1mo Doctor Appointment

Today we saw Dr. Sonya. She said everything was looking good and that, if the download report looked good next week, we should be able to get you off of the monitor. What a relief. You've gained almost a full pound in the past week, you're definitely a Robertson! Height was 21 inches and weight was 8lbs 12oz Head circ.: 37 1/4cm

What a Big Girl!

Today we put you in your regular car seat. You did just fine in it. Slept the entire way to the restaurant we had lunch at and the entire time we were there. You're such a big girl, growing so fast. Your umbilical cord finally fell off tonight. Now we can give you a real bath with good smelling baby bath wash.

Doctor Appointment

Lili was an angel all night last night. She only cried when she needed to eat or have her diaper changed. She was also awake much more last night and today. We saw Dr. Sonya today and she said to go ahead and discontinue the Caffeine and to do another download next week so she could compare it to the previous download. What a relief! I hope she continues to be content now that she's off of it. Today (4 days after the last doctor visit) she weighed 7 pounds 14 ounces - that's an 8 1/2 ounce gain!!! She measured 21 inches. Head Circ.: 36.25cm

What a Temper!

I spoke with Dr. Lori again today. She said it was okay to not give her the dose today or tomorrow and we'll see how she's doing at her doctor appointment tomorrow. She cried for only about 4 1/2 hours last night...at least it dropped a couple of hours. She set off the high heart rate alarm overnight while she was crying and again this afternoon while we were driving home from my appointment with Dr. Olt, and a third time this evening while I was preparing a bottle...what a temper.

Second Monitor Alarm

I called Dr. Lori this morning to see what we can do about the Caffeine and all the crying. We downloaded her monitor today and the doctor will decide if we need to stay on the medicine or not...I'm praying not. I'm a bad mom and only gave her half a dose today...she's been a little happier. We set off the alarm again today while she was eating...taking after daddy and gulping her food.

First Monitor Alarm

Last night Lili cried for over 5 hours. I don't know what I'm going to do if this keeps up. It's definitely not good for her or me. She set off her apnea alarm this afternoon while she was napping. She decided to sneeze while she was stretching and apparently held her breath a little too long. She corrected it on her own though, so that's good.

2wk Doctor Appointment

Today we saw Dr. Lori Simenauer. Lili weighed 7lbs 5.5oz, so in the week that she's been home, she has gained almost 6oz. She was measured at 20 3/4 inches long. Not too bad. The monitor has gone off twice; both times she corrected the problem on her own...thankfully! We've really had some tough nights lately though, she's cried constantly. She's on Caffeine Citrate...to stimulate her lungs. I'm thinking this is what is causing it, because they didn't give it to her until her last day in the hospital and it's the only thing, other than location, that has changed. Head Circ.:35.75cm

(Side note: This picture is from our first night at home...that would be Papaw Tom holding her.)

Doctor Appointment

Today we saw Dr. Sonya Simenauer. Lili weighed 7lbs 1oz and measured 20 1/2 inches long. Head Circ.: 35cm

First Day at Home

We've now completed our first night at home and the monitor hasn't gone off once!!! I'm so relieved! It feels so good to be at home, even if I am sleeping on the couch.

Day #9 ~ Last Day at OSF and First Night Home

Lili failed her first, second, and third car seat test earlier today. The fourth test we took in a Angel Seat Car Bed. SHE PASSED!!! At 6:00pm we all left the hospital together. She's on a monitor, which hasn't gone off at all since her earlier car seat tests, so everything should go smoothly from here on out. (Crossing our fingers.)


Everything went fine for the third car seat test and we were finally able to bring Lili Jo home.
The Grandpas and Grandmas both met us there to welcome her.

Day #8 at OSF

10:00am - Infant CPR training and 2:00pm - Monitor training...YEAH!!! We're done with that! Dr. Ramiro, the new doctor that is seeing her in the newborn nursery, has now decided that after reading her monitor downloads from the past couple days that she has apnea. (...well duh, we already knew that!) Anyway, she has decided to give her Caffeine Citrate starting this evening until tomorrow afternoon. They will then redo her car seat tolerance test and see what the monitor says. Doctor said it may not be tomorrow that she gets to come home, the caffeine might need to be given for a couple of days. (I didn't take the news of one more night well. Will this ever end?) I'm so frustrated! I can't stand this any longer. I don't want her to come home before she's ready, but I can't stand leaving Bella each day since she doesn't understand why her mommy keeps leaving every day for the entire day. I can't stand to spend the day at the hospital with Lili and then leave her there each night. But hopefully it will all be over soon.

Day #7 in the NICU

Everything is still going smoothly. The monitor very seldom goes off, and when it does it's just the pulse-ox measuring her oxygen level and she usually corrects that on her own. She's eating very well and is generally a very happy baby. I'm spending as much time as I possibly can up there with her. The did a Car Seat Tolerance test today (where they put her in the car seat for 1 hour and watch to see if she sets off any alarms.) She failed it within the first 5 minutes. They said they'd try one more time before we go home. If she fails it again, we'll have to use a Car Seat Bed. When she comes home, they will also have her on a monitor. Dr. Hocker thinks it will only be for about a month though. I feel so bad leaving her there at the hospital and also feel bad leaving Bella wherever it may be for the day and/or night. I'll be glad when this is all over with. The NICU called tonight to tell us that they were transferring Lili from the NICU to the regular newborn nursery because she was so stable and was gaining weight well, so there wasn't as much need for the constant observation.

Day #6 in the NICU

We spoke with the charge nurse in the NICU and aren't able to schedule the CPR and monitor training until Monday, so it looks like we won't go home until then.

Day #5 in the NICU

The doctor thinks that she might possibly be able to go home tomorrow as long as we can get Infant CPR training and monitor training.

Day #4 in the NICU

Lili is doing much better with her eating and hardly spits up at all now. She's finally eating enough consistently that they were able to take the IV out.

Day #3 in the NICU

Dr. Olt released me from Proctor first thing this morning. I finally got out of there around 10:00am. We went to Walgreens to pick up my pain killers and headed straight to OSF so I could see my baby girl...FINALLY! Lili's doing better with coordinating her eating and breathing. Her spitting up seems to be less frequent as well. They had to put an IV in her head last night because the one in her hand was getting too loose. The nurses have noted some periods overnight that she decides she doesn't want to breathe. They are thinking she may have apnea, but that it should resolve on its own as she grows.

Day #3 in the NICU

It's tough dealing with Lili being at a different hospital than me. It still makes me cry, but I'm handling it better today than I did yesterday. Daddy and the grandmas are going back and forth from the hospitals to see Lili and keeping me up to date on what's going on. Lili isn't having any trouble breathing, but the doctors are now concerned because she's not keeping the formula down. They are thinking possibly reflux. She is also still having some trouble breathing, her oxygen level keeps dropping while she's eating (she gulps her food just like her daddy...who needs to breathe while they eat?)

Meet Lilian Josephine

Head Circumference: 34.5cm Chest: 32cm Today we welcomed you into our family. We arrived at Proctor hospital a couple minutes after 6:00am. After getting my IV, an epidural, and being prepped for surgery, we anxiously awaited Dr. Olt's arrival to get things started. Dr. Olt arrived shortly before 8:00am. At 8:10am we heard your cry for the first time. It was such a happy moment.

Daddy went with you to get cleaned up and checked out while Dr. Olt finished the surgery. I was finally able to see you around 10:00am, after spending my time in the Recovery Room. I was able to hold you for a few minutes before they took you back to the nursery. You were diagnosed with a Pneumothorax, a small hole in the lung that was letting air pocket between the lining and the lung. This made it difficult for you to breathe. At around 3:00pm, Dr. Lori Siminauer stopped into the room and told us that they were transferring you to the Children's Hospital of Illinois at OSF Saint Francis.



When the ambulance arrived to take you to the NICU, Daddy went with you to make sure everything was okay. At around 6:30pm a nurse called from the NICU and told us that the Pneumothorax had resolved itself, so we didn't need to worry about that any longer. You were now breathing on your own and doing just fine. They were even able to put you in a regular baby crib rather than an incubator. You had pulled the IV out of your hand during the transport from Proctor so they had to put a new IV in her other hand and tape it up so you couldn't pull it out. This was a very long day and night for me (and your daddy). I've never felt so helpless in my entire life.