A Step Back: Beckett's Eating Strike

Not going to lie. I've been so blasted proud of my Beckett, that today was a bit of a shocker. It's so important to have joy in the baby steps. It's the steps progressing forward part that is the hope for us preemie parents. And he is still doing SO well. I know that. I believe that. Perspective. I know that my Beckett has different issues than other 25 weekers...things could be harder...things could be easier. But to me, his mama, the steps back are just plain difficult. Kind of like the "bad" days in the NICU. They just drain the life out of me. Don't worry, I got a mini-nap in today too.

Of course, now that I've hyped it up more than I intended, I'll just get to it. So what is probably one of the most important things preemie parents obsess are concerned about?

EATING. GAINING WEIGHT.

With Ellie, we had a spreadsheet. I knew daily volume intake. And yes, I'm self-aware that was a tad overboard. With Beckett, well, he breastfeeds sometimes, sometimes we get it written down old school way...with an actual pen and paper, and sometimes not. This past week when we met with the nutritionist (which now we are going to Cook's for Outpatient Nutrition starting in May) she mentioned he wasn't gaining quite as much as the target goal we had set for him. It's still a gain, and for that I am grateful.

But this past week, things have just been "off" with Beckett's eating. I've actually been discouraged with noticing his progress development wise because I've been trying to figure what's going on with his eating. He loved to eat before. The past week. Not so much. He's starting to trend like Ellie (and for those of you who walked down that road with us, remember?...she HATED eating). Batting the bottle, turning away, short sucks on and off the bottle. So I gave him the benefit of the doubt to cue base feed, and ok, if you want to eat more often, fine, but you still need to eat. A couple days ago, he went four hours in between...ok, fine. So I expect him to gobble down 5 ounces. Nope. Yesterday morning, Ben took 45 minutes to try and get him to eat 2.5 ounces!

I didn't/don't know if he's trying to tell us he is sick, or what. But no fever, no other symptoms. So I go to our Occupational Therapy visit with Debbie (who is awesome by the way) at Cook's today, and just mention to her how this past week his volume has really decreased, and that this morning, the ONLY way I could get him to actually swallow was back to good old side-lying. So we talked through some things, and she consulted with her co-worker who works more with feedings and babies. So she comes in and watches Beckett eat, and within 10 seconds, she says he looks stressed out. Yep, that would make two of us!

It's a hard balance to find. I know he NEEDS to eat. But how hard to you "push" them. Honestly I'm still scarred from basically force feeding Ellie every feeding, that I don't want to get to that level. So how attentive are you to the cues? We need to be paying attention to these better. He needs his breaks. He needs to regroup. We want to keep eating a "positive" experience. Just frustrating, and then the dreaded mommy guilt sets in (which I totally just told one of my friends not to go down the mommy guilt road, and look at me now!). I just thought he was getting older, getting distracted, looking around. Bats the bottle, well. Ok. Working on the rotator cuff? Nope. I feel like I missed it.

The OT explained to me that 4 months (so adjusted) is a critical age for oral sensory and oral motor skills. Up until now, the babies respond with "reflex"...you put bottle in my mouth, Ok, I suck as a response. At around 4 months, it transitions to voluntary, so basically Beckett is the one who is getting more "control" at choosing how (what muscle coordination) he wants to eat, when he wants to eat, etc. I hope that makes sense. Of course since I posted this last night, I have been researching oral motor skills stuff.  *Are you reading this Lisa Grubbs? This could be a NICU Helping Hands parent education session about what to "look for" at adjusted ages. This little tid-bit would have been good to know. To have a heads up... It still baffles me that Tarrant County has one of the highest premature infant rates in this state, and there is NO follow up clinic in Fort Worth! Ok, tangent. Sorry.

And Beckett's getting SO tired when he eats. He has weak upper body strength (head, neck, shoulders) so it makes sense that he prefers the side-lying. Than he doesn't have to focus on coordinating so many things. So she said we need to try and feed him side-lying again, angled to 60 degrees, and use cheek and chin support. He is/has always been a "short suck, short suck, breathe, breathe" kind of kiddo,  but honestly...he would still have decent intake so it didn't seem like a concern to me. But they want us to really try and get him to practice the nutritive, long sucks. He won't tire so easily.

And you know all of you blessed people have commented on his chubby cheeks. And now I get to pinch them when he's eating. It's a tad difficult with all the cheek poof. But already today he has shown progress with the nutritive sucking with the support. We still need practice, but at least he took 3 ounces (100 mls)! He will also breastfeed only laying down. So that makes things interesting. Fine at home, but not so convenient out and about! I am pumping instead, so we can just focus on seeing how much he is eating.

I may or may not have had a breakdown with the two OTs. It's just hard. I of course wish I would have seen these things. Noticed these things.

I know. I know. The reason we take Beckett to therapy is for those, WHO ARE TRAINED, to catch these things.

TV Time out for the screaming Beckett who wanted to eat. And he tired out so fast, he only ate 40 mls! Frustration. I may or may not have been singing You Are My Sunshine and Jesus Loves Me to calm...both of us. LOTS of repeats.

We are heading in for another appointment with Occupational Therapy tomorrow morning (Friday) at 10 am. Ben is coming with this time, so that will be good to have another set of eyes and ears for the plan of action to combat Beckett's partial eating strike.

And let's end on a PRAISE note!

For the NICU Helping Hands "Burgers for Babies" event, we have $1675 pledged! So we are only $825 away from our TEAM GRAMKOW TABLE!!!!!! We are close!!!!! Only 4 more days!! THANK YOU! THANK YOU! THANK YOU!

$1350 pledged! $1150 to go!

Here we go PREEMIES! Here we go! Clap! Clap! Clap!
Beckett and fam would like to thank the 12 people who have donated to NICU Helping Hands "Burgers for Babies" for his 7-month birthday challenge! We are now at $1350 pledged. Only 5 more days for us to reach our goal of $2500 to get a table for Team Gramkow! Hip Hip Hooray! THANK YOU. THANK YOU. THANK YOU.

...So I have started my handwritten thank yous...it might take me a year since I have last year's March of Dimes donations, Ellie's birthday, Beckett's birth, the break in, Christmas, and now NICU Helping Hands. So neat though...to reflect on how thankful we truly are. So. Humbled. Right. Now.

Praise God for Good Days and Baby Steps!

Outside world? What?

 Yes, this may come to a surprise to some, but the outside world is a crazy place filled with germs.

But ... Praise God for good days and baby steps!

So, obviously you know we have been on RSV Lock Down for quite some time. Well, I am happy to report that this mama is taking baby steps! Just yesterday, I loaded up the kids and went on an adventure to deliver a meal to one of my dear friends who just had a baby. That's right ... with the KIDS! Wait for it ... and we all went inside! Gasp! :) It was only the second time Beckett has been out somewhere other than doctor's visits, chiropractor, therapy visits. (The first time was actually at our small group Bible Study where just the couples no kids met.) BIG STEP. And I let Anna hold him. Gasp! I know, but it was only fair since she let me hold her precious Baby Oliver. No worries. They believe in washing hands and hand sanitizer too, so all was well.

Oh, AND yesterday ... we were coming back from the chiropractor, and I noticed a lady pushing a stroller walking down our street with a little boy. And so ... of course, I stalked her down :), waved her over, and turns out she lives just a few houses down from us. YAY! She has a sweet 12 weeker and a boy that is around Ellie's age. YAY! SO it turns out that the people in our neighborhood aren't just criminals and old people. I'm excited to get together with her. It'll be nice to have someone to walk around with close to our house! We actually have a mutual friend even! What a small world. I think it was a God thing we met.

So TODAY, I was brave AGAIN. I loaded Beckett and Ellie up, and we stopped into our church for the last Tuesday morning Women's Bible Study to say hi and thank them for all their prayers for our sweet Beckett. He got lots of smiles ... it made this mama's heart happy. :) I may or may not have said when I walked in the room, "Please don't touch him, or I might have to karate chop you." :) We didn't stay long because Beckett had to eat. I may or may not have run into the door with Beckett's car seat and diaper bag, and Ellie. Guess I reminded everyone that I haven't been out much. And apparently it turns out I'm not so suave without the stroller (aka the mini man cave).

So praise God for Good Days and Baby Steps.

We are going to see family this weekend and celebrate our sweet nephew, Ethan's baptism. Traveling: Another baby step.

And then when we come back we might actually go to church. Gasp! I know, I know. But just know in advance fellow church goers: I may or may not come late and leave early. Not because I don't love you. But it's more for this mama and her anxiety. Baby Steps.

And so is the life of a mother of two preemies re-entering the world after RSV season.

Baby steps. There is nothing wrong with Baby steps.

****Oh Oh OH! And CELEBRATE with us because we have $1125 pledged so far for our NICU Helping Hands Burgers for Babies event! We are almost half way to having a Table for TEAM GRAMKOW!

Beckett's 7-month birthday challenge!

Our Sweet Beckett is 7 months old today. What a blessing.

So here are seven things we adore about you baby boy…

1. Your smile lights up our life. You are such a happy baby. I can tell you love being in our family.

2. Your love for eating. Whatever works buddy. You are 13 lbs. 8 oz. now. We’ll take it. We Still a high frequency, slow flow, small volume kind of boy. call it proper portion control. But you know what to do buddy. Good job on the suck swallow breathe.

3. You give us usually at least 5-6 hour stretch at night sleeping. Daddy is very happy about this one.

4. You love your sister, even when she invades your personal space. She has already said “Sorry” a hundred times. She loves to make you smile, and then tell everyone that she made you smile.

5. Your spikey hair. Borderline fohawk going on. So cute.

6. Your chubby cheeks. I love how you can see how defined they are when you smile.

7. Your amazement by finding your hands. You are learning new things each and every day. We are so proud how far you’ve come in 7 months baby boy.

So in honor of Beckett’s 7-month birthday TODAY, we would love to have 7 people pledge to donate TODAY to our fundraising efforts for NICU Helping Hands. (See blog post prior for complete information). We only have SEVEN DAYS to reach our goal of $2,500 to get a table at Burgers for Babies! The Burgers for Babies event is here in Fort Worth on May 10! May 1st is the deadline for us to receive donations.

So far, we have raised $375.00!

However, we have to specify some important details…

(Sorry my bad on this one, guess I should have paid more attention in accounting and economics class! Thanks Lisa Grubbs for helping me figure this all out!)

If you would like to receive a tax-deductible donation,

1. you must either send us a check written out to NICU Helping Hands to
   Team Gramkow
   Burgers for Babies
   6612 Trail Lake Drive
   Fort Worth, TX 76133
   OR
2. donate directly on the NICU Helping Hands Burgers for Babies web site here (it will go to the NHH pay pal account), by filling out the name/address/phone/e-mail and then click the button at the bottom “I am unable to attend, but I would like to contribute to support NICU Helping Hands (enter an amount on the next page).” If able, indicate that you are donating in honor of Team Gramkow. Please send me an e-mail letting me know the amount you donated, so I can let NICU Helping Hands know that that donation is going toward our table at the Burgers for Babies event!

If you would like to attend the event with us on Thursday, May 10

1. please let us know!
2. please know that only a portion of your donation will be taxable (because of the whole "receiving goods/services at the event part). Individual tickets are $150 to the event, but we are hoping to reach the $2500 goal to get a table!

YAY! Get excited!

***And SPECIAL THANK YOU to my friend, Chris with LaBrisa Photography for his awesome photos!

Support Team Gramkow for NICU Helping Hands "Burgers for Babies"

Hello Family and Friends of Team Gramkow,

First off, we are still so grateful to all of you who helped support, pray for us as we endured a second journey in the NICU with our Sweet Beckett. I know I will be doing handwritten thank yous forever, but I'm ok with that! And don't think I have forgotten. I haven't, I just haven't gotten to it yet.

Even thought the therapy and the worry continues as to what residual effects his prematurity will have on his life, I am happy to report that he is currently playing on the floor right beside me as I type – whining (it’s a cute whine) because he loses his toy out of his grasp, staring at his hands that he recently found, and kicking those legs about a mile a minute!

Ben and I were talking last night about how we do want to be a family who gives. So many people have blessed us, and we want to pay it forward in a way that really has significant meaning. As some of you know, we usually do the March of Dimes: March for Babies each year. However, here in Fort Worth…it’s this Saturday, and well…I guess you could say we were a tad busy with a new NICU graduate! We still plan to support March of Dimes in the future, as we still pray for research to advance for those of us who endure premature labor and have tiny babies. We were blessed to have a MOD family support group at Harris Hospital, where Beckett was.

This year, we have obviously developed a personal connection with Beckett’s neonatologist, Dr. Grubbs (aka the DRG) and his wife, Lisa. Ben and I have seen first hand the initiatives of the NICU Helping Hands Foundation put in place, and are so excited to see it develop to be an influential resource to preemie parents in the Fort Worth community. The DRG and his assistant started NICU Helping Hands in 2010. Project NICU then started at Baylor Hospital (neighboring hospital) providing supplemental support to parents in the NICU.

And NICU Helping Hands is the organization that we would love to invest our time in. They have provided an avenue for us to be served, but to serve as well. Ben and I attended one of their parent education sessions, and had visits from Lisa while Beckett was still in the NICU. As we are now home from the NICU, I would say the neatest thing has been the opportunity to serve as a volunteer for this organization. I will be guest blogging a couple times a month for the NICU Helping Hands Blog that will be launched May 1. We pray that our story can offer insight not only to those going through the preemie journey, but for friends and family as well. Not to mention, it’s healing for me…to write and reflect. Another reason I’m excited about NHH is that they really want to be a resource to parents after they go home. I’ve already had an opportunity to be a mentor mom to another who is currently in the NICU. Even though the flashbacks come as I venture down that “road” again…again, it’s part of the healing. And it’s an opportunity for us to be an encouragement to those behind us on this journey…and HERE in Fort Worth.

We know that we have already been blessed in abundance, but would you consider donating to NICU Helping Hands in honor of Team Gramkow? NICU Helping Hand’s biggest fundraiser “Burger’s for Babies” is coming up on May 10 at Chef Tim Love (who is also a preemie parent)’s new restaurant, The Woodshed Smokehouse here in Fort Worth! Go to see all the details! http://www.nicuhelpinghands.org/

Ben and I would like to go, and would like to raise enough money to be a sponsor for a table! But we need your help! This does seem like a big goal, but we sure are going to try!  A sponsor for a table is $2,300! And we do kind of need to reach our goal quick, to reserve a table! Apparently we work best under deadlines (remember all our night before entries into the NICU Helping Hands Photo contests?)

How can you help us out?

1. We have placed a “donate” button through Pay Pal on our blog. (note: there are fees that will come out of this, but it is ok) OR
2. you can mail a check (making it out to NICU Helping Hands) and send it to our address:

Ben and Mandy Gramkow

Burgers for Babies NICU Helping Hands

6612 Trail Lake Drive

Fort Worth, TX 76133

**Please send an e-mail to mandysue@gmail.com so I can be on the look out if you’re sending mail. Oh, and if you need receipts, just let me know!

Also? If you donate, and are interested in joining Ben and Mandy and sitting at the TEAM GRAMKOW TABLE AT the Burgers for Babies event on May 10, let Ben or I know! We’d love to get all dressed up and dine on some tasty burgers (made by 13 different chefs!) with you! 

THANKS from the bottom of our hearts,

Mandy for Team Gramkow

See a video from the Burgers for Babies event in 2010 https://www.youtube.com/watch?v=bV8FPCfV_7k

"While our 25 weeker, Beckett, was in the NICU, my husband and I attended parent education sessions to learn more about how to best care for our preemie. These regular support meetings met our basic needs by serving us a meal, our social needs by connecting us with other preemie parents, and our emotional needs by giving us a break from the sound of the alarms and monitors! Some of the topics included infant nutrition, signs of over-stimulation in my preemie,  infant massage, and how to prepare for RSV season. Our program facilitator checked in with us often, offering one-on-one support. It was such a good feeling having another advocate, aside from the amazing nurses and doctors, who really cared and wanted to walk along side our NICU journey. After our Sweet Beckett came home, NICU Helping Hands provided resources for me pertaining to transitioning from pumping to breastfeeding, from neonatologist to pediatrician, questions about acid reflux, as well as advice for working with the local therapies that Beckett would need."

Mandy Gramkow
Preemie Mama to Ellie (27w6d) and Beckett (25w) 

Measurements Appointment

After a morning full of appointments, and an afternoon full of naps...we got a good report about Beckett's head...well, nothing we need to do immediately that is. His trend definitely increased, but not enough to be urgently concerned.  More watching, and we will still keep our appts on May 7 for more measurements, and May 11 with the cranial specialist. His OT appt went fabulous this morning! He is keeping his head midline really well, is amazed when he finds his hands and turns his wrists (this makes me laugh), and even passed a toy from one hand to the other! Wahoo!

Nutrition Visit #2

I don't know why I have to keep telling myself this OVER and OVER again. I need to just let go. His whole life is going to be a wait and see...

but I think as mom, well, we just tend to worry.

So let's just get off to the first concern right off the bat. His head circumference was 17 5/16" which is up 5/16" in just TWO weeks! I just put a call into the doctor to see what her thoughts were. We aren't scheduled to see the Cranial Specialist until May 11. And our next weight/measurement check with Dr. Hanson isn't until May 7.

Please pray for my sweet boy's head. I know it is supposed to grow, but it appears to be growing a little too fast of a pace.

His weight was 13 lbs. 8 oz. (increased from two weeks ago, up 9.1 oz.) so GAIN is good, but it wasn't as much as we were hoping. So new weight gain program: Aim for 4 bottles of breast milk fortified to 27 kcal/oz with Neosure each day (So now we are back to what we were discharged from the hospital on), REALLY trying to feed 100 ml (a little over 3 oz. each bottle). We have been fortifying bottles in the evenings, but he sometimes won't finish the whole bottle because he's getting sleepy. So we have to get creative to try and get him to finish, finish, finish! His overall gain wasn't ideal, but it's just a little below the 50th percentile curve (on preemie chart).

Of course with this...now I am racking my brain trying to figure out trends, what was different, what we can maybe do differently moving forward to try and maximize his intake. We nurse during the day, so it's hard to know what he's gaining, and she still says stick with that (as opposed to pumping and just giving bottles to know how much he's taking...we aren't to this point yet).

With growing older, he should be wanting more volumes, so that's odd too because he really only eats 2 to 3 oz. per feeding. So more things to watch for. He is still having wet diapers, but will need to watch for dehydration too. Especially now that he's pooping more.

Now that is what has increased! Maybe a little too much too...we were giving juice before (1/2 to 1 oz a day), but now the dietician said stop that and we'll just try water. Now the pipes are cleaned out, and so if just water helps, that's better. I feel better about that too. He has never pooped this much in his life, which is concerning as to how he stored all of that up for a week/ week and a half at a time. Hopefully we can find a eating/pooping pattern that is just right for Beckett so that he GAINS, GAINS, GAINS!

Length increased a significant amount too! He measured 24 5/8" (up 3/4").

He has become more mobile. Add "SCOOTING" to his list of can do's! Yep, he kind of looks like he does a half back bend, and then before I know it, he is perpendicular to where I left him. Silly Beckett.

Happy Easter from Team Gramkow

 What joy. We are so blessed.

 Love these boys.

 Ellie the entertainer.

 Isn't his tie so cute?

 Gonna have to frame this one.

 Lockheed Martin Easter Egg Hunt. Ellie wasn't so impressed with the Easter Bunny, or the other boy who just wants a picture too! Thanks Grandpa for watching B so we could go.

 While the eggs were dye-ing, we had her color. Ellie said the crayons were laying on their nap mats.

 Daddy reading the Easter Story. Jesus died for our sacrifice. But HE IS RISEN!

 We made Resurrection rolls. Marshmallow represents Jesus' body. Into the tomb (aka oven) and

UP FROM THE GRAVE HE AROSE! (Come on...you Rockwell Methodists who grew up with me can hear Pastor Bob just singing this with such life!)

And than...finishing touches on the glitter Easter eggs.

Oh, I was SO close on finishing this final post before now (thank goodness for the save button)...and than the evening turned into two fussy kiddos. One clingy Ellie and one fussy Beckett who just needed to dirty his diaper. I'm actually holding clingy Ellie now. So sorry not more details on this one, but this mama is spent!

Romans 1:4-5
And Jesus Christ our Lord was shown to be the Son of God when God powerfully raised him from the dead by means of the Holy Spirit. Through Christ, God has given us the privilege and authority to tell Gentiles everywhere what God has done for them, so that they will believe and obey him, bringing glory to his name. 

We have got quite the story to tell. Sing it with me...UP FROM THE GRAVE HE AROSE... 

Ellie's White Dress

Some of you may have seen me post on Facebook a while back about Ellie and our wedding. One afternoon we decided to put the good old wedding DVD in to watch. Ellie LOVED it! She watched the entire thing, and had such a fun time pointing out the people she knew. We have talked to her about how mommy and daddy are married, and how we said we will love each other forever. She knows that my ring was a gift from daddy on our wedding. And she always talks about the white dress that mommy wore. Daddy wore the black and white shirt with a rose. And then she usually makes reference to how it's a "match" to the pictures up on the wall in our room. She did think Amelia and Cedric got married too because she was wearing a white dress like mommy. Had to explain the flower girl concept. She even watched the message! Everything from start to finish. And than again. And the next few days too. She had Grandpa watch it with her yesterday as a matter of fact!

When it was all done, she seriously said "but mama, I want a white dress." She borderline threw a tantrum, but I again had to try and explain to her that when she was big than she can get married, and wear a white dress.

That night when we were saying bedtime prayers, she asked me about my ring, and about our wedding day. She asked if she could marry daddy. I had to break it to her that I already married him, so she had to pick someone else. She said, "but mommy, I don't know what kind of boy to pick." So I started sharing with her...well, a boy that will be kind and gentle, and play games with you, and be nice, and love Jesus. She quickly interjected "Jesus is a boy." "Yes, you are right."

I told Ben about our conversation, and of course the next day he asked her what she remembered about watching our wedding. Ellie said "daddy you wore a black shirt and white shirt, and a rose and you are going to walk me down the aisle." Pretty sure Ben about fainted when she said that. She did know that grandpa walked me down the aisle...she had pointed that out to me when we were watching. Then Ben asked her if she knew what boy she was going to pick, and with a sad face, she said "I don't know." Ben then asked her if she wanted us to pick, and she said "Yes!" We actually were recording their conversation, so yes folks, we have that on a recording. Ha! Ha! :)

Oh Ellie. You sweet girl. We pray you will be a beautiful bride to a blessed young man someday...but we're not letting you grow up too soon!

Lucky for Ellie, Grandma Weber just so happened to find a white dress. Ellie wore it on Easter Sunday (even though she stayed home with Grandpa while Mom and Dad went to church), and daddy caught some amazing photos of our princess, don't you think?

The Weber Fam comes to the Fort

This expression describes how excited I was for the fam to come. Apparently Ellie IS my child. It was so great having my family here! I hate being so far away, so when we get together the time is always so sweet. Grandma and Grandpa Weber, Aunt Wendy and her kiddos -- Garett, Wyatt and Maizee came to play! Our week was complete with water fights in the back yard, much swinging in the back yard, playing in the sand box, a trip to the botanical gardens, swimming, the boys visiting Cowboy's stadium, cramming in the closet because of the tornado warning, and just hanging out. Mom, Wen and I got some shopping in too! Wen and I got pedicures at the same place that we did when Beckett was born, and the lady who actually did my feet remembered us. Embarrassing. But maybe it's because when we are sleep deprived (Wen's Maizee still isn't sleeping with through the night!) we tend to act like this...and everything is funny:

 

(Please disregard how skanky we look. HA! HA! Love ya Wen! I actually look quite scary. But well, embrace the good chuckle).

 

It felt so good to laugh actually. Wen, Mom and I stayed up late one night, (why not?) and watched Bridesmaids. And pretty much the whole movie was hilarious to all three of us! LOL! This was the first get together we have really had since Beckett has been born. It felt somewhat normal. This is how I actually envisioned our get togethers to be. I of course have GROWN a lot in my psycho-germness allowance. Although, everyone was good to me and washed hands a lot and used sanitizer! :) My amazing sister has a way to try and push me out of my shell a little. Baby steps. Goals: For example...go to the park once this week. I know. Silly huh? But seriously this whole coming out of the lockdown bubble has to be a gradual one otherwise I will just lose it!

She and my mom had to do it with me for Ellie, and well, it's happening again with Beckett. :) Love you people who love me! Botanical Gardens trip was anxiety filled, but it went ok. It was great to enjoy the weather. Beckett was a rockstar, so that helped. He slept peacefully in the man cave of the stroller. It was great too let the fam help out with Beckett so I could spend some time with the kiddos. My sister has waited a long time to snuggle Beckett. I had an equally good time trying to be the cool aunt. Luckily I'm married to the fun uncle who has unlimited amounts of energy. I think Ben had fun doing boy things. Beckett...you're in luck!

I should have taken more pictures! But of course, we couldn't remember to take a group pic until right before bedtime so Ben could be in it too! We look AWESOME! (note sarcasm) Oh well, people...this is real life. :)

Will have to add more pics later. Wendy, I know you got some! Send them my way!

Team Gramkow is looking forward to our first road trip to see the Gramkow Family soon!

American Idol Contestant: Ellie Gramkow performing March, March, March

Sweet Ellie

 

Well, this is her blog namesake, so I we should update with fun Ellie-isms now! She is currently napping because she didn't sleep very well last night. Doctor appointment today confirmed croup, a brewing ear infection, and some bigger than normal reactions to bug bites. Poor thing! And so now, once again, we play man to man defense (my dad and I switching periodically with each kid)...but also keeping them on separate courts! Croup isn't contagious, but obviously the virus that makes Ellie's airway respond with croup is. And I'm just going to guess that the little preemie brother probably has a floppy airway as well. So again, we do the best we can...hard thing when Big Sister loves her brother so much.

So Ellie...such a joy. She talks very clearly, and uses big words like Occupational and Physical Therapist, and has an amazing memory of people. She loves the game memory, and will often associate things our and about that are a "match." She loves playing with play dough, and still is an avid cook. She loves playing Dora Candyland, and still loves to read and loves be read to.

She LOVES to sing. Singing songs she knows, but now she has added made up songs to her album like, (as we were getting groceries quick this noon, waiting for the pharmacy) "There are a lot of people, lot of people at the grocery store....to buy some cereal, cereal, cereal." I've noticed the past couple phone calls that she has had with daddy and relatives almost always include her walking around talking on the phone (like mommy) using her shoulder to hold it up to her ear, and she also likes to describe all the things she sees in front of her. "Here's a book, a pencil, a marker"...and add on a little singing jingle...yep, that's it! Frequent songs we sing are: Little Einstein theme song, You are my Sunshine, ABCs, Jesus Loves Me, Jesus Loves the Little Children, ABC song from Superwhy, and I've got the Joy, Joy, Joy, Joy.

So ... funny story.
Apparently I used to sing like this when I was little. We have been watching American Idol and The Voice lately, and so Ellie likes to get up and perform for us. I will share a little of our latest episode. (See the next post for the video!)

She LOVES to write and color. She writes "Ellie", "Mommy" and "Daddy" quite well. And now she has mastered the question "what comes after the insert letter here? She also practices her sounds, and we play a lot of guess what starts with insert letter here? Oh, and she cuts with scissors now too! The tiniest pieces you ever did see, but hey, she is practicing those fine motor skills, so I'm good with that.

She likes to give Baby Strawberry infant massage while I'm doing it with Beckett. She has been known to nurse Baby Strawberry too. Oh the things you learn as big sister! She is quite the helper though, I couldn't ask for a better one! She loves to roll up the wet diapers and throw them in the trash, although she usually doesn't get as excited to roll the poopy ones. :)

I think she has done the best she could for being with us in RSV lockdown. I know she is so social, and misses all her playmates, but she knows that we don't want Beckett to go back to the hospital. I'm sure she will be excited to get to get out more, and more. Last week, her cousins, Garett, Wyatt and Maizee were here along with Aunt Wendy, and Grandma and Grandpa Weber (SO THANKUFL no one was sick!) and she LOVED it!

She has started some sassyness though. She does tell me "no" and we have to review that "We don't talk to mama like that." She kind of is a bit of drama with things like: "Don't do that! I WANTED to do that!" And we're talking small things. She is only three, but I couldn't promise Ben that she will grow out of it, as most of you know...I'm a tad on the emotional side. :)

Part 3: Update with B-man

Did I mention that someone found his thumb? (and yes, he does sometimes sleep with out closing his eyes all the way...that's like his dad and big sister!)

Sleep deprived? Yes. But I WILL get this blog updated. I WILL get this blog updated. Not only do I need to update ya'll, but seriously, this is like Beckett's baby book! I want to get stuff documented for this boy! Plus, Ellie was restless after I tried to go to sleep. Classic croupy cough, gunky eye, and she says her ear hurts. Dr. appointment scheduled for 11:10 am. So thankful my dad is here, he's on Beckett separate from the sister duty now.


Ok, so Wednesday, March 28 was his 6 month appointment with Dr. Hanson. More vaccines, more being brave. Ellie was so cute, she consoled him too saying "Buddy, Good job being brave, Buddy." What a good sister. Beckett tipped the scales at 12 lbs. 8 oz! His length 24 inches and head circumference 42 1/2, which was a bit of a jump from last month. The nurse measured his head a million times, and than Dr. Hanson also measured it a million times just to make sure it was accurate.
1. His height and weight (according to the preemie growth chart) are still steadily growing along the 50 percentile curve. Head circumference = 95th. Not so proportional little buddy. So we get to still keep our appointment with the cranial specialist on May 11. I was kinda bummed about this. Not going to lie. I thought since his cranial X rays came back normal, no sutures closing, that we were done with that concern. But my loving sister reminded me that X rays are only one glance at what is going on, so it's better to have things checked out further. As far as his height and weight on the regular growth chart.... < 5 percentile. Our doctor only charts until 47 weeks gestation with the preemie growth chart "technically," but I still like to use that one!
2. We noticed that Beckett's left pupil is larger than the other one. Dr. Hanson said we were going to watch it for one more month (we go back for another weight check first week in May), and than will probably move up his ophthalmology appointment. We weren't supposed to see Dr. Packwood until next December, but again...better get things checked out. I also have GREAT friends, and my girlfriend from high school's husband is an ophthalmologist, and called me to talk about Beckett's eyes. He actually said the "normal eye" is probably the bigger one, and the abnormal would be the pupil that looks smaller. Interesting because I just guessed it would be the other way around. He said it could be because of the brain bleed, and did say he would see the opthalmologist too...not urgent, but before December. Thanks for the consult Chip!
3. Dr. Hanson was having us try fortifying two bottles to 27 calorie (down from 4) to see how his weight gain would be. He breastfeeds through out the entire day (YAY! And this is seriously something I didn't think would ever work out for us, and it HAS! Ellie had NO interest in bf so I just continued to pump. It's been a doosy to get my over supply, over active let down under control, but I think my body has finally adjusted to what he eats! I tell you...it's SO nice not to have to do as many pumping and bottle dishes! Ha!) However, Dr. H knew we were meeting with the dietician through ECI for his nutrition consult, so she wanted to see what her input would be too. The Neosure has added nutrients specifically made for preemies, so it is important for B to get some of that, plus added calories are always a GOOD thing! I still secretly want to know what my breast milk is calorie wise. I will just tell myself my milk is high in calories too :) We met with the dietician, and she actually suggested we start with 3 bottles fortified, and took his measurements, asked lots of questions to chart him on the growth curve too, and is coming back in two weeks to see how things are going. Still continuing the Poly-Vi-Sol with iron 1 ml a day too (which we mix in the beginning ounce of his bottle)
4. Pooping issue. So she said it's not good when he has to strain and cries when trying to make a dirty diaper. So we are giving a little pear juice (she said start with twice a day), but I'm only doing once a day because he is definitely stepping it up in the pooping department! CELEBRATING! Don't worry, I do still examine every diaper like I am a NICU nurse. I find myself often times saying, well, they would have said that is normal looking. Those NICU nurses are good teachers!

Ok, I think I got everything from his pediatrician appointment, but mom and Wendy...remind me if I missed something.

Too cute...just checked on Ellie who is still sleeping (and I'm LETTING her because if she really is sick, she needs her rest!) and Dad and Beckett were hanging out in the living room. My dad proudly announced that Beckett had already done his exercises! Guess it helped out having him watch Kelli in our PT appointment. Love it. They definitely are bonding. Poor dad is going stir crazy being indoors this much though. Ellie and Grandpa were going to plant some herbs today, but I guess we will see how Ellie feels later on. I've sure enjoyed having dad here to help all during the day. We are going to try out a new salmon recipe soon. Like my daughter is a daddy's girl...I am a bit too. We like to try out new things to cook and bake! I may or may not have introduced him to pinterest.

Part 2: Update with BTG

Ok, yes, I know mom. It's midnight, and I'm up blogging. But you know it's true. When does a mom get anything done? The kids are asleep. Grandpa is asleep, and already volunteered the 5 am shift. My dad is here helping me out this week because Ben's gone for work. He has been SO helpful. I got to take a shower AND do my hair today!

Back to the OT discussion: Ok, so the infant massage is something we have been working on (sensory) and also we are working on "flexion" which is the fancy word for working on the flailing arms. Our homework with OT is side-lying, placing hands on his shoulders trying to really encourage mid line. I learned where his pectoral reflex is, and that helps prompt the wanting to move his arm part. This past session we also added trying to get him to reach for toys while laying on his side. It's amazing how a lot of their motivation is VISUAL. Lot of truth there. Since we had to take the hiatus because of insurance purposes, Debbie hadn't seen him for a couple weeks! She was very pleased that he has found his fingers, and was bringing them to his mouth. He does sometimes hold his hands in the praying motion too. He does like to try and help with the bottle, but it all supports the whole mid line goal. He does like to grasp my finger too. I love when that tiny finger wraps around mine! We are also still working on tracking, and he seems to be getting better at staying focused and following the toy we shake in front of him. It's also important for us to start introducing different sounds, lights, and textures, again to help develop his sensory areas. Ok, not sure if that really made sense, but you get my drift.

TV Time out. Gotta check on B man. Well, an hour and a half later. This is what happens. I see B stirring, I go prepare his bottle (because I just pumped because I was gone earlier to Bible Study). I change diaper, barely wet. His grandpa (bless his heart) put his onesie on backwards, and it was wet so I change it too. I start feeding him. He dirty's clean diaper. Try making him just wait it out, but he gives me the tongue push. So I change his diaper again, whereupon I learn that he has pooped all the way up his back. and thru his onesie to the sleeper. Change diaper, get new jammers on. Finish bottle. Hold him while he sleep smiles for a bit. Put to bed. And I'm spent too...so the binge blogging will have to continue into tomorrow. But I'm going to try REALLY hard to get caught up. Haven't even gotten to the pediatrician 6 month check up, nutrition consult, family visiting, Big Sister Ellie updates...

Part 1: Update with Beckett

Ahhh! March 23. That was the last time I blogged. It's a bad sign when you have to read back a couple posts to see what you wrote last! We have had some great progress in these past few weeks!

BIG NEWS: I got a call from the pulmonlogist today cancelling our appointment for Beckett's next synagis! Turns out RSV has really decreased, and they aren't giving the next dose now. I asked if it was an insurance thing, and that wasn't the issue at all. I am happy, yet still a little nervous! So I asked what that meant in regards to RSV isolation, and she said "well, I wouldn't be completely relaxed just yet, but the cases are fewer, so the risk is lower." So we shall see...you might start seeing the Gramkows out and about. Baby steps though, baby steps. I do still have an immune-compromised baby, and still have to be cautious. BUT at the same time....EXCITING STUFF! I know it's probably weird to understand...wanting to be out of RSV isolation so badly, but then at the same time...now the reality has come to enter the wild, I mean world. :) Mixed feelings really. Still going to have the fears of him getting sick. I think that just comes with the preemie territory, honestly.

I may or may not be looking back at his sticker calendar (that has now turned into his appointment calendar) to see what has happened!

Sunday, March 25: He kept his head mid line while in his swing for the FIRST TIME! And he BAT at his first toy (on the play mat) for the FIRST TIME! Celebrate. This is a big deal in preemie world. As far as developmental stuff, we just wait and see. So yes, "mini-milestone" celebrations are definitely necessary. I posted this on Facebook last night. (Apparently I get sentimental and reflective late at night when it's just me and Beckett. Honestly, I was marveling at his wrists. He now has that pudge...you know the fat on the wrist that makes it look like he's wearing a perma rubber band. And to think that Ben's ring fit around that wrist when he was born...)

"I would never wish preemiehood on anyone, but I wish all parents could have perspective thru the preemie parent lens. Every little gain of weight, every breath, every developmental mini-milestone...celebrated. I pray that parents wouldn't overlook or take for granted the things that come easier for others, but instead thank God for his true miracle. Seriously, all babies are just amazing!"

Physical Therapy on March 27 with Kelli went pretty well. We did notice he was still prefering his head turning to the left, but she was WAY impressed with how well he was holding his head in the middle while on his back!!! His neck muscles are getting stronger, so we got to add to the Beckett sandwich, by holding his shoulders while facing us. This way he can work on the bobble to the left and right lean-age. So working on getting rid of our bobble "nod yes" and now we've added project "no more nod no."

I may or may not have had to take a TV time out from blogging to A) feed Beckett and B) put in our wedding DVD for Ellie to watch AGAIN. I think this might be like the 8th time in the past three weeks (would have been a lot more if family wasn't in town last week).

Ok, back to PT talk...we also started to help him with the roll motion, but supporting his hips, and supporting his upper chest to finish the roll to the tummy. So fast forward to TODAY's PT appointment. Impressive. Seriously, it is so fun seeing Beckett do new things each time Miss Kelli puts him to the "challenge." He tolerates the therapy quite well, but you can tell he gets tired of lifting that big head. Don't blame him, but he is getting SO much better. On tummy time he can hold his head up for about 8 seconds before he starts to bobble. AND he has now lifted his head higher AND will look side to side while holding up his head. He is nearly on track for development of a 3 month old (which is what his adjusted age is).

She noticed today that he today really liked turning his head to the left (which we had been over correcting before), so now we will just try and alternate, making sure he is doing both ways. It's harder now though since he can keep his head mid line so well! A good problem though. Not complaining here! The BIG challenge that really impressed me today was she supported his hips to roll over, and he got those arms to come over AND he got his arms in army crawl position AND lifted up his head! (although, you have to have patience and give him time for him to realize..."oh, this feels awkward, maybe I better bring my flailing arm over") I as "mom therapist" struggle with this, as I just want to correct, and support him too soon often times. Seriously, nothing like giving your baby a work out...and then you get the sad faces...just breaks your heart. But then a part of me says "buck up boy" ..."you gotta do this." He is seriously starting to master this whole multi-tasking body moving thing.
So our homework for these next two weeks is:
1. More Beckett sandwich, but we can support his chest and back LOWER because the neck is strengthening.
2. Practice the rolling with the hip support, and lift shoulder with finger if needed.
3. Tummy time by holding hips down to help him lift his head more. This phenomenon is so interesting. We are practicing shifting weight. I know right? I wish I could shift weight to my toes. I'd be ok with large toes. But when B started to gain more head control, he would do an amazing seal impression, where his feet will lift up too. But as they learn to balance and shift their weight down their body, it'll get easier for him to keep his head up, and his tush and his feet down. He is able to lift his head a little higher when I basically hold down his bottom.
4. Finding his FEET! He has lifted his feet up at the same time, a few times. Nothing intentional though, I'm pretty sure. So this week, we are working on discovering how cool our feet are. He has found his hands, and it's pretty funny watching him stare at them, and twist his fists, and stare again. Feet it is. Bending will help the belly bulge. We are still working on getting rid of the belly bulge. DRG, that belly bulge is just going to be the last to go, I just know it! (FYI: DRG used to pick on me because every day I would ask about the belly bulge. It bothered me SO much, and every time he would say, it's soft, no hernias, it's not concerning me. But I would still manage to ask again, and again. :)
5. Still working on tracking and batting at toys. Side-lying reaching for toys.
Kelli did notice that he is opening and closing his hands more with his right hand, where as the left likes to stay in the fist pump position. Just something we will continue to watch, again because of the brain bleed.

So this week, my dad asked me a question about the difference in OT and PT, so I thought this link might help explain. We probably know more of Physical Therapists that help with gross motor skills. Occupational therapists help with the fine motor skills. They mention speech therapy as another common preemie therapy, and we are so thankful that Beckett didn't qualify in this area. He has got a good grasp on suck, swallow, breath. And he does like to eat, which is SO good for a preemie! http://www.babycenter.com/404_what-therapies-can-help-my-premature-baby-develop_10304025.bc

"Occupational therapy can help your baby gain competence with the basic activities of her everyday life – what occupational therapists call "activities of daily living" (ADLs). Examples of "baby ADLs" include eating, playing, and interacting with others. Depending on your child's strengths and needs, the occupational therapist may help her learn to manipulate toys, develop her feeding skills, improve her fine motor skills or manage "sensory inputs" such as touch, sounds, and lights.

So we had to take a week hiatus from Occupational Therapy because lovely insurance said they were denying our services. Well, apparently changing the coding from "prematurity" and developmental delay to "developmental delay due to short gestation." I am very thankful they got it figured out, and we got notification that indeed it is covering OT, and so we went back this past Friday. Poor Beckett was a little on the tired side, so he fussed some. Debbie had never seen him cry. Usually he just LOVES the infant massage. (Some research states the infant massage helps preemies gain weight better) And I do believe it helps with the bowel movements. (Speaking of BMs, Beckett has picked it up even more in that area. We give him about an ounce of juice a day, and we've had about 10 in the past three days! We don't know what to do! HA! But it's better than seeing him really struggle and cry when he is trying to poop every week or week and a half! Ok, more on that when I talk about our nutrition consult!)

Back to OT....we learned some infant massage techniques for the back, which I am NOT steller at because you actually place them on your lap, and criss cross applesauce is a little stiff for this lady! Apparently I am not as flexible as the good old days.

Ok...will have to continue later...I'm late for Bible Study!