Wednesday - Recap of Shelly's Discharge Day

I love how we were told about the timing of my discharge from the hospital. They never discharge a new mom before noon. Also, they didn't want me to feel like they were kicking us out...but there were currently 16 women down in labor & delivery. Daren and I decided to be out of the room by 2pm and be at the NICU for the 230pm feeding and stay until after the 530pm feeding before heading home for the night.

It took us until Wednesday to figure out when to schedule visitors to see us and Willa. The magic time is 30 minutes before a feeding. We get to visit with them for a bit in our room and then we trek down to the NICU to show off our princess. Jeff and Judy were our guinea pigs. All would have gone perfectly but the visit was interrupted by rounds.

We had a large crowd of folks with rounds. The NICU attending and followers AND the peds surgeons were able to make it at the same time.  The big points of the rounds was discussing a timeframe of dismissal for Willa but they didn't give and numbers. Such a tease. One new person to the rounds was a representative from occupational health therapy. These will be the folks to create the prosthetic used to crank down on the omphalocele. Also, Willa was moved from pod D (acute care) to pod B (maintenance care). The biggest difference for us as parents is a quieter atmosphere and less babies. Big plus for Daren and I is more room to maneuver and the ability to have our laptops and drinks with us.  Although, we did lose our window view.

Our final visitor before being dismissed was neighbor Paul stopping by to bring us some love from our neighbors. We feel so supported. We even got some fashion accessories. Now if we could just start putting clothes on little Willa.

Hats and swaddle blankets

We got home around 8pm and I could only think about sleep. I'm sure Daren appreciated having a bed larger than what he used in the hospital.

We sprung for the "king suite"

Happy Halloween!!!

I better post these pics before I get so far behind and it is Thanksgiving!!!

Tuesday

We finally have time to get to Tuesday. Once it got time for the late night feedings I realized that I overdid it as far as visitors and being up and about. I took a quick nap before heading to the NICU for the 1130 pm feeding. Just to give you a distance reference - our room was on the 5th floor and I had to go to the 4th floor, by elevator, to get to the NICU. It wasn't a super big distance but it did add up when I made roughly 8+ round trips in a day. I let the nurses know I would not be doing the 230am feeding and just give her a bottle.

Okay, back to the 1130pm feeding. This was the first time Willa spit up. I've been around plenty of babies. To have your baby girl with an abdomen wall defect spit up/gag is a very scary thing. I was shaken up. My NICU nurse was worried by the color of the spit up it might be indicative of the blockage and would take careful notes of how the 230am feeding went.

Willa also doing working
on her abs.

All was good in NICU pod D when I showed up for the 530am feeding. Potential crisis averted and Willa ate like a champ. When I headed back to the room for breakfast and a shower I knew I just had a quality ab workout from the feeding.

Another big event from the day was the the fact Willa's IV in her right hand blew. IV's go bad and a vein will go bad. It happens. The right hand was actually the second IV location. Previously the IV had been placed in her right foot.  Our NICU nurse started to search for the next great vein which apparently isn't so easy on a four day old baby. Willa's veins are very small and you have to choose carefully. The first attempt in the left hand failed. The second attempt in the left hand failed. At this point I asked how long it would take for the vein to heal. The answer was weeks. My next question, how many viable veins does Willa have? The answer was not enough to keep blowing veins. The nurses are only allowed to attempt twice before someone else needs to try. Also, they try to place an IV towards the extremities. The higher on the arm or leg takes away all of access points towards the hand/foot. No one else from pod D stepped up to plate or was asked to poke my daughter.  Instead, a "ringer" from another NICU pod was summoned. She got the IV in one try on the right hand. I wanted to kiss her.  Hearing your daughter cry after getting stuck three times is sooooo difficult.

While enduring the IV drama I kinda got a  phone call. Apparently, we are the only omphalocele baby currently at UNC.  This is "exciting" because UNC has an informational DVD about abdominal wall defects and they wanted us to have a copy of the video. Sure fine, bring it to me. Well, I wasn't in the best of moods and asked the nurses why are they giving this to me? This is the sort of thing I needed during my pregnancy and not when I'm already living with the  problem. It turns out the video was just finished and they wanted our feedback AND the IV goddess had a speaking role in the video. Open mouth insert food.

When babies are undergoing painful or stressful times the nurses use something called Toot Sweet. Consider it sugar crack. The babies are wailing and flailing until they get a drop of the sugar juice. I've also heard it is sold commercially. Thinking about trying to find some.

I also had my true first sighting of the om. Our peds surgeon, his resident and our nurse had just completed coating the om with silvadene.
Silver sulfadiazine, a sulfa drug, is used to prevent and treat infections of second- and third-degree burns. It kills a wide variety of bacteria. This medication is sometimes prescribed for other uses; ask your doctor or pharmacist for more information. Silver sulfadiazine comes in a cream.
As you seen in previous pictures, the om is wrapped up tightly with gauze. My only concern...they had three people performing the wrapping and it will just be Daren and I at home. This is gonna be fun with a squirmy baby.

I'm saving the BIG news from Tuesday for last of all. We learned that Willa comes home when she is only taking breast milk and off the IV fluids. The urine output is determined by measuring her diapers and that gives an indication of her fluid intake. Sadly, we were not given a timetable of when we can expect to take her home.

Home Again

Just wanted to let everyone know we are home from the hospital. Miss Willa had to remain in the NICU.  Even though we are home I want to continue to go through everything in detail.

Once the omphalocele was discovered during our 18 week ultrasound I scoured the internet trying to find all the information I could. Reading the blogs of moms like me really helped me plan, as much as that is possible, for what we were facing. I planned for the worst and hoped for the best. Each mom and baby story was different but I still learned something from each and every blog I found. The blogs helped me to know the sorts of questions to ask the doctors during the pregnancy and after the delivery.  These stories gave me an idea of the many tests I would have to undergo during my many hospital visits.  Some of the blogs were brutally honest and prepared me for the toll/strain of a marriage from caring for a sick infant -  driving back and forth from the hospital is stressful, the importance of communication, remembering to love each other b/c we have someone who needs us to be strong, and we still need to have a life outside of the hospital.  I was ready to face the many common complications associated with an om and how blessed we truly are with the potential simplicity for our treatment. Most of all the blogs reinforced my faith about how God will see us through.

So Daren and I are at home but I will do my best to try and recreate all we have learned and endured during our short time as parents to our little Willa Bean.

Sunday - Delayed Visitor Recap

Doing a quick backtrack to talk about the folks who stopped by for a visit. This is just for our memory b/c we lose track of time in here.

Colleen and April from Special Olympics let me know about two months ago they wanted to visit Bean while he/she was in the NICU. The ladies wasted no time in making their way to the hospital. I don't think we could have stopped these ladies. I think we got the call around 1ish they wanted to stop by. It helped they were going to bring us a treat from Cafe Carolina.

I didn't get very many people sharing scary pregnancy stories with me. The most common thing said to me was sleep while you can. Most ladies shared good advice. My neighbor Heather is one of these people. She shared with me the importance of staying on top of having a bowel movement...comfortably. Heather drank an entire bottle of Milk of Magnesia after having Lexie to get "things in motion." Late afternoon on Sunday Heather stopped down after her shift at the hospital.  After visiting Willa and walking Heather to the elevators she gave me the most amazing gift - a Fiber One bar. More on that later.

Dinner was served by Sally, Jonathan and toddler Jonathan. The food here at UNC is pretty good, but it doesn't compare to Los Portales. If only they could have brought me a margarita. Little Jon is a great window into the future of the fun yet to come. It was also great talking to Sally about how clueless I was about post-childbirth. Didn't know my uterus would bleed. I'm sure we discussed some other things but I can't remember.

Theresa was our last visitor of the night. We gave her a quick shopping list of some of the necessities we forgot. Pretty much all shower items didn't make it into the hospital bag that was packed by Daren. I wanted to take a shower soooooo bad on Sunday, but the nurses said I should wait until Monday morning to get the steri-strips wet. I'm a snob and I need my Dove bar of soap. Also, T brought me prunes. Again, more on that later.

That was a lot of guests and I was tired out by the end of the day. Remember, I had just started walking and that was a lot of trips to the NICU to show off our little Bean.

Ignore the mistakes. Daren has yet to read and this post meant only for our memory.

Monday - Medical Update

So if you've watched the video of Willa sucking her thumb you've heard me in the background talking to someone. Those folks were the doctors doing rounds. It isn't like how you see it on TV. It isn't a whole mess of people b/c not everyone can drop what they are doing and round together. We will have doctors pop in from time to time but the rounds is where we get all the details that we can't understand. Don't get me wrong, they stop and explain stuff to us, but it is waaaaayyyy more technical than how it sounds on ER or Grey's Anatomy.

Let me see if i can remember how it starts - Willamina Streett born 37w 4d now in her 2nd day of life...that is all I've got. Other bits and pieces make sense but most of the time I wait for the normal lingo at the end.  They have said her bili number is fine and for the time being she won't be a glowworm baby on a biliblanket.  I love we have one thing "normal" about our little girl. Fingers crossed it stays that way.

The big news that came from the Monday rounds was the replogle tube (removing fluids and gunk from her stomach) was going to come out and I would start feeding Willa. It was to be 10 minutes max and not a lot of fluids b/c so far she was only being feed by the IV.

I also believe it was Monday that Daren saw Dr. Adamson (peds surgeon) unwrap and examine the omphalocele. Daren estimated the om to be the size of his fist.

A few other random things we learned were about Willa's left foot being turned out. This is called valgus. I did a quick google -

In orthopedics, a valgus deformity is a term for outward angulation of the distal segment of a bone or joint. The opposite deformation, medial deviation of the distal bone, is called varus.

The terms varus and valgus always refer to the direction that the distal segment of the joint points.

This is nothing to be worried about. It could be b/c of positioning while in the womb. If the issue isn't corrected by itself they will bring in a peds ortho consult and potentially create a splint or do physical therapy. No time frame for this has been given. 

The second little random thing was they wanted us to know Willa has an extra piece of skin which we might notice when changing her diaper. I mentioned to to one of the NICU nurses and they hadn't even noticed. Anyway, if for some reason it needs to be moved they will consult peds plastics. Oh my goodness!

Again, Daren is sleeping so I'm going to post this before he wakes up. He has lots of proof reading to do!  Time to make the doughnuts feed the baby. 

Monday Recap

Wow!!! Yesterday was a very busy day. I'm not sure I will even remember everything. Daren put up the post about how we did our first feeding of Willa at 11am along with a video of her sucking her thumb.  The doctors took out her replogle tube b/c I was going to start feeding Willa. Once that tube came out Willa found her thumb for the first time.  My apologies you can hear me talking during the video. I was over talking with the doctors while they were doing rounds. The doctor asked me about where the name Willamina Grace came from.  I only thought Daren was taking a pic...but of course I love having the video. This might also have been when Daren changed his FIRST diaper.  I enjoyed watching him struggle with Willa. She didn't appreciate the amount of time it took for Daren to make the change happen.

As Daren said the first feeding went well. We are going slow to start and only letting her take in a small amount of milk.  We also have to fight to keep Willa awake. While feeding Melissa popped in and wished us her best and all her love.

Dr Evers came to our room not long after we got back. We updated him on everything which had occurred since we saw him on Friday evening. We also shared all of our pics and videos. Ladies - if you are thinking of delivering at UNC you should ask to have Dr Evers as your OB.

Our friend Danielle came by with lunch around 130 and kept us entertained with stories from her Tough Mudder (envision lots of obstacles, mud, logs, and something called an arctic enema) competition from Saturday.  It sounded super tough and fun.  Next Danielle joined us for Willa's second feeding at 230pm. Mom and daughter are both learning the ropes of feeding. The lactation consultants are there to help us out.

Honorary team member

Not long after Danielle left we had our first visitors from UNC Athletics. Stacey and Julie came by. Please be warned if you come for a visit you may catch me pumping in the room. Willa needs the milk and I'm not shy.  Stacey also thinks Willa looks like Daren.  Be on the lookout for a future blog with baby pictures to find out who Bean really looks like. Right now...I think she looks like a baby.

Jayne decorated our mailbox

I found Bellemont neighbors Jayne, Larry and Janine visiting in the room with Daren when I got back after showing off baby Bean my UNC ladies. I'm amazed the Little's waited as long as they did to come visit. They came bearing gifts and Bean's wardrobe of pink has started to accumulate. Jayne also "broke" into our house and finished all our laundry, pressed our laundry, emptied the dishwasher and washed the dirty dishes. I just don't even know what to say besides thank you. Once again I was back down to the NICU to show the ladies their little girl and I stayed behind for the 530pm feeding.

Back in the room we ordered our supper and visited with Melissa (her second visit of the day) before she headed home from the hospital for the evening.  I didn't realize it, but Melissa's OB is also Dr Evers and she has the same love that we have. Melissa also reinforced that breastfeeding/pumping is difficult and not to get frustrated b/c it will get easier.

The remaining feedings for the night were 830 and 1130.  We are still having to continually fuss with Willa to keep her awake. The nurses said this is to be expected b/c the nursing tires her out and sleeping  equals growth time.

Daren changed two more diapers since that first one in the morning. He is becoming a pro and hardly gets a squeak out of our little girl.

From L - R
Theresa Ramsey, Kaye & Sara Koenig, Shelly's family, UNC Olympic Sport Coaches & Staff

I'm going to come back and post some pics and have Daren do a proof read. He is still sleeping and I my breakfast is getting cold. Proof reading this post is not as important as me eating my omelet.