Monday, Monday..Ohhhh.

Well, Ellie now has been on antibiotics, our house is sanitized, and we've gotten some rest from this quarantine weekend! She is still coughing, but it hasn't slowed her down any! Beckett luckily has had a calm past two days. He did lose weight on Saturday night, down to 3 lbs. 8.4 oz, but yesterday gained it back (and even stooled!) Now he is 3 lbs. 10.6 oz. And his length is 41 cm (almost 16 inches). He is having no episodes, and his oxygen is around 23 percent. He did get the repogle taken out, and they replaced it with an OG tube that will vent air from. His tummy.

Dr.Grubbs group rotates to Cook Children's across the street for the next three months, but he still is going to come back and see Beckett as his primary doc.

I'm guessing today the doc will start Beckett back on his feeds. Back at square one. Pray for Beckett's bowels as he transitions back to having food in his tummy again. I bet he is hungry for some "real" food! :)

Please also pray for me as I have my 6 week post partum check with my doctor...not really looking forward to talking about what happened specifically with my care, labor and all. I'm guessing I will get no answers as to why I went into preterm labor...

Today is Ellie's Halloween Party at preschool, and she is going to be a K-State Cheerleader (thanks NICU Nurse Cousin Audrey)! We have been practicing "Go Cats." As for Beckett...I did take in Ellie's preemie pumpkin outfit she wore, but he still can't wear clothes again yet. So Beckett had gauze around every limb from all those 7 IV sticks, so I guess he dressed up as a mummy this year! (That was kind of a laugh-cry comment for me!)

NICU Glossary: Re-post

This is the post Ben wrote back when Ellie was in the NICU...although he needs to add Bubble CPAP I see...he did tell me he has a Tech Spotlight brewing, for all those faithful blog followers through Ellie's Journey.

Be forewarned: this is not a medical dictionary. This is a Gramkow Glossary. Some of the definitions may only be valid in the confines of my imagination. Oh, and just because the entry sounds like it came straight from a dictionary doesn't mean it did. It may not have even had a layover at a dictionary. A word on the format: Word - Definition. (aka synonyms) ex: Word used in a sentence. Feel free to comment about any words I missed. A/B - Apnea and Bradicardia episode (aka A&B, A and B) Apnea - a disruption in breathing often consisting of holding of the breath or shallow breathing Auto syringe - A machine that slowly pushes in a syringe to deliver the contents of said syringe at a slow, consistent rate. Binky - pacifier (aka sucky, pacy) ex: I know "binky" sounds weird, but apparently you get used to it. Bradicardia - A drop in the heart rate Brady - A bradicardia episode (plural: bradies or bradys) Gramkow Glossary - A thoroughly researched, well edited, comprehensive list of definitions of all the big words that I can think of at the moment. (Complete with shaky definitions and ample sarcasm) Isolette - A closed bed used to keep premature babies warm and hydrated by controlling temperature and humidity. Ellie's first isolette was a $50,000 bed. (aka Incubator) Lipids - Fat based nutrients that are not soluble in water. Nasal Cannula - A breathing aid that uses a tube with two prongs to push air up your nose. This doesn't force you to breath, it just encourages breathing. NG Tube - a feeding tube running from the nose down to the stomach (aka Nasal Gastric tube) NIC - Neonatal Intensive Care NICU - Neonatal Intensive Care Unit OG Tube - a feeding tube running from the mouth down to the stomach (aka Oral Gastric tube) Pulse Oximeter - A device that measures oxygen levels in the blood. (aka Pulse Ox) ex: Ellie's pulse ox creates the red glowing light seen in many of her photos. Sucky - pacifier (aka Binky, pacy) TPN - Stands for Total Parenteral Nutrition which is a fancy term for delivering nutrients directly to the bloodstream. ex: Ellie's water soluble nutrients are delivered through her TPN. Ventilator - A breathing aid that forces the patient to take set number of breaths per minute. Generally the patient can take more breaths if they choose.

Oh Cold and Flu Season...

Big Sister Ellie has croup and strep. Looks like Gramkows are staying home and quarantined at least until Monday. I tested negative now, but am not convinced we are in the clear. No visits to Beckett for us, until we see if Ben and I get the strep too. Pray for him to have a restful weekend hanging out with the nurses and doctors only. 

Just called in to check on Beckett. Bummed we missed his bath today, but the nurse said he tolerated it well, looked around a lot! She said he still has a great full head of dark hair! I asked if it was starting to rub off from the CPAP had, and she said it wasn't! YAY! He is overall having a good day though! His Oxygen is around 24 percent, and he has the prongs in his nose from the CPAP, they are rotating between that and the mask still. No open sores on his skin, but just red from pressure points. His replogle got moved to gravity, and he's doing well with that. The nurse said sometimes they spit up with that, but Beckett hasn't. Maybe tomorrow he'll progress to just a vented OG tube. He has had no episodes! YAY! He does look a little puffy today, so the nurse practitioner slowed down his TPN rate to 6.5 mls per hour from 7. So we'll see if that helps. 

Last night he weighed in at a chunky 3 lbs 10.2 oz!

**Scroll back a few posts, I just added a pic of him before all the NEC business started (when he could still wear clothes) 

Friday Update with Beckett

I had to re-read the post to see what has all "happened" since Wednesday.
Mama had a great day of rest on Wednesday. Beckett's bad days are so hard for me, but thankful God gives strength to the weak...and reminds us that we really do need rest.
Beckett however, has still had some busy days. Brave Beckett had 7 IV sites total since this NEC business started on Sunday. I may or may not have gotten a message to Dr.Grubbs last night through his awesome wife (I will share the awesome story of how I know her later). And he wrote the order for it to be placed this morning. So today (after they worked with him for 5 hours!) he finally got a PICC line placed, after a failed attempt even. I just got back from seeing him, and he didn't move a muscle...he is exhausted. So hard because its days like this when you really want to just comfort and hold your baby! But...mama singing Jesus Loves Me through the isolette while he had his eyes open will have to do.
Beckett's tummy looks SO much better, not as distended. He might get the repogle out soon (this is the suction tube in his mouth), he still had it through all the PICC business today. He also has been doing really well with his oxygen. I did get to hold him for an hour yesterday, and we both loved it! He was on 21 percent oxygen then. Today, he was around 24 percent. His episodes are all for the most part self resolving.
He is getting so cute! My chunky monkey in preemie terms is now up to 3 lbs. 9.1 oz! Its just amazing to see him fill in a little bit, and not just be skin on bones. Remember the third trimester is when the mamas put on all that weight? Well, its because babies get their fat during it! He is also really hairy, which I think is kinda gross boy-ish, but still cute 'cause he is a baby! :) His lips have filled out, and I love seeing his eyes, and the whites of his eyes every day! Just hate that the poor guy crosses his eyes looking at that blasted CPAP scuba gear.
I think that's all for now...now it's daddy's turn to head to the NICU. Ben's glad we have DVR for that World Series Game 7 tonight! Go Rangers! 

Happy 30 weeks gestation, my Sweet Beckett! You are 5 weeks old today!

IV trouble

Just called to check in on Beckett (I'm taking a day of rest at home today) and they said his IV went out again. This is the 3rd one now in the past 3 days...started with his right hand, couldn't get one in his foot that day; last night had to change it to his foot, and now this one has gone out...

Poor guy.

He has been alternating between the CPAP mask and prongs because he did have some sores from the mask pressure points last night.

He did gain 10 grams last night. Now is 3 lbs. 5.6 oz.

Last night he didn't like being on his belly, and makes me worry because he normally does...

Has had a few self resolving episodes, so that's good none have needed stim.

Yesterday and today, the nurses have said he looks puffy...

Please pray for his precious veins to cooperate with the IV, and pray that his puffyness would go down.

The List

I don't have enough energy to write more than a list about today:
1.Head ultra sound - unchanged, next one will be in 2 weeks
2.KUB X ray from this morning - better, large loops in bowels have gone down, no pneumatosis today
3.He stooled a lot yesterday which is good, and the fluid from the repogle is getting lighter in color, this tells us the bowels are still functioning with the TPN.
4. Wound culture of bumbs on face did come back as staph infection - NEC antibiotics will already treat this
5. No growth on blood culture
6. He got occupational therapy today, and he tolerated it better than last week
7. He did gain some weight - 3 lbs. 5.3 oz.

7 Days of Rest

Beckett was glad to see Dr.Grubbs today. I was teasing Dr.Grubbs that he wouldn't even recognize Beckett after being gone the past week and a half. I also did have to let him know that Ellie has been praying the past two nights for him - For Daddy, Mommy, Ellie, Beckett, Nurse and Dr.Grubbs. He caught up to speed with Beckett's rough day yesterday, and did his morning assessment. Beckett's tummy was a little more distended than yesterday (after it had gone down), and I noticed it really bulged out on his left side. Dr.Grubbs said his belly was still really soft, and the bulge could be from the muscles being stretched. (think when you blow up a balloon, and then the air is let out, and it still looks stretched). Beckett did lose some weight last night. He's 3 lbs. 2.1 oz.

Then Dr.Grubbs reviewed his chart and previous X-rays thoroughly, and came back to talk to me.

The abdomen X-ray indicated there were a couple spots that could be pneumatosis (air that has escaped to the intestinal wall..a place where it's not supposed to be). He wasn't for sure it was, but wasn't 100 percent confident that it wasn't. What does this mean? Well, this is a sign of NEC (Necrotizing enterocolitis)...what I like to refer to as a swear word in the NICU. This is that intestinal disease that we prayed so hard that Ellie wouldn't get, and she didn't, and were praying against for Beckett...and it's not "officially" NEC, and if it is, it's a "mild" case of NEC. It's not like we are rushing to the operating room for surgery, but it is something we are taking seriously. Dr.Grubbs also said there were a couple larger loops in his bowels. So we are treating it with the course of antibiotics for 7 days, like it is NEC. This also means that his bowels would get a rest from feeds all 7 days too.

Dr.Grubbs said he thought this was the best for Beckett. He also said this is what he'd do for his son...put him on the antibiotics, and hopefully we've caught it early, and Beckett can get past this. Dr.Grubbs said that NEC peaks around one month of age and/or 32 weeks, and Beckett is kind of in that range. He'll be 30 weeks gestation Friday.

Nothing had grown on the blood culture as of 24 hours, but the Urine culture came back positive. Dr.Grubbs said the count was low, and he was a bit surprised to see it positive. It's more common in girls, and he also wondered if possibly it was contaminated. Regardless, the antibiotics for NEC will take care of this issue too.

I also had to sign a release for Beckett to get his first eye exam next week. Preemies are at high risk for ROP (Retinopathy of Prematurity). This affects the retina blood vessel growth when they are born early. And it's obviously greater risk for the extremely premature infant. Hate the eye exams. They don't let parents be in there for a reason. It's awful hearing them cry.

Please pray that this week of rest is what Beckett's bowels needed, and pray that the antibiotics do their job in helping Beckett's body fight whatever infection is coming his way. Also please start praying for Beckett's eyes, we pray he will be able to see. Also, he did have another head ultrasound today, so pray for the swelling of the ventricles to go down even more.

There is a chance the pneumatosis could have been a stool on the X-ray, and Beckett did have a poopy diaper for me today. Yes, I was changing it, and had to use a couple diapers...and I may or may not have gotten his foot in it, and his blood pressure cuff tube in it too...had to call for nurse back up on that one! :) He will have a repeat Kidney,Ureter, Bladder X-ray tomorrow to check things out again.

Until tomorrow...

Holding You

I had a good morning. Got Ellie to preschool. Picked up my prescription refill, was feeling good about facing the day. Guess I am just like my son...things change all too quickly.

I turned into the hospital parking garage, and lost it. I already have puffy eye syndrome from crying so much yesterday. I don't want to be here. I don't want Beckett to be here. I want to be almost 30 weeks pregnant still. Why Lord? Why again? What didn't I learn through Ellie's NICU Journey?

I'm in my car, in the parking garage, singing, and trying to worship, but it feels so empty...I know God's mercies are new each morning, but I just want to walk in to today and hear only good news.

I'm exhausted. But I guess its time for Mommy to be brave today.

Yesterday's sermon may have been on peace, and I may have been distracted throughout the whole thing, but God reminded me of His Peace this morning through this song...yep, its how I really relate to God. Maybe its cause I'm a singer...neat how God works like that. So thankful for the lyrics, words are so powerful. Thank you Matt Hammitt once again.

Holding You by Matt Hammitt

Mother in a waiting room
Wondering if she'll hold him soon
In the darkness searching for some light
People say it will be alright
People tell you to hold on tight
But what do you have to hold onto tonight

Where do you find
Peace when you cry
In these hard times
Its not in what you hold onto
Its in the One who's holding you tonight

Its like staring down a wishing well
The voice inside cries out for help
But you never felt so helpless in your life
Time becomes the enemy
Cause you just gotta wait and see
While all the world is simply passing by

Where will you find peace
Peace when you cry
In these hard times
Its not in what you hold onto
Its in the One who's holding you tonight

You are safe in the arms of the Father
You are safe in the arms of the Father
You are safe in the arms of the Father
---------

So thankful my Beckett is safe in the arms of My Father. So thankful mama is safe in the arms of The Father too.

God blessed us with another day, and ok, I'm ready to be brave. Praying you experience God's peace today in a new way.

Heading in the right direction...

Beckett did get lasix after his blood transfusion to help with fluid retention. And last night he had a fairly restful night. He did lose 20 grams, but I wasn't surprised by that. He wasn't tolerating being on his back last night, and did have a cluster of episodes that she had to stim. His oxygen is hanging out around 25 percent.

His 4 am chest x ray revealed that his diaphram is not as high, and the air in the belly and the intestines are lower. His 5:30 am bloodwork is looking better. The transfusion helped boost his hemaotcrit up to 39,  and the CRP didn't change at 1.6.

All in all, everything is heading in the right direction.

Brave Beckett

We are headed home...things seem pretty stable for Beckett. His blood was still going, and would be done at 7 pm. He tolerated that fine. Dr.Lynch came back in and talked to us about his chest and kub x ray, and it still showed a lot of air in both the tummy and intestines, but was less than this morning, so we are heading in the right direction. Also she said his lungs were able to actually expand more like they are supposed to now with less air. Will repeat at 4 am.

Called lab to see if we could find out about his wound culture on his cheek area, but said cells hadn't grown long enough to tell yet. So hopefully tomorrow we will know something for sure. And then the preliminary results from the blood and urine cultures should tell us something at 24 hours, around 11 am tomorrow.

Please pray for a rest filled night for all of us.

Until tomorrow when Beckett gets to be brave again...

Update on the Busy Day

Unfortunately, I really couldn't pay attention to the rest of the church service. Guess moms are really good at that, being distracted and all. When we got to the hospital (Thank you Anna and Jared for taking Ellie so both Ben and I could come), Beckett's nurse already said that his belly size had gone down with the help of the replogle tube, which is the tube similar in size to the OG tube, but has a suction attached to the end. She also said his color wasn't the greatest this morning either.:( She had him yesterday, and just knew that something wasn't right. So for two hours straight this morning, they were working with him. Between the blood cultures, urine culture, getting the IV started, stopping the Vapotherm, re-starting the CPAP, and not being able to get the second line in his foot for the blood transfusion in...

Not going to lie, I'm glad I wasn't here.

It was a lot to hear over the phone, I'm not sure how I would have handled it being here. Other days, maybe. Guess just not today. I already hate how distended his tummy looks, and the fact that it was even bigger! Makes me so sad for him.

He did have a few more issues that I didn't mention. While the nurse and RT were giving him a bath yesterday, they found four red spots on his face. The nurse called in the nurse practitioner to take a look at it. Then the spots burst before the practitioner could even make it to the room. They swabbed the fluid and sent it out for a culture. Not sure if it's staff infection or not, but the culture results are supposed to be back within 24 hours which is at 5 pm today.

He also had some nasty yellow residual, so motility is being affected by whatever is going on. 

He did get his first dose of antibiotics - gentimyicin and zosyn. He will continue those based on the results from the blood and urine cultures that will be back within 24 hours (tomorrow around 11 am probably). Because of his increase in Apneas and Bradycardias, the doctor gave the new adjusted dose of caffeine based on his weight, at 2 pm today (so 12 hours early, just to try and get that going too).

They weren't able to get a second IV inserted for his blood transfusion, so they are stopping his TPN (IV nutrition) and will deliver the blood through the line in his arm. Hopefully he will keep his blood sugars stable through this process. They will check it periodically through out the transfusion. He's getting 30 mls of blood. Again, thank you O negative blood donors. They told us too that most likely, it's the same donor. Oh, and we forgot to mention last time Beckett needed a blood transfusion that if you do give blood. Ben gave blood shortly after the last one, at Carter Blood Care, and they credited it to Beckett. So if you donate blood at Carter in North Texas, ask to credit it to Beckett Gramkow, and they actually won't charge for the blood that Beckett needed here in the hospital. I think that is so neat.

His CRP (measures inflammatory response) was elevated, his hematocrit was low at 26.9, and everything else was kind of borderline.

He's getting another Chest X Ray, along with a Kidney, Ureters and Bladder X Ray at 5 pm, and at 4 am as well. And remember tomorrow is another head ultrasound (ugh, tomorrow is going to be a busy day too, I'm guessing) Dr.Grubbs is back tomorrow, and wow, we will have lots to share with him!

Dr. Lynch just came in and is already encouraged by how different Beckett looks from this morning. His belly is softer so that is good. We had grilled the nurse practitioner when we first got here, so we didn't have many extra questions for the doctor. :)

So we again, will just continue to wait and see. Keep praying.

Happy 1 Month Birthday Baby Beckett!

Please pray...bad, busy day

Well, my Sweet Beckett had a good night last night, and reached 3 lbs. 2.8 oz, but the nurse said that was a lot of gain, and a little unrealistic for 24 hours.

This morning he started having more As and Bs that needed stimulation, really starting around 7 am, and his tummy was even more distended than yesterday. He has a bubble belly from the CPAP anyways, but its gotten worse.

And of course, today, we decided to come to church because I felt pretty good about Beckett's days...but then again, this is something I needed today too. Even though I couldn't sing any songs because the tears were flowing, I was comforted by just listening to the songs, and letting my church community sing for me today...

But the doctor just called, so I stepped out. Sad I recognize the number.

They tried a different breathing accessory, a vasotherm? Nasal cannula to see if the lower pressure would help his belly, but it didnt. His belly is full of air, and his intestines are full of air too. They ordered x rays and bloodwork, and cultures.  his x ray said that he is really full of air, but its slowing down his intestines function. His tummy is still soft, but the too big of belly is concerning to the doc.

So they are stopping his feedings the next 24 hours, inserting an IV, and going to give him nutrition thru IV to give his tummy a rest. They put him back on CPAP cause he needs it, but are inserting a special OG tube with a suction to try and get some air off.

His hematocrit is low too, 26, and so he is getting another blood transfusion.

He will also be on antibiotics for the next 2 days.

Doc is also sending blood and urine cultures to the lab, so we will see what those tell us.

Three steps forward, one step back. I still hate the steps back.

The doc said no need to rush to the hospital, he is stable, but she wanted to call because a lot has changed. And she will talk to us more when we get there...

Please join in praying with me again...pray for his tummy, and pray that these 2 days of rest will be what he needs, please pray against infection...

Just so hard, things change so quickly. I will keep you updated...please pray for Ben and I...the sermon today is about peace...how fitting. Pray that we feel God's presence. And peace today...

3 pounds!

Yay! Beckett gained weight last night, and is now up to 3 lbs. 1 oz. Wahoo! So proud!

Last night he did pretty well with fewer desats. He did have a couple bradys that self resolved. None that needed stimulation, so that's good. At one point they got his oxygen turned down to 25 percent. However, it totally depends on which position he is laying. He prefers his tummy and his right side.

He is still being a good boy and tolerating his feedings!

The CPAP mask now created pressure point sores on his face, so they are alternating that and the prongs. They did say his nares looked better, so the prongs went back in.

Today we are taking Ellie to the March of Dimes sibling class! And I have a couple friends in town (girlfriends from grad school!), so that will be fun to have some quality girl time! Oh, and of course we can't forget to cheer for our K-State Wildcats today as they beat those Kansas Jayhawks!

CPAP Mask

Well, apparently Beckett hasn't had enough head accessories, so he decided to try out the CPAP mask. Last night they noticed sores in his poor tiny nose, and so they put a smaller prong size in. However, now its not sealing the greatest, and he isn't bubbling as well as he should be. (Bubbling is part of the functionality of the CPAP set up) So, an hour ago, the Respiratory Therapist, Fisher Paykel Rep for this new CPAP system, and doctor decided to put the mask on Beckett to give his poor nose a break. They put that on around 1 pm, and the nurse said he is already desatting less. So hopefully it will be the break that he needs. Now, I'm sure he looks liike he has a gas mask on now, instead of a scuba diving look. I haven't seen it yet. This morning was Mommy and Ellie time!

He is tolerating the 28 mls great, with only 2 mls of residual, and has had a small and big poopy diaper, so all is working well there! Last night he had a fairly low key night, aside from the CPAP drama. He did have 1 brady episode at 5 am, and then the day nurse said he has had a couple today, but then again, everyone is still messing with him a lot!! I'm ready for the CPAP drama to stop, but I do understand, it takes time for everyone to learn the new set up...just hate hearing him cry everytime, and I think this also might be why he isn't tolerating much stimulation.

He was SO close to hitting 3 pounds, but not yet. Hopefully tomorrow! He is 2 lbs. 15.8 oz. today, and still growing! Wahoo! Great job B man!

Thanks for all your prayers. I think now we are in "just grow" stage, and I pray it stays low key!

Happy 4 week birthday to my Sweet Boy! Happy 29 weeks gestation too!

28 mls

Beckett's feedings got bumped up to 28 mls today. Big boy now weighs 2 lbs. 14.2 oz. Sooooo close to 3 pounds...you can do it Beckett! Maybe tomorrow. His electrolytes lab came back normal last night, so no sodium addition needed. He has had 3 episodes that needed stimulation...one last night, and two already this morning. He had a couple when I was holding him too which is why he got put back to bed. :( I also noticed that when I would touch him to try and contain him, he would desat, so I think he is just flat out telling us to leave him alone! He is still desatting a lot, but the doc said this is par for the course. We do know he is anemic, but we want his red blood cells to kick in, otherwise we would have to transfuse him every week. Slow and steady growing phase we are in right now. He will be 29 weeks gestation tomorrow, and 4 weeks old!

Please pray for Beckett's poor nose...it is so dilated, and the prongs are starting to go in a little too far up his nose. They don't want to go up in prong size though. He does have some sores in his nose, that of course with prongs in there all the time aren't really healing. Ouchy! 

Stinky feet!

So Beckett is already taking after his daddy...in the stinky feet category. (Ben, you know I love you) The nurse and I gave him a bath today, and when she changed the pulse ox to the other foot, we couldn't help but notice the stink! And so I smelled it close and it smelled just like daddy's stinky feet. Weird how that made my heart kind of happy...now if we could only get daddy to clean his feet with the good smelling Johnson and Johnson baby soap! He tolerated his bath really well. We didn't do his hair because he just got the new CPAP set up a couple days ago, (notice he looks like a scuba diver now!) and we didn't want to over stimulate him. But it was a calm, non stressful wash for all involved, and it was so sweet because I could just stare in amazement at my sweet little boy and thank God for how different he looks even for just 3 weeks. He totally knows my voice too, and its so sweet when he peeks his eyes open at me now. He is just too cute. I love him so much, even with his stinky feet!

Yesterday, and even last evening he was starting to have more epidodes and desats, so I was thinking we were going down tje road of him telling us he was getting sick. However, he did calm down last night after 10:30, and didn't have another A and B until 4 am, and all self resolving. I was so glad to hear this news because last night he was having a cluster of episodes, one right after the next.

His weight is now 2 lbs 13.4 oz. I cannot wait to see that 3 pound mark!  His oxygen is still anywhere between 28 and 34 percent, and he is still desatting more than he normally does. Hopefully those baby red blood cells will start maturing fast. But we are actually hanging out in the dark right now, and he hasn't had one in a while! I think I might take a nap after lunch! Thank goodness the backlight is bright so I can type! He is still tolerating his feedings pretty well. Yesterday, the nurse said that his electrolytes were low, so they might need to add sodium to his nutrition. They will redraw those labs tonight. 

So Beckett is having a low key day...he has some things we are keeping a close eye on, but so far so good. I got him this micro preemie blue shirt, and it fits him a little better...and then we changed him after his bath into this preemie outfit with helicopters on it. He is so cute with clothes on!!

Low stimulation day

Beckett definitely needs his rest today. Even the nurse suggested that he just rest in the dark, with low stimulation! Like I said before, he got the new CPAP set up yesterday, and had the head ultraound, and poor guy just cried a lot! Poor mama was getting stressed out too! So today, he has had a need for increased oxygen. The nurse said he had a cluster of desats this morning, and has taken a while to recover after doing his cares (temp check, diaper change) before starting his feeding every three hours. Nothing needing stimulation, but his oxygen has had to be bumped up. His need for oxygen could be related to his hematocrit being low, but again, we are waiting to see if his baby red blood cells kick in to help with the anemia of prematurity. Another transfusion could be in his future. Please pray for Beckett's baby red blood cells today! Which you can imagine are REALLY tiny ;) Tiny, but mighty right?

The doctor called me on the way to Women's Bible Study today. His head ultrasound from yesterday revealed that the swelling hasn't increased. Last week it measured 44 percent, and this week it went down to 40 percent. So trying to cling to the good...that it went down. Of course, I'd like it to just be gone.

So thankful that Beckett has had some good days, and I felt ok taking the morning away from Beckett to go. It was great to be back to Women's Bible Study this morning. We are going thru the study One in a Million by Priscilla Shrier, and of course we are talking about going thru the "wilderness." Of course we are! It was good food for my spiritual soul, and it was so good to be in company with the gals. It definitely helped remind me of the hope that God has for us thru this journey.

Early Morning Update

Beckett gained weight last night! Wahoo! He now weighs 2 lbs. 12.8 oz. He had a rough day yesterday as the RT messed with him quite a bit, so I wonder if he is just still tired from all that. His oxygen has stuck around 31 percent. He is tolerating his feeds with a residual of only 2 and 1, so that is great! They did do lab work, and his hematocrit dropped to 27.5. However, we will just keep an eye on it because his retic is still good...so his body is still making a good amount of baby red blood cells. Did have head ultrasound yesterday, so will hopefully get results today.

So thankful to God for the past GOOD few days!

Happy Tuesday!

Cuddling with Beckett

This morning I got to cuddle with Beckett skin to skin. He did great! It was the first time holding since his awful night of episodes last Thursday, so I was super excited. He is having a great morning so far. The nurse practicioner came to check on him, and said all is well. Dr.Grubbs isn't back today. The only new order is his head ultrasound. So please be praying that the swelling of his ventricles has stopped. Also, respiratory therapy is trialing a new kind of cpap machine, so now he will look like a scuba diver! I will post pics when they get it all changed out...hey, whatever helps my little boy breathe!!

Calm Weekend and Bath time!

Beckett has been a good boy this weekend, and we are so thankful! He did gain weight last night, and is now up to 2 lbs. 10.7 oz. His length didn't change, still 38 cm. He has been doing really well with little episodes, and the ones he had were self-resolved. He now gets his 25 mls over an hour on an auto syringe, and a second og tube in his mouth is helping him vent. It seems like the over an hour delivery is helping him desat less, which I think I did mention before. His highest residual was 3 mls. He has had some good poppy diapers, so everything is moving along, but his belly is still big. He has loops again. His oxygen has been hanging out a little higher at 33 percent. And he did get to put clothes back on! Yesterday actually.

Ben, Ellie and I went yesterday for Beckett's bath, Ben helped while I held Ellie. Tina came and took pictures, so I can't wait to see them! He was opening his eyes the longest he ever has before! Ellie was intent on watching Beckett's every move. She is so cute. Often times, Ben says "Daddy's here" to Beckett, and I say "Mommy's here"...well, this time Ellie said, "Ellie's here" right after we did! It was so cute! She loves her baby brother!

Baby it's cold outside

Well, not so much today at the pumpkin patch! It was blazing hot! We did have a great time! It definitely wore both Ellie and I out!

But tonight Beckett's temp has been a little on the cold side, even with a shirt, sleeper, and swaddled blanket on. So he had to strip back down to his t shirt and they put the isolette temp probe back on. So now the isolette is chasing his temp again to adjust accordingly. We just don't want him burning calories trying to maintain his temp at this point in the game. However, I did snap a pic before he lost his sleeper. This is a preemie outfit, and you can still see he's swimming in it. They did take the canulaid off his nose (just to see how he would do) and so far so good. Of course as I am typing this he stopped bubbling. Pray for Beckett's nose...it is so sore from the prongs and the air that escapes from the pressure.

He is desatting quite a bit (this means he isn't apneac per se because he hasn't held his breath more than 20 sec). But he is bringing his oxygen saturation right back up. His belly is still distended, but still soft, and bowels are souunding good.

Love, love, love the airplanes we are getting. I took another pic! It is such a neat thing to share with the nurses too! Thank you for loving on our Beckett this way!

Ellie meeting Beckett

Our little pumpkins

Well, today we are taking our 3 year old pumpkin to a pumpkin patch, so that should be fun.

As for our 3 week pumpkin, he is doing well this morning. He is doing his normal desats, and his oxygen is at 30. He did have a brady during report this morning. His temp is good, his heart rate is hanging around in the 160s. The nurse isn't happy with how his CPAP is positioned, so she and RT are going to change out all his head gear.

Good report. Yay!

It's still a good day! Praise Him!

My clothes wearing Beckett, which the nurse tonight said that even the preemie onesie is huge! (Amanda, its the dynomite onesie you gave me) he is up on his oxygen a little, 29 to 31 percent, but he is laying on his left side, and doesn't like that as much. He is tolerating his feeds, his last residual was only 1 ml. Pretty good for eating 25 mls now! Tonight he weighs 2 lbs 9.8 oz. His heart rate has been around 160 and 170, which is kind of where he trended last time he didn't tolerate the caffiene, before it went even higher. But...he is a bigger boy now, and that caffiene increase attempt was 2 weeks ago. His Retic (bloodwork indicator of how well he is producing baby red cells) count was 243. This is good news. Norm is around 75, so this means his body is responding to the need for more red blood cells to help his hemoglobin and hematocrit!

The human body is so amazing...even such a tiny human body. Praying for a calm, restful night, and praising God for a good day today.

New Blog Pages!

You may notice that the structure of the blog has changed a bit. Some of the information in the right hand column has now been promoted to its own page.

So now ... if you're new to the blog and want a brief overview of our story: There's a page for that! If you're having trouble figuring out how to leave a comment: There's a page for that! If you're wanting to video chat with us live from Beckett's bedside: Sorry. No dice on that one.

Mini Update on my Mini Beckett

I'm supposed to be trying to sleep, but I just had to call and check in again quick. Nurse Lydia said that Dr.Wineman increased his feeds to 25 mls on auto syringe for 30 minutes, and he just got that for the first time at 11am, and seems to be tolerating it fine. They are still chasing his oxygen back down, and its currently at 23 percent, heart rate is 155. They did give him some lasix to help with fluid retention. Sometimes that can contribute to the increased episodes too, and she wanted to rule that out as a factor for his wild night last night too. So even though he gained 80 grams last night, he might not tonight.

And he's still doing great being a swaddled burrito with clothes on!

So thankful for the prayers for our Mini Gramkow. We got more airplanes today, and I've taken some pics of his room. I pretty much cry every time I open up new airplanes from the mail. We love them, so please keep them coming. Project Airplane is such an encouragement to Team Gramkow.

Ok, really going to rest now. :)

Ooh ... Wild Night

So our son had a pretty wild night last night. He had a bunch of people going wild at his place. Things didn't calm down until after 4 am. No, I'm not talking about our out of control college aged son. Unfortunately our little baby boy was having a hard time last night. But God is faithful. His mercies are new each morning.

This morning - as in the period after we woke up, not the period when we were still up - we found out the results of his latest blood work. And they were exactly what we were hoping for! At 8 am his C02 was back down in the 60s. His blood oxygen saturation has been up as high as 94% now with his CPAP oxygen at 26%. Beckett's last heart rate drop requiring stimulation was 2 am! And his last one without needing stimulation was at 4:45 am! Good work champ! Wait a sec, now that I think about it ... a few weeks ago he started a big party on a Thursday night that didn't calm down until 4:43 am when he was born on a Friday morning. Let's not make this a habit Beckett. You and I might need to have a talk.


They're putting his feeds on a pump that runs over 45 minutes. His bowels look good. (Still distended, but no loops.) And he had a major blow-out diaper! (Yes it is true, parents celebrate odd things.)

And the (other) big news this morning: (drum roll please) He's wearing clothes! His temperature was running hot. So they weighed him on a different scale than what they had been using and he weighed in at 1230 grams. They don't push these little babies to regulate their own temperature until they're past 1200 grams. But since he's above 1200 grams and he was measuring warm, they decided to put clothes on him and set his bed temperature to a constant temperature. Recall that before his bed was automatically adjusting the ambient temperature in order keep his measured skin temperature near a target temperature. That's a perfect example of an electronic Control System ... surely somewhere in there is a PID controller.

Anyway, the nurse said he is wrapped up in a blanket too and looks like a little burrito. Lydia is his nurse today. She said we could bring clothes for him!

What a wild ride these NICU stays can be. Please pray that he will tolerate his new dose of caffeine and his heart rate won't rise too much.

Let Go - by Matt Hammitt

I'm back home now. I'm thankful for the peace I had about leaving Beckett's side. His episodes seemed to calm down. I do think the caffeine helped. He still kept desatting, but at least he would self resolve instead of having to be vigorously stimulated by the nurse like earlier tonight.

Why Lord? Why am I the one who keeps begging you to let me have just one more day with Beckett? I know this preemie thing is one day at a time ... but then I doubt. I get scared. I feel helpless, and it drops me to my knees again pleading to let me keep my miracle baby ... many more days. Please God. Our family is complete with our Sweet Beckett.

I cried the whole way home driving from the hospital. My good friend Casi gave me a copy of her Jonathan's "heart" album. I tried singing this song on the way home.

This song is my prayer tonight ... today.

Please pray this for us:

http://www.youtube.com/watch?v=GhmbtZfVi9U


Let Go by Matt Hammitt
I want to hold on 'cause I'm afraid
And I didn't ask for it to be this way
Somehow I found myself caught in the grey
Reaching out for fear, running out of faith

You know what I don't
So help me to let go
You're in control
So help me to let go
I want to let go

I want to let go of what I can't change
'Cause I can't wrap my mind around Your ways
I've got more questions than I have answers these days
Please don't let my suffering go to waste

You know what I don't
So help me to let go
You're in control
So help me to let go
I want to let go

These are the moments its hard to believe
So please help me, please help me
These are the moments of surrendering
So please help me,  please help me

You know what I don't
So help me to let go
You're in control
So help me to let go
I want to let go

Every Breath

Beckett's blood work came back more elevated than what I was hoping. His CBC indicated his white blood cell count was elevated, his hematocrit dropped, and his CRP to detect inflammatory response or infection also came back elevated. The NP and doc ordered a 7 mg dose of caffeine to be given now, and decided to give an additional bolus of 10 mg of caffeine to see if that will help his apneas and bradys. Poor guy has been messed with all day, and is probably so stressed from having to get through all these episodes. If he doesn't settle down within the next hour with his breathing then they will move him to a CPAP with a rate. The rate would force him to have a minimum number of breaths per minute. It would help him rest so he doesn't have to work so hard. It is not a vent, so that's good. They will also run another blood gas.

But we aren't there yet. So more waiting. They said it would take about an hour to see if the caffeine kicks in.

Waiting and praying. Come on little Beckett. Still here with you my little buddy. Mama's here. So hard when you hear the nurses say "He's just not breathing." Come on Beckett. You are mama's little fighter, remember?

Urgent Prayers

PLEASE PRAY: He just desatted to 54. He really didn't recover well on that last Apnea/Brady...the nurse just called in RT to assist, and she had to bump up his oxygen to 53 percent. And now they are calling in the charge nurse. His nurse has just said he's got more loops in his bowels now...please pray...

Well, RT came in, and they did put the canulaid on his nose to help seal his prongs. He is not bubbling the CPAP very well, and it's taking a small village of nurses and Respiratory Therapist to figure out why. The charge nurse came in too, and they changed out his CPAP hat too. He's very active and feisty, so that's good. Lethargic is more indication of him being "sick." His loops in his bowels have already gone a little bit down. The plan is to see if they can fix the oxygen flow issues with the canulaid. And they will keep an eye on his belly.

The nurse now rolled her chair in so she could be closer to his isolette. And I'm not going anywhere soon either.

I'm fervently praying that he will settle in and calm down...soon. Deep breaths Beckett, deep breaths Mama. 

I am still having flashbacks of seeing the two nurses and the one respiratory therapist with the isolette top popped, working frantically on Beckett. It reminded me of the delivery. HATE this.

He's still continuing to brady, and desat. The CPAP isn't sealing on his nose again. The monitor won't stop alarming. 

Come on buddy. My sweet boy, please calm down.  

Catch Up with Beckett

Tonight I missed my Little B a little extra, so mama came back for a late night date. Daddy and Ellie were going to watch the Rangers Baseball game that Daddy recorded. I got here a little earlier than when the unit reopened, so stopped in at the March of Dimes NICU Family Support Scrapbook night. Auntie Leesha would be proud of me...I did one page. :) They actually provided me with a whole book and kit, which I thought was really neat. On Tuesday's meeting, guest speakers talked about Kangaroo Care and Baby Wearing, and then we made moby wraps that we got to take home. I did make a blue one for Baby Beckett even though I already have a fashinonable mandimoo designs wrap that I got with Ellie. Still been a little hard meeting other parents, but that will come. I'm now noticing the frequent flyers...which are probably the ones with little babies like our Beckett.

Last night Ben and I got to come to the NICU together, which was such a sweet time. This NICU journey has been very different in that regard because we have Ellie to care for at home. It was fun news to hear that he gained weight! Beckett weighs more than his big sister did when she was born! Ellie was born at 27 weeks and 6 days weighing 2 lbs 7.5 oz. And yesterday, Beckett was 27 weeks and 5 days gestation and weighs 2 lbs 8.4 oz. Great growing Beckett! So he officially weighs more than a 2 1/2 pound weight. So TODAY, Ellie's gestation at birth, Beckett weighed 2 lbs. 8.4. Big boy!

Last night, I tried to read him the Night, Night book that we read to Ellie. We only got through one page before Beckett gave me the "I'm over stimulated, Mom" talk to the hand signal. Maybe another day, we'll get through another page. We'll be here for a while. We have time.

His Oxygen has been up and down. Last night he started being naughty, and his episodes have really increased. Like I said earlier, they ordered a Chest X Ray, and that came back clear. Which is good news in one regard. However, now we don't know what's causing the increase in As and Bs. Maybe he has outgrown his caffiene dose? Although he has the sensitivity that we found out caused the high heart rate before. Hmmm. The mystery continues. I feel like he's trying to tell us something, but well, we just don't know yet. His tummy did show some loops tonight (and you're wondering what this is...bowel loops, that the nurses can physically see through the skin on his belly because it's so thin and he doesn't have any fat). But he's still pooping and tolerating his feedings, tummy is still soft, even though it's distended. He's been having troubles with his bubble CPAP. He did get the next size of prongs put in his nose (size 5) which are as big as they go for preemies. Yesterday his nose was bleeding because the size 4 prongs weren't sealing his nose, so the air pressure was drying his poor nose out. :( He's also had a bunch of episodes today, and has had to have his oxygen bumped up. So far today, he has had 7 As and Bs, and 4 required stimulation. One required moderate stimulation where she had to tap his feet repeatedly to try and get him to "remember to breathe." HATE this. I just feel so helpless, and I just have to wait and see when he's going to respond and remember. I know this is all part of growing up as a preemie. Still HATE it.

This morning I tried to hold him skin to skin, and he had a couple bradys where he wasn't recovering well enough, so we had to put him back to bed. Let's just say he's been keeping the day shift nurse, and now the night shift nurse on their toes. I wonder if they will order more tests tonight, maybe bloodwork? Or I'll be interested to see what the doctor says about his increase in episodes tomorrow morning for rounds.

Since I'm here so late, the nurse did already weigh him, so now he's up to 2 lbs. 11.3 oz. This makes mama very happy!!

Please pray for Beckett's lungs and heart, and for his episodes to decrease.

Chest X Ray

Well, little Beckett is getting another Chest X Ray. He has had a LOT of episodes this morning. His tummy is super distended too. :( we are waiting for X Ray to come. Dr. Wineman is seeing him today and thru the weekend. She said he may have fluid on his lungs, and so we will check. He didn't get lasix after his blood transfusion, so that could be related.
He also didn't tolerate kangaroo care today. We had to put him back to bed because he was having too many episodes. And yep, I saw him dusky, gray again. :( He is keeping today's nurse on her toes!
Also pray for me, I'm having more issues with my body. And I'm waiting on a call back from my doctor. I tell you...recovery after having these kiddos is brutal!

Trying to Put Yesterday Behind Us

We spoke to Dr. Grubbs last night. He's doing fine on his oxygen and his feeds and his intestines are looking good. He weighed in at 2 lbs 7.2 oz. His chest x-ray looked good. Dr. Grubbs said he had pretty normal looking lungs. Then he proceeded to list off a bunch of nasty sounding things that they look for on chest x-rays that Beckett does not have. It was nice to hear that he didn't have any of that stuff.

But the big news was about his head ultrasound.

Last week he was diagnosed with a Grade 2 bleed. There was some blood entering the ventricle on the right side of his brain. But there was no swelling (Grade 3) and there was no blood entering the brain tissue (Grade 4).This week they determined there was no additional bleeding, so he still has just a Grade 2 bleed. Yay! But they also noticed that the ventricles enlarged. That was exactly what we did not want to hear. They measured the percentage of his brain's width that was taken up by the ventricles. It went from 38% (last week) to 44% (this week). For some reason he said that even though there is swelling it is still classified as a grade 2 bleed. I'm not sure why it's not classified as a Grade 3 bleed since the defining characteristic of a Grade 3 bleed is the swelling of the ventricle. But I am glad that it's not a Grade 3 bleed.

He went over the possibilities if the swelling progresses. Once the percentage gets to 50% - 60% they put in a shunt (drain) so the fluid can drain out and the swelling will stop progressing. That means they basically drill a hole from the outside of his brain all the way into the ventricle. If the swelling progresses slowly then they will put in a permanent shunt that drains into his abdomen. Since its permanent they have to coil up the tube in the abdomen so that it will have room for him to grow. If the swelling progresses quickly then they will put in a temporary shunt that drains to a bag outside his head. The nurses will periodically remove fluid from the bag. Then after he's grown a bit bigger they'll put in the permanent shunt. We really don't want a shunt. Please pray that the swelling will stop so he doesn't need a shunt. Of course we also don't want him to have neuromuscular delays.

It seems a little odd to me that Tuesday and Wednesday I was telling everybody at work how great he has been doing. Then we get this news and all of a sudden it doesn't seem so great. We're worried about Beckett. We know that we can trust God and we know that His protection is over us. But this is scary and we don't like it.

Happy. Sad.

Happy because Ellie got to meet her baby brother. Sad because we found out that Beckett's brain bleed is swelling his ventricles. :( hard news. We are exhausted. Will write more later...

Busy Beckett

There is no rest for the weary: Beckett's busy day continues.

I came to see Beckett this evening as Mandy is having the girls over tonight. Naturally I was talking to the nurse about his day. She said his hematocrit was lower today than it was the first time he got a blood transfusion (26.3 today vs 26.8 last time). They determined that this is why he was having trouble with the low oxygen saturation that caused them to have to turn up the oxygen levels in his CPAP.

This will be Beckett's second blood transfusion. I'm definitely not excited that he needs another blood transfusion, but I am very glad that they figured out why he's been having so much trouble with his sats (oxygen saturation) the past day or two. And I'm even more glad that it can be fixed as easily as a blood transfusion.

I still remember getting the call from the hospital when Ellie needed her blood transfusion. It was around midnight and we were very worried because to be getting a call from the hospital at that time of night.  It's not as scary this time. With Ellie though, it was a bit of a relief when we found out it was a blood transfusion that she needed. At least it was better than the unknown. But at least for me I think it's a bit more worrying this time. I'm not worried about anything in particular. I know that this is going to help him keep his sats up. But it is another reminder that he is so tiny and needs a lot of help to make it through. That makes me worry and wonder about what else might be coming down the road. But just as Mandy was reminding me this afternoon we need to trust God with the things we can't control (and even with the things we think we can).

Well there's another big difference with this blood transfusion: I get to watch. This is the third time one of my kids has had one and I've never been here for it. This time I'm here to cheer him on. He had 3 or 4 desats in the first twenty minutes that I was here (one with a drop in heart rate). I kept telling him he would feel better soon. I promised. So this transfusion had better work.

As of right now (9:30) his sats are up and he has only had one desat since the transfusion started at 9:00. The transfusion is 20 mL over 3 hours. So he's only received 1/6 the blood so far. The nurse said it can have an effect this quickly. She said in another half hour she'll take his vitals again. If they're still good she'll start turning down his oxygen. Right now it's at 33% with 6 cm of pressure. I'm going to have to do a tech spotlight on this CPAP thingy, but in the meantime let's just say the more cm, the higher the pressure of air going into his lungs. The nurse said it's not uncommon for babies to go all the way back to 21% oxygen (same percentage as room air) after a transfusion. Come to think of it, he used to be on 21%. Then they had to increase it a little but it was still in the low twenties. Then they had to increase it a little more, but it was still in the upper twenties. Then the last couple of days ... well it got as high as 37% today, and like I said it's at 33% right now.

Breaking News: His oxygen saturation just went down to about 81% and set off the alarm. But now it's back up to 94%. So maybe he's still figuring out what to do with all this new blood.

By the way, many thanks to Carter Blood Care for providing the life giving blood for my son. Remind me to make an appointment with them to give blood tomorrow. And this is me reminding you to give blood too! For reasons unclear to me, Beckett is getting O negative blood. That's a valuable commodity! His blood type is A positive, so I don't know why they wouldn't give him A positive or O positive. But I am all the more thankful. Special thanks to all those O negative people out there who have given blood. Beckett is getting a shiny sticker today in your honor.

X-rays and ultrasound day

Dr.Whitborn came to see Beckett today since Dr.Grubbs isn't back until tomorrow.

Over the weekend, Beckett has increased his amount of episodes, and had a lot of desatting. Right now his oxygen settings have been the highest they have been. Hanging out at around 37 percent. The doctor ordered a blood gas and a chest x ray to see what's going on. The blood gas came back ok, not great, but ok. So we will see what the x ray tells us. They just want to make sure that they check everything out or we will see if he is just telling us, I'm tired from working so hard.

Over the weekend, the nurses also found some loops in his bowels. They come and go, and the doctor didn't see any today. And she confirmed that he has good bowel sounds, good coloring, his tummy is soft, and he is tolerating his feeds. Loops are one symptom that alarms them to pay attention. Again, please pray that no other symptoms develop that would lead to NEC.

Today is his follow up head ultra sound too, so let's pray for a miracle there. Last one reported a brain bleed of Grade 2. Please pray for less.

Poor Beckett has been messed with a lot already this morning, so we won't hold today. And he has yet to get the head ultra sound. :( he is going to be worn out. Pray for a restful, low stimulation rest of the day.

Sunday Update

Beckett has had a pretty low key weekend for the most part (which I don't mind a bit!). I held him kangaroo care style for his 2 pm feeding, and then actually went home because of a headache that wouldn't go away. I was able to take a nap, where Ben woke me up at 8 pm. I totally thought it was 8 am!

His feedings have been going well, still at 22 mls with the 6 calorie fortifier. He has been desatting a little more frequently, so his oxygen has been hanging around 33 percent. When I called the NICU just now, the nurse said he was sleeping well, and desatting less, so that's good news.

He did gain last night, so he's up to 2 lbs 6.5 oz. And they measured his length, since its Sunday, and he grew 2 cm, so now he is 14.96 inches long (or 38 cm).

Please pray for Ben today as he is heading back into work. Pray also for my follow up appt with my doctor. Thank you for your prayers for our Beckett. We feel them.

You are supposed to be our miracle.

The moment the NICU team whisked our Sweet Beckett away in his isolette after I delivered, I remember the stillness in the room, like time had stopped. Ben and I didn't look at each other, we just looked straight at the wall, straight ahead and wept. While the nurse was telling us Congratulations, honestly that was the last thing we wanted to hear. This wasn't supposed to be this way.

I remember my Ben dropping his head to my shoulder weeping as we heard Beckett's cry. We so just wanted the contractions to stop. This wasn't supposed to be this way.

I remember screaming for Jesus to give me peace with every contraction, as it was getting worse and worse. This wasn't supposed to be this way.

All I wanted was a full-term baby, a chunky, fat baby... at least a baby past 28 weeks when Ellie was born. 25 weeks wasn't even on our radar, we were preparing for the anxiety that was to come the week before 28. This wasn't supposed to be this way.

It's sinking in. I know he's here. And my days are up and down.

Each day I spend with Beckett, I fall more and more in love with him. And he is just perfect. But it's taken some time for me to accept that, because in my mind, this wasn't supposed to be this way. He doesn't look like other babies...he has hardly any fat in his body, he is skin on bones, you can see his veins through his knuckles, you can't see his face because of the CPAP, his skin is shiny, sticky and transparent, his head and nose...still so moldable and distorted from the breathing accessories. I put my hand on his back when we cuddle skin to skin, and hate that I can feel the vibrations from his CPAP in his core. I hate to admit that I am hesitant to share pictures because he just looks oh so weak. Here I am, human, his mom, making excuses for one of God's most beautiful creations. It's hard because to me, it wasn't supposed to be this way.

But God has shown me that Beckett is much more than what I "thought" was supposed to be this way. He cries to let me know that his lungs are still working. He wraps his fingers around my pinky to let me know that he can feel my touch. His heart rate calms down when we snuggle skin to skin. I can feel him more on my chest now, and I can feel every move. I love his butt chin that is just like his daddy's. I love his dark hair, and wonder if it will stay dark. I love the way he peeks his eyes open to me when I talk to him through his Isolette (he did this a lot for me today). I love the way he curls up his feet under his bum, and it fits ever so perfectly in the palm of my hand when I hold him on my chest.

I love you Beckett Gramkow. You are supposed to be our miracle. And I'm supposed to share Your Story. You are the most handsome 2 pounder I've ever laid my eyes on. We are blessed to get to see you develop and grow on the outside.

 Isn't he just beautiful?


...My friend, TJ, gave me the devotional, Jesus Calling: Enjoying Peace in His Presence, and I wanted to share, as this really hit home with me."When many things seem to be going wrong, trust Me. When your life feels increasingly out of control, thank Me. These are supernatural responses, and they can lift you above your circumstances. if you do what comes naturally in the face of difficulties, you may fall prey to negativism. even a few complaints can set you on a path that is a downward spiral, by darkening your perspective and mind-set. With this attitude controlling you, complaints flow more and more readily from your mouth. Each one moves you steadily down the slippery spiral. The lower you go, the faster you slide; but it is still possible to apply brakes. Cry out to Me in My Name! Affirm your trust in Me, regardless of how you feel. Thank Me for everything, though this seems unnatural--even irrational. Gradually you will begin to ascend, recovering your lost ground. When you are back on ground level, you can face your circumstances from a humble perspective. If you choose supernatural responses this time--trusting and thanking Me--you will experience my unfathomable Peace."...

Quick Saturday Update

So blessed by everyone's generosity and prayers throughout this journey. Beckett's feedings are up to 22 mls, but they recently have found some light green in his residuals :( The only other change, besides his normal As and Bs, was they turned down his isolette to 50 percent humidity. Yay! His skin is getting more mature. Got to hold him for an hour today, and see his handsome face today as they changed out his CPAP gear. He did lose 10 grams tonight, so he's back down to 2 lbs. 5.6 oz. Oh, and good work K-State Wildcats! Beckett and I were cheering from the NICU!

Blue Boy

This is hard. I remember it with Ellie, but it doesn't mean I liked it. Well, I knew the time would come. And it's just one of those things growing up as a preemie. Turning blue. Last night, Ben and I got to go to the NICU together, and Ben was holding Beckett skin to skin. He was having a hard time getting settled on daddy's chest, and wasn't doing a very good job of keeping his mouth closed, so all the Oxygen could go where it was supposed to. His oxygen saturation started dropping to it's normal low 80s, and following was his heart rate drop (this is what we call the As and Bs, remember?) But then, he kept desatting...and hanging out around 64 for WHAT SEEMED LIKE FOREVER! The nurse was right by, and we were waiting to see if Beckett would start remembering that he needed to take a breath. And then we saw him turning blue. I mentioned it to the nurse, and she's like, yep, you're right, he's turning blue. She stimulated him a little (rubbed his back) and finally his sats came back up. Luckily we didn't have to flick his feet or vigorously stimulate him....I HATE it when they have to do that. The nurse gave Beckett another chance to stay cuddling with daddy, and he finally settled it. Daddy and Beckett got to cuddle for an hour, while mommy put up some more decorations in his room, and updated his sticker calendar. The time went too fast. Oh, how I wish we could just stay there all the time, like we did with Ellie.

This is hard. This time is harder. We now have two blessings, and have to split time. They both need us. This is hard. And as you can see, I can't even keep the blog updated as much as I'd like because we haven't quite figured it out yet. Did I mention this is hard? Seems like the weekend is worse because I don't have my "time with Beckett" as I do when Ellie goes to preschool from 9 to 2:30. I was doing better at it before, being ok with being there less, but the mommy guilt is sure kicking in this morning. Please pray for balance for us. Please pray for peace for both Ben and I as we split our time. Please pray to protect our marriage. Pray that we intentionally take time out for each other, even when we are exhausted at the end of the day.

Yesterday, Mr.Beckett's PICC line got removed! So he is getting all the nutrition he needs through his feeding, which was bumped up yesterday to 20 mls! Crazy, that seems like SO MUCH! But he's doing great! He gained a little last night, so he is now 2 lbs. 6.1 oz. The nurse also told me that he hadn't had any low, low oxygen saturations/episodes since that bad blue one...so that's good. The majority have been self-resolving. He still is having lots of air in his tummy...so maybe you could pray specifically for that? His poor tummy always looks distended because that CPAP is filling it up with so much air. :( Dr. Grubbs is gone for the weekend, and the back up doctor hadn't been around to write orders when I called this morning.

Ellie and I are getting ready to head out to meet up with daddy (who went to the church work day) at Ellie's preschool Fall Festival. Should be fun to enjoy outside for a bit, and then I'll head to the hospital after that.

However, I just checked the mail, and am SO STOAKED because Beckett got his first two airplanes! I can't wait to read them to him this afternoon! My heart is happy. Thanks for sending them Teri and Joey! Made my day, and such good reminders of God's provision in Beckett's little life.

Have a blessed day!
Love, Team Gramkow

Chunky Monkey

Ok, well not exactly, but he did gain a whopping 92 grams yesterday! Wahoo! Putting on the ounces...way to go, Beckett! Happy 27 weeks gestation, 2 week birthday to my 2 lb. 5.8 oz. Chunky monkey! He totally deserves a shiny Cars sticker on his calendar for this!

Our Sweet B

Our Sweet B...look at his ears..so perfectly formed! Ellie's weren't this developed.

Mommy and Daddy telling Ellie that she has a new Baby Brother who has to stay at the hospital.

Beckett's Isolette...they are already decorating for October Holidays!

Beckett's diaper...just for a little perspective. This is a preemie outfit, and note: this diaper is too big still.

The 2 BTGs :)

Mommy taking Beckett's temperature. He cries when I do this :(

Mommy and Aunt Wendy...miss her already!

And this one just makes me laugh...Our Sweet E!

16 mls!

Big Boy! He is eating so well that his feedings are still increasing! And by 4 pm today, all of his TPN will be out! They will run clear liquids for a couple days, and then take the line out once he has reached full feeds, maybe by the weekend! So this means all his nutrition will just come from the milk and prolacta. Dr.Grubbs will start vitamins next week, and also said the PICC line would come out once the TPN is done (to decrease risk of infection)! He is now doing pretty great eating 16 mls. And funny thing about Beckett, the nurse and I were noticing both yesterday and today that he deasts right before he needs to eat! Maybe he will be our good eater!!! (Unlike Ellie for those of you who remember!)

Igot to hold him, kangaroo care, again today during his 11 am feeding, and we both LOVED it! His heart rate went down almost immediately when I held him today...he thinks its pretty comfy. His heart rate last night and today has been hanging out in the 160s and 170s, and Dr.Grubbs said he thought it was sensitivity to caffiene. They lowered the dose back down to 5, and his heart rate improved over some time. Just so thankful that its back down...

Last night he didn't lose or gain weight, so still the same! 2 lbs. 2.9 oz. His oxygen and As and Bs have been the same.

So thankful for another good day. It just put me in a better mood! Although after picking Ellie up after preschool, Ben had to watch Ellie cause I couldn't keep my eyes open, I was so tired. I got a 2 hour nap, and feel like a million bucks! Ellie however, has been not so much in a great mood...very clingy and whiny. Ben made us supper quick, and now is headed to the hospital to see Beckett quick before the unit closes at 6. We were hoping to go to the March of Dimes Parent Support activity tonight, but Ellie has a bit of a runny nose, so we obviously aren't. Hopefully we can go next Tuesday night, and meet some other parents who were chosen for this NICU journey as well.

Project Airplane

So thankful to God for a GOOD DAY for our Sweet Beckett. He tolerated his feeds all day, even with the prolacta...AND he tolerated an hour long cuddle time with his Sweet Daddy. Ben worked from home today, so I know he was looking forward to holding Beckett tonight.

Decorating Beckett's room hasn't happened as fast as it did for Ellie, but I'm getting there! Maybe new normal day #2 it will happen. However, I had an idea, and need your help. Thank you so much faithful followers of this blog who care about us, love us and are supporting us through this long journey until we get to bring Beckett home. (Which will more than likely be around his due date: which is January 6). It will be a long few months, but we know our God has big plans for this boy...and Team Gramkow.



PROJECT AIRPLANE
Would you consider printing out a picture of an airplane, maybe half sheet or smaller, coloring it, having your kids color it, and putting a message to Beckett on it? It could be a prayer, scripture, message, word of encouragement, anything really...and send it to us to put up in his room. I think it'd be really neat to have a wall of airplanes with messages that we can read to him every day. Can you send them to our house?
Beckett Gramkow
6612 Trail Lake Drive 
Fort Worth, TX 76133


Oh, and today I got to sneak a peak at Beckett's hair when the nurse was changing out his CPAP hat. Look at all that dark hair! His poor head is so long and mishapen, but that will correct as he gets older. And his eyes are all scrunched up because it's too bright mom! But he's still my perfect Beckett! We looked back at pictures, and Ellie's hair was dark like that too...so we shall see if Beckett's turns blonde like big sis!

Therapy Day

What a good day. Day 1 of our new normal. Or at least our attempt. Ellie went to preschool from 9 to 2:30, Dad worked from home, and mama went to hang out with Beckett at the hospital.

It has been a good day. Beckett has tolerated 13 mls of feedings with little to no residuals. His heart rate is back down. Apparently last night they got his temp down by adjusting his isolette heat and humidity, but then he got a little too cold, so they had to heat him back up.

At 2pm today, they started adding fortifier to the breastmilk to add more calories. The standard calorie count for breast milk is 20, and the prolacta, which is a human milk derivative, will increase his calorie intake to 26. They use the prolacta now in place of the formula like neosure, before 34 weeks I believe. The powder based formulas are derived from cows milk, and the research has shown that limiting exposure to cow protein until after 34 weeks lowers the risk of NEC. So we will see how he reacts to the prolacta. Hopefully well so he can get some meat on his bones!

The occupational therapist actually came by today, and did a little session with Beckett. She is very pleased by how he is doing. He tolerates more stimulation than most 25 weekers. And of course most of the language was coming back. Watching for his cues to align midline. Placing and hold with gentle pressure on his bum and head, no stroaking or rubbing, watching for over stimulating signs such as sneezing,yawning or the classic talk to the hand pose. She was impressed that he kept his oxygen saturations up during his therapy session. She also talked about making sure he gets the lowest stimulation possible, with the isolette cover on, talking with quiet voices, etc. She actually did his initial assessment last week. She said she would come twice a week, and only when he is having a good day!

Beckett is now above his birth weight! He weighs 2 lbs. 2.9 oz. We will take it!

Well, I am tired, so it sounds like naptime for this mama.