Sunday, November 30, 2008

Giving Thanks

We had a wonderful week with family in Oklahoma! We started by celebrating R's Grandpa's birthday on Wednesday night, and getting together with the Linders crew is never boring! Tink hasn't spent a lot of time with her Daddy's family, so they had fun playing and getting to know each other. We celebrated Thanksgiving with more family on Thursday and Tink did her best to keep up with the big kids :) We headed further north on Friday for Thanksgiving with my family (can you say FULL?) and enjoyed time with my parents and grandparents. We are so thankful for our families and for time spent with them - it never seems long enough and we came home looking forward to Christmas!


Happy birthday, Grandpa!

Going for a ride

Thanksgiving Dinner (#3!)

Cheering for the Sooners with Papa

Amazing News

Here is a post from Kimi (dated 11/26):

How awesome is our God! Last night was our third night with both T and S at home. One week ago we found out about T's brain bleed, and I thought for sure he’d take a step back (like he did with the holes in his heart) and not get to come home soon. But the doctors assure us that the brain bleed is “nothing to worry about” and so T got to come home one day after S. It is my fault for not believing in T…the NICU was going to let S stay until T came home, but I thought that would be forever so I was impatient and wanted S to come home as soon as he was ready. Turns out T was ready too!
God provided for us in his perfect timing…we had Rob’s sister Beth and Rob’s aunt Janie here to help with all the boys (and that wasn’t the plan, since when we setup for Beth and Janie to come, we had no idea that S and T would be coming home so soon). That first night was absolutely crazy…Beth made dinner, Janie took care of L, and Rob and I fed and settled in the twins. 4 adults on 3 little guys, and I’d say we could have used even more sets of hands! But really, Janie and Beth both watched the boys’ cares once, and then they were pros.
This morning was our first time at 2 on 3. L slept late this morning (thanks!), Rob fed him while I fed S and T (with many yells to the kitchen for various levels of assistance), then Rob and I bathed the twins while L took a nap. Finally, L and I did “milk lab” (mixing fortified milk, putting milk up to freeze, and rinsing bottles for the dishwasher). He enjoyed shaking the milk bottles and rinsing the bottle in the sink - he absolutely loves playing in water.
Rob is off to look at vans. I will feed T&S and then maybe a nap???
Thanks to Rob for getting L ready to go while I typed up this blog!
PS-T and S will have follow-up head sonograms on Dec 2 and T will have a follow-up echocardiogram on Dec 22.

Such wonderful news, especially considering all that has happened lately. . . please keep praying for all of them - I can't even imagine adjusting to life with three little boys! Well, maybe if they were this cute :)

Thursday, November 20, 2008

Twins Update

Here is an update from Rob about T - please continue to pray for them!

When people tell you that life with a premie has ups and downs they really mean it. 7 days ago it seemed that T had moved along perfectly, small steps each day always towards improvement. I had decided that we were past the scary times and he would be home very soon. People had told us that things often turn around and the twin that is doing so well will stall out or even get worse and the twin that had been struggling would press forward and go home first. I never believed that that would be the case with S and T. We found out about the holes in T's heart just 6 days ago and about a grade 1 brain bleed today. These were very real fears I had the first week after the boys were born. I had prayed diligently about these exact concerns. A month later I had not even thought about them in a couple of weeks, but they are a very real concern for T now. Most brain bleeds develop within the first 5 days after birth. T's and S’ did not. Both had had head ultrasounds that were clear. They both had repeat ultrasounds today and this time they revealed that both had grade 1 brain bleeds. (they are ranked grades 1-4 with 1 being the least severe and 4 being the most severe) S’ bleed looks to have resolved some time in the recent past, but T's look to be active at the moment. We are still learning what this means and where we will go from here. The doctor believes that no damage has been done yet and still expects S to go home with us tomorrow. (He actually lost weight today so we are having to do more fortified bottle feedings rather than straight breast feedings with him and if that works we will probably take him home tomorrow (Friday). With T, we will be watching for any signs that the bleed could be causing any damage and praying that it will resolve itself as S’ did. There is really nothing the doctors actively do to a grade 1 brain bleed. We praise God that S’ bleed is resolved and pray that we will never see any affects of it. We are also praying for T’s bleed to stop with no damage being done. We are also still praying that very soon the holes in his heart will be gone. I also feel like we can tell that he is not doing as well as earlier (especially with eating) so we are praying for that as well. Thanks for your concern and prayers for our boys! Please pray for L as well since “Nan” (my mom) left today and he doesn’t have his grandmother here to dote on his every whim. Although we are incredibly blessed to have great Keystone Friends who step in the gap and adopt our little man for a day or night when his parents have to be at the hospital with his very needy little brothers!

Friday, November 14, 2008

T's heart

Here is a post from Kimi and Rob - please keep them in your thoughts and prayers!

Hi Friends and Family:
Some of you know (and some of you don’t know) the events of yesterday. In a nutshell: A new nurse practitioner, who had never seen T, spent a little more time than usual with him yesterday, because she “didn’t already know him” and wanted to be thorough. She heard a heart murmur yesterday (no one had heard one before) and ordered an echocardiogram to check it out. She also thought he was lethargic and working too hard to breathe, so she had blood drawn. She also put his pulse-ox monitor back on him (he had been off it for at least 1 ½ weeks), and his blood oxygen saturation was in the low 90s while it had been at 99 and 100% when they decided a week ago to take him off of that. The blood draw showed he is a little low on his red blood cell count, which would cause him to be lethargic. The echocardiogram showed three holes in his heart. #1: PDA (Patent Ductus Arteriosus), which is a hole that closes upon birth, but in preemies, it doesn’t always close. #2: PFO (Patent Foramen Ovale) which is one that they aren’t too concerned about. #3: VSD (Ventricle Septum Defect), which is a hole in between the lower two ventricles of the heart, and causes oxygenated blood and nonoxygenated blood to mix. This is the one that they are most concerned about, even though it is “small.” It could cause his heart to work harder, sending oxygenated blood to places it doesn’t need to go, and nonoxygenated blood to places it doesn’t need to go. They stopped T’s oral feedings for one day, to watch him, and I will find out soon whether they have decided to start them back up. The neonatal nurse practitioner (NNP) that we met with last night said that we will meet with a cardiologist every month to see if the holes are closing on their own, and then at one year old he would have surgery if they haven’t closed. The NNP also said that this probably will not delay his coming home much, and that we will just have to watch for lethargy, trouble breathing, and trouble eating – that is, he won’t come home on any monitors. That news, of course, makes me thrilled (sarcasm) because I feel like it puts so much pressure on me to watch him constantly and always be second-guessing myself (is he pasty-white? Is he having trouble breathing? Why is he not eating his full bottle?).

Praise God that T had a new NNP yesterday that heard his heart murmur. Praise God that the holes are all “small.” Please pray that the reason no one heard the heart murmur before is simply because the holes are so small and his heart doesn’t “murmur” all the time. Pray that the alternative is not the case: that the holes are getting worse than they were when he was born.

As for me, I am sad and a bit in shock. I first think about the here and now, and think “ok, they say he is stable and his oxygen saturation has been back up for 8 hours now and he is not struggling to breathe.” But then I immediately go to “will he be able to play outside and keep up with L or will we always be concerned about his heart and him overdoing it?” I know that could be the least of our worries, but I just want my boys to lead a normal life and not be affected by being a preemie.

Also, please note this post is all the events as experienced and heard by me, and may need to be clarified later by Rob.
Oh, and so as not to leave sweet S out of things, they are increasing the number of his oral feeds to 6 per day. He will only be fed by tube twice each 24 hours!
Love to you all,

Rob’s Edit: - Not much to add. T is retaining water and is now on a new medication to help remove it and not let fluid gather on his lungs or heart. In truth they are worried about both the VSD and PDA. The PDA is more common but also causes significant issues. (notably that the blood vessels in the lungs have to handle an increased blood flow and pressure, which over time causes them to become diseased) Both the VSD and PDA allow oxygen rich blood to mix with blood going back to the lungs meaning that less oxygen carrying red blood cells are going to the body. This makes his heart work harder and it could become enlarged. Last night they described his heart size as, “OK.” We have not met with the cardiologist yet. When we do I hope to have more info about what to expect in the coming days and weeks. Right now we are watching to see if T will continue to do as well as he has in the first four weeks in the NICU and wait to see if the holes will close on their own.

Sunday, November 9, 2008

Sick Baby

Remember how I said that Tink wasn't feeling too hot when we went for her checkup on Tuesday and the nurse told me it was all good? Here's the rest of the story -
I'll spare you a narrative of every detail, here's the short version:
Tuesday - shots, low grade fever (typical), rough night (awake every 2 hours)
Wednesday - visit to the doctor with fever of 102, blood culture at Cook's (completely traumatizing), another rough night
Thursday - a little better, hoping we were out of the woods
Friday - woke up with another fever of 102, back to the doctor for strep and flu tests, urinalysis, directions for a stool collection (oh joy) and chest x-ray (again, traumatizing, as you can imagine), really rough afternoon and another rough night
Saturday - fever finally broke, doing a little better, smiling and trying to play just a little, woke up only twice during the night
As you can imagine, we had a really rough week and are so glad that our girl is getting back to normal. I am very thankful for a thorough doctor and was happy to know that nothing serious was wrong, but felt terrible for putting her through all of the poking and prodding! I am thankful that kids are so resilient and am happy to report that she is finally making a comeback. I've never been so happy to see a smile in my life! She still has a nasty nose, a pretty bad cough, and an ugly bruise from the blood culture, but is otherwise no worse for the wear. Say a little prayer that we're back to our normal schedule soon - Mommy and Daddy need a break :) In all seriousness, this week has made us SO thankful for such a happy, healthy baby - we are TRULY blessed!

Twins Update

T and S will be one month old next Sunday, and continue to make progress. Rob posted an update and some pictures to their website today, so I thought I would pass both along to you.
"I really haven’t had time to post updates about the boys progress, but you can see much of the progress in the pictures. We haven’t been given a date yet when they might be able to go home, but we have seen lots of improvement. The biggest hurdle to taking them home is teaching them to eat orally and watching to make sure they don’t have a bradycardia spell (a heart rate drop). I hope to have a post up soon about our NICU experience soon."

Holding the boys at the same time -
a huge blessing!

Such cuties!

Seven months

Our seven month check up was on Tuesday and Tinkerbell weighs 15 lbs 8 oz and is 26 1/2 inches long. She had been feeling a little under the weather for about a week, but nothing serious, and the nurse checked her over and assured me that she was fine to get her shots (more about that later). My friend was in from Switzerland and was kind enough to go with me to the doctor because I had my niece that day - it was still quite the circus and I was very thankful to have her with me! Again, so much respect for moms of multiples!!!! She is on the verge of crawling and constantly rocks back and forth on her hands and knees, and can now sit up from laying down. She is getting better and better with a sippy cup, but is not a fan of water! Her newest foods are oatmeal, peas, carrots, and pumpkin. She LOVES the exersaucer and bouncer, and bounces a lot on our laps. She is suddenly very interested in books, but more to chew on than anything else (it's OK, I'll get her hooked sooner or later!) We are having a blast and are truly looking forward to her first holiday season. I got a little carried away with her pictures this month, but this is my favorite time of year and I couldn't resist :)
Seven months old
Laughing at Mommy
She was in such a good mood that day!
Trying out the sippy cup
"Reading" Ten Little Monkeys


I have a lot of posting to catch up on, so I decided to spare myself the headache and post each separately as if I had been keeping up with things all along :)

We had such a fun Halloween! My niece spent the day with us and I had a great time taking the girls' pictures in their cute Halloween shirts. We also hosted a Halloween party for our friends with little ones, which was hilarious - there should be a rule against forcing your child into a fuzzy costume just for the sake of pictures, but it's way too cute to resist! Tinkerbell was a pretty good sport, I must admit. She wasn't a big fan of her wings, but I'm not sure I would be fond of having something strapped to my back that completely threw off the little balance I constantly worked so hard to achieve. Fun was had by all (except when we tried to take pictures) and I very quickly began having Pumpkin Patch flashbacks. . . Oh well, maybe they'll be more into it next year.
Cute Halloween shirts
(Thanks, Grandma!)
My sweet ladybug
(Props to Aunt Lorie for scoring such a
CUTE costume at a consignment sale!)
Cousins in costume
Our sweet friends