Ellie Update

Ellie didn't really mind tummy time! She actually fell right asleep! Maybe it's because she spent all that time on her tummy in the NICU! Ellie went to the Doctor yesterday for another weight check and she now weighs 8 lbs. and 6 3/4 oz.! We were very happy! And...we don't have to come back to the doctor for another weight check until her 4 month appointment on January 15. So obviously, Dr.Duff thinks she's gaining pretty well these days. Yesterday we tried feeding her every three hours instead of two...she didn't do the greatest, but Ben is convinced she needs another day to see if she's ready. Over the night time she ate only around one ounce for the feedings,but then this morning she was ready for sure! She ate 80 mL which might be an all time high! Today Aunt Audrie came to help out caring for Ellie so that Mom and Dad can get some more homework done - the time is sure ticking fast to get our classes done before the next semester starts up again! Mom's officially back to work at Jardine, which is bittersweet. I miss my co-workers, but at the same time - I'm really having a hard time with the fact that I won't be able to care for her 24/7 much longer due to the many lovely roles that I am playing at this point in my life! So yesterday was our first day at Lori's. Aside from my breakdown, the rest of the day was filled with fun catching up on life (Lori and I became good friends when we were undergrads here at K-State) since the crazyness of Ellie coming early! Bill and Lori have an adorable 17 month old, Bridget who is full of energy. Ellie is going to love watching Bridget run non stop. So far she's slept through Bridget's screams! We are very blessed to have such a wonderful woman and mom to care for our little Ellie while Mom and Dad finish up school and work. We're going back on Thursday (both me and Ellie) for another day for Lori to get used to all Ellie's needs (the monitor, the caffeine, etc!) Really, it's more for me though and I'm grateful that Lori's ok with me hanging out too! Friday will be Ellie's first morning with Lori with out mom! Prayers for me and Lori for that matter! So I pretty much wrote before how I was giving up on nursing...well, I hadn't tried nursing for maybe a week until Christmas Eve I was like...what the heck..I'm gonna try again. So I did and Ellie was a different baby! It's like the lightbulb turned on and she nursed really well! Now we've been nursing about 3 times a day and it's going well for the most part! It was a nice Christmas gift!

Ellie's First Christmas

What a wonderful blessing to spend our first Christmas with our Little Ellie. Although it was very different and hard to be away from our family this Christmas, we sure enjoyed the day. We started the morning off with monkey bread and an egg bake and then some pork tenderloin, stuffing, vegetables and pecan pie for our Christmas Dinner. Unfortunately Ellie didn't have much variety in her meals though out the day, but she didn't complain much. Ben and I exchanged gifts and then we also got gifts for Ellie, separately. So it was a surprise to see what each of us got our little girl! My favorite gift she got from dad were these cute red shoes! I was really excited because Ben got me a digital photo frame - so I can put all the pictures I want on there and it's my own personal slide show! Then Team Gramkow decided to decorate a gingerbread house. It was pretty fun and a tradition I think Ellie will love down the road! We are thankful for Jesus, the Son and the chance to remember His birth. We are thankful for a Jesus who has given us such a blessed gift for Christmas this year...our little Ellie.

We love being a family!

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...

Fun Day! The Occupational Therapist came to see us!

Today has been a pretty fun day. We're in good spirits because Ellie is eating MORE! Wahoo! We've tried now for a full 24 hours to only fortify the breastmilk to 22 calories and then also serve a couple feedings of straight breastmilk (which is 20 calorie) and we've noticed she is more hungry! YAY! So she's been averaging 50-60 mLs per feeding. We're feeding her every two hours during the day and every three at night. So yes, the trend is continuing! AND...her pooping is becoming more frequent! It's more than just once a week now! Yippee! Now, we'll just have to see if this experiment still allows her to have enough calories to gain weight. We'll find out for sure on Monday at Dr.Duff's. Oh, and her eye did clear up with the drops we already had for the tear duct. Nursing hasn't gone very well again - she arch backs and even just starts getting fussy even when I begin putting her at the breast. I'm finding out that it's really hard to balance all my life roles right now and just am not sure how much longer I'm going to try the breastfeeding. I haven't given up completely, and am still pumping, but well...I dunno. We'll see. See those wide eyes in that picture? Yes, our little girl is awake more! Today she has just been a good baby, content and just looking around. Fun fun. Ben is back in full health and Mom sure appreciated seeing daddy and Ellie when she got home from her practicum (I've been trying to make up as many hours as possible lately...still have quite a few more to go but have until next semester starts to finish them). Today we had our first consultation with Jeanette with the Infant and Toddler Program. She is part of a team made up of an occupational therapist (what she is), speech therapist, early education specialist, physical therapist. So she'll be coming to visit us every other week to help educate us on Ellie's development. We have a task list for this week, so it will be fun to pay closer attention to the developmental cues Ellie's showing. She was wide awake while Jeanette was here. She was following a toy with her eyes - which made us so proud as we've been talking to her close this whole time, but just didn't notice how well her eyes could follow an object! She also moved around quite a bit - wiggled both of her arms, legs, so that was good too. We're obviously not expecting her to do a lot since she's adjusted age 3 weeks! We are also going to try mirroring faces - sticking out our tongue, see if she'll do it. She was also impressed with how she just sat there staring around and listening to us talk - Jeanette said maybe she'll be social like her mama! :) We also got a couple books to reference for premature babies and then one for infant eating and swallowing. Most of this visit was an information gathering session. We're looking forward to Jeanette's next visit to see what Ellie can do then - it's January 13.

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!

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...

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.

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

Well, we've entered into the world of experimenting! Which I'm now learning- all you mom's of full-term babies who take their kiddos home three days after their born -well, that's what you just "have to do." I guess it just took a lot of people who love me to tell me that yes...that's what you have to do now that you're at home! I guess Ellie's not the only one having "ah-ha" lightbulb moments. It's been a very hard transition for Ben and I - we're first time parents, we've come from the only frame of reference is the NICU. Where we knew exactly what Ellie was supposed to eat, what hours, and our medical staff always told us pretty much what to expect. So this whole experimenting thing....very new to us! We honestly, ok, maybe more me...thought why couldn't we just continue how the NICU did things - she grew well there, they know what they're doing! After having a great day with Cousin Audrey in Topkea she was able to make some observations of Miss. Ellie. It was great having another pair of eyes to watch Ellie eat. She did notice the groove on the top of her palette and we determined that she could be getting a lot of air when she both nurses and eats from the bottle. Ellie nursed really well the first feeding we were at Audrey's (she's also a breastfeeding educator from the Breastfeeding Clinic) and both Ben and I said she was showing off and that this was not the Ellie we've known for the past couple days! That was by far the best she's ever nursed. Then at the next feeding Audrey got to experience the arch back girl we know and love. She fed her and said that really, if Ellie's tolerating the fast-flow nipple, then it's best to just "get it down her" so she can get more volume (which remember she's only eating half of what she needs). We're also in the business of trying out bottle We're also going to try omitting the full-formula feedings and go all feedings just fortified to 24 calories. Also, since we've been home from Audreys' cause obviously that was a couple days ago - we think she is able to each an ounce every 2 hours....where she only would eat an ounce every 3 hours - so we're going to see how this goes - it's a bit tiresome - but we're "experimenting" remember! Right...that's what everyone does. We're interested to see what Ellie weighs tomorrow. Funny thing too is that Audrey mentioned that she thinks Ellie might be colic, she swallows a lot of air - is super gassy and then she gets super impatient when whe doesn't get the bottle right away. Then you'll notice spurts during her feeding when she arch backs and cries. She also said it might look like it's hurting her to swallow - not sure if that is the reflux or what - but again - we're experimenting and wondering if the high calorie diet she's on is helping her gain weight - but maybe is just filling her up faster. Audrey also mentioned that she has a bit of a temper....must be Ben's side. :) Prayers for us as we continue to figure out this littly mystery. Nursing still has not been the most positive experience - but we're still trying and we're going to try twice a day now - I've also got a supplemental nursing system that might help out too...Audrey said that Ellie has been eating from a bottle for a long time now - so she's obviously not used to nursing and she has to work harder and it's just obviously different. I can honestly say I'm a little more relaxed today...and less stressed. I know we just have to be a little more patient for things and in the mean time we're enjoying our little girl. See, even last night we watched a movie - all three of us - of course only one of us stayed awake for the entire movie (prince caspian - narnia one...it's pretty good...well, what I saw). Poor Ben. :)

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!

She's a gaining! Wahoo!

Started out pretty good. Ok, obviously she wanted her photo to be done...we actually thought this was still really cute! Ah yes...laying down is much better! After today's weight check, we are pleased! Ellie now weighs 7 lbs. 9 and 1/4 oz. (we can't forget that 1/4 oz here!) which is 3440 grams. So she's gained roughly 5 oz. since her last appt on Thursday when she weighed in at 7 lb. 4 oz. She's still really sporatic in her eating - however, Ben and I are still trying to figure out what's best for this little mystery! She's been waking up ready to eat after some two hours, which is new! So maybe she's just going to eat smaller amounts more frequently....we'll just have to see how it goes! Oh, and she did have her weekly poop...apparently Monday is her day...it is so funny...I wonder when that will change. Sorry we haven't been the best at blogging lately - we're trying to balance taking care of a newborn and catch up on A LOT of homework! I have two presentations this week - and then starting to make up my 78 hours of practicum I missed while gone with Ellie. So yeah...life's pretty busy, but we're hanging in there! Until next time.... Love, Team Gramkow

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.

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!

Happy 3 Month Birthday Ellie!

Major props go out to Ellie for making it to the three month mark. Three months ago today Mandy and I were sitting on the couch talking about her upcoming doctor's appointment and well the rest, as they say, is history. Ellie we're glad you're here and we're looking forward to seeing a lot more of you in the future. In fact, hopefully there will be a lot more of you tomorrow morning when you will have your latest weight check and doctor's appointment. (at 10:45 a.m.) Oh...and we're meeting with Melanie (lactation consultant) too at 10 a.m. - hopefully Ellie's sucking will have improved so we can nurse more than once a day!

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.

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!

We are Family!

Well, Team Gramkow sure has had a lot of fun hanging out as a family. We are very grateful for each other and SMILES! Ellie's eating patterns are still low, from what we see. She's averaging 45-50 mLs per day. We'd like her to be eating more, but I guess as long as she's still gaining weight, that's what matters. Yesterday we had the social worker from the Infant-Toddler program come and collect information about Ellie. This is a program provided by the Riley County Health Department, that will help us help Ellie's growth and development. They are a team of occupational therapist, speech therapist, physical therapist, social worker, etc. We're pretty thankful there are programs like this out there to help educate us as how to best care for Ellie. Oh, and we're back in Topeka on Monday for her eye exam with Dr. Warren who is a retinal specialist. This is to check out her for ROP or the vessels behind her retina. The vessels still are showing prematurity. I think this will be a longer road - finding out about her sight...just because things are still showing "premature" and rightfully so because she was premature. Here are some fun pictures from the past couple days! Ben got christened...yep, she obviously didn't tolerate any of this feeding...sure makes you feel so sad, but at the same time, were in such amazement that so much came out of such a little person, we had to take a picture! Grandma and Grandpas have special privileges. Grandma and Grandpa Gramkow stopped to hold Ellie for the first time on their way back from their Thanksgiving Dinner. Here is a picture of Ellie 1 day adjusted age. This adjusted age started from her due date, Nov.27 and this is the "date" we'll use for her growth and development, even though she'll almost technically be 3 months old this week!

WE ARE THANKFUL!

(From November 2008)
Last night I shared my testimony at the Thanksgiving Eve service, with our church here in Manhattan, Grace Baptist. It was very emotional however, God gave me the strength in between tears to read the whole story myself. I did have my brother Wade up front with me for support and to take over reading if needed. Ben also made a slideshow to show Ellie's journey - and it has the song, Loving You Eternally that I posted about before. --> (See link at bottom of this page) Please know that we are forever thankful for your prayers for our Little Ellie. This Thanksgiving means so much to us this year. Thanks for taking this journey with Team Gramkow. ____________________________________________________________________
My name is Mandy Gramkow and I am going to share with you a glimpse of why this Thanksgiving means so much to my husband Ben and I. Ben couldn’t be here because he is with our little Ellie (who has a very weak immunity) at home. I have asked my brother, Wade to help me read our story if I am to get too emotional…and for those of you who know me…it’s likely. We are thankful… I remember thinking right after we Gramkows found out we were pregnant – that I really hoped that this little one would draw me closer to God. Little did I know the path that He would choose for our family. We are so thankful that God chose us to be parents, to give us the desire of our hearts – however, we had no idea that we would become parents on His timeline – 3 months early.

September 3 is a day that I will never forget as our world was turned upside down. I had a rough week physically leading up to that day and moved my doctor’s appointment up. My visit lasted short of what seemed to be 5 minutes as my doctor hurriedly told us to get to the hospital. I was 5 cm dilated and 100% effaced. I was laboring at 28 weeks and would be life-flighted to Topeka. God’s comfort and peace was very apparent that day. I got the first of three suggested shots to help mature the baby’s lungs here in Manhattan. I remember having a peace about me as I flew in the helicopter with the flight crew the 23 minutes it took to get to Stormont-Vail. It wasn’t me remaining calm, God was with me. God provided a friend to drive Ben, my husband to Topeka, as really…we had no idea what was about to happen. I guess in times like this – you reach a point of complete surrender and trust because honestly, we didn’t have time to really think.

When I got to Topeka, the accepting physician said that he wasn’t going to wait for me to deliver in the room. He decided to break my water and have the neonatologist team there and ready. So little time! I was asked to get ready to deliver, but wait – we had our childbirth classes scheduled for October 6. We thought we had more time. The doctor checked the baby’s positioning and determined that the baby was breech so he called an emergency C-section. Another panic moment, where again, I had a peace and just wanted to do what’s best for the baby. My brother Wade happened to be in Topeka that day and was there with me until Ben arrived. They gave me general anesthesia and when I came too, faithful nurse Peggy, who had been with me since I got off the helicopter, and told me that we had a little girl. I thought for sure that it was a little boy causing all this drama.

Ben had followed our little 2 pound, 8 oz. baby girl, Ellie Jo, to the Neonatal Intensive Care Unit. I knew a NICU probably existed, and had heard about premature babies, but boy, the first few days at the hospital learning about our little Ellie’s condition – I had no idea how fragile this little life was. Ellie’s eyes were both still sealed shut, she had severe bruising on her head and face, and was immediately placed in an isolette to keep her warm.

Her skin was paper thin and sticky. Her little ears were also like paper and plastered to her head. Ben and I are life-long students, but this was a course like none before. Why me? Why us – this is our first baby, we’re both busy graduate students, this just isn’t the way it’s supposed to happen. Apparently God trusts us and knew we could handle it. Oh that’s a hard lesson to really grasp – and I’m still learning to grasp it. From day one, we had to remind ourselves that this was part of God’s plan and Ellie just couldn’t wait to meet us. Not everyone gets to see on the outside the amazing miracle of life and the development of a baby during the last trimester. We had to wait three days just to hold our little girl for 6 minutes because she couldn’t tolerate too much stimulation. What a hard lesson to learn too – when you can see your baby lying there, but can’t do the things that moms are supposed to get to do.

I couldn’t handle it on my own strength;

Ben and I were constantly drawn to our knees seeking God to carry us in this time of waiting. Talk about learning a lesson on the sovereignty of God! He was in control. We couldn’t do anything but stand by our little girl’s side and watch the Lord’s amazing work. Ellie was off the ventilator after day 2 and you had only had one of the three shots. Her first feeding of breast milk was 2.5 mL on day 3. (there are 30 ml in one ounce) Each day she amazed us more and more. God protected Ellie from infection and some potentially major bowel diseases. It’s a lot to ask a little premature baby to start eating, using her bowels, using her lungs – all things that were supposed to mature in the womb – until tomorrow – Yep, my due date was originally November 27, Thanksgiving Day.

This whole experience has put a new perspective on being thankful.

I can’t even list all of the times where I was moved to tears because of how the Lord provided. But I will try to share a few.
1. Ellie was born under 1200 grams which qualified her for a medical card or Medicaid. This meant that her NICU bills would be covered 100%. I remember hyperventilating the day we had our care conference with the medical team and social worker and hearing that news. God knew. He knew what he was doing and he’s provided. The cost of Ellie’s care has already totaled in the hundreds of thousands of dollars. Our cost was emotion and trust. We are thankful.
2. God provided a place for us to stay - I’m sure you’ve all heard of the Ronald McDonald hous – but maybe never realized what they did until you have someone need it. It was a huge blessing to be so close to the hospital. God provided for us as we never had to pay our rent there once because of His giving people. We are thankful.
3. We found a temporary church home in Topkea. What a blessing to be a part of the body of Christ – every sermon spoke to us in a different way, the worship was just what I needed to comfort my heart. There were people from Topkea Bible Church that didn’t even know us (just friends of friends, etc.) that were praying for our little Ellie. They made meals and brought them to Ronnie’s, they sent us notes of encouragement, they helped pay for our rent at Ronnie’s. We are thankful.
4. We received numerous gifts, notes of encouragement, and meals, from this church – Grace Baptist – some of you I had never met, but am so grateful that you took the time to write us – whether it was scripture or a success story of a premature birth in the family. We needed to hear those things from you. It was a comfort knowing that people at home were also praying for Ellie and providing for our immediate physical needs. Thank you for responding to God’s prompting to reach out to us. We are thankful.
5. Ben and I are on track to graduate with master’s degrees, K-State was great in allowing us to work from a distance on our classes. I work with and for amazing people at the Jardine Apartments with K-State Housing and Dining, and they too were able to work a plan out for me to work from a distance. Now that we are home we are playing a lot of catch-up, but still…We are thankful.
6. We were blessed to have an amazing medical staff at Stormont-Vail care for our little princess. She spent 71 days with her NICU family. They spent countless hours explaining to Ben and I her progress, answering our endless list of questions, reminding us that “she’s not even supposed to be here yet.” Thank you God for motivating compassionate people to learn about little babies and how to help them thrive in their prematurity. We are thankful.
7. November 13 – after 71 days in the NICU we were able to bring our little Ellie home – all 6 lbs. and 7 oz. of her! We are thankful.
8. We worship and choose to follow an amazing, creative God. He has carried us, all three of us, through the past chapter in our life and we’re so glad he’ll continue to be by our side. Ellie is a precious gift to us and we pray that people were and are able to see Jesus through her story and fight for life. We pray that she chooses to love Him and we can’t wait to share with her how God was right by her side from day one.

Thank you God. We are forever thankful.

To Topeka to see the Cardiologist - our 7 pounder!

WEIGHT UPDATE! I totally forgot to mention that she's up to 7 lbs. 4 oz. now! AND...20 1/8 inches long! Wahoo! Well, we're heading to Topkea today for Ellie's cardiologist appointment. It's at 1:30 p.m. today. Please pray for the outcome - we're really hoping Ellie's PDA vessesl is closed. Will of course give a report when we return! The Report: Well, after seeing Dr.Schroder, the cardiologist, we found out that Ellie's PDA vessel is still open, but it's very small! The Dr. said that we would not do much for it now, but that we'd keep an eye on it. So we are to come back in 6 months and hopefully it will be closed then. She also heard the murmur - she said she really had to struggle to hear it though. So all in all, a good report as this small vessel isn't having any adverse affects on Ellie's health at this point.

Back on Track

Well, we just got back from the Doctor's office for Ellie's weight check. She GAINED! Wahoo! She's now up to 6 lbs. 14 1/4 oz. (So that's 3130 grams). So that means that from Friday to Monday, she gained at least an ounce a day...which is what she's supposed to be doing! Yippee! Obvioulsy the increase in fortifying the breastmilk to 24 calories is also helping! And...thanks for your prayers because she actually had a bowel movement on her own! Wahoo! Yep, this morning and Ben even weighed the diaper - 45 grams! We were about as excited as you can be at 4 a.m.! She's still having streaky eating patterns. But her averages are up. This morning she ate around 40 mL and then just at 1 pm she ate 60 again (right in time to get weighed at the Drs office!). She's been fussy more than normal, ha...normal...still not quite sure what that means!...and I think it's her acid reflux. Also, I've notice she's sneezing more! They did say sneezing was a sign of stress, but then again, allergies? or...just plain sneezing...oh the joys of trying to solve the Ellie mystery! Ben and I have both been able to get homework done today which is a miracle in itself...this is tough work trying to take care of the Little Miss and do homework!I can't believe Thanksgiving is almost here, which was my original due date. Seems crazy that this is the time when I was supposed to have Ellie. Seems like time has taken forever, yet also gone so fast at the same time. I'm actually going to share at our church, Grace Baptist, here in Manhattan, about how thankful we are to God for Ellie and the Journey thus far, at our Thanksgiving Eve Service on Wednesday. Prayers that God would help me narrow down what to share and give me the words to speak.Ok, and Ben wanted me to add this one...he calls it "Where's Ellie?" Apparently she looked...cold? This is what happens when Mom is upstairs in the loft apartment doing homework and Ben is downstairs with Ellie doing homework and on Ellie duty. :)

Go K-State!

I've been waiting my whole life to wear this K-State Purple Onesie! Go K-State! And see...I'm already cheering!

Not Gaining Weight :(

Well, it's been a bit of a whirlwind since Ellie's last appointment. Wednesday it seemed like she was eating well, Thursday she ate awesome - about 60 mL consistently, (but the past few days she's been averaging about 45 mL per day (yes, Ben figures daily averages) and then today she's been averaging 30 mL and has really been sluggish. Not sure what she's trying to tell us. But I really thought she would have gained more weight than a little less than an ounce! Today we went back to see Melanie (Lactation Consultant) at Mercy and the Little Miss hadn't even gained an ounce since Monday when we saw her last. Granted we did give her a suppository on Wednesday, which helped some, but it wasn't a mondo amount...hmm...so Melanie called Dr. Duff and wanted to know if we needed to change anything with her diet. I have been actually separating the fore milk and hind milk when I pump - yeah, I know..didn't know that was even possible. But apparently the first two minutes of milk is more like "skim" watery, appetizer milk and then the creamy stuff follows - which is hind milk - and possibly higher in calories! So we've just been feeding the hind milk in her bottle feedings. On a good note, she did take 38 mL nursing today with Melanie....which is a high! It was actually the most she's taken all day (since the 1 am feeding). So the verdict is...we're going to start fortifying my breastmilk to 24 calorie with each feeding - and still keeping the 2 Neosure feedings also to 24 calorie. Oh, I forgot to mention that she did have her first episode that caused the monitor to go off - I think it was Wednesday. She did not have a color change - thank God, but it was a apnea - so she paused her breathing for longer than 20 seconds - but resolved herself. Mom and Dad are trying to devise some sort of schedule , which is quite the struggle - but we'll get it. Grandma Weber is here helping and being a drill sargent about us getting homework done (drill sargent in a good way though). She's staying with us while Grandpa Weber is at Wade's taking care of those grandkids (Wade and Caryn are in Hawaii, I'm so jealous!) I'm sure Grandma doesn't mind at all spending time with Ellie. It's also been nice to have her here (of course good bonding time with my mom!) to tell me things like, stop freaking out Mandy, all babies make "this noise, that noise, do that, etc." Oh, and I was also really excited because my mom (who works at the a hospital) got us a supply of hand sanitizer in foam form - JUST like at the NICU! :) Grandma also brought pictures of Aunt Wendy Jo when she was little and boy, Ellie looks a lot like her! Too funny! Grandma is super lucky she got to be the first one to hold Ellie besides Mom and Dad. Don't worry, I made her wash hands and sanitize like 500 times. Pays to be family. I have quite a bit of homework to catch up on which seems overwhelming, but in due time, it will all get done! Praise Jesus that my professor allowed to complete my current practicum hours over Christmas Break. I'm also technically on my maternity leave at Jardine for 6 weeks now. So now it will be homework catch up and mommy time. We go to Dr.Duff's office on Monday for another weight check. Hopefully she'll start progressing with the increased calories!