always been so active in his care and always at the hospital with him, that we would be able to notice any problems and that we would be able to handle all the procedures. Apparently, they don't always feel that way about the parents they have to deal with, so I'm just glad that they feel this way about us.

So everyday, we will have to add the ingredients to his bag of food (using real syringes with needles...aaahh!!), then using sterile procedures we'll flush the line with normal saline and then hook up the new food. Then we'll have to know how to program the pumps to run it. Luckily his pumps will be portable and we'll be able to pack everything up into a backpack so we can go outside if we want or just walk around our house. I'm so excited to show him the outside world. They told me even if it's cold, I can bundle him up and take him out. They're also going to try to work out a 2 hour window during the day when he's off the line, so he can be completely untied from any cords and we can use that time to bathe him or whatever we want. I didn't realize he would be so portable. I had imagined that he would be confined to the area around his bed like he is at the hospital! I'm so glad to know we'll be able to take him around the house and outside!!

We will be under the care of home nurses but they won't be there everyday. They said the first 3 days at home, they will be there to watch me hook everything up to make sure I'm comfortable with it. Then they will come at least once a week to draw blood for labs, change the dressing and assess him. Then we will also be going into the hospital once a week for a "clinic" visit where we will meet with our doctors and nurses to go over how the previous week was and to make plans for the next week. Plus we're never more than a phone call away from his surgeon and the home care people. His surgeon is the one who really got this going. I'm so glad he's all for this. We trust him, so we know this has been really thought out and he is certain that Joshua will be fine.

So hopefully, if all goes well, he'll be home right before Christmas. If not, then at least within a day or two of it, and we'll wait to have our celebration for when he is home. I have matching jammies from Disney for them to wear overnight and for the Christmas morning and then matching sweaters to wear during the day!! I'm so excited!!

These pictures show Joshua with his mohawk!! I washed his hair last night before he went to bed and brushed it up and it stayed last night and today!! I thought it was so cute!!

I have my next lesson tomorrow and then I'll keep practicing next week. Hopefully we'll be out of here in time for Christmas!!! I can't wait to get my baby home!!

Day 96 - A Setback

Today is day 96 of Joshua's life and hospital stay. It's just 9 days until Christmas. Unfortunately it looks like Joshua will not be home for Christmas. In fact, we don't know when he'll be home at all. But I'll get more into that later in this post. I wanted to share these 6 photos because they were taken during about a 2 minute period and show him falling asleep. I thought it was just too sweet!! I love that baby!

I also love how he cuddles his Wubba Nub pal!! He has a frog, dog, duck and horse. They're so cute!!

So Joshua weighs around 12 pounds 8 ounces right now. He has started to gain weight again. That's good. He's still only being fed through his PICC line, so it's only liquid nutrition. Nothing in the belly. He is completely off pain meds and is doing really well overall. He is still not moving anything through his intestines, so last Friday we started a study to find out why. We started with a lower GI on Friday. He had a barium enema sent up through the intestines to see if we could get up to the anastamosis (re-connection site) so we could see if there was a problem there. Maybe swelling or a blockage. During that test we were not able to reach the anastamosis but all of the intestines we did get through seemed fine. So we had to wait over the weekend for the barium to pass out of his system to do an upper GI yesterday. So we went down for that (we have to go down to the radiology department for these tests) and his surgeon was there and stayed for the whole test. So they put the barium in through the tube in his nose and we watched it travel down. It takes awhile for the barium to go all through, so we were sent up to the room and they had someone come up with a portable x-ray to take pictures every few hours. At one point, they were concerned that it seemed as if nothing was moving past one point, so they brought him back down to radiology to get more and better pictures. They found that the barium was actually getting through, but really slowly. So this morning they took a few more x-rays and found that the barium did actually make it through to the colon, but it was moving very, very slowly. So, at this point, the surgeons and neonatologists believe that he either has a stricture (a point that narrows and causes things to back up as it can't all pass through) which would need to be removed, or an adhesion which is where the intestine has adhered to some part of the body inside is causing a narrowing. The adhesion removal would not involve any cutting of the intestines, just removing the connection. But either of these are major surgeries and we won't be able to know which it is until they go in and investigate. We can't tell from the outside. Now, there is a chance that whatever it is going on in there, could fix itself. If it's a stricture, it could just grow open with time and if it's an adhesion, it could release itself. There's not a whole lot of chance of those happening, but it is possible.

His surgeon feels so terrible about all of this. He has told us that Joshua is always on his mind and he just keeps going over and over the surgery in his head and he just can't think of anything he could've done differently to have a better outcome. He tries so hard to keep our spirits up. He loves to remind me that Joshua will eventually be a normal little boy, we just have to get this one part working again. He has told us that he's seen babies with enormous problems that they will have to live with forever and that Joshua will only have a scar left after all this. I know he's right, but right now that seems like forever away.

Tonight, Steve talked with him again and he spoke with the other surgeons and they believe it best to wait until 6 weeks after the last surgery which is 4 weeks away from now to do another surgery. So we'll be waiting until then, when they'll do another study to make sure the results are the same and then decide if he's fixed himself or if he'll need surgery. So that's somewhere around January 11th.

I'm not going to lie, our hearts are just broken. We already felt like we were at the end of our ropes as it is, having already been there 13 weeks and 5 days and now to wait another 4 weeks for surgery and at least another 3 weeks after that for recovery is just so awful. I know we will get through it, but it's so, so hard. We're trying to figure out the best way to do Christmas now. I'm hoping they'll at least ok another visit for Noah and Abby on Christmas Day so we can share at least a few hours together. There's also the slimmest of chances that they would let him go home with home nurse care. But when I say slim, I mean really slim. But oh that would be such a relief. Something to pray for!!

So we're trying to keep faith in God, that he will work all this out for good as Romans 8:28 says. It's easy to be faithful when things are good, but this has shown me how much harder it is to be faithful when things are bad. It's so much easier to just be sulking and down than it is to find joy and peace right now. But if I'm going to be a believer when things are easy, I better be a believer when things are hard. I know He will get us through this and that it will all be good. He never did say life would be all happy and fun. Everyone has tough times. Everyone suffers at some time and is sad at other times. That doesn't mean He isn't with us. He is. And so even though my heart is broken, I will chose to be faithful and chose to believe Him. And try really hard not to question His decisions!!

Here are pictures of Noah and Abby from their first Upward games. For some reasons my pictures all turned kind of bad. Abby's picture is ok, but Noah's isn't so great and it's the best one I had! Hopefully I'll get better ones this weekend!

So keep praying for us and I'll try to update more often as we learn more info. Thank you all.

Day 91 - 3 Months

Today is day 91 of Joshua's life and hospital stay. We have just 15 days left until Christmas and his homecoming, I hope. Joshua is three months old now!! I can't believe he's already that old. Wow.

He is doing much better as far as surgery recovery goes. He is no longer on any pain medication and is as happy as can be. In fact he rarely even whines. His incision is healing beautifully and the sites where the stomas were have scabbed over and are also healing well. He weighs around 12 pounds 8 ounces right now. He gained some weight last week and has lost a little over the past few days.

Feeding is still on hold. We tried to feed him on Monday, but after two 10ml bottles, he started vomiting. He ended up vomiting several times that day and they decided to put the NG tube back in to help him empty his stomach. He still has the tube in and he's still having a large amount of stuff coming out.

Tomorrow we're doing a test to help determine why he's having such troubles getting things to go down. We're basically trying to determine if he's got a spot in the intestines that's not open, or if we just have a motility problem where things are just not moving. So they'll be doing a barium enema and watching via x-ray to see if the liquid can make it's way all the way up the stomach. If for some reason, they can't get it to the stomach just because of how big he is, then we'll have to wait until Monday and do they test from the mouth done. It would really stink to have to have that test because those are more days we'll just be waiting. I'm so tired of waiting.

I really don't know what we'll do other than wait (and I'm tired of waiting) if it's diagnosed as a closed spot. I think the theory at this time is that if it's closed, we just have to wait for it to open. But if it's just motility, there are drugs we can use to try and get things moving. Oh, how I hope it's that. His Dr. believes it's motility. I hope he's right. So after we get a diagnosis, we'll know more of what's going to happen. It's looking bleak for a Christmas homecoming, but I'll have hope until 11:59pm December 24th. God has done much bigger things than this, so I know He can do it, if it's His will. Plus, even if we do miss Christmas, I know my son will get out of the hospital and come home sometime soon. I know it. And that gets me through these tough times. I remind myself of what I used to say during my very short stint in the Army (if you didn't know I had a short stint in the Army, ask me about it the next time you see me!!), whenever we were being made to do all these horribly physical "punishments" I would recite to myself "this too shall pass" over and over and that's what I'm telling myself now.



The rest of us are doing ok. Abby is loving cheerleading!! She is doing cheers and cartwheels all the time! It's driving poor Noah crazy! He is having a great time in basketball. They are both so ready for Christmas. I wrapped most of their presents the other night and when they woke up in the morning they were amazed! Our tree is bursting!! I'm trying to get the playroom organized and cleaned up. I want to re-do my scrapbook room/closet to allow for some toy storage in there as well. I'm also working on some ornaments for Joshua's nurses and therapists to give to them when we're about to go home. We're having meals delivered from our church the next few weeks. That's really a great help. We also got a package of cookies delivered to our door from the church. They were yummy!! We've enjoyed lots of Christmas cartoons and movies. Charlie Brown and Elf are my favorites! The kids really enjoyed the new Prep and Landing, I slept through it!!

Well I'm off, it's Survivor time!! Please pray for the test tomorrow. Pray for a diagnosis from that one test and that we can finally get things moving and get that baby eating. And please pray for peace and calmness for Steve and I as we are really feeling pushed to our limits right now. It's just been sooooo long. And please pray for Noah and Abby who have been such troopers through all this and may end up with a delayed Christmas. They really have taken everything so well and I hate asking them to postpone it if necessary, but they happily agreed. They're such good kids. I'm so blessed.

Day 86 - Feeling Better

Today is day 86 of Joshua's life and hospital stay. We have just 20 days left until Christmas and his homecoming!! That's less than 3 weeks!! We're hoping he'll actually get out in about 17-19 days. This picture was before surgery. I just thought it was cute! He looks so chubby!!

Joshua hasn't been weighed since before surgery, so I have no update there. He's doing much better today. His pain is finally under control and probably just improving from being 5 days since surgery. They changed his drug from morphine to fentanyl yesterday. He seems to be doing well with that. He decided late Thursday night that he was tired of the ventilator and when his nurse went to get his medicine, he took it out himself!! His heartrate immediately dropped as he was not yet breathing on his own, so the code alarm was called and they all rushed in and were able to calm him and get him breathing on his own. They put a nasal cannula with 30% oxygen on him and he's being weaned from that today.

Yesterday he did a little better. We were able to hold him for the first time because the vent was out. That was so nice! I actually did kangaroo care with him. That means that he was naked except for the diaper and I was shirtless except for undergarments and we sat there skin to skin. That's supposed to be very soothing for babies. So we sat like that for about 2 1/2 hours. He was still in a good amount of pain both from the surgery and from the gas he was having. I know it's kind of not cool to write about gas, but we were so happy it was happening!! It means things are working down there!! So whenever he would have a big bout of pain, he would bear down and hold his breath. Sometimes he'd need to have the oxygen mask placed in front of him and other times he would just recover on his own, but that boy can hold his breath for forever!! Today he is doing much better with it and hasn't done the holding breath thing. I think the new medicine is helping too.

The secretions that the naso-gastric tube are sucking from his stomach and getting more and more clear and that means that the belly is now allowing that stuff to pass on down through the intestines. This is another great sign. He's also had lots of gas like I mentioned, and even two poops!! So they decided this morning to no longer suction the stomach, but they left the tube in just in case the stomach backs up, it can help empty it. But it's no longer actually sucking anything out. That's so great!! That means in the next day or two, they'll begin feeding him. And then we just have to get him up to his max feeds and tolerating it, then we'll go home!! Hopefully that'll go quick because of how much he's already been eating before surgery.

So overall things are looking up and I'm so relieved. It's been a very long and draining week for us all, but especially Joshua. I'll be so glad when this is all over and we just have the the scar to remind us of it. This has been the longest 12 weeks of my life. I can not wait until it's all over.

Noah and Abby spent the week with family. I think they did well and had a good time. I'm so glad we have family near that can fill in like that. It definitely makes things easier. They both started their Upwards seasons today. Noah had his first basketball game and Abby had her first ever cheerleading game. They were both so cute. I took them to the games while Daddy was at the hospital. Next week we'll probably switch so Daddy can see the games. Luckily there will be plenty of games after Christmas where we all five can go together.

Well that's about it for now. I'll update again soon. Thanks!!

Day 83 - Post Op Post

Today is day 83 of Joshua's life and hospital stay. That leaves just 23 days until Christmas and his homecoming.

Joshua has had a rough few days.
Monday:
Steve and I arrived at the hospital around 6am. He had slept through most of the night, getting a final bottle of Pedialyte right before midnight. He was awake and cranky when we got here and I was able to rock him back to sleep while we waited for them to come get him for surgery. The anesthesia team came to get him around 7:15am. He loved the walk through the hallway. It was almost heartbreaking to see him so mesmerized by just being outside that room. So they took him in and started anesthesia and an epidural for the incision site. They also put in the ventilator. He was fine during surgery. They were able to reconnect the intestines as planned and there wasn't an overabundance of scar tissue to deal with, but there was some. The surgery itself lasted about 4 hours. They took his entire line of intestines out and measured and checked them over thoroughly to avoid missing anything. The surgeon was very confident that everything had been done properly. The was one surprise in that he has far less intestine overall than they previously thought. We were initially told he had 40cm of the top portion and 120cm of the bottom portion for a total of 160cm. He actually has 55cm of the top portion and another 55cm of the bottom portion for a total of 110cm. We're not sure why the huge discrepancy, but it is believed to be because the original measurements were just assumptions and not actual measurements. Anyway, it shouldn't be a problem that he has a smaller amount because we've been successfully feeding him for awhile now and if was going to be a problem, it would have already been. The surgeon said every body is different in how much length it needs to be able to successfully absorb the nutrients and grow the baby. He said if he wasn't confident in how well he would do, he wouldn't have reconnected him. I suppose time will tell there, but I'm pretty confident he will be fine.

So he came out of surgery with the ventilator in, a replogle (a naso-gastric tube that suctions out the stomach secretions to give the intestines a time to heal), a foley catheter, an epidural in his spine to continually numb just the area surrounding the incision, a PICC line that was running his pain meds and fluids and an IV in his foot for more fluids. He did well Monday, mainly resting. He slept 99% of the time, only waking very briefly a few times.

Tuesday:
The day started normal with our goal of getting him off the ventilator. He was continually breathing over the vent, meaning the vent was set at 30, he was breathing at least 40-50, plus he was more awake and agitated with the tube being in his mouth. We started him on the IV fluid feeds also. They took down his morphine and versed by half to try and wake him more so he would do better once they took the vent out. He was becoming more and more agitated. At one point, he cried (silently with the vent in) hysterically and the vent machine started alarming, his heart rate dropped and his O2 saturation went down. He started turning blue in the face and lips and we panicked. A nurse came immediately and started bagging him (using the bag to force air into him). He was able to stabilize with the bagging. By that time several respiratory team members and nurses were in trying to figure out what to do, they decided it was best to just pull the vent then as they assumed his problems were just because of his agitation with it. So they pulled the tube out and he just went lifeless and wouldn't breathe at all. The continued bagging him, and also put on a nasal cannula, but he would not breathe on his own. No one has yet been able to explain why that happened, but it was the scariest moment of my life. When they would take the air off to see what he would do and he just laid there, it was so awful. I just stood in the corner in a daze and Daddy was pacing by the door. It was just horrible. They eventually decided they needed to put a tube back in and then proceeded to do that. Once it was back in, he stabilized again and was fine. They had him up to 100% oxygen for awhile and he really perked up with that. He got color back into his skin and he rested. They think it may be that he was still just too sedated. Hopefully when we try again, it will have a much better result.

He was mostly fine the rest of the day. The tube causes him to have lots of secretions that need to be suctioned out (very normal) and sometimes it can cause him to "desat" meaning his O2 level goes down quickly, but after suctioning him it goes right back up. That's all a product of the tube being in there and not that there's something actually wrong with him.

Before we left for the night, he woke up for about 15 minutes and just stared into our eyes and I just sat there and talked to him and once he even tried to do a little smile. It was so nice to be able to connect to him like that again. I just love him so much and can't wait until I can hold him again and love on him. He's my little sweet baby.

So today: Wednesday:
We got here early as usual and heard that he had a pretty good night, but this morning was showing signs of being in more pain. They had discontinued the versed, so he was just on a small amount of morphine and the epidural. He was pretty agitated when his nurse and I examined his belly and we felt he should get a PRN (as needed) dose of morphine to calm him and it did. His hematacrit levels have been slowly declining over the last day or so, so they've ordered him another small blood transfusion. We should be getting that done soon. They had to put in a new iv for it because the one in his foot came out overnight. He was doing that horrible silent cry again (it just tears me up to see him do that, his face is just in a hysterical cry, but he doesn't make a noise. Oh it's awful) so we decided that since he wasn't due for another PRN dose of morphine, we'd give him a PRN dose of versed instead. We did that and he finally after a couple of hours of agitation, went to sleep and rested. He's resting now and we're still awaiting the bloods arrival. We're not going to try to take the vent out today. Maybe tomorrow or the next day. We really feel like maybe things happened to fastly and he became way to uncomfortable, so our goal for today is just pain control. Hopefully that'll be done and he can heal enough in the next day or so to come down from the meds. The meds also slow down the intestines, so ideally we'd like to wean him from them so we can get those intestines going, but right now he's just in too much pain and rightly so, he had a major surgery. So Daddy and I both agree that we just want to leave him alone for awhile and rest and heal.

Abby and Noah are doing well. They spent two nights with cousins and had a blast!! Now they're with my Mom and tomorrow and Friday they'll be with Steve's Mom. They've gotten to do lots of fun things and I'm so grateful to have the family around to not only take care of them, but to also "show them a goodtime"!

Daddy and I are doing ok. We've had a few rough and long days, but we're right where we want to be and that's with our little baby. We make a good team for Joshua, I'm the comforting one and he's the advocate (talking with the docs and making plans). We do well together.

So that's pretty much it for now. I'll update again when I can. Thanks so much for all the prayers and support. We have needed it.