Wednesday, December 30, 2009

Reed 17 days old

Today the doctors said Reed can come home tomorrow, New Years Eve. What a way to celebrate the New Year! Reed is going great, gaining weight. He has a goal of taking in two and a half ounces per feeding. They take my expressed milk and add more calories to it, so the calories are high, yet the volume isn't too large. He gets tired easily during feeding, and falls asleep. We help him finish off the rest of the bottle by infusing it slowly through a naso-gastric (NG) tube. He may need to have this tube for a month or longer. In the mean time, I'm still pumping.
We are being sent home with a bunch of equipment to help take care of reed. He's on a medication to reduce stomach acid, sleeps in an incline position on a wedge, we are renting a scale, and have a service that delivers the supplies we need for the NG.
I want to thank everyone that sent positive emails, brought over dinners, watched my kids, and family that stepped in and helped out. Rylan and I couldn't have survived without you.

Saturday, December 26, 2009

Reed 13 days old

The doctors came in this morning and asked if I had any questions. I said Ya, Reed is 13 days old, when can he have a bath? So today he had his first real bath in a tub of water. I loved it and took pictures ( I am saving the nudy ones to embarrass Reed as a teenager). The bathing quickly ended with potty in the tub, party foul. These pics below are after his bath, lotion, and comfy sleeper. I took lotion and spiked his hair, uncle Andrew would approve. His hair is going to be super blond.

Reed was admitted to the Medical floor at children's on Christmas Eve. I have been rooming in with him ever since. He is learning how to eat, and tires out easily. He is getting stronger and better at eating every time, and they are turning his IV nutrition off today. He is taking expressed milk from a bottle, and has to be fed a certain way. Rylan is going to stay with Reed tonight, and learn how to take care of him. I'm looking forward to needful rest at home!

Visits are OK, text me if you want to come by. We still can't use our cell phones for calls, but texts are OK. The girls are in love with Reed, and Lilly cried today when we had to leave him. She wanted to bring him home with us. My best guess is that if Reed continues to progress like he is, he may come home by Wednesday next week. I feel like all my problems/worries will disappear the day he comes home.
I love Reed.

Wednesday, December 23, 2009

Reed 10 days old

Reed was extubated yesterday morning and taken off the ventilator. This morning the report is that he is doing great, breathing on his own, very comfortable chomping on a pacifier. I think he is hungry. He finally pooped yesterday twice, so they may start to feed him today or tomorrow. These kids have lots of trouble with reflux, so they are building him a custom fit wedge, to keep his head up and make use of gravity during feeds. He is also on a medication to reduce stomach acid.
It's great to be able to see his little mouth and face. He yawns, sneezed, licks and smacks. I put a onsie on him for the first time, and he looks like a real baby boy. Watch out Rylan, I'm in love with another man:) I got to hold him and rock in a chair for an hour and a half yesterday. He fell asleep on me, so peaceful.

Monday, December 21, 2009

Reed 8 Days Old

Reed is 8 days old today. The last 8 days feel like a blur. I have felt a whirlwind of emotions, and feel numb at the same time. It seems I'm unable to think about or plan more than one day at a time. I spent a lot of time with Reed today. It helps me deal with the guilt I feel, having a sick baby when I am perfectly healthy.

Here is the update.
Reed had fevers yesterday. They are testing body fluids for bacteria; urine, blood, lung secretions, nasal cavity, and eyes. So far the only culture back was his nose, and it showed he does not have the flu or a cold. So that's good. The others will come back tomorrow. No results back yet on his echo-cardiogram. Reed is still on the ventilator, thick lung secretions having to be suctioned quite often. His skin looks creamy now, instead of that fake tan jaundice look new babies have. He had two IV lines removed today, and his arterial line, so both arms and legs are free! Yay! He is still getting his nutrition through a PICC line in his scalp.

I cannot thank everyone enough. We are so blessed to know the good people we know. Help with babysitting and dinners has made it so I can spend time with Reed. We get emails with positive messages and prayers everyday. My mom being here was such a help for me emotionally. I can't wait for the day we bring him home. I told Rylan that I'm going to carry him around all day, and not share:) Can you blame me?

Thursday, December 17, 2009

Reed Update Thursday

Reed graduated from the ventilator today and was extubated this morning at 10am! They let Rylan and I stay in the room and watch. Here is a video of him after they pulled the tube out. He is doing fantastic by the way.

video



The respiratory therapist said that crying is really good after the tube comes out. It helps fill the lungs with air, open up the parts of the lung Reed may not have used yet. Crying must hurt his lungs, and the tube will give you a really sore throat. The nurse gave him a little morphine, and he calmed down.


Lilly and Anisten got to meet Reed for the first time. They understood more than I thought. Anisten kept saying baby, baby, and cried when we had to leave. They got to touch his toes, and his hair, and laughed when he kicked his leg. They are excited for baby Reed to not be sick anymore.

Moms worry about everything, and I'm no exception. I wondered how Reed is going to learn to eat, having never been given the opportunity to suck. The best part of the day for me was when I got to hold him (I sorta got to hold him, but I'll take it). Reed was dreaming, and in his sleep he started to suck! It was so cute to be able to see his face and mouth without all the equipment. Reed also got his urine catheter taken out, and did not require the photo-therapy lights and goggles today (we got to see his eyes). I changed his diaper for the first time and loved it! HaH! I'll have to remember that.


Reeds incisions have never been covered. They used dermabond, a skin glue to close them. Three laproscopic sites under his armpit, and the thoracotomy site at the 10th rib.

The Plan:
We think the epidural might come out tomorrow, as well as his arterial IV line. They may give him a little breast milk (like 1mL), and hope he keeps it down. He may be able to move to a medical floor the day after that if he is still doing well. We are so happy with his progress and know that he is being blessed because of family and friends, fasting and prayers.

Wednesday, December 16, 2009

Baby Reed-Day After Surgery

Today Reed is recovering from his surgery. He had a open thoracotomy and repair of a hernia in his diaphragm yesterday. He had to have a mesh patch prosthetic implanted to close the hole. This will stay in his body and his tissues will grow into it.
He is doing fantastic on the ventilator. They have been able to reduce the support a few times and his body is adjusting. There is talk of removing the breathing tube in the morning on Thursday, and the nurse today said Reed is doing so good he is a Rock Star!
Long day waiting yesterday.....Reed in surgery from 12 to 6pm.
That's my boy somewhere under all the equipment! From head to toe... PICC line in right scalp threaded into heart, photo therapy goggles for jaundice lights, naso-gastric tube from nose into stomach to suction out secretions and keep it empty, endo-tracheal tube to ventilate lungs, patches on chest for cardiac monitoring, epidural for pain control in his back, three laprascopic incisions under left arm, one three inch incision near 10th rib on left side, IV line and arterial line in right arm and hand, oxygen saturation monitor left wrist, urinary catheter, IV line in left foot. Wow
We can't hold him. They reposition him every few hours. He moves his arms, opens his eyes, kicks his legs. I even saw him get really mad and cry (no sound comes out with the tube), his face got all red! You go boy, fight, fight, fight!

Before surgery, Reed had a concave stomach, and a large barrel chest. Now with organs pulled down into belly cavity, he has a nice round tummy, and a more even, smaller chest.


Hoping to loose a few tubes tomorrow. Maybe we can hold him then.
Thank-you for all your prayers, fasting, and support.




Sunday, December 6, 2009

Snowflake Lane

Our little family has made a tradition to visit Snowflake Lane at Bellevue Square each year. We went early in the season this year because baby is coming soon (8 days) and I don't want to be left out of all the holiday fun. It was cold, about 30 degrees, crowded, loud, and fun. Live drummers dressed as toy solders line the streets and play to music. Bubbles "snow" off the roof of the mall. The wind blew them the wrong direction, so we didn't see the snow. We were a little late, so Lilly was in a mood. She cried as we left, and would like to go again when Nana Jules gets here in a week:) Up for that Grandma?

I'm holding Lilly 's hand down, from burying her face for the pic.


Lilly said "I want to go inside"


Lilly perked up a little when we saw the Snow Princess

First Haircut

About a week ago I took Lilly in to get a haircut, a stacked bob like she has had before. Lilly's hair is hard to cut, and every nick and mistake shows up. They do a really great job however, and charge me $30 (ouch!) for her cut. While waiting, I watched an 18 month old little girl get her first haircut. It took the lady about 5 minutes, and charged them $30. I watched how she did it, and I decided to try a hand at it myself at home on Anisten. Anisten is hair challenged mind you, she is 27 months old, and has never had a haircut!

This is the before shot, wild baby hair.
Going well, candy in the mouth.

There goes all the baby wispies


Cut some little bangs too...


Ahh, finished product


So cute right? A stacked bob.


Thanksgving

So much to be thankful for. Beautiful family, health, people who love us. We spent the day eating, playing games, resting from our normal routine out at the Evans' home in North Bend. Somehow I got out of cooking anything. HaH!
Guy talk
A little post-dinner snack, my kind of girl. At about 5:30pm we realized we forgot to put Anisten down for a nap! She wasn't crabby.

Leg stretch

Wild Farkle Game with the Missionaries


Wow, so I skipped 3 months!


Here are some cute pics from way back in October. All the pumpkins were rotten, due to the hot summer we had. The patch was good for pictues, and that's about it.