17 days old and doing great!

My darling EJ,

You are 17 days old today. You have done a LOT this week!

1. Started pooing in your bag - and we are talking REAL poo not bile poo!
2. Gained 7 ounces in 4 days! Currently you weigh 7lbs 1oz!! :D
3. Started eating! (We are up to about an ounce each feeding!)
4. Smiling a TON! (I know they say it's gas but (A.) your farts are loud and (B.) I wanna think that you are smiling at me so there!)
5. Had your IV fluid cut in HALF! (Which helps your hunger!)
6. Got your third bath! (You were mildly upset about it but got over it fast - cause you got to eat afterwards)

It looks like you are going to be here in the NICU for Halloween and Mommy may even be staying with you but we haven't totally planned it out yet. Mommy is also happy to say that we have changed your ostomy bag 4 times! 2 of the changes have been in the last 24 hours because you moved enough to leak under the duaDerm (the skin protectant).

Grandma has been driving Mommy down to the hospital to see you pretty much every day this week! Daddy and Mommy are SO appreciative for her doing that!!!!

Today, you have eaten like a champ and Mommy is so happy that you are making progress (even though they are on your own terms). And Mommy is loving the fact that she has gotten to take care of you all day today - minus the changing of your ostomy bag and listening to your heart, lungs, and guts.

I am not sure I wanna leave today! Ha!

Mommy and Daddy love you and we are so glad you are working your way closer to coming home! (Though we still don't have an official day yet)

xoxoxoxxo
Mommy & Daddy

Two weeks old and making progress

Dearest EJ,

Well, it has been what seems like the LONGEST weekend ever! Your surgery was Thursday of last week and we have been waiting for your bowels to wake up enough to start pooping into the ostomy bag.

And after a LONG 5 days you finally started yesterday! Dr. A had the nurses remove your NG tube and you kept everything down and kept pooping and farting into the bag.

Daddy and I were so relieved! We were having such a hard time waiting because we thought your bowels would wake up faster than they did. But after a VERY difficult Monday we got the most awesome Tuesday! :)

So, now Mommy is waiting for Dr. A to make his rounds and tell Mommy what the plan is for the day. And I'm waiting on pins and needles!

We love you, Monkey!
Mommy & Daddy

Your first surgery (and bath time)

My Darling Monkey,

Yesterday was your first surgery.

You were in there for about 6 hours. We all waited on pins and needles for you to come out.

Dr. A said that you did fabulous! He brought out pictures for us to see what they did to you. Basically, they started by going in and taking a bunch of biopsies every 10 cm. The pathologist took a look at the biopsies and after two hours they finally found some live ganglion cells at the lower junction of the intestine - aka the small intestine. Which means your large intestine are all ruined.

After taking a look at the options Dr. A decided to wait to do the pull through surgery until you were a little bigger - aka doubled in size. So now you have an ileostomy bag. Dr. A said you would have it at most for 3 to 6 months but we will be meeting with him every month until you are the right size for the pull through.

BUT the good news is: Dr. A said that you could come home maybe as early as the beginning of NEXT WEEK!!!

Everyone is very excited about that. Mommy is ready to learn though. I want to know what to expect with your  ileostomy bag. I want to know how to work with it and take care of it. And preferably a bit BEFORE we bring you home!!

I am so happy that we are possibly going to have you home before your three weeks old!

So on that note! Here are some pictures of your FIRST bathtime! :)

Where's the baby??

Snug as a bug in a rug! <3

We love you Monkey man!!

Mommy & Daddy

Day 8 of life and your first surgery

My darling baby boy,
The last two days have been a whirlwind.

Recap: Dr.A came and saw Daddy and Mommy yesterday morning. He said the results from the biopsy showed you had Hirschsprung's and that he wanted to get you into surgery yesterday afternoon (but the surgical dept said no). They rescheduled the surgery for today at 7am.

We also had a lot of fun yesterday - you got your first bath AND you breastfed for the third time but you latched on perfectly and ate for a solid 5 minutes! I was so proud!

Daddy is really worried about you this morning and so is Mommy. Daddy had a tummy ache from his worrying. But Grandma said that Grandpa is so worried that he threw up this morning!

So, currently you are in surgery and your entourage here in the waiting room consists of Daddy, Mommy, Grandma, Nonnie, Boppie, Aunt Annie and Uncle Ryan.

The liason just came out to say they were starting the surgery.

Mommy will post up bath pictures and the update on the surgery later today.

We love you so fiercely!
Daddy & Mommy

The Up's and Down's of NICU Life

Dear EJ,

Today was a difficult day and yet a miraculous day.

We started out today with lots of tears and crying on Mommy's and your part. They had to move your IV as soon as Daddy and Mommy got there. So, Mommy had to walk away cause listening and watching you cry out in pain kills me. I feel bad because I know I should be there for you but if I don't walk away I am afraid I wouldn't be able to hold myself back from stopping the nurses and cry my eyes out!

Which brings me to another point that I want you to know about the first week and the last nine months of your life: Your daddy is amazing! He has been our rock and when Mommy thinks she can't deal with anything anymore your Daddy steps up and takes control of things for Mommy!! He has even made sure that Mommy takes care of herself and he's stayed on top of your care there in the NICU!

The other thing today that happened was that after the IV fiasco Mommy wasn't sure that she could keep up with the pumping and just keep going. It wasn't like I don't love you or care but Mommy was so stressed after listening to you cry. But then I held you and we worked on breastfeeding more and suddenly I remembered that I would do anything for you. That my being was complete because of you and your Daddy. I am truly amazed at what holding you can do for my soul.

Daddy and Mommy are going to see you bright and early tomorrow morning in hopes of being there when the doctor's make their rounds and to be there to see Dr. A when he comes with the results of yesterday's biopsy.

We love you handsome boy! <3

Mommy & Daddy

Your second hospital transfer

My Darling Little Monkey,

Today marks day 5 of your life in the world!! And you had a first today too!! But first to back track over the last couple of days.

So Saturday came and went without any problems. You had a blue light for you jaundice for the day. But other than that it was just irrigating your bowels every four hours.

Sunday morning we got a call from Karen, she is a transport nurse there at UNMC. Karen said that Dr. R wanted to meet with Mommy & Daddy so we got ourselves together and headed down there. Dr. R told us that there hadn't been a change in your bowel sounds yet so they wanted to transfer you to Children's Hospital. So by 2:30pm they had you loaded up and headed to Children's!

Daddy & Mommy met you there. And you were all wrapped up and relaxing. We hung out with you for a few hours so Mommy could pump.

Well then today, you had your rectal biopsy - which you didn't feel at all - and we are hoping to get the results Tuesday afternoon or Wednesday. And Mommy had her staples removed this morning - which she felt ALL of! :(

We headed out to see you and when we got there Mommy got the BEST NEWS EVER!!! You were allowed to be fed! And Mommy was allowed to BREASTFEED you!! YAY!!! We tried twice to breastfeed and the first time wasn't so pretty. But the second time with a little help from the lactation consultant you and I got about 8 minutes in with breastfeeding! Of course after about 5-10 minutes you spit most of it up! But we will try again tomorrow! :)

Oh and your G-Gma has become our savior! She agreed to get us a rental breast pump and so we will be able to continue with the pumping that won't kill Mommy when she isn't at the hospital!!! :D YAY!

I can't wait to see you tomorrow! I love you baby boy!! <3

With our love!
Mommy & Daddy

The days two and three of your little life

My Darling EJ,

Well, we are beginning a new kind of ride... From where Mommy left off last time:

Thursday you were just kinda hanging out in the NICU but it was becoming apparent that there might be a little more wrong since you hadn't pooped yet. But they wanted to watch you more so that's what they did. And while they did that Mommy worked on getting the Doctor to release her from the hospital!

On Friday morning, Mommy called the NICU to find out how you were doing. Your nurse said that you were pretty solid from not pooping and this was becoming an issue. You were uncomfortable all night long and made sure that your nurse knew it too!

Later on about 10am Mommy got released from the hospital. Grandma and Mommy were there in the NICU by 11:30! Mommy was SO relieved to FINALLY hold you and be with you in the SAME room!! <3 You were definitely uncomfortable. You were also gagging from the back up in your tummy and probably from the NG tube that had been placed in your nose (and goes down the back of your throat).

Your nurses - Rochelle and Sarah - told Mommy, Daddy, Grandma and Auntie that you were going to have a barium enema around 2:30 so that they could get an idea of what was going on with your bowels and get an idea if there was a blockage. By 5pm we had results and they said you were FULL of poo and gas but weren't able to get rid of any of it. They said because of this they were calling in a pediatric surgeon to take a look at the results. Dr. A wouldn't be getting there until later Friday night so Daddy decided that Mommy needed to get home to rest because she just got out of the hospital. And the nurse said that Dr. A would call once he had come to look at you.

Dr. A called Mommy at 9pm and said that you were a beautiful baby but we needed to get you to poo! :) He said that after irrigating your bowels with 50cc's of saline some of the blockage had come out. So they were going to continue to irrigate through the night and then do an x-ray in the morning to see if anything had changed.

This morning (Saturday), when Mommy, Daddy, and Grandma got to the hospital Rochelle said that they had cleared out some poo over night but it wasn't looking like they wanted. Dr. R (another pediatric surgeon) said that they would continue to irrigate through Saturday and then Sunday morning they are going to do another x-ray. After the x-ray on Sunday they will most likely end up transferring you to Children's Hospital in Omaha.

So, tomorrow will be an interesting day.. Mommy and Daddy have figured out one thing about you though... You are stubborn just like both of us! :)

We love you Monkey!!!

Mommy & Daddy

First Letter to my BORN child!

My Darling EJ,

You are finally here. Though we knew you would come out "swingin" - I don't think that we expected you to come out needing to take a trip to Omaha so quickly!

So, I suppose I should give you the whole run down. Mommy and Daddy came to the hospital on Monday, October 10th at about 4pm to try being induced because you and mommy's body weren't getting along at this point. We started with some Cytotec (a pill that makes mommy's cervix soft) and we did three doses of it over a 12 hour period. Tuesday the doctor came in around 8am and put in a Foley Bulb Catheter. That stayed in place most of the day before it fell out on its own (which is what was supposed to happen). When the catheter fell out we were dilated to 4cm.

At this point mommy started getting some drugs because the contractions were getting harder. We started getting drugs about every couple hours - that quickly progressed to every hour though.

By Wednesday morning - after a very hard and LONG night of contractions - we hadn't gotten very far. We got to 5 or 6 cm by early morning. By this point mommy was exhausted. The doctor told mommy to try a mini epidural which would last a few hours and let us get some sleep! And by 10:30am-ish we were passed out you and I!! We slept pretty good but when we woke up we were right back at feeling the contractions. BUT we progressed to 7 or 8cm now!! So we decided to try another round of mini epidural to try and finish opening up.

Unfortunately for us, it didn't work. The doctor was then very nice and asked mommy what she wanted to do. Mommy told the doctor that she was pretty sure at this point she was too exhausted to push you out even if we were at 10cm (which we weren't). So it was decided c-section was the answer.

We got in at about 2pm on Wednesday afternoon. By 2:47pm we got to hear your beautiful voice and see your beautiful red hair! You were born 6 pounds and 11 ounces and you were 19 inches long! And as soon as you got into Daddy's arms you settled down - of course Daddy was so scared to hold you but I saw him melt! :)

Daddy and the nurse took you up to the nursery and Mommy went to recovery for a little while. When mommy got upstairs to the Labor & Delivery ward you had a TON of visitors!! Grandma and Auntie Andrea were still there of course but Nonnie and Boppy were also there!

It wasn't long after that that Daddy filled Mommy in on what was going on. You were born with a 30% collapsed lung. The doctor wanted to send you to UNMC NICU and said that you would need to be operated on to get the lung inflated.

The NICU team was really nice and told us that you had already started to heal a little and that when you got to the hospital they probably would just observe you for the evening and see how you did. They took you at about 7:15pm for your ride to UNMC. Daddy and Boppy met you up there and Daddy filled out some paperwork and got the low down on what the game plan was - and as it turns out all you needed was observation!

Mommy called your nurse (Sam) at 4am on Thursday and she said that you were off your oxygen hood and were breathing on your own! You were just hooked up to an IV for fluids and they gave you a pacifier to give you something to suck on.

Mommy is very much looking forward to seeing you again and to *FINALLY* be able to hold your cute little wrinkly butt!!!

Mommy is going to be working VERY hard today to start the healing process so that she can get out and get to you!!

Daddy and I love you so much!! We are so glad that you are stubborn like both your parents!! <3

With all my love,
Mommy

EJ born on Oct 12, 2011 at 2:47pm. He was 6 pound 11 ounces and 19 inches long.

The process of birthing a baby

My darling EJ,

Well, after two to three weeks of wreaking havoc on mommy's body the Dr suggested we try induction. So, mommy and daddy have been at the hospital since about 4:45pm on October 10th trying to get mommy's body to agree that it is time for you to come out.

So far we have done two rounds (with another round to come in about 45 minutes) of a pill that softens mommy's cervix. And the about 7:45am or so the Dr will come in and put in a bulb catheter that goes in between the cervix and the amniotic sac and (with any luck) will open us up to labor!

We are really hoping that you are ok with this plan cause mommy is retaining a whole lot of water and doesn't like being so swollen and uncomfortable all the time. And the headaches are really starting to get on my nerves.

Mommy is hoping to be able to hold you before today is done. And I would bet it's safe to say that daddy is too!

We love you baby boy!
Mommy & Daddy