Wednesday, May 30, 2007

Transfer of entries from Care Page

May 29, 2007 at 09:15 PM EDT
Happy Two Week Birthday!

Today is a much better day. The girls are doing MUCH better and appear to be out of the woods for now. They are off their special vents and back on the normal vents. They are also off the blood pressure medication and their pressures are holding steady. They have not been able to identify the source of the infection, but are continuing to treat it with several broad antibiotics.

Earlier today they had brain scans that were perfectly clear. They also did lumber punctures (LP) on both of them to rule out meningitis again. We won't know the results until later.

You might remember that Natalie may have had some small seizures. That's one reason they are testing her with the LP. However, the doctor said it's not clear if she really had a seizure or if it was just a jerky reaction to all the medication she was on. They are going to do an EEG tomorrow or Thursday to check her brain activity.

So, the girls are doing much better and we are so pleased and thankful. Thank you so much for all your prayers. Apparently, they were much more sick than I realized. Today I asked the doctor how worried I should have been on a scale of 1-10. She said an 8 or 9. It was pretty serious. Next time I'll ask the question while they are sick instead of after they get better.
May 28, 2007 at 08:01 PM EDT MONDAY - Day 13

The last 24 hours have been up and down. We've had several calls from the NICU updating us when things go a little south. The last one was at 3am informing us that they added two more blood pressure medications to Natalie in hopes of getting it under control. Both girls had been on 100% oxygen and didn't seem to be getting much better.

Fortunately, a new sunrise brought better news. We were there this morning around 10am, and things were looking better. Both girls were down on their oxygen levels. At last check (about 5:30pm) both girls were being weaned off their blood pressure medication and their oxygen levels were down to the 30's-40's%. They had also backed down the vent pressure which is a great sign.

As always, it's a long road, but for now things look a little better. They still have not determined exactly what kind of infection they have. However, they are being given a pretty broad range of antibiotics to cover just about everything.

It's so hard to see them lying there so helpless and little. I want to protect them and do something to make them well, but I can't. Ben and I feel so helpless. All we can do is pray and sit beside them and tell them how much we love them.

One other bright note - today would have been 28 weeks gestation and tomorrow is their 2 week birthday. My due date (August 20) is our goal for bringing them home, so two weeks down only 14 more to go!
May 28, 2007 at 12:28 AM EDT SUNDAY - DAY 12

Well, the last two days haven't been the greatest. The girls are having a hard time. Abigail has been nursing an infection for a few days and now Natalie seems to have picked it up as well. Here's a basic run down...

Both:
Both girls have been dropping their pulses and blood oxygen levels and have needed to have their oxygen increased. Therefore, they put them on a different vent that allows them to receive the O they need without damaging their lungs. The new vent is more gentle on their lungs.

Both girls have had trouble maintaining their blood pressure and have been given dopamine to help.

They both seem to have some kind of infection and are on antibiotics. The good news is that the spinal performed on Abby was negative.
They sent of more blood to culture to see if they can determine what kind of infection they have.

Both girls were anemic and received blood transfusions.

Both are on morophine drips to help with any discomfort they are feeling and calm them so they can rest.

X-rays revealed that their lungs were still "wet", ie. they have fluid on them. They were given increased lacisics to help them pee more and rid themselves of excess fluid.

The good news is that their belly x-rays look great and there is no infection in their bellies.

Natalie:

An echo revealed that the PDA in her heart had opened a very tiny bit. Although not very serious, they are treating it with medication.

Ben, as a very observant father, noticed earlier today that she was flailing about and jerking a little in a way that seemed different than usual. He brought it to the attention of the nurses who agreed and it's thought she may have had a small seizure. They gave her phenobarbital (a benzidiaziphene) to treat it and calm her.

She had low levels of cortisol which helps maintain blood pressure. They gave her hypocortisol to help.

Abby:
As she has been running with the infection longer, she was already on antibiotics and the like. She's still having trouble maintaining her sats, but they are watching her closely.


This is where we stand right now. The doctor says this is all very common and expected. No need to panic yet. We are concerned of course, but trying not to obsess. We hate to see our little girls hurting and we wish so much we could do something to help them. We'll just keep praying and know that they are securely in God's hands.

On the bright side, we did have nice visits this weekend with Jo's Dad and Peggy, AKA Poppy and Nanny. Today we also visited with Ben's whole family, Mom and Dad (Grandma and Grandpa), Uncle Jeff and Aunt Reagan and Reagan's Mom, Phyliss, as well as Ben and Jeff's sister, Jan, visiting from Florida.

Hopefully the girls will have a nice, quiet, restful night and we will update in the morning.

ps - those who know me well, know I can't spell. Trying to spell medical jargon and medications is even worse, so you'll just have to sound it out and ignore the spelling!
May 26, 2007 at 01:03 AM EDT  
Mommy and Natalie



Tonight (well, Friday night) was an amazing night. Mommy was able to hold Natalie for the first time. We've been aching to hold the girls but thought it would be weeks. In a meeting with the doctor Thursday we asked and were told we could hold them any time! We were so excited! Holding her was amazing. I finally felt like a mother! Natalie is so incredibly tiny. In her little incubator, she looks small, but not so small. When you take her out into the big world, she is just tiny. As she lay on my chest, I could feel her breathing. I could kiss her little head and rub her little back. I talked and hummed to her. I was able to hold her about 30 minutes. She did so well. She was breathing well and her sats were good. I hope that means she liked being with her mommy.

Daddy was jealous, but they only like one person to hold her at a time. We can also only do it every other day. So, he will get the next shift. As they get used to it and appear to tolerate it, we can hold them longer. When Abby is feeling better, we will have the chance to hold her.

We took a picture of the three of us, but we can't wait until the four of us can be together.


May 26, 2007 at 12:45 AM EDT
Today the girls are 10 days old. Since I'm just setting up this page, I'll give a quick run down of life so far...

Day one: Day one was settling in and getting used to the whole idea. The girls were doing quite well. They were both on ventilators and receiving antibiotics to fight any possible infections. Abby was quite swollen with all the extra fluid in her body and Natalie was quite skinny.

Day two: Abby had her vent removed about 9am and was placed on CPAP. It blows air into her body through her nose, but she does her own breathing. Natalie's vent was removed about 5-6 pm that evening.
- They also performed a brain scan on Abby to check for possible bleeds.

Both girls also have jaundice and are being treated by special lamps.

Day three: Abby's brain scan came back great. The doctor's said there was a possible Level One bleed. They weren't sure and even if there were, it has no consequences and isn't a big deal at all.
Abby was also looking much less puffy.

Day Four: Natalie needed to go back on the vent. She is so little and gets tired easily. Breathing is hard work when you are so tiny!
Natalie's hemoglobin's were low and she needed a transfusion. This is very normal for little babies.

Day Five: Everything is mostly the same. The girls also had a celebrity visitor! Jeff Foxworthy (of "you know you're a redneck when...") was in town for the Duke Celebrity Classic Golf game and he and his family stopped by to tour the Children's Hospital for which they were raising money. They brought them in to see the tiny babies and picked our girls for show and tell! The nurse said they like to show off the cute babies:-)

Day Six: The girls had echo-cardiograms to check their hearts. The doctors were looking for something called PDA - a value in the heart that is open in the womb but is supposed to close after birth. Sometimes in preemies it doesn't. If it doesn't it can be treated with medicine. If that doesn't work, surgery is required. Fortunately, our girls showed perfect hearts and no PDA!

I finally started recording their weight:
Abigail - 676g (BW 840g)
Natalie - 590g (BW 604g)

Also, Natalie came off her vent again and back on CPAP.

Day 7: Both girls receive their first breast milk feeding (a whopping 1cc)
Abby - 689g
Natalie - 561g

Day 8 - Natalie back on vent - just too tired. She will stay on it at least a week this time. They also suspended her feedings because her tummy was a little distended.

Abby seems to be developing a little infection. Her white blood cell count is up and her platelets are low. She will receive a transfusion and antibiotics. They also did a lumbar puncture to test for meningitis. Her feedings are suspended too until she feels better.

Great moments: Mommy changed Abby's poopy diaper!
Daddy changed Natalie's diaper AND got to hold her in his hands up in the air in her incubator while the nurse changed the sheets.
Natalie's first poopy diaper today!

Abby: 730g
Natalie: 615g

Day 9: 2nd brain scans were perfect! No bleeds!
Abby also had to go back on her vent as well. She kept "forgetting" to breathe. Meningitis test appeared negative. This is great news.

Abby: 732g
Natalie: 655g

Day 10: Another echo on Abby still showed no PDA. They checked because sometimes an infection can cause it to open.
They started feeding Natalie again.

Now that we are caught up, I can do daily updates and you won't have to read so much! Don't forget to check the photo gallery. Stay tuned!
Edit
May 24, 2007 at 12:34 AM EDT
Hello Friends and Family!

We are setting up this web-page so everyone can check on little Natalie and Abby whenever they want. We will continue to send updates, but here you can get the latest news and see pictures.

To start - a little review:
I was having the perfect pregnancy. I never had any morning sickness, strange cravings, or moodiness (really - ask Ben). I never even gained any weight - although you wouldn't know it looking at the last pictures of me. At 24 weeks, I was just starting to feel pregnant. It was just in time as exams were winding down and I was set to graduate. After a perfect pregnancy, things changed so rapidly. Within two weeks, we would have two precious little girls.

The time line...
May 4 (Fri)- 24 weeks 4 days - Routine ultrasound at Duke Hospital. We are told that our fraternal twins had a disorder only relevant to identical twins - Twin to Twin Transfusion Syndrome. The girls were sharing blood vessels and blood. Twina (Natalie) was giving her blood to Twinba (Abby). The result was that Abby had too much blood and Natalie not enough. Their blood volume determined how much urine they produced and therefore the size of their amniotic sac (composed of baby pee!). Natalie had a tiny little sac and Abby a great big swimming pool sac. The danger to the twins was that Natalie would be undernourished and die and that the pressure of the fluid on Abby would cause heart failure. Treatment involved an amniocentesis reduction - where they inserted a needle into my uterus to draw out Abby's extra fluid. The hope was that it would help stabilize the pressure between the two sacs and reduce the blood flow between them. This was the hope. I was put on modified bed rest.

May 9 (Wed) 25 weeks, 2 days - Another ultrasound revealed another problem. Natalie had developed something called Absent End Diastolic Flow in her umbilical cord. Basically, the blood wasn't flowing correctly through her cord causing additional problems with nutrition. She also had very little fluid and Abby still way too much and another Amnio reduction was done and strict bed rest ordered.

May 11 (Fri)- Another early morning ultrasound - things looked better. Nat's Absent end was, well, absent. The flow looked normal. Abby's looked not quite as normal but not Absent End. We felt good.

May 14 (Mon) - 26 weeks - Early morning ultrasound - Nat's Dopplers (that measure the cord flow) looked not as good as on Friday but not as bad as the Wednesday before. But, now Abby had a problem. Her heart didn't appear quite normal. After another amino reduction, an echo cardiogram was performed on their hearts showing decreased function on the right side of Abby's heart. She also showed back flow from the atrium to the fill chamber (in other words - it was going the wrong way!). The decision was made to admit me to the hospital for the long haul - until the babies birth.

May 15 (Tuesday) 26 weeks, 1 day - Another early morning ultrasound revealed the dreaded fluid around Abby's heart. The decision was made to deliver the babies before anything became worse.

Natalie Kimberly was delivered by C-section at 4:09pm weighing 1 lb 5 oz and 12 1/4 inches. Her sister, Abigail Elianna, was delivered one minute later at 1 lb 13 oz, 13 1/4 oz. And just like that - our family was complete.

No comments: