Friday, October 31, 2008

Day 11, 10.31.08

I got to help with her bath today and hold her for a few minutes while they changed her bedding. She is so tiny!

Evelyn is doing really well today. They now think a lot of her breathing episodes are related to when she is eating. Her brain is still too immature to remember to breathe while eating. Too much for such a little girl. There could also be a reflux issue while she is eating that is causing some of her apnea episodes. So instead of letting the milk flow by gravity from the syringe into her tummy, they put the syringe on a pump that delivers her milk - all 19 cc's of it - over an hour and a half. That way it flows into her tummy at a much slower rate and (hopefully) allows her to adjust to having to digest and breathe, all at the same time.


Thursday, October 30, 2008

Day 10, 10.30.08

First, I have to say HAPPY BIRTHDAY CHLOE!!! She turned 2 today. Here they are carving pumpkins this morning.

Evelyn gained more weight, and as of tonight is up to 1005 grams (2 lbs 3 oz). She's on her way back to her birth weight! Apparently she had kind of a rough night last night regarding her breathing episodes, but has had a much better day today. I got to visit with her for 5 hours today and actually hold her for 2 of those hours. It was so nice to be able to hold her and feel her moving around. She remains on the CPAP, but they are now thinking some of her apnea spells could be related to her eating and perhaps reflux, so they are giving her food over a longer period of time, and so far it seems to be helping.

I didn't get a good picture of Evelyn today, so here is one from a couple days ago when she got her bath. They took off her CPAP so we could actually see her face! That's her feeding tube taped to her chin and going into her mouth...

Wednesday, October 29, 2008


Okay, I think I'm officially getting addicted to this whole blog thing. Here is a comparison of Evelyn's footprint next to Rebecca's footprint when she was born. Wow! And what's amazing is that Evelyn's feet actually look big in comparison to her own body!

Day 9, 10.29.08

Evelyn no longer has an IV! She is currently getting 16 cc's/3 hours so she is getting enough calories from milk that they don't need to supplement through the IV. They consider 20 cc's/3 hours as a full-feed schedule, so she's nearly there. They are increasing her feeds by 1 cc every 9 hours until they reach 20 cc's. Then they will continue to increase her feedings based on her weight.

The only other update for today is that they are considering putting her on a ventilator because she is continuing to have more breathing episodes than they would like - even on the CPAP. Roger was there with the doctors today and they are going to run some blood and urine tests to check for infection. Infection could be causing some of these increased episodes, or it could just be the way she is. We'll know more when they get all of the results back. While Roger was still at the hospital this afternoon, the results from the blood gas test came back and showed that Evelyn is doing great with her oxygen-carbon dioxide exchange and the pH is normal, so that's good. Now we're just waiting on the blood cultures to check for infection, but that will take a couple days.

I have to keep reminding myself that she is just 28 weeks gestation (full-term babies are 40 weeks). So she is doing remarkably well considering all of the challenges she's had/having to overcome.

Several people have been wanting an update on me (Colette) and I guess I never thought about it - but thanks for asking! I'm actually doing really well. I didn't realize how badly I felt when I was pregnant and on bedrest until after I was hospitalized. A couple days after I was put on bedrest in the hospital, I received a blood transfusion (2 units) to help with my hemoglobin levels. Apparently I was loosing enough blood due to the placental abruption to affect my blood levels. After the blood transfusion, I felt much better; much more like myself.

Of course right before the c-section, I wasn't feeling well, and during surgery I received 2 more units of blood and a lot of fluids. I think my recovery from the c-section has been much like my other two (I had sections with both Rebecca and Chloe), but this time I get to sleep through the night! No middle of the night feedings and diaper changes. Perhaps the only advantage of having Evelyn in the NICU. ;-) Hey - you gotta find something to smile about...

So thanks for asking, but I'm doing really well. Still sore of course, but doing well. It's been great to be able to get up and around now. I would never wish bedrest on anyone.

Here's a picture of Roger and the girls from tonight. Rebecca and Chloe have been wanting a picture on the blog too. Some of Colette's cousins might recognize the aprons the girls are wearing from Grandma and Grandpa Johnson!

Oh - one more thing. Roger went back to the hospital late tonight and got to hold Evelyn for the first time! Sorry, no picture... But he says she is still doing really well. Sorry for such a long post tonight! You are truly dedicated if you've read this far. :-)

Tuesday, October 28, 2008

Day 8, 10.28.08


Little Evelyn keeps gaining weight, and some very encouraging news today was that they did an ultrasound of her head this morning to check for any bleeding and everything came back clear. So that is great news!!! Bleeding on the brain and infection are two of the biggest obstacles for her right now and so far, so good. The only set back, and it's not much of a set back, is that Evelyn is back on the CPAP machine to help her breathe. She is still on just 21% oxygen, but just needed more of a reminder to keep breathing and keep her heartrate up. The nurses and doctors are not surprised or worried that she's back on the CPAP, but of course it makes mom and dad a little sad.

Roger helped give Evelyn her first bath today. She did not enjoy it, but it was kind of fun to hear her little cry.

The best part of today (for Colette, anyway) was that Colette got to hold her for the first time today. They call it kangaroo care because they put the baby skin-to-skin with whoever is holding her. She is so tiny! Her head is about the size of an orange.

Monday, October 27, 2008

Day 7, 10.27.08

Today was another great day for Evelyn, although she did lose some weight today. They say this is still okay and normal and are not concerned. They will be increasing her feedings again tonight to 13 cc's/3 hrs. Roger got to feed Evelyn today! You can see from the picture below that what this involves is basically holding the milk filled syringe so it can flow into her tummy.

She is getting her first bath tomorrow, so as long as that doesn't tire her out too much, we should be able to hold her for the first time. Can't wait! Also, some people have been asking if Rebecca and Chloe have seen Evelyn yet. Yes, they have. Rebecca can come in and visit with us whenever she/we want. We just have to certify that she doesn't have the sniffles or a cough, then a nurse has to take her temperature each time. Chloe also has to do the same thing, but she can only visit once a month. The only other restriction is when it is RSV season and then the hospital is closed to all kids. Of course, Roger and I prefer to go without the kids because they don't really want to hang out and be quiet and not touch anything for longer than say, 2 seconds. So those of you in town, we'll probably be asking for a lot of babysitting over the next few weeks/months! ;-)

Sunday, October 26, 2008

Day 6, Oct. 26

Evelyn is no longer under light therapy because her bilirubin levels are in the normal range. They will retest in a couple days to make sure that level isn't going back up. She is also eating a lot more than we had originally thought. Today, she is receiving 7 cc's every 3 hours and that will go up tonight to 10 cc's every 3 hours (10 cc = 1/3 ounce). Of course, this still is not a lot of food, but much more than the 1 cc she was getting a couple days ago. The schedule is to continue increasing her feeds by 3 cc's every day and see how she tolerates it. She also gained weight since yesterday, up another 10 grams. She now weighs 970 grams. This is still less than her birth weight of 1020 grams, but she's gaining as expected.

Here's Colette holding her hand.

We got to see another diaper change and feeding today. Right now, they are only changing her diaper every 6 hours so as not to stimulate her too much. By next week, they'll likely start changing her diaper every 3 hours. Next Tuesday is also a big day because she will be 1 week old and will get her first bath!

Saturday, October 25, 2008

The first few days (Oct 21 - 25)

Evelyn's birth day was all about survival. She came out crying and never had to be resuscitated or put on a ventilator. All good things! She was immediately taken down the hall to Phoenix Children's Hospital Neonatal Intensive Care Unit (NICU) and hooked up to a bunch of different tubes, machines, etc. She had surfactant put in her lungs to help keep her lungs open and start to function. She was put on a CPAP machine which keeps positive pressure in her lungs so the tiny air sacs do not collapse. Amazingly, they were able to give her just 21% oxygen (the same oxygen level we breathe) nearly from the beginning. She was also on an IV to give her the other calories, minerals, fats, etc that she needs to survive. Her left eye is still fused shut, but the nurses say that is perfectly normal and will likely open in the next couple days.

By Day 2, Evelyn was taken off the CPAP machine and only needed the nasal cannula (those little tubes that go in her nose). Pretty amazing for such a little girl. They also started Evelyn on regular feedings. Now for her, that means just 1 cc every 3 hours. That's basically a thimble full of milk, but for her, that's a big deal. She did drop down to 2 lbs 1 oz today, but that is to be expected and actually helps her body adjust to the outside world. Roger was also able to see her diaper changed today.

Day 3. So far there are no signs of infection, which is a major concern for her at this point, and they've only had to occasionally remind her to breathe. I know that sounds strange, but we're pretty excited about that! The new thing for today is that they started her on light therapy for her jaundice. This is very typical for preemies and she seems to be responding well. Evelyn is showing her strength already. When she is on her stomach, she will often stretch her legs so that her whole body comes off the bed.

Day 4. She gained some weight today, which is great news. She also opened her left eye today, just as the nurses predicted. And today, Colette got to see a diaper change. What's so funny is that instead of a typical wipe, they use a damp cotton ball and a saline wipe. Everything is so small!

Day 5 showed more improvement. They lowered the humidity level in her incubator and are going to increase her feedings tonight. They would like to see Evelyn gain 0.5 oz/day, on average, which equals 15 grams/day. They also increased her oxygen flow from 1.5 liters to 2 liters. This is still amazing for such a little baby. When they first took her off the CPAP, she was getting 4 liters of oxygen, but because she's been doing so well, they decrease it down to just what she needs. Since being on 2 liters, Evelyn hasn't had to be reminded to breathe. She's maintaining it all on her own. She also gained 5 grams today. It's amazing to be thinking of her weight in grams instead of pounds.

Birth Story

On Tuesday, October 21st, at exactly 27 weeks, the doctors decided it was time to deliver for the health of mom and baby (we never found out if we were having a boy or girl - we wanted it to be a surprise!). After a frantic rush to the hospital, Roger made it to Colette's side just in time.

Everything started happening really fast. The nurses started preparing Colette for a "normal" c-section and kept checking the baby's heart rate. The NICU doctors also came in to discuss all the different possibilities that might happen because our baby was being born so early. As they continued preparing Colette for the c-section, the baby started to show signs of distress, so it went from a fairly rushed c-section to a true emergency c-section. They started rolling Colette down the hallway and were still considering giving Colette a spinal so she could be awake during the procedure, but the last thing Colette remembers hearing is the doctors yelling "She's crashing" and then being put right to sleep.

Roger was waiting in the hallway to be let into the operating room, but also remembers them yelling "She's crashing and she's 26 weeks!" and seeing about a dozen more people rush into the operating room while he was left in the hallway.

Less than 10 minutes later a doctor finally came out and spoke with Roger. She started by saying "She cried when she came out, which is a really good sign." Roger's first reaction was "It's a girl?" Roger then went with our precious new baby girl to the NICU as they continued their evaluation.

Evelyn was born at just 2 lbs 4 oz. They don't measure the baby's length this early because it's too much for them to try and stretch them out just to get a measurement, but we later got one of Evelyn's nurses to guess she was about 14 inches. Besides crying right away at her birth, another amazing thing we were impressed by were Evelyn's Apgar scores of 8 and 9. She is truly a gift from God.

How we got here...

This is our first attempt at a blog, so here goes nothing! We decided to create this blog to help keep our family and friends up-to-date with all that's happening with our precious little Evelyn Marie. It's hard to remember what we've told people, so I guess I'll just start at the beginning...

Evelyn's had a rough start right from the beginning, but she's also shown us that she's a fighter. Even before she was born. It all started when Colette was just 14 weeks pregnant and started spotting. Colette went to her doctor several times to see what was going on, and each time, the doctors would look and listen to the baby and say that everything looks fine. This continued until around 18 weeks when the spotting Colette had been experiencing got worse and turned into bleeding. After two trips to the ER fearing the worse, Colette was finally diagnosed with a placental abruption.

Colette was then transferred to a high-risk OB/GYN practice called Phoenix Perinatal Associates (PPA). I only mention them because everyone that works there has been nothing but fantastic! We couldn't have asked for better care. Our first visit with PPA, Colette was put on bedrest at home and had weekly doctor visits with ultrasounds at nearly every visit to check on the baby and see how the abruption was healing or if it was growing. Each visit was encouraging. The baby continued to grow and the abruption was showing signs of improvement. We were getting hopeful that this might resolve itself and life would go on as normal.

After nearly 9 weeks of bedrest at home, Colette's symptoms suddenly got worse, so we were told to go to Banner Good Samaritan Hospital to be evaluated. Colette was just 26 1/2 weeks and was told that she would have to go on bedrest at the hospital until the abruption resolved itself, or the baby was born, whichever came first. So we packed up and settled into the hospital expecting a long stay. Colette was setup with lots of books, magazines, movies, etc. In the early morning hours of Tuesday, October 21st, after just 5 days in the hospital, Colette started having contractions that couldn't be stopped.