NICU Part II

At 2:26pm on May 10^th, Walter went into surgery.  The surgery was expected to go about 2 hours. 

                A few side notes:  About an hour before Walter’s surgery, I was contacted by a case manager for our insurance.  As it turns out, she is now an important part of our lives.  She helps us manage all the insurance and bills, no matter how complicated.  Also, we heard about the hospital’s community care program that helps families with bills. 

                Around 4pm, the surgery nurse let us know that the surgeon was finishing up.  Walter had a bowel blockage known as Marconium Ileus, which was often related to Cystic Fibrosis.  It was pretty clear at this point that our NICU experience was just beginning.  Just recovering from bowel surgery would take some time.  Also, because the blockage had been present throughout Walter’s development in the womb, his bowels would need to mature and develop.  It took us awhile to get to a schedule, but eventually our trips to the NICU became a routine.  Abby and I slept at home at night and spent the day at the NICU.  Walter slept all the day and partied all the night.  But we didn’t know about the night until much later.

                Then, on Saturday May 12^th, things got crazy.  Someone hit our parked car in the hospital parking garage and drove off.  So, I spent the weekend talking to auto insurance and police and hospital security.  

NICU stay part I

Abby asked me to write out some of my notes from Walter’s birth.  The blog has been waiting on my response for awhile, because I didn't get this done.  So I'm going to go part by part.  Here’s what I’ve got:

                One piece of advice I got sometime during Abby’s pregnancy was to prepare a notepad to be included in the labor bag.  We found some cute ones, and I slowly started to fill in the first few pages with some information and some fill in the blanks.  For instance, all the information for check in was on the first page.  That included names and social security numbers, address and phone numbers.  I put the hospital’s number and our physician’s number with all the rest of the info, too.   As it turns out, I needed the notebook to keep track of all the things that happened over the next few weeks.  Here are my notes.

                Abby already wrote about the labor and such, so I’ll skip ahead to the trip to the Neonatal Intensive Care Unit (NICU).

                On the morning of May 9^th, both Abby and Walter were cleared to start getting ready to go.  We were told to pack up at our own pace, and the nurses would get the paperwork ready for checkout.  Walter’s early morning checkup had gone well, although the pediatrician wanted us to stay until he pooped.  We were advised to not worry, there was still lots of time for that.  By 10:40, Walter hadn’t poop, and he had just pit up bile.  We believe God placed the right nurse in the room with us at that time, because she called the on-call doctor to come and have a look.  He ordered an abdomen x-ray.  This was about 39 hours after birth – definitely too long to not have a poop.  The birthing unit nurses tried a few things, but nothing worked.  At 12:20pm, we were told there would be tough news regarding Walter’s intestines.  By 1:15pm we were transitioning from Provena to the Carle Foundation NICU.

                By 2:04 pm we were at the NICU.  Then I got a phone call.  The papers we signed to have Walter moved from Provena to Carle had been lost and the transition team needed permission to move Walter.  In other words, we were at the NICU, but Walter hadn’t made it yet.  We gave permission.

                By 3:05 pm Walter was in the NICU. 

                At 3:20 pm we met with a pediatric surgeon.  Dr. Allen Browne was in town for a couple weeks at Carle.  Normally, he spends his time at the Children’s Hospital of Illinois in Peoria, but he was here this week. 

                In the meantime, I was calling several insurance and dealing with phone calls from various people and groups.  I’m not going to put all those details in here now, because there are way too many.  I’ll just stick to what was going on with Walter.  A quick illustration, just to give context: This was the start of a several weeks where I ignored phone calls from people in my phone’s contact list and answered every unknown number because it could be a nurse or ambulance or insurance, or any other thing.  I later told people that they should feel good when they didn’t get me on the phone, because it meant I knew who they were and could safely ignore them for the time being.

                6:25 pm We discussed using the rooming out room at the NICU, but decided we would be sleeping at home at night. 

                8:00 pm We met the night nurse.  Each day from 7 to 8 am and pm, the nursing staff would change over and spend an hour talking to the next shift about the child each nurse would be assigned.  Over the next few weeks, we would meet many. 

                On the morning of May 10^th, Walter went to have several tests run.  They took about an hour, from 9 am to 10:15 am.  Afterwards, we met with Dr. Browne, who explained a bunch of possibilities but recommended exploratory surgery to determine exactly what was going on.  By this point, none of the flushes or stool loseners or anything else had gotten Walter to poop.  And his belly circumfrance was getting large.  We called the family in and 3 generations of family prayed for Walter and the surgeon.  By this time, Abby and I were fairly well exhausted and running on quick naps only.  We couldn’t stand to sleep much because we never knew who would need to talk to us about any changing plans.

Date Night!

So last weekend, Chuck and I attempted our first "night out" without Walter. His parents were getting ready to leave on a work trip for a week, so they were wanting to get some extra baby time in before they left, and graciously offered to babysit. I was pretty anxious about leaving him (more on this later-turns out a medication I was taking was increasing my feelings of anxiety), but also excited to get out for a bit. We decided to go out for dessert and a glass of wine at Sunsinger, and then go to campus town to listen to some bands. It was so nice to get out by ourselves for a bit. We sat outside at Sunsinger and I enjoyed an enormous slice of cheesecake with raspberry sauce which was amazing! I also ordered a glass of Malbec, which sadly did not live up to its description in the menu, but was still enjoyable. Chuck got a fruit tart and Gewurztraminer, which was a nice summery pairing. We met up with a few of Chuck's friends at the concert and had a nice time. When we got home Walter had been great for Grandma and Grandpa. He ate and slept and wasn't fussy. I'm finding that the more I push myself to take these little breaks, then it doesn't seem so hard to do it the next time.

Getting ready to go :)

 Walter had lots of fun with Grandma and Grandpa.

Even developed some good fine-motor skills!

Supplementing *warning boobs discussed*

When I was pregnant with Walter, I had planned to exclusively breast feed him.  "Breast is Best" right?  Especially when we found out about his Cystic Fibrosis, I was more committed to the idea of breast feeding because of it's immunity boosting benefits. Well up until two days ago little Wally had never had anything but my breast milk to eat.  Before I explain his new supplemented eating plan, I want to share a little of what I've been doing to achieve my goal of breast feeding...

***Disclaimer 1*** I do not judge mothers who choose not to breast feed, or who want to and can't for various reasons;  believe me-I know how hard it is!  I am simply sharing my experience of pursuing breast feeding.

***Disclaimer 2*** This is a long-detailed post.  Feel free to skim :)

Right after he was born we had Wally placed on my chest to do the "breast crawl."  For those of you who are unfamiliar, a newborn baby can smell his mother's milk and has enough head strength and instinct to bob his head around towards the smell of milk until he finds the breast and can latch on for that first meal.  Breast feeding advocates say this is the best way to kick off a breast-feeding relationship and that baby often has a better latch when he's allowed to initiate.  I was really excited about trying this approach, but I didn't know if I'd be patient enough to wait for him to find food, or if I would feel compelled to help him. Well, score one for Team Bohall, Wally was a champ and found the breast very easily.  After that, nursing was a learning process for both of us during those first two days at Provena.  We tried frequently, but often he seemed uninterested, or got tired quickly as soon as I would hold him, or else it just plain hurt!  But we did get in two really good sessions within that first 48 hours where he fed for 15 minutes on each side.
After we were transferred to the Carle NICU, Walter was made NPO which means he ate nothing by mouth.  But I was still committed to breast feeding and so I was pumping every three hours even through the night.  People tell me that sounds horrible, but I thought it wasn't too bad.  I knew exactly how long it would take and my body kind of got into a rhythm.  Pretty soon I was waking up before the 3 hour alarm.  It's a lot more work when there's a real kid that needs feedind, and may or may not go back to sleep when he's done ;)  Although the implementation was easy, I wasn't producing much milk even after it came in.  In the NICU they had a "pumping lounge" because most of the babies couldn't actively breast feed, so lots of moms made use of it.  In said pumping lounge there were all kinds of "helpful" charts and posters telling you how to pump and how much you should be getting.  "Pumping Goal: 16-24oz per day or about 1oz per hour."  Well I was never anywhere near that, it was more like 1oz every three hours, but I was still optimistic as many people told me that babies are much better at expressing milk than any pump, and he would likely kick it up to high gear once he could nurse.  Meanwhile I was banking a lot of milk for when he was cleared to take some food by mouth.
Walter was cleared to start eating on Friday May, 18th, 11 days after he was born.  At first it was just by bottle but then after a day or two we were doing some nursing, which seemed to go okay, but then we'd still offer him some breast milk by bottle afterwards which he greedily took down :)
On Monday, we got the news that we'd likely be going home the following wednesday, provided his last x-ray was clear...and it was!  We were so excited, until the Nurse Practitioner on rounds Tuesday told us she was concerned that he wasn't taking enough by mouth yet to be dismissed.  I was so mad; I actually said to her "Well, he's only been eating for 4 days!"  But undeterred, she said, well we will watch him overnight and see how he does.  Our nurse that was assigned to Walter took us aside after that and said, "I know you want to breastfeed, and I think that's great, but because they can't tell how much he gets at a feeding, I would just give him bottles for the rest of the day and overnight in order to show he's eating enough...so we did.  I pumped and we woke him every three hours through the night to give him 60-70mL of breastmilk by bottle.  When morning came, the staff was satisfied and we were outta there by 2pm Wednesday May, 23; 16 days after he was born.  I felt like we had just completed a jail brake.
After we were home, nursing kind of plugged along but was becoming more painful and I felt he wasn't getting enough.  I had an appointment Friday May25th with Theresa Hardy, a wonderful lactation consultant at Christie Clinic.  She helped me correct his latch so it wasn't so painful for me, and was more effective for him, and got me started on Fenugreek, an herbal supplement to promote lactation and prescribed extra pumping after he nursed.  I had a recheck the following week, and his weight had dipped some from his NICU release, but was still above birth weight, but we decided not to chance it, and I got started on Reglan, a prescription medicine which causes increased milk production.  I was optimistic that this would be the magic bullet and things would improve, he would start gaining weight....which brings us to today's (June 7th) appointment...
When they weighed him he was back down to birth weight 7lbs 9oz at 1 month old.  I was sad, but I knew we could help him if we supplemented and I was ready to do it, but I just didn't know how.  Would I nurse and then give a bottle after...and then pump?  I wasn't sure I could do all that.  Then Theresa brought up Supplemental Nursing Systems, which I forgot about as an option.  Basically you run a tube from a reservoir of formula, and tape it to the breast.  Then baby nurses as usual but he is getting the breast milk and the formula.  Genius!!  This way he gets extra nutrition, but you don't have to sacrifice nursing or endanger your milk supply.
So far Walter thinks this is a fine plan and is nursing and gaining weight well.  But there's still the extra step of pumping when he's done nursing.  I'm optimistic about his weight gain and our nursing future, but time will tell.  There are moments when I'm like; Really?  We're doing this?  Giving him a bottle would be so easy!  But I've decided not to consider changing the plan until at least Monday.  Sometimes you just have to go one day at a time, and the next time you think about it, it's not so hard.  It was hard for me to feel like the old marketing ploy of "Science can feed your baby better than you can." may be true in our case.  But for now, I guess some breast milk is better than none, and we'll see how the supply holds out/increases; and what his calorie needs end up to be.

Walter Titus Bohall

As many of you may know, our journey home from the hospital was quite an adventure, but a week after he was born, before he came home, I took a moment to jot down Walter's birth story for him.  I didn't want it to get lost in all the drama that happened with his transfer to NICU and surgery.  Here's what I wrote...


Wally! 
You're here. Well, you've been here for a week already; but it's the first time I've had a minute alone to write down some thoughts.  I love you so-so-so-so much!  You look so much like your dad; and you've got his punctuality and patience too.  You came right on your due date, May 7th 2012.  Only 4% of babies do that!  But you wanted to make sure you had plenty of time; so my water broke @ 3:30 in the afternoon the day before.  It was Sunday and your dad and I were swimming at the Y.  You must have wanted to join in because I noticed my water had broken in the locker room right after we got out of the pool.  You were in no rush to get here though.  My contractions were few and far between until we finally went to the hospital @ 4am when contractions were 6-10 minutes apart.  We labored a long time; and I never was dialated past 3 centimeters.  So we finally started pitocin at around 2pm.  Luckily they didn't have to turn it up very high before the contractions started coming regularly, then fast and hard.  You were born by 8:45pm.  You were so beautiful with tons of dark hair and you looked up at me with blue eyes.  I think they've darkened some now; but they were light blue when I first saw you!  You were so alert and lifted your head up to look around and find some food.  You soon found what you were looking for; but wouldn't suck much.  We eventually found out why; but I'll write that part later.  It was so strange how for 9 months I tried to imagine what you'd be like and couldn't really believe the little thing kicking and growing inside me would eventually come out and be a baby-a person.  But as soon as you came out; it was hard to believe you were ever in there to begin with!  Your dad and I love you so much; and we can't wait to bring you home!  Even though we have to visit you in the NICU for now, we are already so blessed to be your parents and can't wait to see what God has in store for us as a family.


Love,
Mommy


Hopefully soon I will write a post about all the craziness that ensued after he was born.  Oh yeah, and after we almost left Provena Hospital to come home...