Saturday, February 28, 2009

From Daddy: Only God knows how many people have been praying for these two babies and our family this week, but we have seen and heard an amazing show of support. We enlisted the prayers of our close friends and family, our co-workers and close contacts, and they in turn enlisted the help of their friends and family and so on. So that you all know--these prayers are being answered in amazing ways.

Though we have many "rivers to cross" and fear creeps up from time to time, I feel bolstered by all these prayers. I have taken the practice of quietly reading the Psalms to Nora and Ryan and this is what jumped off the pages today:

"Lord you have assigned me my portion and my cup; you have made my lot secure. The boundary lines have fallen for me in pleasant places; surely I have a delightful inheritance."

Praise to God for all the help, especially the family members that have pitched in to take care of Caitlin, the close friends (and mere acquaintances) that have brought/sent food, co-workers that covered for us, and myriad other things, but mostly the prayers on our behalf.

Visitors Saturday: none
Visitors Sunday: nana, grandpa, petra, jamie, jaimie, amy l

Friday, February 27, 2009

Pictures from today

A few posts down I shared about our day today.  Here are some pictures, as requested by many :)  enjoy!

First is Ryan--he did awesome on the cannula today--he even took off the cannula during his brain ultrasound and was perfectly fine for a few minutes--the doc was impressed.  He earned 2 cannula trials a day for 3 hours each by doing that (they weren't inclined to do it previously, but now he's doing just as well as Nora is, so they are on the same schedule of cannula trials).

I got to hold him today without the CPAP, so it was the first time I've seen his face since Saturday.  His face gets really puffy from the CPAP. (ignore my 87 chins)

Next is Miss Nora--take note of how the o-g tube goes in her mouth...

Here she is with her o-g tube in her hand!  (you can see it sticking straight up in the air).  The nurse had just replaced it 10 minutes prior b/c she pulled it out.  Notice all the comfort objects--they do that to help her feel nice and snug.
As promised, the teeny-tiny preemie diaper in John's hand.

Visitors today: Cassie and big sister Caitlin

27 weeks 4 days along

I took this about 24 hours before the babies were born.

brain ultrasound results

Neither baby is having any bleeding in the brain! we are so thankful. Ryans ultrasound was perfect. Nora's showed no bleeding but something that is either "artifact" (which means that it's nothing, essentially) vs. an early marker of cerebral palsy. They are not worried about it right now and think it's more likely artifact, but since premature twins are at high risk of CP, this is something to follow-up on. They will get another ultrasound at 28 days of life (in 3 weeks), so we'll know more then.

Otherwise, Ryan's now getting cannula trials and did well today for 2 hours. Both babies are moving their milk through their gut, so that's good. Nora nearly pooped right in my hand as I was changing her diaper.
We got some nice pictures today of Ryan since he had his CPAP contraption off for a while. We also caught Nora being a stinker and pulling her o-g tube out--we'll post pictures when we get home.

Neither of us slept well last night--I had a nightmare that Ryan's alarms were going off and he wasn't breathing and no one was helping him--ugh, it's all starting to catch up with us. Hopefully we'll rest better tonight.

Thursday, February 26, 2009

more good news

The most important news is that both babies' PDAs have closed! Nora is back on her canula trials (three hours at a time, twice a day). Ryan remains on CPAP but no longer requiring additional oxygen--he may get cannula trials tomorrow. Both babies are starting (or re-starting in Nora's case) "M.E.N." which stands for "minimal enteral nutrition" which is basically a very slow introduction to food. They get 2 mL of breastmilk through their o-g tubes every 3 hours. before each feed, they check for residual milk in their bellies to see if they're moving the food along or if they need a break.

Both babies are scheduled for brain ultrasounds tomorrow. These are done routinely 1 week after birth in babies as premature as Nora and Ryan to check for bleeding in the brain, which, unfortunately is not uncommon.

We both got to kangaroo today, simultaneously. I held Nora and when I would sing to her, she opened her eyes and tried to look my way. she loves her pacifier still and I swear her cry is getting louder already. John kangaroo'd with Ryan. Ryan is also loving his pacifier now and was nice and quiet and happy with daddy the whole time. He is starting to complain quite a bit with diaper changes, which is good, we like him to voice his opinion. We are looking forward to Ryan getting off the CPAP so we can see his sweet face.

I was asked to change Nora's diaper today---I've got to take a picture of these diapers so you can see how teeny tiny they are--it's crazy. Anyway, the nurses told us today that we'll start to become more involved in their care from now on--diaper changes, taking their temperatures, etc. So that's exciting for us as well.

Thanks for your prayers for the PDAs to close! God is good. Now, let's pray for the brain ultrasounds to show nothing abnormal tomorrow.

Wednesday, February 25, 2009

Jessica forgot to mention...

From Daddy: When we came home from the hospital with Caitlin three years ago, Jess came down with a fever of 103 leading to a whole series of disastrous events including me sleeping on the ER floor and Nana coming to rescue us. So...

Yesterday evening was the first night home for Jess, and amidst the hustle and bustle of coming back home she started to get feverish. As I went upstairs to rummage for the thermometer I had flashbacks of three years ago. The first reading was 100. The second was 101. So I did the only thing I could do--I got angry with Jess, turned out the lights, threw her a blanket and pillow and went up to bed.

People always say that God won't give you more than you can handle, and well, this was more than I could handle (given everything). I said, "God, this is more than I can handle," and went to sleep. I woke two hours later to check on Jess and the fever was down to 99. Praise God!

Needless to say today was a shorter visit; but, I did get to change Ryan's Diaper and he showed a little character as he peed all over the place while I was doing it. Who knew this would be something I would celebrate.

Wednesday's update

Last night was my first night home--it went OK. at least I slept. It's tough to leave them here, but it's a reality we'll have to get used to.

Today, when we arrived, they said that after 2 doses of indomethacin, they can no longer hear Ryan's murmur! so that's promising--they'll do an ECHO tomorrow to verify the PDA closed after the 3rd dose. Once the PDA is closed, they'll start the o-g tube feeds. Also, Ryan is under the bilirubin lights today.

Nora hadn't gotten her 2nd dose of indomethacin yet by the time we arrived this morning b/c her urine output decreased so much from the indomethacin (expected side effect). so, now she's peeing again and is getting her second dose of indomethacin. Good news is that when the med makes them decrease their urine output, it's usually a sign that it's going to do the trick for the PDA, according to the neonatologist. Anyway, Nora still has an audible murmur, but it's much quieter than yesterday, which may be a sign that it's shrinking. Again, she'll get a total of 3 doses of indomethacin and then will be rechecked with an ECHO tomorrow morning. She's back on CPAP due to the PDA, but once that's cured, she'll go back on her cannula trials and feeds. Nora's off the bili lights, but it will probably be something she's on-and-off of throughout her stay here.

Please pray for:
-the PDAs to close by tomorrow
-continued good progress on their respiratory status
-john and I not to feel guilty as we juggle daily NICU trips with trying to meet Caitlin's needs and, of course, keep our marriage in a good place.

Tuesday, February 24, 2009

2 Steps Forward, one step back...

From Daddy: Reader beware: you are receiving this information through my filters which tend to mix a few of the details up and skew a few of the more technical terms. Today I told someone that Nora was able to be on the "canola" for several hours today. Oops!

The steps forward include Nora getting to do more Kangaroo care with Mom and breathing with just the cannula. Ryan also seems to be doing better with breathing and is moving closer to getting to spend some time with Mom and Dad holding him.

But, they do have heart murmurs, and an echo confirmed that they both have PDA. (In the high school that I teach at that stands for Public Display of Affection.) Here we are talking about two small holes in the heart that are necessary when babies are in the womb, but need to close up once they are born. They are going to give three doses of medicine (something like Advil I guess) that will help these holes close up. They will do another echo Thursday to see. Please pray that it does.

Mom goes home from hospital today, which is also a step forward even though I am sure we will both be upset that we are leaving here without our babies.

A personal thanks to all the wonderful people in our lives that have been calling, praying and visiting.  We got visits from Don and Jaimie today.

Other updates from jessica: Nora was doing OK with her oral-gastric tube feedings of mommy's milk all day yesterday, but they found that she wasn't moving things along as fast as they'd have liked and her feedings were held today.  We also thought Ryan would get some o-g tube feedings today, but with the PDA, they are going to hold off until it's closed.  Ryan did get his arterial line out of his arm today, so mom was able to hold him.  He does have the CPAP on and has a PICC line for IV nutrition, but the rest of the stuff is wires for monitors.  Both babies are just on caffeine (to help their immature brains remember to breathe) and IV nutrition (and the indomethacin that John alluded to above--but hopefully that'll be all done by tomorrow and the PDA will have closed).

Here's our little Nora on the nasal cannula...
Here's Jess with Ryan during his first kangaroo time--you can't really see him b/c of the CPAP contraption--it's really just in his nose, but the whole helmet thing keeps it in place in his nose and there's a chin strap to keep the air from blowing into his nose and directly out his mouth--so his mouth stays closed and the pressured air goes into his lungs
 Visitors today: Don

Monday, February 23, 2009

Monday, Feb 23, 2009--NOTHING BUT GOOD NEWS

Happy Birthday Daddy!
Your birthday gift: Ryan was extubated this morning and is doing well on CPAP!!!! surprise! Ryan also got a transfusion this morning which is apparent with his improved color and his ease of breathing compared to yesterday. Word on the street is that his arterial line will come out tomorrow and we will be able to hold him, which we are so so so looking forward to. He was on decreasing oxygen throughout the day and when I went in at 10pm to check on them, he was essentially on room air--great progress, but his O2 sats aren't ideal--hopefully they'll improve. The respiratory therapist told us that little caucasian preemie boys are known to be "wimpy" with regard to their respiratory status early on, so she's not surprised he's lagging a bit behind his sister.
Nora is a little spitfire--she continues to tug at her CPAP and complain when she is uncomfortable. She has got a nice set of lungs on her and can complain nice a loud to let everyone know. she takes comfort in her pacifier and LOVES her kangaroo time with mom and dad. During kangaroo time, she is just on a nasal canula (they take off the CPAP) and she has 95-100% O2 sats the whole time, so they are going to give her a few 2-3 hour-long trials of just the nasal canula tomorrow--she is really showing great improvement since her transfusion as well, but we are warned that she will likely need another at some point. this morning she was under the bilirubin lights, and that will be something she'll be on intermittently for quite a while.

Caitlin got to see the babies in person today, but no touching yet as she still has a hint of a runny nose. She is a very proud big sister.
so, really nothing but good news today!

Visitors today: Julie, Amy and Phil, Caitlin

Prayer requests:
-mommy's milk comes in so that both babies can get the good stuff.
-Ryan is able to wean off the O2 and get that arterial line out so that we can hold him
-Nora does well tomorrow with the nasal canula trials
-Both tolerate breastmilk
-blessings to the FABULOUS hospital staff that is taking great care of these babies.

Here's daddy's first kangaroo time with Nora (she had her CPAP contraption on):

Sunday, Feb 22, 2009

(more updates to come--I'm delirious right now)

Here's a picture of Nora and mommy doing her first kanagroo time.  Nora has quite a bit of black hair and a cute little upturned nose (like her big sister had) and is spunky (also like her big sister)

Ryan has much lighter hair (and very little of it) and a narrower face compared with Nora.  Here's Ryan, intubated:

Visitors: Auntie Ella, Jamie, Amy L

Saturday, Feb 21, 2009


Visitors: Nana, Grandpa Wayne


Friday, Feb 20, 2009 started out like any other day of my bedrest. At 3:30 I noticed some weird pulling cramps--lasted about 10-20 seconds each and were coming pretty regularly at 10 minute intervals--they were very minor, barely enough to complain about. I called my OB after an hour of this and was told to continue to rest for another hour and call back. During this hour, a 35 minute interval went by were I had no cramps--so I didn't call back. Then at 5:30ish they started up again--every 3 minutes--still painless, but I was starting to get freaked out. I told John to get a book for me, a clean pair of underwear and socks (thinking I'd be admitted for monitoring overnight like last time--that was honestly the worst case scenario that crossed my mind) and said that I wanted to go to labor and delivery regardless of what the on-call OB would advise. John wondered if we should take Caitlin to a friend's house--I said that I just had a strong feeling we needed to get there ASAP--Caitlin would come with us and we contacted a dear friend who offered to pick her up at labor&delivery. Luckily she was out of the room by the time I got examined and they told me that I was dilated to 5-6 cm! I could not believe it--I totally lost my mind--screaming and crying like a maniac. People started coming out of the walls. The neonatologist came to talk to us--that's when I started having some pain that felt a bit like contractions, though weak, and again only lasting 20 seconds, maximum. I took 3-4 breaths and they were gone. An hour later--and probably only 3 contractions later, I was fully dilated and pushing. we could not believe it. Thankfully, my beloved OB made it in time--he exudes peacefulness and that really helped us.

After 2 pushes, it was clear that Baby A's cord was presenting first (cord prolapse, i think) and it was decided that a c-section was the safest plan. So, that's what happened. On the plus side, the nurse aenesthetist (sp?) said I had a "nice small back" and the resident physician said I had "nice sewing skin" so those were nice compliments (read my sarcasm).

Born at 27weeks 5 days gestation
Baby A: Ryan Michael. 2 lbs 11 ounces. 15.5 inches. at 9:29pm
Baby B: Eleanor Elizabeth. 2 lbs 8 ounces. 15 inches at 9:30pm

I still cannot explain why I had nearly no labor pains. I had a very classic labor with Caitlin--strong, long, regular contractions--this was totally different. Anyway, Ryan came out crying and kicking and breathing on his own with good color. Nora came out very pale, dehydrated, anemic and unable to breathe independently. It was also discovered, during the course of the c-section, that Nora's placenta was torn (this is a different placenta than the one that had a slight tear 3 weeks ago--that was Ryan's and it healed)--there were lots of clots and blood trapped behind her placenta, so I had no way of knowing that she was suffering. perhaps giving me a nearly-silent labor was Gods plan to get her out of an unsafe environment? we'll never know. I had gone to my OB appointment 24 hours earlier and had no cervical changes, no signs of labor and a negative fetal fibronectin the week prior.