Our Little Family: Update

June 14

Ethan decided (after asking my permission) that he needed to go back to work for a couple of days.  He has been gone since Wednesday and will be back tomorrow morning.  It has been rough not having him here to help, but I understand he needs to work.    

I went back to the Ronald McDonald house for dinner, was gone for an hour and I come back to find Hannah tubeless…again.  Yes, that’s right she pulled out her NG suction tube; surprise surprise.  The doctors decided to keep her tube out and see how her tummy does without it.  I hope we will be able to keep it out, she is much happier without it.

So, I always get comments on how much milk I have, it wasn’t until last night that I realized just how much.  Hannah’s nurse was chuckling and saying how she hoped we had a deep freezer at home because we were going to need some place to store all my milk.  I told her we had just bought one for this specific purpose (we had been looking for a good reason to buy one).  The nurse then told me that we would need several coolers to take home the milk we have in the freezer.  After teller her they only had half of it (the rest is being stored in the NICU freezer because of lack of space). I needed to get some of it home, now!  I realized we aren’t going to have enough room in the car for all the coolers it would take to bring all my milk home.  So I put the word out to my Fort Wayne friends that I needed help and I got a response almost immediately.  Some of my Fort Wayne friends were coming to Indy that night for the Mormon Tabernacle Choir concert!  So I sheepishly asked them if they could take a few coolers of milk back home with them and give it to Ethan to put it in my freezer.  I have such amazing friends, thank you soooooo much for doing this for us. These wonderful friends didn’t get back to Fort Wayne until 2 AM! Thank you again! Ethan then stayed up until 3 AM and organized the milk into the deep freeze. I have such an amazing husband.   

We can fit about 20 bottles/pink bin, we emptied 21 bins; that was all we could fit in the two coolers.

The two coolers we packed full of milk

 Here is just one of the coolers we dumped out onto the floor

It has only been a month and the freezer is already getting full, oh dear

Hannah is struggling to stay asleep at night and it is only getting worse. I wouldn’t sleep either if I was as hungry as she is (she is going on 4 days without any thing to eat).  I would get her to sleep and go and lay down. By the time I had lain down, she was screaming.  I was trying to figure out how to sleep standing up while bouncing Hannah when the sweet nurse came up with a better solution.  She told me to go to sleep and she would take Hannah out to the nurse’s station with her.  This was only possible because she was no longer on the suction NG (its hooked up to the wall).  She kept Hannah out there with her from 1:00-6:30 AM and let me sleep!  Each of the nurses took turns holding Hannah and bouncing her in a bouncy seat.  I am so grateful for the wiliness of these nurses to take care of my baby girl so I could get some sleep.

June 15

During rounds today the doctors decided we need to put Hannah’s suction NG back in.  Bummer. Originally they were going to keep it out and see how she did without it, but after some discussion they decided she needed it in for the remaining 3 days of being NPO (Nil Per Os or nothing by mouth).  They need to keep her bowels empty so they can continue to take a break and heal completely.  I was sad that we had to put it back in, but I know it makes her belly much more comfortable to have it sucking everything out (including air).

Ethan came back today! He showed up early afternoon. What a welcome sight. Not only is he seriously good looking he is also an extra set of hand to take care of baby Hannah. Ethan was so sweet and let me take a nap until it was time for dinner.

Hannah has calmed down a little this afternoon because she pooped!!!!!! I know that doesn’t seem very exciting and could be considered gross to the majority of the population, but the kid hasn’t pooped since Monday the 10^th! Her poop didn’t have any blood in it as it had on Monday.  This is a good indicator that her intestines are healing.

They placed her NG tube back in and got an x-ray to check placement as well as to see how things were looking down there. They said that it appears the NEC is gone and it looks like a lot of the air that was in her bowels (gas) seems to have dissipated. Now all we need is for her to be able to feed again. A baby with a full tummy = happy baby = happy mommy = happy daddy = happy family.

We had given Hannah a blessing the night we found out she had NEC, it is amazing to see how well she has recovered since then.  Her bowels almost immediately began to heal and now it appears she has gotten rid of it completely.  I am so grateful to know that my Heavenly Father is there for us and knows what Hannah is going through.  What a blessing it is to know that He can heal her and help us get through this challenging time in our lives.

Last night Hannah slept better than usual. She went to bed, in her mamaroo, around midnight and slept until 3. She went back to sleep at 3:45 and slept until almost 8 o’clock. Her vital signs look great.

June 16

During rounds this morning the doctors didn’t have much to say, which is a good thing. They talked about starting her feeds on Tuesday and how we will be starting her out really slowly to make sure her body handles the food.

Ethan is so good to me; he let me take a nap AGAIN while Hannah slept today. I think I was asleep for 3 hours!  I felt bad that on father’s day he let ME sleep, what a great hubby I have.  It is amazing how much better you feel when you are not running on 4 hours of sleep all the time!

June 17

Hannah was very cranky last night.  We were up most of the night with her.

Today marks Hannah’s 7^th day of being NPO.  The doctors decided to wait until tomorrow morning to start her on feedings.  They wanted to have a full staff of doctors on the unit to watch her to ensure everything goes as planned.

June 18

Last night was rough, Ethan stayed up with Hannah until 2:30 and then I took over at 4 when he started falling asleep while holding her. What a long night. Ethan spent most of the night holding Hannah while bouncing her. He is thinking of creating a workout video of how to stay fit with a newborn. Sadly this video will come with a disclaimer that these workouts can only be done in the dead of night while you are half asleep.

They took out Hannah’s suction NG today, but then immediately replaced it with a regular NG so we can start feeds!...well kind of start feeds.  She is starting at 3mL an hour and it runs over a continuous flow into her NG.  The doctors are saying they want to start very slow and will increase her feeds every 8-12 hours.  We started her at 11 AM and didn’t up the volume until 8 PM tonight.  She is now up to 6  mL and hour.

June 19

Another rough night, I stayed up until 2:30 and then Ethan took her until 4.

Rounds this morning were pretty uneventful, with the exception of the doctors being scared to touch Hannah.  She was sound asleep and they knew if they woke her up I might turn into a monster and rip their heads off.  They all chuckled and said they would come back and check on her later today.  They did say they will begin to increase her feeds every 6 hours now.  So as of 10:30 this morning she is up to 9 mL/hour. 

Hannah had a good rest of the day. She slept. She ate. She pooped. She cried. She fell back asleep. She ate some more…..etc….etc…What a boring life.

June 20

Last night was better (finally); I only had to stay up till 12:30 with Hannah.  She slept until 4 when Ethan took over.  The rest of the morning has been pretty successful.  Hannah is now up to 21 mL/hour and the doctors have indicated that at 2 PM today they will increase her feeds to 23 mL/hour which is where she was at before all of this happened. If she is tolerating the feeds they will start fortifying my breast milk with formula. We had a long discussion with both the pediatrician and the nutritionist about some other formula options which might be easier for her to digest.

Tomorrow morning they will take another X-Ray of Hannah’s gut to make sure all is looking like it should. If it is they are going to have speech meet with us tomorrow so we can try bottle feeding again. We hope and pray that we are on the home stretch and we can go home next week.   

Jack update

Jack had a blast at the family reunion in Alabama last week.  I was told he wore everyone out.  They adults would play tag with each other; one would take Jack for a few hours and then tag someone else “it” and then that person would take Jack for a few hours and so on.  Even with the adults taking turns everyone was pretty worn out by the end of the week, including Jack (surprisingly, that kid is like the energizer bunny). 

Jack still isn’t a fan of the deep water…or the horn on the boat.  He would cry every time they honked the horn or tried to take him in the water.  So, Jack spent most of his time playing in the shallow water where he could throw rocks and sticks in to make a splash.  I wish we could have been there to play too, but I am so glad Jack could go have fun.  It makes it a little easier to be away from him knowing how much fun he is having.  It is looking like Jack will stay and play in Alabama with Nana and Papa until we go home, which will hopefully be next week!

Jack on the boat at the lake

  

Playing with Nana

Playing in his tunnel made of pillows

The only picture I have of my two kiddos, Jack kissing baby sister goodbye before I went into the hospital.

My little man was in desperate need of a haircut, so Nana took him to get one.  What a stud!