Pleasant surprise

Found this in my freezer. I have no doubt Sheena told me about it, but I don't remember. Very pleasant surprise to find in the freezer!

Visitors

The last day, dec 6, in the hospital we had visitors. Mom and Dad came to visit. Dad had an appointment. Mom hung out until he was done, and then he hung out too. They watched Olivia while I got a nap. It had been a sleepless couple of nights since Olivia couldn't bottle while they monitored her on the continuous drip. She was quite hungry and fussy.

Dad got a nap too!

A gift from grandpa and grandma

Hi grandma! 

That's a funny lookin hand!

Burping is hard work!

Settling in

We were released from the Children's Hospital in the evening on dec 6. So far, the formula seems to be working. They had done an upper GI tract X-ray when we were there and had seen she has reflux issues. So now she is on Prevacid to help with the heartburn. It does not stop the spit ups. We've had some issues with evening meals. She cries while eating. We are going to see how the next week goes since she's only been on the formula and Prevacid for a week. While we were in the hospital, Olivia pulled out her feeding tube after we started bottling her again. The doctors said to see how well she ate through the night. She did well enough we left it out! Good job, baby!

Now we have set a record for days back home. Six days in a row! We are settling in. Lots of sleeping and little cleaning! Haha.

You see this thing sticking out of my nose?

I have plans for it. 

Free and clear!

Trial update dec 5

So far the formula is going well. She's been on a slow continuous drip feed through the feeding tube, so that we are being gentle with her insides and not hammering her with it. We've had some set backs as her digestive system catches up. These included a small throw up and feeling uncomfortable when she got too full because her intestines weren't emptied out yet. So her swollen belly has finally started to go down with the help of some good poopy diapers. They said it takes two weeks before they rule out that the formula is or isn't working. So hopefully this will be her solution.

Hey you! Ya you! I got somethin to say!

Hold that thought, I'm a little busy. 

This is the life. ESP: Eat.Sleep.Poop

Sorry to disappoint, but I have a date with the doc tonight. I'll call you later. 

Hi! It's me calling! Did ya miss me? 

I'll be at your place for supper 8:00 on the dot. You can even cook!

Oh you're making spaghetti? My favorite!

Mmmm yum yum

And apple pie for dessert?!?!

I'll cancel the date with the doc and be there pronto!

Once upon a time in a faraway land...

Trial

So they still don't know what's wrong, but we are going to try putting her on EleCare formula. If she tolerates that, does not vomit, and does not get bowel distention; then we can try going back to breast milk. They want me to try taking dairy out of my diet to see how she does being reintroduced to that. They don't know if that is the cause, but some babies can't digest the proteins carried through breast milk from other milk.

Pacifier to the rescue

We are back in Sioux Falls for the same unknown issue as last week. They numbed her hands and inside of her elbows to try to get an IV going and ended up starting one in her foot. No numbing cream there! Figures!

Tomorrow we will see a GI specialist and see what he says. They are giving her a continuous slow drip feed through her feeding tube through the night to see if she can tolerate that. That's all we know for now.

Stranger

Well, this marked our 6th non-consecutive day at home. We are on the return trip to Sioux Falls ER in Wonderful weather! ;) Olivia has not been keeping any food down today again. Good thing I haven't unpacked our bags since the discharge from the nicu. We are strangers in our home.

Home again

Thursday evening we started feeding Olivia by mouth(aside from IVs), and we stayed in the hospital until Saturday morning. Everything was going fine, so we were discharged then. That afternoon she had a small vomit for me and a couple spit-ups. She also was more fussy. So Wes and I switched her feedings to every 2 hrs at 40cc. The day total is still the same, just more frequent feedings with smaller amounts. She seems to be handling that better.

Also since she was emptied out, she has been bottling very well! One or two feedings she'll only eat 20cc, but now she usually eats 35-40cc every two hours. So maybe this was the wakeup call she needed. We have a follow up appointment with a pediatrician in Sioux Falls on Monday. Hoping he okays removing the feeding tube.

A gift from the hospital. 

"Homeward bound!" 

Welcome home

We got home from the nicu Monday night, November 25. Tuesday night Lowell and Sheena and the boys brought us pizza for supper! Yum! Haven't had pizza in ages. They also brought the curio we bought from Val's Interior Motives. Sheena had seen it there one day and told me about it. I checked it out, and it was exactly what I wanted! They also gave us a bouquet of flowers! What a nice welcome home surprise!

Oh and Sheena helped me clean out the fridge! Surprising what turns up when you're not home for 3 weeks. Thanks for the fridge cleaning motivation, Sheena! And for washing the dishes after!

Buggy we are using from Mom and Dad in our bedroom. Daddy slept in this as a baby!

We added in some burp rags when she started vomiting. 

Wes' contraption for the gravity tube feedings. 

Chaos

After a chaotic past two days at home, we find ourselves back in Sioux Falls in the Children's Hospital. The first night at home went well even though we were still figuring out feedings. Tuesday Olivia started throwing up at 3 of her feedings. That night did not go well either. She was very fussy which is quite unusual for her. Wednesday she had throw ups at 4 of her feedings. The last feed she bottled 20cc, I leaned her over to burp, and she puked it all up. We took her to Rock Valley ER to X-ray to make sure the feeding tube was still in place. They forwarded those to Sioux Falls, and the ER doc up in Sioux Falls recommended we come up. They had seen that her bowels were distended on the X-ray.

We arrived in Sioux Falls at 8:30pm. After 3 pokes, a pair of pediatric nurses finally came and found a vein, drew some blood, and started an IV. The results from the blood draw all came back good: no sign of infection, white blood cell count good, etc. They had tried to get a spinal tap to get fluid to see if there was any infection around the brain or meningitis. They couldn't get it, and they thought once the IV had started they would have more luck. But thankfully they cancelled that since the blood results were good. They also took additional X-rays.

They asked if we noticed that Olivia's stomach was bigger. Neither Wes nor I had even thought to look. We only knew she wasn't keeping food down! Now that they told us, we could definitely see it. We could see the bumps of her intestine as it wrapped around because it was so swollen. They told us it was full of air. They inserted a tube to suction all the air out. After that she had 4 large dirty diapers! She hadn't had a large one since we'd been home.

They've done an enema and taken more X-rays, and they still don't know what caused it. After her 4 large dirty diapers and not eating (just getting IVs), there was a noticeable improvement in her stomach getting smaller. The drs compared the latest X-ray from the one when we arrived and decided we could start her bottling again in smaller doses. So through Thursday night we bottled 30cc or 1oz every 3 hrs. At the 6:30am feeding we got the Ok to start feeding 60cc. We are monitoring her stomach and throw ups. If she has any vomits or her stomach is getting bigger, then we will stop feeds and do more tests.

Waiting in the ER room after getting IVs. 

Getting ready for ct scan

Olivia has feeding tube and suction tube in her nose and IV in her hand. We are loving the pacifier and clip Sheena gave us. She needs it a LOT with all the pokes and prods. 

Nov 26

Well, it's official. We are home! Olivia still has the feeding tube in, so last night and today we spent figuring out the best system. We don't have a pump like the hospital used, so we are doing it by hand using a syringe to push into the feeding tube.

The nicu told us to only have 6 people hold Olivia and everyone else can WASH hands and just look! They recommend this for the next two months since she is/was a nicu baby.

She had her first well child check with our local doctor to watch her growth and give shots/ immunizations.

There literally is no sleeping anymore. With the feeding tube time there ends up being about 1.5hrs between feeds left since we feed every 3 hrs. It takes about 1 to 1.5 hrs to feed her each time. I'll let you do the math.

Leaving!

Day 24

Yesterday the doctor did rounds and had the feeding tube put back in. Olivia was losing weight just on her own. So now we put 60cc in a bottle and whatever is left after she eats gets put through the tube. Now we are bottling her all 8 feedings.

The doctor came and talked to us today and will be discharging us tomorrow. Olivia will still have the tube, but since she had no other complications the doctor is fine with us using the feeding tube at home. We will have to come to Sioux Falls for checkups while she has it in. Also if she pulls it out, we will have to come up here to have a pediatrician reinsert it.

She had an MRI done today of her brain to check her out and make sure everything is ok there. We find out the results of that tomorrow.

Car seat test

Nicu video

http://shine.yahoo.com/parenting/dad-films-premature-son-s-miraculous-first-year-185522631.html

Thought this was a neat video. Makes me appreciate how good Olivia is doing.

Day 22

The night feedings went well. The doctor wants to see how the next day and night goes(today and tonight). They did a hearing test today. It's mandatory for every kid in the nicu. She passed. Next she'll have to do a carseat test to monitor her oxygen levels. That's a 90 minute test in the carseat.

Day 21

The doctor did rounds when I was in the room again. We decided to take out the feeding tube to see if Olivia takes over on her own. They will leave it out 2 days and monitor her feedings and her glucose levels. If she is losing weight and obviously not eating enough, they will put the feeding tube back in.  They have tried this before with kids and some do take over and some don't. We took it out at the 2pm feeding.


She ate 35cc, 26cc, 40cc, 22cc at 2am, 8am, 2pm, and 7pm. 11am was her last full tube feeding. 2pm we took out the feeding tube, so we'll see how the night and next couple days go.

Onesie #5 right before feeding 

Day 20

She had her hepatitis b shot last night, so not sure if that affected the next feedings. At 2am, 8am and 8pm she bottled 15, 15, and 10cc.

Day 19

I was in the room when the doctors did rounds today. They said she gained 1lb in a week, and that was "generous." So they lowered the 150cc per kilo down to 130. If she still gains weight, they'll lower it more. So now they multiply 130 kilo times her weight, divided by 8 feedings a day. This is her new total at each feeding. So right now she's at 58cc total. She was over 60cc with the 150kilo.

2am she bottled 35cc, and at her 8am nipple feed she slept through it. Lactation came and observed me again at 2pm, and she nursed 6cc. At 8pm she nursed 2cc. (First the scale said zero, and after reweighing it changed to 2cc)

Onesie #4

If you have been wondering: physical therapy came last week and gave Olivia a 'noggin' to sleep on. They said she had a flat spot in her cheek from how she laid in utero. I don't notice it, but they said it is getting better. They also said she needed it to gain more neck mobility as she always laid the same direction and her muscles were tight on one side of her neck from that.

The pink thing is what they call the 'noggin.'

Day 18

She ate 30cc at a couple feedings, and the doctors increased her bottle feedings to 35cc. They also prescribed(?) a heat lamp to dry out her bottom and get rid of her diaper rash. We tried using just water on cloths(instead of wipes) and a better rash cream, but they didn't help.

The physical therapist came before the 2pm nursing time to show me ways to wake her. Even then we struggled to wake her, and she didn't stay awake for very long. I think the scale said 2cc after nursing. Nursing at 8pm she seemed to eat a lot, but the scale said she lost weight again! Must be a lot of work for her! Haha.

 Air drying (heat lamp at top of picture)

 Onesie #2 - "Giddyup Horsey!"

Onesie #3 - little birdies. Had to take my only opportunity to get a shot. 

Looking back

After my surgery(4am or so) after Olivia was born, they wheeled me on my bed to her room in the nicu. I don't remember seeing her like this because I was out of it, and I'm glad. That morning, I suppose 8 or so, they removed the breathing tubes, they said. When she was first born, she grunted when she breathed. They said this was due to fluid in the lungs. She had to be on the breathing machine just through that first night. I don't like to see her like this, but look how far she has come from that!

Day 17

Well the 2am and 8am feedings she ate the full 30cc from the bottle. She ate only 20cc at 2pm as she was tired. Nursing at 8pm was a no go. She was quite pooped(literally and figuratively -ha!). They might increase her bottle feedings to 40cc tomorrow.

No explanation needed. 

Her shelf of elephants from her aunties. 

Day 16

She ate 25cc at 8 am this morning! The scale said 4cc after nursing at 2:00, and negative(she lost weight) after nursing at 8:00pm-haha.

She seems to be more wakeful during nursing the past couple days but still gets pretty worn out.

Brings new meaning to the term "toothless grin."

Day 15

Today is day 15. We are missing out on Olivia's cousin's' birthday party! Hope he is having a blast!

Too tired for the usual nipple feeding at 8am, so the nurse gave her a bottle at 11. She ate 25 of 30cc!!! They upped the bottle feeds to 30cc this morning. Total she is getting 62cc(remainder goes  in the feeding tube). Nursed at 8pm and got the hiccups! So didn't do too well. Scale didn't register that she ate anything, but I think she did get a bit once we got rid of hiccups.

So they upped her total from 60 to 62cc. They have a goal of 150 calories per kilo per day. So they multiply 150kilo times her weight. Then they divide that by 8 feedings a day. Her current weight is 7lbs 4 oz. That's how they are at 62cc now.

I wasn't feeling well this morning so went for a checkup. They think I have the start of a bacterial infection in the uterus. They put me on antibiotics. Hopefully they kick in soon.

First time wearing a onesie from home!

Day 14

Well day 14 she bottled 20cc twice at 2am and 8am, so the doctors increased her nipple feeds to 25cc! We'll see how she does with that tonight! The physical therapist came to work with her and stretch her. She woke up from that, so I tried nursing (at 11:00). She fell asleep in 5 min(little stinker) but ate 4cc at least! So I decided to go back to our usual 8pm nursing time. We skipped the usual 2:00pm time since she just nursed at 11. She ate like a champ at 8:00. 10cc! IF the scale is accurate- ha!

Here she is ready for her 8:00 feed!

Info

So I guess I'd better give a little explanation. Olivia is in the nicu because she is not feeding good on her own yet. She has to get supplemented through a feeding tube. This is because a) she was preterm and b) she is baby of a diabetic mom. I guess it's pretty common. So she has 8 total feedings a day in a 24 hr period. Of those 8, 4 of them are nipple feeds, which means from a bottle or nursing. She is supposed to eat 2oz per feed, but when she nipples, she only eats 8-20cc. There are 60cc in 2oz. So she only nipples a fraction. So then the amount left that she didn't nipple feed gets put through her feeding tube at that same feeding. Also the nipple feedings are every other time. In between she is so tired she just sleeps through the other feedings and then they just give her the full 2oz or 60cc through the feeding tube.

Hope that makes sense!

Another mom told me the other day(her daughter has the same struggles as Olivia) that she was told it's like a flickering light bulb. She feeds good one day and then not so good the next. Until one day the lightbulb turns on and stays on. So that's what we are waiting for! We are on Olivia's time!

Mom update

I had a checkup today. They removed one suture knot of 3(the other two were too painful) - ouch! Now I need to sit on a pillow again. They also weighed and said I'd lost 14% of my body weight since nov 1! Ha and I have ANKLES again and KNEES! I had to ask Wes if they looked this bony pre swelling cuz I don't recognize them!

We are staying at the Ronald McDonald house at night all week. Wes went back to work:( but comes up in time for the 8pm feeding and then goes back in the morning. Olivia and I miss having him up here with us all day.

Other than that it's slow but sure progress.

Day 13 some photos

The 8pm nursing went well, but the scale showed weight gain at 2cc. So I'm going with my gut that says she ate more!