One Month Old

Noah is one month old today! We have had a wonderful and busy week home. I will post more soon, but some of the highlights are:

• Appointment with the pediatrician - 8 pounds 12 ounces and 22 inches long.
• Now feeding around 30 ml from a bottle and 40 ml through the NG tube.
• Had his first immunization shot (only cried a little bit).
• Daddy and I have replaced his NG tube once (he coughed it out his mouth) and the trach (Saturdays are "trach changing days").
• Many visitors have come to cuddle and meet the little man.
• Found out we're being referred to Dr. Song (a cornea surgeon) at Children's Hospital Los Angeles not UCLA Medical.
• Should know next week when we're heading down south.
• Does not hate "tummy time" as much as I expected.
• LOVES to be held.
• Several doctors appointments are scheduled for the next few weeks.
  

It's amazing how fast the days are zooming by. Because Noah needs to gain more weight, we are sticking to a strict feeding schedule every three hours. I seem to only have small windows of time to do laundry (how many outfits can he spit-up on in a single day???), clean a bit, wash hundreds of bottles, pump, organize his mounting paperwork, return some phone calls, and sneak in some cuddles before it's time to feed again. Wow! The life of a Mother is Awesome!!!

One Word...

I have only one word to share and It's amazing how this word can mean so much to me.

This mere four letter word is where weary people desire after a troublesome day...
Hearts are devastated when this word is lost and mended when found...
Men and women go off to war and sacrifice their lives to defend this word...

...and this word is a place I have finally found.

Home.

I am finally home.

Highs and Lows

This weekend was VERY busy and there were a series of highs and lows. Kc and I continued to stay in Room 1631 and the nights have gotten a bit better. We're able get a few hours of sleep in between feedings and diaper changes. Speaking of feedings, Noah was eating so well on Thursday that Dr. Fields took out his NG feeding tube. We were able to get a few pictures of him without anything covering his face (the first time since right after he was born).
As soon as the tube was out, however, Noah went on a bit of a hunger strike. He refused to drink anything from his bottle. We tried everything to get him interested — multiple different nipples attached to the bottle (thanks Nana for getting them), waiting longer between feedings, I even switched from breast milk to formula to see if he would like that better. Nothing worked. Unfortunately after 24 hours of very minimal eating, we put the NG tube back in. He is now eating around 30 ml from the bottle and the rest is pumped through the tube.

On a high note, we had several visitors who brought us yummy treats to eat. Noah got to be held by Chris and Lindsay (the future Mr. and Mrs. Overstreet) and Katie (the future Mrs. Torstensen). Our friends Dave and Mary are coming by tonight and Nana and Papa have been here lots.

Kc and I went to church on Sunday. It was our first time since Noah was born. Our church family has been so supportive over the past few weeks. They prayed for us and gave us the encouragement to keep going!

There is a strong possibility that we will be going home tomorrow morning. Yeah!!!!!! It will be a short stay, however, for we will be heading down to Children's Hospital Los Angeles to see a cornea surgeon and hopefully get some more information about the new drug. We'll know more tonight.

Not much sleep

Well...last night was an adventure! Let's start at the beginning.
At around 9:00 p.m. I decided to lay down in preparation for waking up every three hours to do diaper changes and get ready for feedings. There is a large vinyl chair that folds down to a "bed". It is definitely larger than a twin but I don't think it's quite a full. Kc was not tired at all, so he stayed up and read for a bit. About every 15 minutes there was some disturbance — alarms going off, nurses coming in to check said alarms, kiddos next door crying, nurses coming in to "take vitals", other nurses coming in to take blood samples, and pump machines making beeping noises. Noah was amazing and seemed to sleep through the whole thing. We, however, did not.
At midnight, after NO sleep, Noah's pediatrician came in to do rounds. He asked about how Noah's feeds have been. I told him that two days ago, because of the concern with how much Noah was spitting up, one of the hospitalist increased the time that his feeds are pumped through the NG tube. Instead of the typical thirty minutes, they increased his feeding time to ninety minutes. Because he is fed every three hours, he would feed for an hour and a half and then digest for only an hour and a half before feeding again. The feedings were so long that Noah was not feeling hungry and therefor stopped bottle feeding. I was unable to get him to take more than 10 ml the past two days and his OT, Sandy, couldn't do any better. Noah's pediatrician, Dr. Fields, immediately called a nurse in to the room and had her stop his pump feeding through the NG tube. He said that in order for Noah to go home, he needs to learn to eat, and in order for him to eat, he needs to be hungry. Dr. Fields then told me to bottle feed him every three hours. I am proud to announce that my little man has taken three bottles of 75 ml each over the past three feedings. He has not had any milk put on a pump to go down his NG tube. What do you know, a hungry boy will eat.
Kc left for work at 6:00 a.m. after a combined total of about one hour of sleep. He went in early because he needed to come back to Children's Hospital today at 10:00 a.m. for Noah's second trach change. Nana, Papa and Kc all got to practice putting in a new trach. Right before that, Noah had his first cast change. The nurse practitioner who changed his casts told me that "his legs are looking great".

Nana stopped by our condo to pick up the mail and feed Kitty. Waiting at the front door was a package addressed to Noah from Aunt Mary Lynn, Nicole, Marvin, Megan and Dakota, containing some Green Bay garb for next year's Super Bowl. Doesn't he look like a future Packer fan?
Hopefully tonight will be a bit more calm and we can get some much needed sleep between feedings. Either that, or we'll be so exhausted that we'll sleep through all the beepings and interruptions.

Thank you for the prayers! I am very hopeful and optimistic that we'll be going home soon.

We moved again, again, again

Last night, after Phil and Katy Mc came by for a visit and brought us dinner, Noah was moved out of the NICU. We are now "on the floor" which means we are in a normal hospital room. The nurse who moved us said, "we are one step closer to the front door". There are kids from age two through sixteen surrounding Noah. Kc and I will now be "rooming in" with Noah starting tonight. Please pray that we are able to sleep with all the beeps, interruptions from nurses and "cries" from Noah. Let the joy begin!!!

We have a busy day planned. Noah will have his casts replaced today after lunch and then I will give him a bath (something he LOVES). Nana is planning a visit in the afternoon as well as his eye doctor, Dr. Kelly. Add to that, several diaper changes, feedings every three hours, trach suctioning every few hours, nurses assessing Noah, as well as the mandatory cuddle time, we have a typical day at Children's Hospital.

I'll post some pictures as soon as Kc comes "home" after work. I thought our condo was small, but spending the next several days and nights in the hospital room will make home seem like a mansion. It's just like being at a noisy hotel without the room service.