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!

Ellie's Eyes

We are so in love with Ellie's beautiful eyes - I hope they turn out to be the same shade as her Daddy's! This was pretty funny because she does not like her hat...or maybe the lights? :) I know I know...she was upset, but still really cute! She's more awake these days which is fun and tiring all at the same time. Still no bowel movement today, so Dr.Duff said a suppository was needed. So far it's helped...a little. We've also been cleaning our apartment more to make room for Ellie's stuff! And..we even decorated a section of a wall for her Farm Animal themed nursery (that really won't exist fully until after we move in May!) Enjoy the pictures! We're still trying to get back into the swing of things!

More Lessons

Well, today was a tough day for the Gramkows...no worries...Ellie is doing great! She's averaging about 45 mL per feeding. Mom is busy trying to get homework caught up, meeting with professors this week, and went back to class tonight for the first time since Miss. Ellie's arrival. However, in my efforts in getting things planned for next semester, I found out today that my practicum placement (basically an internship that you have for my degree program) fell through for next semester - so I'm back searching. Ben also found out that he did not get the job at Garmin. We're pretty bummed about that - we really want to be in Kansas City! But...there are other engineering firms in Kansas City, now Ben just has to find them. We're still learning more lessons about life and God's plan that he has for us. So, we're not sure what to do next. BUT...if anything that we've learned through our journey with Ellie's early arrival, it's that we must take one day at a time - and apparently that lesson is continuing even though we're home! Thanks for your prayers for Ben and his interviews, but obviously God wants us in a different place....or maybe there's something bigger and better out there that we don't even know about yet! Prayers for us as we get back into school - Ben's been amazing at caring for Ellie and letting me get things figured out "plan of action" wise for homework this week, and next week it's his turn!

Ellie's First Doctor's Visit in Manhattan

Well, today was a shock with parenthood yet again - seriously, it's true - you just can't get out the door when you want! After frantically packing the diaper bag and getting Miss. Ellie all situated in her carseat and monitor in hand...we made it to Dr.Duff's office for our first appointment. And, since you're all used to reading Ellie's weight at 9 p.m., we thought we'd keep you in suspense until now about what she weighed today! Drum roll please....6 lbs. 9.5 oz.! Yippee! She gained weight since we came home! Wahoo! I was a tad worried. She was 6 lbs. 7.2 oz. when we brought her home from Stormont. Her length measured at 19 1/2, but Ben thinks the nurse read the tape wrong (of course he does). He thinks it was more like 19 7/8 inches! So technically she shrunk since she came home from the hospital. Her head circumference was the same at 34 cm. It was a bit depressing seeing that percentiles are just never going to measure up for Ellie since she's a preemie. So yeah, all her stats were below the 3% mark. Oh well! I bet she'd be right up there compared to other preemies her gestational age! We really like Dr.Duff. He said he's known Ellen for a while and has enjoyed working with her (when she was a flight nurse too) and he practiced in Mason City, IA for a few years. Who knew...small world! He seemed very up to date (since he had also gotten report via phone from Ellen) with Ellie's story and medical history. He said he was really pleased with her progress. He said her head looked wonderful for her age, her umbilical hernia still looked ok, and he didn't hear a heart murmur! Her overall check went well. He said he would like us to come in weekly for two weeks, just to make sure she's still gaining weight. He also recommended us lowering her feeding duration to 20-25 minutes instead of 30 minutes. So about the pooping issue or lack thereof...we have to call him if no poop by Wednesday. I'm thinking he'll request a suppository, especially since the rectal temp doesn't really work for the little one. He did say he's not too concerned because her bowel sounds are active and her stools aren't hard. So he said it's not an issue of constipation, it's more an issue of infrequency...and some babies are just like that. He was pleased to hear that we haven't had any A's and B's with the home monitor going off. I asked when we'd come back to see him and he said at her 4 month check (so in 2 months) and then we'd re-evaluate the caffeine and monitor business then. I told him that our prescription for caffeine was only for a month, (kind of hinting that maybe it'd be nice to not have the monitor more than a month) and he said to call when the end of the prescription comes. Obviously it's too early to tell if she can get off the caffeine...and we know that! We discussed her immunizations and she got more shots today. He said that the first RSV preventing (synagis) shot she got at Stormont would decrease her chances of getting it by 50%. She'll get a synagis shot every 28 days until cold/flu season is done (April). They'll have a home health nurse come and administer it. He also said they have the medicine shipped to our front door...what service! She got the second Hep B vaccine and then also the rotavirus. She didn't like that too well and has been a tad fussy (again understandable). We will be visiting Dr.Duff at 4 months, 6 months, 9 months, and 12 months...and then if needed obviously. We then hurried over to Melanie, the lactation consultant at Mercy Hospital, and met with her and tried nursing again. I think Ellie had performance anxiety...she only ate 18 mL (weighing her before and after). No, we decided that it was a big day for her and she was tired from the Dr. visit and handling and then those not so fun shots! So we are going to try again on Friday this week! Her feedings the rest of the day have been pretty consistant with 50ish mLs...Ellen would be proud! :) Until next time...Team Gramkow signing off!

November is Prematurity Awareness Month

Hi Friends,

I don't know if any of you Manhattan people know the Larkins and little Sierra's story, but this was a message posted on Sierra's Caring Bridge site about November being Prematurity Awareness Month. Even though I have not been able to connect with Stacey (mom) personally yet, I echo her efforts in supporting the March of Dimes efforts. I hadn't known what March of Dimes did until we had Ellie. Please sign the petition for Preemies on the March of Dimes Web site. This is especially special since this is the month that we brought our Ellie home. Please go to the link at the bottom of Stacey's message.

Love, Team Gramkow

Dear Friends & Family,

Laura Lewis with the March of Dimes in Kansas City wrote to me recently and ask me to write a letter to the editor here in Manhattan to draw attention to November being Prematurity Awareness Month. The Mercury called and said it would run today. If you have the time to visit the March of Dime website, your signature to the petition for preemies would make a difference!

Dear Letter to the Editor:

I’m writing as a mom, and a concerned citizen, to urge all Manhattan Mercury readers to sign the Petition for Preemies on the March of Dimes web site. This past year our 2^nd daughter, Sierra , was born at only 24.6 weeks. She weighed only 1.97 oz. and was 13 inches long. She spent 91 days in Stormont-Vail’s Neonatal Intensive Care Unit. Her journey is an incredible one and our family has been very blessed by the phenomenal care our daughter received in the NICU at Stormont. By looking at her today one would never realize the hurdles she had to overcome to fight to survive.

The March of Dimes pays a crucial role in funding research to find ways to help prevent premature births. In the U. S. today, one in eight babies is born prematurely and millions of children face serious health challenges or have trouble learning in school because they were born too soon. More newborns die from premature birth than any other cause. It is my hope through our families experience to spread awareness of the importance of finding ways to move forward in helping moms have healthy, full-term babies.

Please join our family and all families across Kansas and America this November during Prematurity Awareness Month by visiting the March of Dimes web site to sign the Petition for Preemies. By signing the Petition for Preemie at marchofdimes.com/petition you will help us make progress in preventing premature births. The number of people who sign can really make a difference!

Mike & Stacey Larkin

Parents of Mikayla & Sierra Larkin

Manhattan, KS

Sunday Fun Day!

Today has again gone by so fast! But it's been a fun day! I feel like all I do is laundry, clean bottles, pumping accessories, feed Ellie and well, this! Today's eating patterns are getting better. Just for Aunt Wendy and Grandma Weber (ok, maybe there are more people who want to know), I'll continue to write how she's eating: 2 am - 60 mL 5 am - 70 mL (good job on this one Ben!) 8 am - 51 mL 11 am - 18 mL - yeah, not so good 2 pm - 48 mL 5 pm - nursed and then 5 mL - so I'm not sure if she just filled herself up more nursing or what. I have an appt with Melanie at Mercy (lactation services) tomorrow and am eager to learn more! We're also excited to meet Dr.Duff and see what he has to say about Ellie's pooping problems. Today's been a week and no bowel movement. We have lots of questions for Dr.Duff (see Ellen, it wasn't JUST for you!) :) We've also still had some troubles with the caffeine clumping as we mix it in the milk - hopefully she's getting what she needs. So far - still no monitor episodes. Praise God! Well, here are some fun pictures from today! Notice her monitor "belt" we call it. This one only has two leads (around each armpit and near the nipple line). And then the belt holds them in place. Oh, and I got some really good pics of daddy and Ellie. They're pretty good buds! :)

Loving You Eternally

Well, I just wrote about how I was excited for my quality time with Ellie. So of course, with someone so little, someone who can't talk back, but can only make the sweetest noises...there leaves a lot of time for reflection, thanks and praise. Oh, where we've come. It's been so great getting things back in line at our apartment and with our life here in Manhattan; however, with each thing I put away, I'm reminded of how something was before we left for our journey in the NICU, and it moves me to tears.

Most of you who know me well know that I love to sing. I remember, from what seems like just yesterday, but was obviously three months ago, sitting at my computer singing to my belly. I did this a lot especially when Ben was away in Wichita for his summer internship. I thought the baby would like to hear lullabyes, so I bought the McCaughey Septuplets "Sweet Dreams" CD (which is super old, but so great!) and I always was drawn to sing my heart out and be moved to tears with one song imparticular. It's called, "Loving You Eternally" by Michael W. Smith. (I couldn't find it on Youtube, otherwise I'd include the link. ) *There's another song by Chris Rice on there called "Oh what dreams," but we won't go there right now!

So as I sit here, in my computer chair, singing to my little Ellie, looking at my sweet little girl, I can't help but cry through the lyrics as they mean so much more now that this chapter in our life is now over and we're back home.

Here are the song lyrics:

Little Baby, cherished, loved

Watched by angels from above

Who can know what years may hold?

Jesus loves you this I know.

Deepest Longing earnest prayer

Dearest hope and constant care

Showing you our Father's ways

Shining love in darkest days

No one knows what life may bring

I will promise just one thing

I will trust His love in me

Loving you eternally

If someday you turn from me

Looking toward the light you see

Even though we're far apart

Home is in your Father's heart

No one knows what life may bring

I will promise just one thing

I will trust His love in me

Loving you eternally

Please take a moment as you read this posting, to thank God for Ellie. We can't imagine our lives with out Ellie. We did not know what life would bring, but she is so amazing, such a delight, a miracle, and precious gift. Thank you Jesus for loving Ellie eternally and allowing me to trust Your love. Thank you for watching our little angel from up above.

Ellie's second full day at home

Well, her eating I thought was getting better, but then again, who knows...she's sporadic! :) Last night was rough...I confess our first frustration of parenthood - waking up to our princess who was supposed to get fed at 2 am, not 3 am (when she was crying). I frantically woke up and started crying when I saw the clock! Apparently the alarm clock didn't get set right. :( So Ellie was definitely awake and alert for that feeding! She ate like a rock star (understandable); 48 mL and then I even tried breastfeeding (since she was so awake). It went well! Unfortunately, then when it was Dad's turn at 5 a.m. he only got her to eat 16 mL and she was very sleepy. Then 60 mL at 8 am; 37 at 11 a.m.; and 50 just now at 2 p.m. So the home monitor went off about 3 times last night and this morning - but luckily they were all due to "break in contact" when we were picking Ellie up, changing diaper, etc. This means that it wasn't a true apnea/brady, it was just something wrong with the lead band. This afternoon we decided to venture downstairs with Ellie and try out the bouncy seat (minus the bouncy). She wasn't sure about it at first, and so we put some blanket rolls on the sides of her like in her carseat. She did ok, until she starting fussing at started puking out her mouth and her nose. (must have been reflux, since it was already a couple hours after she ate...then again, she eats all the time!) Of course, Ben and I were both eating, and frantically got the bulb syringe and got her out of the bouncy seat to her side. This was extra scary because yep, she turned blue and then dusk. BUT...it didn't obviously happen long enough for her monitor to go off. She is a smart girl though because she was holding her breath rather than aspirate. Still pretty scary being the first "episode" at home and needless to say, I didn't put her down for the next hour. Please pray for her bowel movements. I think she's really working on something because she's been fussy and really wiggly and gassy. Ben finally got to go to a K-State football game today! Yippee! I was excited for him and also for Ellie and I to have some quality time! :) Pictures to come later.

Welcome to true Parenthood!

Yes, yes, all you parents out there already knew and warned us of this, but now it's here and we are wondering HOW DOES THE TIME PASS SO QUICKLY? For starters, last night went pretty well. Fortunately, Ben and I did sleep lightly we'll say and did have a mid sleepy conversation of something like, "your turn, you get her" :) But boy, do we love having her here. We've been taking her temperature and trying to figure out how many layers she really does need! Ben's turn last night - he decided she needed a hat. She fussed. The next feeding I concluded the same thing and she would not stay still until I took that hat off. I thought she was going to wiggle upside down in her pack n play. We chuckled and said she must not like hats :) As far as the time thing...well, we had to do many errands, get appointments set up and of course pay close attention to the medications that we were mixing up for Ellie "for real on our own this time!" I totally went to Target this morning and hadn't showered...I figured that had to be a mom thing too...seriously 3 hours goes by so quickly! So in efforts to try to get some of our stuff put away from Topkea (because our couch and love seat were both covered), we got out the mandimoo that I got at my baby shower....which is AWESOME! And it was so fun to snuggle with Ellie and fold laundry at the same time! It kinda made me think that hey...this might be kind of how it was supposed to be at 38 weeks...however, Ben reminded me that "my version" was detachable! *yes, we can only joke about that now that we know Ellie is doing well and home! So, I thought I would post a picture of me and Ellie and no hands! :)

She's been eating better the last few feedings - 60 mL at 2 p.m.; then we tried breastfeeding at 5 p.m. and well, we can't measure that one so much anymore, but she did take 15 from the bottle after that; then at 8 p.m. she ate 60 again! Still not having stools though. I'll be interested to see what Dr.Duff wants to do about that on Monday. Oh Oh..and we did give Ellie her first bath at home! :) She's squeaky clean now! Unfinished business: Please pray for Ben as we haven't heard back from Garmin yet after his last interview...he's left messages/e-mails with them, but still no word. Also, thanks to everyone who donated toward the Tupperware Party for Ronnies. I had over a $700 party and still have more TW to pick out from the host credit! So far though they are stocked with cups, cannisters, plates, bowls, re heatable containers and even a rectangular cake taker for all those goodies that were always on the counter for our late night snacks! We've had some good moments of hanging out as Team Gramkow - Ben and I still comment that we can't believe we have a daughter! We'll try to keep posting as often as we can....time is so precious these days!

Ellie's Home!

Well, it's been a whirlwind of a day, but we've officially survived! I sure cried a lot leaving the NICU...that place was our family for the past two months...it was a bittersweet leave. Here are some pictures we captured amidst the packing up! As you can see Ellie got a special new dress just for going home! Here's Ellie saying bye to Ellen, our amazing nurse practitioner. We will miss her a lot!Ellie fussed when she got into the car seat; but then after she wiggled herself comfortable, she slept the whole way home. We didn't actually make it home until 5:30 p.m. because we were waiting for silly Medical Arts Pharmacy to get their story straight with the insurance company to cover the caffeine and prilosec that our little princess needed to go home on! When we got into Manhattan, this is what we saw on our door...and I cried again :) Now we'll see how the night goes. She's already not taken as much from the bottle as we hoped, 60 at 5:30 p.m.; 35 at 8:00; at 11 p.m. she took 43 mL. But then again, the NICU nurses all told me that the next 24 hours would be very different for Ellie and her surroundings/eating patterns. It was really weird not knowing how much weight she gained tonight...guess we just have to gage for ourselves while we're holding her now! :) We get to meet Dr.Duff, our pediatrician in Manhattan on Monday! Here's our little princess sleeping in her home! We're excited to be home, but please continue to pray for us as we all adjust. Notice her nifty home monitor!We pray that you all understand that we are requesting please no visitors for a month for starters. And then we will re-evaluate if we need to extend it. (That might really happen due to it being cold and flu season!) Ellie has a very weak immune system and after all we've been through, we don't want to risk it. We really hope you understand. BUT..we will continue with the blog and lots of PICTURES so you all can have a virtual relationship with Ellie!...no worries...this journey isn't over...we still have a long road ahead. Thanks for rejoicing with Team Gramkow. We're finally home. We are so thankful for this day; we thought it would never come.

Ellie in the News

Ellie made the news! Here is the proof. You can also view the video on the WIBW website. The video on the website doesn't show the anchors so the picture pauses at the beginning and the end. But at least the audio doesn't skip like it does in the video I posted. Mandy and I were very proud of our little girl. I just think it's great that they used so much footage. I was just tickled pink. (Then I guess I matched all of Ellie's pink stuff.) So here's my version: I was hanging out with my daughter ... as I do. Mandy had gone back to Ronald McDonald House for a free massage. Meanwhile the charge nurse came in and asked If it was okay for them to shoot Ellie. I tried to call Mandy but apparently she was too busy. So I signed the waiver. They came in and filmed Ellie and the room. Then they staged the scene with the doctor. Sure enough in walks this doctor that I had never seen before (in my 60+ days in the NICU). Oh, it turns out he's a big shot doctor that we would have seen if we had known Ellie was coming so early. So he introduced himself and asked me how she was doing and I told him she was starting to take her feedings well and acid reflux this and stooling that. You know ... small talk. Then the camera man got some more shots of me "being natural" with Ellie. Turns out she was asleep the whole time so I couldn't really interact with her much. (I didn't want to wake her.) Then he saw the powercat and made sure he got a close shot of it. Yep, the camera guy is a big K-State fan. In fact I heard from nurse Lisa (also a big K-State fan and met Bill Snyder) ... Lisa said that camera guy is the same one that films on court at K-State basketball games. Anyway we obviously thought it was pretty cool. Had to be the one day I wore my glasses though. Oops.

Breaking News

We found out today that the video shot by the Topeka news crew will be on tonight at 10 pm. If you can get the Topeka local news watch for the "For Your Health" segment on the Channel 13 local news. It's the CBS (WIBW) station. If you can't get the Topeka news check back here tomorrow and hopefully we'll have the video posted.

Top Ten Signs You've Been In The Hospital Too Long

10) You've got every parking spot scoped out in the parking garage. 9) Your Bonneville suddenly becomes a compact car in order to fit into the compact car parking spots. 8) You are on a first name basis with all the employees. 7) You decide to bring leftovers for lunch so you don't have to eat at the hospital cafeteria again. 6) You forget what the weather is like outside and wear flip flops in late October because you're dressed for the 75 degree hospital room. 5) People start asking you how long you've worked here. 4) You owe one of the cafeteria guys a favor. 3) Someone you saw on the first day comes back for a follow-up clinic. 2) You start finishing the nurse's sentences: "I suctioned her nose this morning ... " "Let me guess ... but you didn't really get anything?" And the number one sign that you've been in the hospital too long ... Your little girl finished all of her feedings from a bottle for over two days straight!

Ellie's Going Home Day

Wow. We can't believe it's finally here. After 71 days in the NICU, Ellie's finally ready to go home to Manhattan to be with Mommy and Daddy full time! We're so excited, giddy, anxious, nervous, and yes, I've cried already like a million times today! Well, Ellie had her eye exam this morning at around 9, so her feeding didn't get started until 10:30 ish. SOOO....we're going to now come home after the 1:00/1:30 p.m. feeding now, so we'll get on the road a little sooner than expected. Yippee! Ok, well, we'll make sure to post some pictures of Ellie in her cute home-coming dress later! Please continue to pray for us in this awesome transition to home. We were so wired last night and Ellie did pretty well in the Family room. Still can't believe this day is already here. Yes, lot's of prayers please....thanks for taking this journey with us. We couldn't have made it with out all your love and support...and prayers! We love you all so much! Ok...not going to cry...must start packing Ellie's room up - ok, yep, forget it, it's just going to be an emotional day! Being moved to tears....oh, Jesus, thank you so much for bringing us to this day. We are so grateful for our little Ellie. Thank you for all the lessons you've taught Ben and I and all the lessons you are going to continue to teach us. Thank you for giving us the desires of our heart...our little princess.

Look at me...I get to go home tomorrow!

Look at our princess with out her NG feeding tube! She did great all day with out it and has confirmed that she indeed is ready to go home to Manhattan! Yippee!

A Day in the Life

Today has been a crazy day. Sorry we haven't blogged much. But we're going to make up for it the same way we always do: by flooding you with new posts. Today we searched all of Topeka, KS for a princess luggage bag. (You know, the kind that Ellie will use as a carry on for all of her business flights.) Apparently they don't exist. Our nurse said that she had seen one recently. Actually she is the nurse we had a while back who is from Mercy in Manhattan and just works here in Topeka every now and then. So maybe she saw it in Manhattan somewhere. Who knows. But if anyone sees one please let us know where it is so we can jump for joy and purchase with glee. Amidst all the luggage hunting we picked up a few more things that we will need. We dropped off the prescriptions for Ellie's meds. And we ran a few other last minute errands. We didn't get back to the NICU quite as early as we would have liked so when we did it was time to do Ellie's assessment and then get her to the NICU hotel. At the assessment we got a bonus length measurement. Normally we only get them on Saturday but since today was Ellie's last 9 pm assessment they measured her length today. And they found her to be 18 3/4" long. That's a gain of half an inch since last Saturday! She also had a good weight gain. She weighed in at 6 lbs 7.2 oz (2925 g)! That's a pretty good gain. Way to grow Ellie! I should probably point out that she has a little added weight from the band that keeps her leads on. I think that amounts to about 20 grams. So she still had a good gain. Well I'm off to be a dad now! I don't know what my little girl needs from me right now, but I'll think of something.

The NICU Hotel

Tonight we're staying in the family room at the NICU. We're very excited. We're actually taking Ellie there right now! ... okay I've got to pause for a few minutes so we can go over there ... Okay we're there. We didn't even have to put her into the infant carrier we just rolled her right over there. It's a pretty sweet pad. There's a good reason I call it the NICU hotel ... it looks like a hotel room.

The nurse wheeled Ellie over here in her crib and now she's ours for the night. Okay, okay ... she's ours for more than just a night. But there's a tight schedule for tomorrow and it involves wheeling her back to her room after her 6 am feeding so she'll be there in time for rounds. I should probably clarify that Ellen gave us plenty of wiggle room while we were discussing the schedule but being the schedule people that we are (read "person that Mandy is") we got the the schedule hammered out pretty well. Hmm, I'd better go see if this hotel room has an in room jacuzzi.

We're going HOME!

More later - when we finally get to the hospital and settled into the family room - been a crazy day - but WE'RE COMING HOME TOMORROW! Leaving after the 3 p.m. feeding (that is our goal anyways!) This post will be updated soon!

The Triple Crown: Breathing, Feeding and Temp

We've known Ellie for awhile now. Mandy and I were just reminiscing about when Ellie was just a little tyke. Even then she showed a lot of strength as she began to breath on her own. As she began to gain weight, which she did extremely well, she began to regulate her temperature on her own. These were two big challenges that Ellie had to overcome in the NICU. A third challenge is eating on her own. She responded well when the doctors started feeding milk to her stomach instead of just IV fluids. She has come a long way since then and now she's working on taking all of her feedings from bottle or breast. And today she passed a major hurdle in that quest. Today she finished a 24 hour stretch of eating all of her feedings! She took her whole feeding at 6 pm yesterday and she's taken every feeding since! After her 9 pm feeding she ate 65 mL ... and then spit loads right onto mom. Mandy is showing off her "mommy badge" to all the nurses. Speaking of her 9 pm feeding she had her assessment and weighed 2880 grams (still 6 lbs 5 oz). That's a gain of 20 grams, which is a great number for an average. The nurse did not hear the heart murmur tonight. It's been a while now since they've heard it so we're hopeful that her PDA is gone now.

Almost Famous

Our little Ellie has gotten quite a lot of attention from friends and family as well as the NICU staff. Now she is getting even more attention. The news team at WIBW channel 13 (CBS) local news channel in Topeka came to the NICU today. They came because they are doing a health segment on preventing premature birth. The segment has nothing to do with Ellie but they wanted to film some premature babies. Apparently someone told them that Ellie was the cutest one here and they should come film her. Dad even got to be in some the shots. So if you get the Topeka news stations turn it to WIBW for the evening news on Thursday.

We're getting closer!!!

Ellie had a great night last night. At midnight she got the minimum 50 mL; at 3 a.m. she ate slowly but surely - 56 mL in the whole 30 minutes; then at 6 a.m. she took a whopping 74 mL in 12 minutes! I thought she would slow down for the 9 a.m. feeding, but then she took 60 mL! I'm really anxious to see how the noon feeding goes - we're going to try breastfeeding again! So...that makes 6 in a row! (if I counted right)

Two in a row!

Well, Miss Ellie took a record amount breastfeeding today at 3 pm - 30 mL; then Dad fed her 15 mL through the bottle, and she didn't have quite enough energy to eat all of her feeding, so they gavaged the rest. At 6 p.m. however, she did finish her whole bottle, but it did take the entire 30 minutes! Her 9 p.m. assessment indicated that she gained back her 20 grams she lost last night - so weight is 2860 grams; 6 lbs. 4.8 oz. AND...she finished 56 mL of her 57 (only has to get 50 mL) took whole 30 minutes again...but hey, it still counts! So we're at 2 in a row now! Wahoo!

Ellie there's a puppy waiting for you at home...

Ellie there's a puppy waiting for you at home... That's what Ellen, our nurse practitioner, was telling Ellie when we got here this morning. :) Although we had to break it to her that pets were not allowed at Jardine :) Anyways, Ellen was happy to see Ellie and us this morning to help us "take a deep breath" and talk about little Ellie and her needing us to wait a little while to go home. She's getting there Ellen said - the new goal is maybe by the end of this week. So...also, Ellen told Ellie that it could be a stuffed puppy waiting for her when we go home. So here's the update on Ellie's feedings: midnight - took 10 mL, gavaged the rest; she was pretty tired 0300 - finished her whole bottle (57 mL) and she was wide awake the nurse said 0600 - took 30 mL, gavaged 27 0900 - took it all in 20 minutes and was wide awake when Ellen was in assessing her. She even was smiley for Ellen :) noon - well, we have a small poop - this is progress! But, she didn't finish her bottle. She ate 43; gavaged the rest. We even got to mix her prilosec with the beginning of her bottle feeding (separate bottles) like we will when we're at home New Orders: no pulse ox; it's our job to watch color, etc. Her feedings got changed to ad lib every 3 hours - where she gets a range now to eat. She has to eat at least 50 mL to be considered a full feeding and can get more if she's still hungry after she's done. We might get the home monitor on her soon (since they make sure it's good to go in the hospital before we go home) Other Topics: *We asked Ellen about breastfeeding once a day and if she thought it was keeping her here. She really thinks its not playing a vital part. Once a day is not enough to affect her 24 hour feedings, so Ellen said I should keep with it. She said it would be more of a concern if Ellie was only taking 5 mL, etc. but since she's taking almost half her feedings, she says go for it. So I'm going to keep at it and we're going to try again at 3 p.m. *Ellen also cleared up the misinformation on what we like to call"rush day" -Friday; Ellen didn't think she would go home on the weekend and she was really just clarifying that she would equip us better for when we'd go home, most likely on a day shift, when she could be here! *Her pooping issues. She asked the doctors in rounds this morning and Dr. Sidlinger said let her go a week - no concern, it might just be her. This also might be something we discuss with Dr.Duff when we get to Manhattan. *We asked about feedings after home - when to increase and the general rule is increase 5 mLs a week. *staying in the family room (transition room equipped with bed, microwave, TV, bathroom, fridge) sometime this week - we'll be able to tell better after she's taken 8 consecutive bottles (24 hours)...which she's still waiting to do! *talked to Ellen about a bouncer seat and swing, and she said that would be too much stimulation for Ellie so to hold off on that for about a "month-ish" Please continue to pray for Ellie and her feedings. We're sure getting anxious to take our little princess home! Oh, and also pray for Ellie's little friend, Brayden. I've really gotten close with his mom, Mary and they just found out that little Brayden might be blind (she's talking with the pediatric neurologist more in depth today about the MRI results). Oh, this kind mossouse lady offered free massages for us staying at Ronnies, so Mary and I are going to take advantage of that tomorrow! :) Praise for our stay at Ronnies. The place really has been a huge blessing to us. They actually asked us to come speak at their annual "Cinderella Ball" fundraising event in August...we felt pretty honored. This is a dress up event, so it should be fun! Weird to think Ellie would be almost one by then! We'd love to share our story about our little princess to RMDH supporters. Ok, well, it's lunch time and before we know it, it'll be time for Ellie to eat again!

Splish Splash, I finally got a bath!

Today at 3 p.m. I breastfed Ellie again and she amazed us! She ate 24 mL and then had enough energy to finish the remainder of her feeding through the bottle! Wahoo! I was seriously jumping up and down celebrating when Ben finished the bottle with Ellie! I knew she could do it! Then we fed her at 6 p.m. and she took 41 mL and then had another "blue" desat for mom. :( So the nurse and I decided to call it quits. She got the rest of her feeding via gavage. So...we're back at square one in counting again...for our 16 consecutive feedings (48 hours) where she completes all her bottles. But that's ok Ellie - we'll wait for you. We got back tonight from Ronnie's after supper at 8:30 in order to give our little princess a bath! We totally missed in on Friday, and Saturday...and finally Sunday she got one! She smells so much better! And her hair looks so much better too. I think she actually has Dad's greasy hair syndrome (after not getting washed after a day :) We are trying some newborn size clothes now - she's getting so long these days! She's so cute and we love her Oh...so much! Tonight's assessment included a drop in her weight - probably due to the mondo poop that she had earlier today. She lost 20 grams so she's back down to 2840 grams - 6 lbs. 4 oz. Ben's feeding her right now so we'll see how that goes to see if our count starts again. Ok, well, she ate 47 and then was spent. So maybe we'll see if our count will start again at 12 midnight.

In and Out

I bet you are wondering how little Miss Ellie has been doing since last time. Well we were too. We found out that at the midnight feeding (Notice we were home before the midnight feeding started. That should count for something.) Ellie took her whole bottle. In fact she took her whole bottle again at the 3 am feeding. The nurse's main concern was that she thought Ellie might be working on a poop. By the way, these were 57 mL bottles because of her weight gain yesterday.

Next up was her car seat trial. She started at 4 am and stayed in there until 5:25 am. She did wonderfully. By the way the hospital doesn't recommend putting anything under the baby or on the straps unless it came with the car seat. But they do say it's okay to put some rolled up blankets beside them to keep them from slouching. And they say a blanket on top is fine too. Oh, you can see the rest of our car seat here. By 6 am she still hadn't stooled. She barely had a smear yesterday and I think that last real stool she had was last Wednesday. She didn't finish her 6 am feeding, she had 20 mL fed to her through the feeding tube. But then at 9 am she did finish her bottle. She took about 30 minutes to finish that bottle which is the time limit given her. Apparently studies have shown that if you keep them on the bottle for more than half an hour they actually use more calories than they get from the bottle. (I'm not sure if that applies to healthy full term kids.) Then came the enema (before the noon feeding). It worked. She had a stool weighing 158 grams! Then she had another one weighing 56 grams! (Compare that to an average weight gain of around 20 grams per day.) It was army green and army sized. Yes, the enema worked. I think we'd better brace ourselves for a weight loss today. In case you're wondering she went through four diapers. After the giant stools her tummy felt much softer and she sucked down her noon bottle in 15 minutes! At 3 pm we're probably going to try breastfeeding again. She didn't finish her 6 am feeding so we don't think breastfeeding is keeping her here at this point. I'm eager to see how she will do with empty intestines. We should be careful not to have too high of expectations though. You just never know what this little girl is going to do.

New Neighbors

Please pray for the newest members of the NICU club. A set of triplets was just born and flown here from Manhattan. Unfortunately the helicopters could only carry them one at a time and there are only two helicopters, so they had to make a second trip. My guess is the mom will still be in the Manhattan hospital for a few days. So definitely pray for the mom and dad. Also pray for the nursing staff here. They have quite a few babies right now ... and now they've got three more. You know it's funny how quickly the NICU population can change. To us the NICU seems like a place that you go and stay for a couple months. But the reality is that Tristen is one of the few babies that has been here as long as Ellie and he was transferred to Children's Mercy (in KC) a few days ago. That's another family you could pray for. The parents are from Emporia and are working so that they can take time off when their son comes home. He actually should be going home any day now. He was taken to Kansas City to have an eye surgery. They tried to do the surgery here a couple times but apparently they had equipment problems both times. This little boy's due date is the same week as Ellie's but he was born a full month earlier than she was. You know some night's when I think of how young Ellie was at birth I wonder Why us? Why did we have a 28 week baby. But it does help put it into perspective hearing about a 23 week baby. It's not like it is unfair that we had a 28 weeker. That seems to be the wrong way of thinking about it. We did have a 28 weeker. That's cause for prayer, but not for self pity. We have plenty of reason to call up friends and family and vent our emotions and process through this however we need to ... that's not the same as self pity. But I don't think it helps to think of this as a poor hand dealt to us in a card game. I guess in life all hands are worth the same but you have to play them differently.

Milk. It's What's for Dinner

Well it seems that we haven't updated you on Ellie's feedings today. So ... At 3 o'clock Mandy breastfed her and Ellie "transferred" 26 mL from the breast. (That's the lingo around here: "transferred") Then she took about 10 mL more from the bottle and Audrey slow pushed the remaining 20 mL through her feeding tube. At her 6 pm feeding Ellie got 20 mL from a bottle and gavaged the rest. We weren't there for the 6 pm feeding because we went to get haircuts. While we were there Mandy decided to have her hair styled. Doesn't it look gorgeous? Don't worry, she only got it trimmed. And at 9 pm ... that's right it's Saturday assessment time: Tonight Ellie weighs 6 lbs 5 oz (2860 grams). That's a gain of 40 grams. And she grew 3/4 " to bring her to 19 1/4 inches. Great job growing Ellie Jo! Anytime she has a gain of an ounce or more that's great, but especially when it's paired with 3/4 " growth. And as for the feeding, mom fed her the whole bottle! Great job Ellie Jo. To be fair I should point out that Ellie was pretty sloppy. (but it was also formula this feeding) And she has seemed uncomfortable for a while afterwards. Sometimes we think that ever since they diagnosed the acid reflux her symptoms have gotten worse. Maybe we shouldn't have told her that she has acid reflux. Ellie, if you're reading this I'd like to stress that it's supposed to be a somewhat mild case and now you're on medication for it. Please adjust the severity of your symptoms accordingly. Thanks. Love you.

Miss. Ellie is in control here...

From Week 10

I think our daughter has a trend of doing REALLY well to start off and then after that, she decides...man, that was a lot of work, and I'm tired! Last night I ended up breastfeeding Ellie at midnight (9 pm she needed her formula Neosure) and it went fairly well. We weighed her before and after and she transferred 20 mLs, so of course not too bad. She was fussy during the feeding so we had to take a break to calm down for a little while. We still considered it a success and Nurse Korrie (who helped us) said that she's doing well with the mechanisms...latching, pacing, practicing the suck, swallow, breathe. She was sure awake a lot between the 9 pm feeding and the midnight - I tried to nap, but couldn't! - and I'm wondering if it wasn't her reflux - I also know she hasn't pooped in three days, so she's got to be uncomfortable about that too! Ben and I were exhausted after getting back to Ronnie's at about 1 a.m. and slept in this morning a bit. When I called at around 11 a.m. the nurse said that Ellie had a bit of a set back night. She took only 11 mL at 3 a.m. and was wiped out at 6 a.m. and didn't even wake up. By 9 a.m. Newly discovered cousin Audrey got to feed her and she took her whole bottle (56 mL). We came at 12 noon and she took 36 mL for me and had the rest 20 mL gavaged. We tried a rectal temp - so hopefully she'll stool here soon and feel better! She's resting at the moment, thank goodness! We're going to try the breastfeeding again at 3 p.m. This was a bit of an emotional dilema this morning because really, we don't want breastfeeding to be the reason she's still here. They say breastfeeding tires her out so much and then she doesn't have enough energy to finish her bottle (with the difference she doesn't get from the breast). Well, in order to go home, for starters she has to finish all her bottles for 24 hours...and then two consecutive days. And now she's up - I sure hope the prilosec starts to kick in -I've noticed she spits up more. :( Anyways, the nurses asked me what I wanted to do. And after talking with Ben and praying about it, we've decided to try breastfeeding one more time - today at 3 p.m. and see what she tells us after that. If she tires too much after, than we might decide to take a pause in breastfeeding and wait until she's a bit stronger. We're going to talk more about this with Ellen on Monday. At this point, that's what we've decided. It's hard because I do want to breastfeed, but more importantly, we do want to go home. And we can try again later if it's tiring her too much. After many tears, and I did know going into this "trying breastfeeding now" thing....I do feel a peace with our decision. After all, Miss. Ellie is in control here. We're just praying she gives us some signs as to what we should do to best care for her. Prayer requests: Ellie and breastfeeding, her energy, her bowel movements, Mom and Dad's peace and contentment in waiting for Ellie.

Patience My Young Padawan

PATIENCE...Mandy and Ben...PATIENCE..... Ellen called the night shift nurse tonight just to clarify with her that we might be going home "maybe the first part of next week." She wanted to clarify because she didn't want us to get our hopes up to take Ellie home on Sunday. Ellen actually never talked to us today because we were late getting back to Topeka. (This was after coming back from making a run to Manhattan to get more stuff set up and to deliver milk!). A lot of information was given via the nursing staff and well, Ellen's wanting Ellie to get better at her feedings and we'll discuss things on Monday. We're a little bummed (not gonna lie) just because this obviously has been a roller coaster of emotions. We are completely ok with little Miss Ellie letting us know when she's ready to go home...I guess we just got to excited...but to be honest, today felt a bit rushed with all the info and training! So we're not staying in the family room tomorrow night - it'll be closer to when we go home - and the car seat trial might be tomorrow night now too. PATIENCE...yep, God's still teaching us patience! So, taking a deep breath between the tears...but it's so neat as I watch Ben feed Ellie. I was going to breastfeed and am a little frustrated that we didn't remember that she actually gets her Neosure formula at 9 am and 9 pm. Miss Ellie apparently wants us to slow down. She only ate 37 mL for dad tonight through the bottle - sidelying and with the regular nipple. The rest she got to snuggle with Dad and be gavage fed. I'm going to stay and try to breastfeed at midnight (although Ben said I have to take a nap after I get done typing this) She gained 20 grams tonight taking her to 2820 grams - 6 lbs 3.46 oz.

Time to Take a Deep Breath

Okay, we talked to the nursing staff and found out that they are currently planning to send Ellie home on Sunday or Monday. Still some goals she has to meet, but she's really doing well at this point to meet those goals. That still sounds really soon. We do want to go home, but we can't ignore the nerves. We also can't seem to stop our heads from spinning. You may have noticed that we've been a little light on the blogging today but we have had a pretty crazy day. We just got done with the training for Ellie's monitor. The lady that did the training was very nice and she let us know that if there was something going wrong with the monitor we could call any time and they would help us fix the problem. She showed us how to put the leads on Ellie and said that when we need new leads (you're supposed to change them every week) we just have to call and they'll overnight some more to us. Backing up a bit, Ellie gained 10 grams yesterday. That's not enough to push her up to 6 lbs 3 oz yet. Of course we'd like to see bigger gains, but we're not as concerned about weight gain as we used to be. Now that she's passed the 6 lb mark she's pretty much in normal newborn territory (as far as her weight). That's not to say she will behave anything like a healthy full term baby. We'll still have to ... well, baby her. Today at the 3 pm feeding (for which we barely made it back) Ellie did not want to get up. Mandy had to convince her that it was a good idea to put the bottle in her mouth. So I fired up the computer to write a post figuring that she wouldn't finish it and that would mean we'd be here at least another couple days. Sure enough the next thing I knew Mandy set down Ellie's bottle and I looked over and found to my surprise that it was empty! Good job Ellie, another feeding down the hatch! Mandy's going to try breastfeeding at 9 pm tonight.

Say What?

This morning Mandy was talking on the phone with the lady who is going to come train us on Ellie's monitor. She scheduled the monitor training with us tonight and she said something like "that way you can go home tonight or sometime this weekend." Whaaaaat? Mandy and I didn't believe for a second that we could go home tonight because we know that she has to finish two full days of feedings. Mandy told me that last night Ellie finished all of her feedings except the 3 am feeding which she slept through. So we figured the earliest we could go home was ... wait a minute ... tomorrow morning! Yikes. Okay so that has thrown us into freakout mode today. We took a trip to Manhattan last night to take some milk back now that we finally have a deep freeze up and running. So we spent the morning hurriedly trying to get everything cleaned and set up. Then we tried to get back to Topeka in time for her 3 pm feeding.

These Boots Aren't Made For Walking

Here is our little cowgirl after her 3 o'clock bottle feeding. She only took 13 mL but she was probably just tired from breastfeeding and bottle feeding and gavage feeding (nice combo package there) at noon. What a small world...the breastfeeding clinic has been a great resource for me. I hit it off really well with one of them (breastfeeding educators) who also happens to be a NICU nurse as well, Audrey. She helped me get started right away with pumping (others did too of course) and since then she's come in time after time to talk with us and to see Ellie. I don't think she ever got lucky enough to actually be Ellie's NICU nurse, but we would see her from time to time and get to chat. So today she had her "breastfeeding educator" hat on so she got to help me get ready to nurse Ellie for the first time. I started talking to her about how my dad was coming to visit today (on his way to babysit Wade's kids in Manhattan) and she asked where we were from. All this time, and we never talked about Iowa! She said she was from Clarion and then I mentioned my mom was from Belmond. Then I called my mom to see if she maybe knew Audrey, but she didn't recognize her last name. She asked if I knew her maiden name and I said I would find out. Too funny because it turns out that Audrey is actually my mom's second cousin! Grandpa Whipple...did you hear that??? Isn't is such a small world! It was so cute, Audrey about started crying and then had to go tell everyone in the unit that she was related to Ellie Jo! How neat and what a comfort to know that we have even family helping us get through our NICU stay here at Stormont-Vail!