Monday - Bring on Dr. Bose

We were warned informed by the nurses about what to expect with Dr Bose as the attending doctor. Now, I already had a favorable opinion of him from when we did our tour of the NICU.  The ladies said that he will take a baby off of all monitors quicker than other doctors.  Dr Bose doesn't always "go by the books."

For rounds on Monday we had Dr Bose, fellow Dr England, and a nurse practitioner (who was new to us). Right away Daren and I could tell the difference of having Dr Bose on rounds v. Dr Price. Dr Bose questioned most everything we had been doing.  He didn't understand the schedule of breastfeeding/bottle and bottle/NG tube. Dr Bose said if I am here that I need to be breastfeeding. He apologized to Daren for taking away his bottle feeding job, but we need to replicate the home life as much as possible. Dr Bose also didn't think that bottle feeding was any less tiring than the breast.

Next we discussed the failed car seat test from Sunday.  The occupational therapist said mom and dad only live 20 minutes from home. Willa can take the car seat for more than that length of time. So Dr Bose declared the test passed. The nurse practitioner said we will repeat the test before discharge. Lots of smiles were being passed around the room.

Oh, and we are off all monitors. No big shock since the nurses said it was going to happen. It is great to be without any cords. Makes everything so much easier.

Our normal day in the NICU has been from 8am until just shy of 6pm.  I'm trying to push Daren to go back to work because I don't need him sitting with me in the NICU. I'm going to need him that first week at home when we are without all the extra helping hands.

Sorry but we don't have any pictures to share. We forgot Daren's cell phone, my camera and the flip video. I can't believe we have an undocumented day of our daughter's life :)

Blessings

Before little Willa, the song Blessings by Laura Story was associated with the love and loss faced by some very close friends of ours. This song was sung at their daughter's funeral.

Now this song is special for my little girl as well. While I was sleeping on the couch post-neighborhood party it was this song that started playing as I woke up. I feel like God is forever watching over us and it is for us open our eyes and see him and his blessings.

Please take the time to listen if you don't know the song.  Blessings by Laura Story

Sunday - Testing Out the Car Seat

I loved having that extra hour of sleep.  It was needed.  I had a great time seeing all of our neighbors.  I will say that many hugs is painful that close to when I needed to pump. Our household also became the dumping ground for all of the leftover goodies. I was not impressed when I saw a large box full of cookies, brownies, cupcakes and doughnuts. I said all of that stuff can get brought to the folks in the NICU. They can have the calories. We also had multiple people stop by and thank us for the food. Everyone loves free food.

Nothing new from the doctors rounds.  Willa's weight continue to fluctuate. Her feedings are going really well and she is doing good with the new feeding schedule. Surgery has signed off on her discharge but we are still waiting on the doctors to give the same approval.

Fiddling with the straps

The most exciting part of the day was testing out the car seat.  Willa needs to be able to sit in the car seat for 60 minutes without having any drops in her heart rate or oxygen saturation. The funniest part was watching Daren and the woman from occupational therapy try and figure out how to adjust the belts. They even  pulled out the manual. I had fun snapping pictures as Willa is staring at them wondering "why are you torturing me". We didn't pass the test because the monitors started beeping around the 40 minute mark.  The car seat will be reassessed and potentially have some padding added to assist in how she sits in the seat. The other option would be for the hospital to send us home with a car bed.

Start the timer

 I also made sure to take the time to straighten my hair and put on makeup so I could get a picture with Miss Willa. We even snapped our first family picture.

Saturday - Turtles in a Half Shell...Turtle Power

The turtle jokes and comments just keep on coming.

The mood in pod B is very lighthearted. This is our second day with the same nurses in the unit. We are having a good time. Pod B is known as the library b/c of how quiet it is...that name might change while the Streett family is taking up residence. Even Daren is opening up. He made the comment to me that Willa looks like Grimace from McDonald's. I had to side-eye that comment and let the other ladies know what he said. They couldn't remember Grimace until I showed them a picture. Daren got a few head shakes...but it was really bad when he said she was pear shaped. I scolded him and said don't you ever tell a woman she is pear shaped.

Doctors rounds on a weekend are short and sweet. One thought being tossed around is that Willa's quick shallow breaths could being tiring her out and play a part of her inability to stay awake for feedings. The doctors said her lungs could be slightly undersized due to her being born at 37 weeks.  There is also the possibility the weight of the omphalocele and the addition of the shell can make it difficult to breath.

Bili numbers came back and we will not have a glowworm. This test will not be repeated.

Daren learned a new position for feeding Willa.  The nurses in the NICU are able to feed a baby a bottle and work on the computer at the same time. I told Daren I expect big things out of him with all of this expert training. It is much easier to get pics of Daren than it is of me. I'm pretty much always hanging out behind the curtains either feeding or pumping and I'm not gonna let anyone take a picture of that scene.

The pump is always nearby. 

My eyes are actually open!!!

We headed out a bit early on Saturday to join our neighbors and friends for a cul-de-sac party. It was good to see everyone and realize how many new people there are in our neighborhood. I was a good girl and came inside for my 8pm pumping session and didn't go back outside. I plopped down on the couch to try to catch up on some TV and I think I feel asleep by 9pm.

Turtle Shell

On Friday Willa was fitted for her prosthetic to assist in compressing the organs back inside her abdomen. The prosthetic looks like a frisbee but when it is on Willa she looks like she is wearing a backwards turtle shell.

The turtle shell sits atop the wrapped omphalocele and is held in place with a strap and some strong velcro. The velcro will be tightened slowly over time. The only time we are to remove the "shell" is when we need to change her om dressing and for baths.

One thing, the shell will make certain clothes impossible for Willa to wear. One item we quickly nixed was the open sleeping gown with elastic at the bottom. Not easy to stretch the elastic over the hump of the  shell. We had our first diaper mishap due to the gown. I'm unsure if she could wear pants and a top. The shirt would have to be a larger size than the pants. I think most shirts would look like a crop top.

Friday - Our First Letdown

We got home early Friday morning after our eventful night in the sleep room. I had soooooo much energy. I got a jump on making cupcakes for the neighborhood bonfire for Saturday. I was cleaning up stuff around the house. I started making lists of things we needed to buy at Target and Buy Buy Baby. Heck, we didn't have newborn diapers or clothing in the house b/c we didn't expect to have our little girl home so soon. Daren did convince me to lay down for a nap. I was knocked out for an hour before I was out of bed and back to the madness.

We got to the hospital around 5pm and got the news that feedings did not go well during the morning. Willa would not take the bottle and the nurse had to insert the NG tube for feedings. This meant she was not coming home on Sunday.  This was a big letdown but we were not surprised. I hadn't been super confident about the feedings b/c it was such a struggle to try and keep Willa awake.

The new feeding plan is that we are back to every three hours versus when she is waking up hungry. Switching from breastfeeding and supplementing with the bottle to bottle feeding and supplementing with the NG tube. The doctors thought this method would save some of Willa's energy. Willa also has a tendency to take short fast breaths which could also contribute to her getting tired more quickly.

We stayed in the sleep room only to nap b/c we stayed at the hospital until 2am.  I really wanted to get Willa started on the new feeding routine.  One other note from Thursday was Daren gave Willa a bath. I had to sit this one out b/c I think I suffered my first energy crash. My refusal to slow down and rest finally caught up with me. It was at this point I realized I need to sleep more and take care of myself as far as eating and drinking between feedings. This little girl is going to need me a whole lot more once we are out of the hospital.

Meal Sign Up - From Layna

Shelly and Daren have received wonderful support from friends and family wanting to provide meals to them while Willa is in the hospital on into when she gets to come home.  We know that Shelly has pushed those requests aside not knowing when her or Daren would be home each night.  So, we have come up with a Meal Sign Up Sheet that you can sign up to bring them a meal.  Please find the attached spreadsheet below.  You do not need to sign in to anything to sign up.  Just click the link and put your information in on the date you will be able to provide a meal.  Also, when you type something in, the spreadsheet will automatically update.  There is no need to save.  If you need to make changes, you can come in at anytime to do so. 

Since Shelly and Daren do not know what time they will be home each night from being with Willa, there will be a large cooler on the front doorstep of Shelly and Daren’s house behind the lighted palm tree and rocking chairs.  On the day you are signed up, please drop off the meal by 6pm.  This way, Shelly and Daren can get home some nights at 9pm and still have a meal ready to just reheat.  If you are not local and would like to send them a meal, you can order for the meal to be delivered to Layna Langley’s house at 7 Silverwood Ct, Durham, NC 27713.  She will be able to drop it off to the Streett’s for you.  Please make sure to text or call her with the time of delivery – 919-607-8449. 

https://docs.google.com/spreadsheet/ccc?key=0Ag4sZFF3DwlfdHdZUnd1SV9SUnh5RHBrUGpWalBuM3c