Tuesday, April 28, 2009

Home Sweet Home

We've officially been home for 4 days now. Dylan continues to be great. He's such a good baby. He continues to eat like a champ and sleeps very well for the most part. He usually has one fussy spell in the middle of the night, but other than that he's pretty much perfect (I know would you expect anything less?)! A huge thank you to my mom who has been staying with me and even more importantly taking over all the burping, diaper changing, rocking back to sleep duties so that I can get the maximum amount of sleep in between feedings. She's been a life saver, especially because I've been dragging quite a bit with a bit of a sinus infection. Here are some things you've missed in the last few days...

On the Thursday before Dylan came home, Kristen and I decided to give him another bath in the hospital. I was holding a very naked Dylan and Kristen decided it was a photo op (what isn't with somebody this cute!). Kristen turned around to pick up the camera and when she turned back she started laughing hysterically. Dylan had apparently decided that it was a good time to poop and it was going down my t-shirt (these days I wear mostly Zach's clothes, so that's one less Cubs shirt I can wear in public. Brad/Carrie Mac, feel free to insert obvious joke here). Of course, I started laughing as well, and completely froze. I didn't want to put him back in his crib because he was still pooping. So, I was holding him out, while he pooped on the floor of the NICU. Kristen didn't know what to do either...so of course we decided she needed to take pictures! I then realized that his dirty diaper was still folded up in his crib, so I held him over it while he finished the job. Of course many of our favorite nurses came by to see what we were laughing so loudly about. I think at one point during his bath, we had about 7 nurses watching/laughing with us. What can I say; the little man is already quite popular!
Dylan says, it's not my fault, I had to go!
All clean now!
Last time in my room with Kristen!!

Very fittingly, Kristen worked on Friday, the day we got discharged. It just seemed right that she was there for his admittance and then to say farewell. The day went by quickly with the feedings etc. The room my mom and I stayed in was very nice...and it's best feature was that you could pick up a phone and order from a menu that had just about everything you could imagine (nachos, chicken nuggets etc.) pretty much any time of the day. That I could get used to. My parents both harassed me about how many different things I ordered, but it was like the perfect ultimate buffet!
Beth came up from the PICU for the final farewell and helped document the goodbye! I drove him home very cautiously, and of course was not at all pleased with all the crazy drivers cutting me off! But we made it. Vito was VERY interested in the baby. He just wants to lick him all over! He's started to calm down some, but was very hyper that first night!
Grandpa helping pack up the room

Saying goodbye to his favorite nurse!
Dylan says good bye to Children's Mercy
Farewell Children's!!
My first car ride!!
Dylan had his very first out of town home visitor. JoAnne came down to meet Dylan. It wasn't a very exciting weekend (we didn't leave the house), but JoAnne enjoyed holding Dylan and he enjoyed looking at the new face. We also enjoyed playing all sorts of games on Jo's i-Phone. Ever since my stay at the hospital, I've been addicted to Yahtzee!

Sunday, the Children's Mercy home health nurse stopped by. She did a fairly brief assessment on the little man (after a not very brief assessment of me!). Mainly, she'll come out twice a week for the next two weeks to make sure he's gaining weight appropriately. She was very nice, and Dylan is definitely used to people messing with him now. Dylan also had some more visitors. Beth, Josh and Lars came by to see the little man (sorry Lars, we need to get a picture next time). Beth made us some awesome cookies!! It's hard to tell, but they are houses welcoming Dylan home. We didn't let Dylan have any, but Uncle Morris will definitely get his share.

On Monday, Dylan's favorite nurse made a house visit. Kristen, Dylan and I were in withdrawal from each other after only 48 hours after seeing each other almost every day for 3 1/2 weeks. I have a feeling Dylan is going to know his way to Brookside very well, and Kristen's Civic will be able to do the drive to our house on its own. Monday night, we decided to give Dylan his first bath at home and his first bath without nurse's assistance. Luckily, Morris had come over to see Dylan and he's definitely an expert bath giver. Dylan didn't love the bath, but he did a pretty good job!

Dylan and I are still figuring out how to do all of this at home together. But we've got a ton of help which is much appreciated! And we're very excited for Grandma Toni and Aunt Nicki to come back and visit this weekend!!

Friday, April 24, 2009

There's No Place Like Home!!

I guess the title of the post is kind of fitting, since we're going home to Kansas. That's right, Dylan gained weight last night, and we're heading home this afternoon!!!

My mom and I survived the first official night of having Dylan entirely in our care. Although, he must like flirting with the night nurses, because he had absolutely no desire to go to sleep until around 1 a.m. After that he slept pretty well, except for the feedings every three hours. Wow, I'm pretty sure I'm going to reach an entirely new level of exhaustion. And I thought rowing practice at 5:30 a.m. was tough! But, it's all very much worth it. And we are all just so happy that Dylan has done so well and is going home so early! Being the slight perfectionist that I am, I had always told Zach that I hoped he was home in less than 4 weeks (the low end of average). Well after we saw how big the omphalocele was, I don't think any of the hospital workers would have taken the bet that he'd be out in less than 4 weeks. But Dylan already has quite the feisty personality and appears to enjoy proving people wrong.

We'll obviously have pictures of the homecoming (should I get a corsage?), but for now here are some of the pictures from the last 2 days...(and yes, every 3 week old needs overalls and a hoodie! Thanks Kristen!!)

My First Bath:

Wow, I'm exhausted!!

Wednesday, April 22, 2009

Dylan Continues to Amaze...

Yesterday, we started the day turning down his oxygen flow to .5 liters. Once again he responded like a champ. They left an order that he could continue to be turned down .1 liters at a time to see how he tolerated it. As with everything else in his life, he rocked it out with each change! Before the 6 p.m. feeding we took the nasal cannula out. It was a bit scary for me, but didn't seem to faze Dylan in the slightest! So, even though for the past week, I'd been told that there was little chance he'd go home without oxygen, he'd proven everybody wrong by doing great without any oxygen/flow support at all.

He also did a GREAT job eating. That's one of the main things they were worried about after getting off the oxygen. They were worried he would get too tired while eating and wouldn't want to eat enough. But he did a great job, and we didn't have to supplement at any of the 5 feedings in a row that we did.

This morning we decided to make Dylan a completely free man and take out his feeding tube. He was very excited about that, he'd actually yanked out the feeding tube twice already. So, that's right, as of approximately noon, Dylan is a free man! We can see his whole gorgeous face and he's doing great.

I'm going to stay overnight at the hospital tonight in one of the rooms in the NICU. That way I'll get to feed him at every feeding. He'll still be in his room with nurses watching him, but I'll get up every three hours to feed him (thanks to Andrea for staying with me for moral support). If he gains weight (the main sign he's eating off of me effectively enough) and I'm comfortable with how the night goes, they'll take him off all the monitors and I'll stay Thursday night (my mom is the lucky winner this time!) with him in the same room with me. Although, we'll still be in the NICU so obviously nurses and doctors are close, we're on our own. We'll do all the diaper changes, rocking, cuddling etc. And we won't have any monitors to randomly stare at. If I'm not super comfortable after tonight, or he doesn't gain weight I'll stay one more night with him still in the nursery but feeding him around the clock and stay with him in the same room with me Friday night.

So, in case it's not overly clear what that all means...Dylan is coming home on Friday or Saturday!! I can't believe it. He's done amazing through this whole ordeal (and I'm not the only one who thinks so, all of his doctors and nurses agree). I'm so excited to get him home, but definitely a little freaked out. I kind of want to tell everybody that I really have no idea what I'm doing, I've kind of just been faking it so far...but like everything else, I'm sure we'll figure it all out together. And I know I'll have tons of support from friends and family, so we'll do great.

I'm also sad to be leaving all of the amazing people at the hospital. Everybody has been so amazingly supportive and I've made some new friendships that I think I'll keep forever. The people here have definitely become an extended family/support system for me. More on the amazing people at Children's in another post coming soon...

I'll make sure to post when the little man gets to come home! Like I said, I'll try to update with any major changes/announcements, so feel free to check back often (and for those of you who followed Nicole's Australia blog, I promise to keep it going longer!).

In the meantime, continue to send some prayers our way that everything continues to go perfectly and we get to go home. Then I guess that's when the real adventure begins...

Bobbie and DZLee :)

Nothing But Progress...

April 13th - 14th

The surgery team decided to consult with the neonatologists about Dylan's breathing quickly. They were fairly confident that the cause of his fast breathing was just him learning to breathe with the additional pressure on his lungs from putting his liver and intestines back inside. But they wanted to make sure. They also ordered another echo of his heart to make sure it wasn't working overtime to supply his lungs. The echo came back completely clear and neonatology agreed that he just needed to figure out the breathing and get a little bigger and stronger. All commented on how healthy he looked and how great he was doing.

They also decided to do a round of lasix which is a diuretic. He had retained a lot of water post-surgery (from the surgery as well as all of the liquids they had been giving him). They also cut back on the liquids they were giving him as he was getting close to a full feeding of breast milk. The lasix appeared to do the trick. The next few diapers were incredibly full and you could visibly see a reduction to the puffiness in Dylan's legs and around his eyes. This also helped appear to help him breathe more easily.

April 15th - 19th

Dylan got all of his staples removed. He still has quite the scab on his stomach, but it's nice not to have to worry about getting the staples caught on anything when I'm moving him around.

Dylan also got his central line out (which was the last of his IV's). It's the one they put in the big vein close to the heart that they were feeding him through and that stays good for a longer time (other IVs can go bad after a few days). This was good news because it meant that they didn't foresee any reason to give him any more medication (he was on full feedings of breast milk through a tube in his nose). The central line was also the one I was the most scared of pulling out so it's nice that it was removed!

They are also letting me try to feed him if his breathing rate isn't too fast. Dylan definitely gets the general idea of eating, but gets a little frustrated. I think he enjoys being able to sleep while he eats and waking up full (my brother decided that did sound like a pretty sweet deal). Luckily between the nurses and the lactation consultant, Anne, I'm pretty sure we'll get the hang of it!

We decided to have occupational therapy come feed Dylan a bottle to see if there was a certain way/position he liked better for eating. Of course, since he's a show off, he took the bottle down without any problem or hesitation. Anne and I decided that perhaps it was us that he was annoyed at and not feeding. However, it was like something clicked after having the bottle and Dylan figured out being able to breathe while eating and without getting frustrated. So, post that he began to eat better and better and it took much less coaxing to get him to do it. Pretty quickly, he was eating enough from me that they weren't supplementing through his feeding tube at all!

April 20th

Kristen was Dylan's nurse again today. On Saturday, they turned down his oxygen flow from 3 liters to 2 liters. He actually tolerated it really well which was exciting. However, everybody was still thinking that likely he'd have to go home on some sort of oxygen just to support him as he got a bit bigger and stronger.

Kristen had him dressed in some adorable overalls and even a hoodie. He looked like such a little man instead of a baby! Because he had reacted to turning down the oxygen so well, they decided to take the flow down to 1 liter. His statistics actually improved with that change which was pretty impressive!

Dylan ate from me for all of his feedings and did such a good job we only had to supplement once and only 1/2 of the amount! He's definitely turning into quite the professional eater and I'm starting to get the hang of it too. The worst part is harassing him to wake him up when he's too sleepy.

We also gave him his first real bath. Of course they'd been doing sponge bath type baths, but now that his staples were out we could actually put him in the little tub. It was quite exciting and yes there is a video for those who want to watch it. Dylan didn't mind the water, until we started moving him around to clean him and then he wasn't very happy with the whole thing.

Here are some pictures from the past week. I'll post bath pics and others once I get them loaded. But I wanted to get this blog out, b/c I know Dylan already has a lot of adoring fans!

Saturday, April 18, 2009

Can you imagine a cuter Easter basket?!?

April 9th – 11th

Dylan continued to be progress on everything really quickly. He’s quite the rock star around the unit and charms all of the nurses and doctors. They started him on a very small amount of breast milk fed continuously through a tube that goes down through his nose and into his stomach. The small amount was to make sure that his stomach/intestines could handle digesting the food. He digested it great, but it appeared to aggravate him to get a taste of food in his stomach, but such a miniscule amount. (Apparently, even though they were supplementing with plenty of calories through the IV, it doesn’t create that same feeling of fullness.) Luckily, like the champ that he is, he took the food super well and they quickly advanced him to bolus feedings (a bigger feeding over 30-60 minutes).

Dylan continued to breathe a little rapidly (very common with abdominal surgery patients because of the additional pressure on his lungs by them pushing the intestines back inside.) However, we all very much enjoyed the ability to hold him now that he was off the vent and quickly made up for some lost snuggling time!

April 12th

Our favorite nurse Kristen decided to celebrate Easter with us by taking care of Dylan. And of course, leave it to Kristen to make it one of the most memorable Easters most of us have ever experienced (and in case we forget, we have about a thousand pics of it, I’m just putting some of my favorites up here). We show up to the hospital on Sunday morning and see an Easter basket (thanks Matt!). Not unusual, you would think…until Kristen says, I can’t wait to put him in the Easter basket! So, we dressed Dylan in his “Spring Chicken” outfit (everything has to work with the theme, right?) and put him into the Easter basket. He didn’t seem to mind it too much, but gave me the classic Zach look of I can’t believe you are doing this to me, even though I secretly like it. And I swear, just once, I think I saw Dylan shake his head at me…

We had a great time taking all of the pictures, and of course nurses from all over the floor stopped by to see how cute he looked…and to comment on how amusing it was to have a picture of a baby in a basket.

Friday, April 17, 2009

It's Been a Wild Ride so Far

Dylan Zachary Lee has had quite the eventful start to his life. Here’s the rundown…

March 31st

We had to arrive at the hospital at 5:30 a.m. Per usual, we were a few minutes late (thanks Andrea!). I changed into the stylish hospital gown, they started an IV, and put the baby on a monitor. After a few hours of hanging around, I walked to the operating room. It was a little weird to get up and walk after being in the hospital gown and in bed for 2 hours…kind of anticlimactic. And I even hoisted myself up onto the operating table. They put in the spinal tap…the anesthesiologist was an Iowa grad (go Hawks!). It was quite the bizarre feeling, and I asked about a thousand questions on if what I was feeling was normal. (hey, you try having somebody stab you in the back with a giant needle and see if you don’t get a little apprehensive…) I lay down on the table and they draped the curtain up so I couldn’t see the action. My mom and sister Andrea came in sporting some awesome space suits.

They checked to make sure I was numb and started the process. I actually wasn’t sure they had started until my mom stood up (she was sitting in a chair by my head) and told me they had indeed. For anyone who hasn’t had a Caesarean, it’s quite the bizarre feeling to have people cutting into your stomach, but you can’t feel any of it and can’t see any of it, so you have no idea what is happening. After the first layer, they started using a cauterizing tool for the rest of the incisions. So, I looked over at my mom and said, “Do you smell that? That’s the smell of my flesh burning.” The anesthesiologists (who were really the only doctors in the room concerned with me and not the baby) looked over at me to see if I was about to have a panic attack. I assured them I was joking, but I think they were still a little disturbed.

It only took a few minutes to get the little guy out. At 8:03 Dylan Zachary Lee Harsch was born weighing in at 6 lbs 6 ounces. And he started sucking on the doctor’s finger right away. Shortly after that, he started crying. Which was music to my ears. We were a little concerned he would need a breathing tube, because his lungs looked small on the ultrasound. The neonatologist, Dr. Jackson, almost immediately said, this kid isn’t going to need a breathing tube! They took Dylan to the bed and started dressing the omphalocele and doing other normal baby checks. He was off to the side and I could see him when the doctors/nurses didn’t get in my way. When he was ready to go to the NICU, the wheeled him over to me and I got to hold his hand before he left. Andrea went with him and my mom stayed with me. The doctors finished all the jazz with me and finished me off with a few staples (they obviously didn’t hurt, but it’s weird to know somebody is stapling you like a stack of papers). They wheeled me back into the post-op recovery room and I was done. Andrea shuttled all the proud relatives in and out of the NICU so everybody got to meet the little man.

The Children’s Mercy transport team showed up and they hooked him up to all of their machines for his first car ride. They were awesome and after he was all hooked up, they brought him into the recovery room and let me hold him. Being the smart, feisty little man he already is, he quickly discovered that he could pull his nasal canula out and set off the alarm. Which wasn’t a big deal, but the transport team had to come in each time and turn off the alarm. However, they showed a TON of patience and let me hold him for about 45 minutes before they had to leave. After he left, they wheeled me to my room that I would get to occupy for the next few days. They left the spinal tab in and I got a little button that I could push every 10 minutes and get a burst of drugs. And yes, I counted down each time…

My dad, Toni and Karl headed to Children’s so they could see Dylan when he got there. And of course, his favorite nurse Kristen was anxiously awaiting his arrival. And he already had quite the setup with his clothes, blankets etc. already arranged perfectly…not that we’d expect anything less. They got him situated and put in the central line and did all the assessments. Then the proud grandparents got to check out his new digs. Surgery was scheduled for 7:30 a.m. Wednesday, so after they got him situated he got to relax and try to get accustomed to life in the real world.

April 1st

After a pretty uneventful night (if you can consider waking up every few hours to have a nurse push on your stomach after a major surgery having to milk myself like a goat every 3 hours uneventful), my mom and Nicki joined Andrea and I in the hospital room as we awaited news of the surgery. Overnight, I had gotten the spinal tap removed and had even tried standing because I was very hopeful I could convince the doctor to give me a pass to go to Children’s to see Dylan after his surgery.

I talked to Kristen, the anesthesiologist, the surgeon and the surgeon’s nurse before the surgery. The omphalocele was bigger than anticipated so they weren’t entirely sure if they’d be able to close it in one surgery. However, being the insta-genuis that Dylan is, he had grown a lot of skin up around the side of the omphalocele. So, they thought there was some chance they’d be able to get it closed. After about 2 hours of surgery (the total anticipated surgery time), I got a call that said it would probably be an hour more. Dylan was tolerating everything great, and due to the extra skin they were going to be able to get it closed in one surgery!!! We were all so excited and extremely impressed!!! The surgeons and nurses were AMAZING!!!

My doctor came by on rounds later that morning and I convinced her that I should be able to go see the little guy. I had to prove that I could walk (somewhat) and promise that I would use a wheelchair everywhere. We headed to Children’s where I got to see the little guy for a few hours. He had been put on a vent before surgery, and was expected to stay on it for a while (putting his liver/intestine back in the abdominal cavity created quite a bit of pressure for his lungs). However, even with all the tubes etc, he looked GREAT! And I was so happy to get to see him.

April 2nd-3rd

Lots of friends and family came by to keep me company while I was in the hospital. Between my mom, Nicki and Andrea I was never alone. We discovered the hospital TV had games on it and there was a version of Yahtzee called Cinquo. Being the competitive bunch that we are, we all took part in a friendly competition to see who could get the highest score. Nicki and I had it in the bag, until my mom came through with a potentially unbeatable 402.

I got discharged on Friday around noon. Nicki drove me to the hospital while my mom went to get my pain meds filled and then she met us there. I was walking okay by this point…once I got standing I wasn’t too bad, but the changing of positions (sitting to standing or vice versa) was pretty uncomfortable. Dylan was still doing great, and looked pretty happy.

April 4th

Nicki, Toni and Karl headed back to Chicago. But no worries…Nicki was already so addicted to the little man, that she immediately booked a flight to come back on Monday, go back to Chicago Thursday morning for class even though she already had a flight to come back on Friday morning for the weekend.
But never worry, grandpa won't let Dylan be alone...

April 5th

Hey everybody! Did you hear the SCOOP? Dylan made a…POOP!! Now, while this is exciting for any baby, it is an especially big deal for a baby that has had abdominal surgery. Dylan was a champ right after birth and pooped and peed a few times in the bag they had put over his legs. But post abdominal surgery, one of the first major steps is having a bowel movement.

April 7th

Dylan got his ventilator removed today! We were very excited because it means we get to see more of his adorable face and also means that he’s that much closer to getting to come home. I was a bit nervous for the vent to come off…even though I want him home more than anything, there’s a bit of an addiction in staring at machines all the time. A few of the nurses have reminded me to look at him not the machine to see how he’s doing. He came off the machine like a champ, and continued to have perfect numbers when they drew blood to see how he was doing breathing. They did put a nasal cannula in his nose to give him a little bit of oxygen support. I think it annoys him some, but he gets great joy out of loosening it up by rubbing his cheeks against something and then yanking it out with his fingers.

April 8th

Attention everyone, take a seat…cuz today’s the day I get to eat!! Dylan got his first “meal” today. For those of you who are worried, of course he’s been being fed the whole time with a yummy solution of TPN and lipids. However, today he got to try getting fed breast milk to see how he handled it. Like everything else, he handled it like a complete champ. He has continued to have tons of poopy diapers (something tells me at some point the excitement will wear off). Everybody at the hospital has been super impressed with how quickly Dylan has recovered from his surgery and how quickly he’s getting to each progressive step.