Tuesday, December 30, 2008
Ellie Update
Friday, December 26, 2008
Ellie's First Christmas
Tuesday, December 23, 2008
It's beginning to look a lot like Christmas...
Ok...well, sad but true because it is just beginning to look a lot like Christmas in the Gramkow household. I guess maybe that started last week - we did put up some Christmas lights on the spiral staircase in the apartment, got some tiny stockings to hang on our entertainment center, and did actually get the nativity scene up. Our tree this year...is only 8 inches tall. Looks a little bare, but does have lights...but the string isn't very long so well...it's hard to have it plugged in. Oh how little Miss. Ellie has sure been a delightful addition to the Christmas holiday, but unfortunately we're not going all out with decorations until next year...more space, more time.
It is beginning to look like Christmas because we finally got our presents wrapped today...yes, Christmas Eve Eve. :) Ben and I decided to get eachother presents (and more than one too! Yippee!) and then we both bought some for Ellie, which I think is great...she won't know, but it'll be a surprise to each of us because we don't know what the other one got...and also, since Ellie can't open her own presents, then we have to help her! :) How fun. :)
We went to the Dr. today for another weight check and our little princess is now a whoppin' 8 lbs. 1 oz. Wahoo! That means she gained 5 oz. from the last Monday. She's supposed to gain 5-7 oz. per week and this is the first week that she's met the range! We're still feeding her every two hours (every three at night) and she seems to be doing well - still really streaky - but I think her record high has now been 80 mL. We were shocked. We're still doing the fortifying all the breastmilk to 22 calorie with some(actually 1 or 2) straight up breastmilk feedings during the day too. She's also increased her pooping. She had her first blow out of her diaper, thru the onesie and thru the sleeper - We were so proud :) She hadn't done that before!
Mom's been diligently trying to get her practicum hours made up on campus - and also working fro home. It's been a hard adjustment leaving little Ellie at home with Ben. Ben however has been totally taking one for the team and still needs more time to do his homework - we need to get those incompletes changed to letter grades!
We're staying put for Christmas this year, obviously. We have enjoyed a couple visits from Aunts and Uncles and will dearly miss getting together at the big family gatherings...but then again, there will be a lot more Christmases! Ben and I are going to try to make a gingerbread house (well, actually I have a kit)...but we thought it'd be fun as we're setting our own traditions with just Team Gramkow. We are very blessed to have this little one with us this holiday season. Until next time...and no worries. I will post some pictures soon! And from our Christmas too. Hmmm....after which morning feeding will we open presents....hmmm...
Thursday, December 18, 2008
Fun Day! The Occupational Therapist came to see us!
Wednesday, December 17, 2008
We GOT the SYNAGIS!!!
So at 6:30 a.m. I called the Caremark pharmacy (yes, that's right when they open) to do my from what has become "routine" check on Ellie's synagis shot. They told me they were shipping it out from the CVS/Caremark Pharmacy in Lenexa, KS and gave me their number - and told me their pharmacy didn't open until 7:30 a.m. So I fed Ellie, we put some eye drops in (yes, because she had a REALLY gunky eye that started yesterday...yeah, it was too the point where her poor eye was like matted shut :( Anyways, waitied for 7:30 to roll around. Called. And I had to wait until getting a call back from the synagis coordinator, pharmacist there - I'm not sure what her title is...but she said, "Yes, Mandy, we have everything approved and it will ship out tomorrow and should be there hopefully via UPS by noon." I asked if there was anyway that it could get shipped out today and she said no. Then I asked, Can I come pick it up? She said, oh, dear, I wouldn't want you to have to drive to come get it...whereupon I fought off the tears saying, "Mam, do you know how long I've waited for this shot? Do you understand that she's already a week overdue today?" Then she said, Ok, you can come pick it up - do what you need to do. (Wouldn't any mom go get it? It just wasn't an option not to in my mind...boy the adreneline was rushing) I called my good friend Alisha for a riding buddy and got the plans made to dig our car out of the snow bunny it was in and head to Kansas City! Well, thank GOD for Aunt Alice (this is Ben's aunt) who lives in Kansas City - so I call and have it arranged for Aunt Alice to be able to actually pick up the synagis from the Lenexa pharmacy (which they had to have an hour to get it packaged and on ice) and she then drive toward us as we're driving toward her! We met in Topeka at the Spangles on Wanamaker for the pass off. :) What a good Aunt...and she even threw in some blueberry jam! So I called the home health agency and we're on the schedule for Ellie to get her shot around 2:30/2:45 p.m. today. Yippee! I'm so happy! Thank goodness that Ben was feeling 90% better so he could take care of Ellie - he's such a good dad and was wearing the mask and washing his hands like a madman!
Such a good feeling knowing that the Synagis is in my fridge, and that I know she's getting it today - no more phone calls...except to start setting up the synagis for NEXT MONTH! :)
UPDATE: Nurse Julie came and administered Ellie's synagis - she weighed 7 lbs. 12 1/2 oz. with her scale. She cried pretty good, but no worries, mommy comforted her right after! She's a trooper!
Prayers for Ellie's eye - at 8 a.m. I did call the Dr. and they said to keep trying the eye drops that we had from a couple weeks ago for Ellie's clogged tear ducts. We've already noticed that it's helping. If it's still present then tomorrow we'll need to bring her into see Dr.Duff again!
**Also update on her eating - it's getting better....we're experimenting still - we've found that the Dr.Brown's level 2 nipple works well for Ellie. She's been taking 40s, 50, 60 mLs....also we've been feeding her only 22 calorie milk - we'll see if she can still gain weight this way!
Tuesday, December 16, 2008
Cessna...bad news
Ben just got a call - and Cessna rescinded their offer. So we're back at ground zero...yet again.
Prayers for Ben - he's also got the stomach flu today....so I'm trying to keep Ellie away and take care of Ben...rough day...
Monday, December 15, 2008
Ellie's still gaining
She's up to 7 lb. 12 oz. now - from the Doctor's appointment today. Not gaining as much as we'd hoped, but still gaining.
Still no synagis. We'll hope for tomorrow, just like I hoped for today.
Sunday, December 14, 2008
So hard...
First off, I want to publicly apologize for using Ellie's blog as a way to vent my frustrations about the past couple days. I wish I could say that I am a woman of great strength and faith, but I sure have fallen with all the worldly things that have come my way lately. Someone very dear to me brought it to my attention and I am asking all of you who have read the past couple posts to please forgive me for my words, my attempts to blame someone for the things we've had to go through. It's so hard, but it's no excuse. I would hope all of you know that God is a very important part of both Ben and my life, but my past actions would not necessarily exemplify it. I admit - Since being home...I want control, I want answers, and I apparently want someone else to blame for what we've had to endure. I guess it just didn't hit me as much until I got home and it's now just Ben and I...Ellie's our pride and joy, but our responsibility. It saddens my heart to notice all the sin that is apparent in the world now that I'm a mom. But I too must remember that I sin, just like everyone else. Again, I don't know why these things have to happen. I just have to trust that God knows what He's doing and that He's put Ellie in the care of medical professionals that are perfectly able to do just that...care for her. I guess I need a lesson on trusting the people God's put in our path for Ellie too. We are very blessed to have Dr. Duff as our pediatrician and Lord, forgive me in the ways in which I have been so angered and bitter toward the staff there. I should have been turning to comfort from you rather than just filling myself with emotions and anger toward someone who in my eyes could be worthy of the blame. Lord, heal my brokenness. Lord, hold my heart and please remind me daily that Ellie is Yours and that you have protected her thus far and will continue to protect her - synagis or no synagis. Help me to let you carry Ellie rather than trying to carry her myself. I can't do this alone. Thank you Jesus for your grace and allowing me to come back to you even when I disappoint you. Thank you for the gift of Ellie, thank you for the people still continuing to pray for her, thank you for the people who love us and are walking life beside us, keeping us aligned with Your will.
"Your child is in God's hands... she has been from the beginning. You are feeling the weight of the large and precious responsibility that the Lord has given to you. With it comes incredible joy, opportunity, delight, hope and dreams unimaginable. With it comes tremendous heartache, frustration, confusion, self-doubt, suspicion of even the most common things. Though she is home... she is still the Lord's... not yours. Her life is in God's hands and no amount of anxiety will pry His grip from her... no matter what we do."
Experimenting
Wednesday, December 10, 2008
One class down! Wahoo!


So today was a great day because Mandy has one of her classes now caught up and complete! Only one more to go. Ben is still working dilligently on his two online classes and has been a great dad and help while I've been giving presentations out the wazoo! He and Ellie have had some quality bonding time! :) It seems like Ellie may be going through a bit of a growth spurt lately...she's eating well! So we'll definitely be eager to see what her weight is next Monday if she keeps eating at this rate! We did have the home monitor go off yesterday due to apnea two times. :( She must have been in a pretty deep sleep. We didn't see a color change though, so that was good. She's been such a joy lately...not that she hasn't always been a joy...but she's awake more often now...strengthening those legs and neck muscles. Each day brings a new awe and joy of the wonderful miracle of Ellie and life! We had a friend come over and take some pictures of Team Gramkow. He's actually in grad school with me and has a great side hobby...or job I suppose you call it too! His web site is www.labrisaphotography.com. These are some of the pics from his photo shoot, but they're just the teasers. There are many more to come..and one of these days we're going to get birth announcements done! Enjoy!
Monday, December 8, 2008
She's a gaining! Wahoo!
Friday, December 5, 2008
So...the Princess likes to change her outfit!
Well, Ellie is eating better today. We were actually way pumped because tonight she was ready to eat after 2 hours - she took 60 mL (2 oz.) at 8:30 p.m. and then at 10:30 she was awake and eager to eat! Yes, that's right gold princess sticker worthy - and yes, by the way we still have her princess calendar up at our place! :) So, she ate another near 2 oz...but we should have been more prepared....she wanted to change her outift not once, but twice because of lovely spitting up! Even Mom got to change her pajamas the second time! We're just real thankful that she was awake and interested in eating today! Progress...baby steps...day by day. Hope you enjoy her new photos! The top one is from bathtime which Ellie loves! :) The second one - well, we wanted to see how many different patterns we could have all in the same picture. I think she looks so small in that pic...then again, she is still a small one.
Thursday, December 4, 2008
Keep On, Keepin' On
Well, after coming back from the Lactation Consultant and Doctor's Office, we're finally back home and it's already 1 pm. At 10 am we met with Melanie and tried nursing. Ellie however, didn't actually transfer anything - after nursing - and we thought she was swallowing, but we were really trying aggressively to get her to latch on. So apparently she worked harder than she was taking in. I guess I had thought that Ellie was latching on, but really her suck isn't strong enough to create a vacuum latch that is needed to really get milk like's she supposed to. Obviously I have no frame of reference, so learning that now...is a little frustrating. Also, we noticed that she has a groove in the top of her palette of her mouth. Sometimes this could be because of intubation - but then again, Ellie was only intubated for about two days. She just isn't curling her tongue and sucking well enough - hopefully this will get better with time as she continues to grow and develop. In the mean time, prayers for Mom as I'd sure like to be breastfeeding more than one time a day! But with her decrease in eating lately, I sure feel more comfortable with knowing how much she's eating!
On to the Doctor's appt - Dr.Duff checked her out and everything vitals wise -heart/lungs sounded good - so it's not like she's having to "work harder" to eat or anything. He said that we're just going to keep watching her and we'll just have to push through this little hiccup of not eating very much. She weighed 7 lb. 4 1/4 oz. today - which she was 7 lb. 4 oz. on Monday. He said we're going to do weight checks for a couple more weeks. I told him that I had been breaking his rules of trying to keep feeding time down to 20-25 min. I said it was taking more like 30-35 to get her to eat 40 some feeedings, and 20 the next...he said it's ok, "break the rule" let's just try to get her to eat! And we're going to start watching more cues for "on demand" ranging from 2 - 4 hours (no more than 4) and see if that has some effect too. We obviously can't go up anymore in calories - and we're continuing with 24 calorie - adding formula to the breastmilk every feeding. I would also like to point out that he did take the copy of our excel spreadsheet that has how much she eats, daily average, output patterns, special notes about her feedings, etc. and said we did a good job of tracking Ellie's every move!! :) He also said it was helpful so he can figure how much she will need to be eating per day so that she's gaining weight. I asked if he could let me know that magic number of how much per day she's supposed to be eating (it's a formula based on her weight) and he said "nope, I'm not going go give you that number. You don't need to worry about that, that's my job to figure and make sure she's gaining" - I just laughed, I said it's probably best that way. What a good answer Dr.Duff!
For the gunky eyes - he actually said it was a tear duct thing. DUH...why didn't I think of that! I guess I'm just so parinoid that she's going to get sick, that I forget the simpler things like that. We got some drops to use for her eyes for the next week and then he taught us how to exercise the tear duct with our finger (like 2 times a day). So we'll hopefully get rid of that gunk!
I asked him about symptoms to watch for with colds - and where I thought mucous and sounding congested was a good one to watch for, he said that with babies since they are such mouth breathers that it's hard to tell if it's their nose and just boogers or their chest. He said to watch her color and breathing - if she's having to breath really hard, seeing her ribs really badly when she's trying to take breaths in, wheezing, that kind of stuff - then it's probably cold like symptoms. Good to know.
Dr. Duff also mentioned how Ellie has a lot of little friends that also come see him. He's like, man, she's famous around here! :) Too funny! I know it's all you moms who read the blog...and yes, we all love Dr.Duff. He's doing a great job with Ellie's care!
Wednesday, December 3, 2008
Happy 3 Month Birthday Ellie!
Nice Try Mom and Dad
Well they say "The clothes make the man." So we thought we would see if the clothes make the baby too. Since Ellie has been a little sleepy during many of her feedings lately we decided to try opening her eyes via her bib. As you can see it worked spectacularly. Hmm ... maybe next time we'll just feed the bib.
I should give credit where credit is due. She actually ate 65 mL at that feeding which is the most she has eaten at one feeding in several days. So maybe the wide-eyed bib did work. Or maybe mom is just getting that good at feeding her. Who knows?
Pray for Ellie's feedings!
So Miss Ellie is sure being sluggish in her eating patterns the past couple days. From the NICU she came home eating nearly 2 0z.! Yesterday and this morning - we've had to fight with her to stay awake (for longer than we should!) to get her to at least take 20 ml! Then the next feeding, she'll eat 40 - which is better, but I guess I'm just nervous about her eating patterns. And I feel like I've tried everything in the sun to keep her awake! I realize this is something that newborns do struggle with, but I guess I'm just a little over parinoid (due to my lovely 71 days in the NICU!). Anyways, I called the Doctor, but am still waiting to hear back - although I'm not sure what he'll tell me. I did just get back from class though and Ben said she ate 57 mL and she seemed at least more interested than she has the past couple days. So yeah, that's good - I'm just praying this is just a "phase" and that she'll start eating well again! After all, we can't plateau at 7 lbs. 4 oz!!!! Prayers for me and Ben as well - we're facing those frustrating parent moments when all you want is just for them to EAT...but you can't exactly force it! It'll be ok...I know....one day at a time....remember...71 days in the NICU...one day at a time.
Monday, December 1, 2008
ROP Free!!!
We got back from Topkea tonight from Ellie's eye exam with the retina specialist and after a LONG time waiting in the waiting room - she got her exam and then had a wonderful report. She has no symptoms of Retinopathy of Prematurity (ROP) - those vessels behind the retina. So we're in the clear there. The Dr said her eyes look great and what they should be at this point. So he discharged her from his "specialty" care and we just need to follow up with a pediatrician eye doctor in 6 months. We were pretty excited for the good report and very thankful that her prematurity hasn't affected her eye sight. Praise Jesus! We also had a weight check and her weight now is 7 lbs. 4 oz. (which was the same on Wed at the cardiologist office, but then again - they are different scales!) We also stopped by the NICU and saw Ellen - it was really good to see her and the nurses were all happy to see us and said that she looked great!
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