Assessing the Assessment

Amid all the stress of the transfusion Ellie still managed to gain a little weight today. Today she came in at 3 lbs 8 oz (1580 g) so she gained 10 grams. Her blood sugar measured normal and she has not had a whole lot of desats. She did have two while I was holding her just now, but the rest of the time she was breathing fine. When I started holding her she was as awake as can be and when I was done she was as asleep as can be. She didn't have a stool in her 8 o'clock diaper change, maybe that's why she gained 10 g. So I asked if she would begin having fewer stools because she's not getting mom's milk. The nurse replied that tomorrow should be when she doesn't have many stools because her bowels should still be filled from yesterday. So it seems that she may have some stools over the night and lose some weight by tomorrow's feeding. Hopefully the day after that she will resume gaining weight like a champ. Well, my little girl is squirming and starting to cry on and off so I'm afraid she needs me more than the blog.

Have You Ever ... ?

Ellie's blood transfusion is complete. Mandy pointed out that for the rest of her life Ellie will have to answer yes on all of those medical and insurance forms that ask if she's ever had a blood transfusion. But in the meantime she has suffered no ill effects from it and looks noticeably more pink. (Well, it is noticeable to someone who spends as much time looking at her as her mother and I do.) They gave her 24 mL of blood over 3 hours and she slept through most or all of it. Right now she is moving around some, but so far she doesn't seem to notice that she hasn't been fed since 8 am. We expect she will be getting fussy any minute now. She is now getting some basic IV fluids: sugar and a few salts (electrolytes). She also got her dose of caffeine. One of us will still get to hold her sometime today, but before then mom is taking a nap. Hopefully dad will be able to sneak a nap in somewhere too.

Blood Transfusion Today - Please Start Praying

The morning started out great. I called at 4:30 a.m. and little Ellie tolerated her feedings over the night: no spitting up, no residuals, and regular stools. She had around 17 desats for the night. Night nurse, Elizabeth said that she was getting ready to draw her bloodwork. Ben and I stayed with Ellie pretty late last night, so of course, that makes us sleep in in the morning. I was in the kitchen making my peanut butter toast when I heard the phone ring at Ronnie's. The house manager, Stephanie, said it was for me. Ellen was on the phone and my heart just dropped. She started to tell me about her bloodwork results and that they felt a transfusion would be best for our little Ellie. Her Hemoglobin was 7 and Hematocrit was 19.7 (if she would have had a 25, then transfusion wouldn't have been needed). They also did a retic count (not sure how to spell that) which allows us to see how well Ellie is making red blood cells. That lab came in at 5.8. (A 9 wouldn't have indicated a need for transfusion). So Ellen said that she was on the low side, slightly borderline, but the team of Dr.s decided that for Ellie at this time, it was best for her long term if they intervened with a blood transfusion today. They will start the blood transfusion after 11 a.m. and after that they will start IV fluids for her through a temporary IV (she didn't have to have the PICC put back in) . She will get 24 mL of blood (15 mL/kg) and the transfusion should take a total of 3 hours. Ellen also reminded me that they have a very specific donor pool that gives blood to preemies and it's screened to the max. (Not sure if I mentioned this before, but even if you've had chickenpox, you wouldn't be eligible). There is a risk of infection with this procedure - symptoms of breaking out with a fever or rash. Ellen said she's been here 20 years and not seen a reaction yet, but it's still a risk. Ellen also explained to me that research has indicated that it's better for her to not have any feedings the day of the transfusion. So she said Ellie will be a bit fussy today because she'll want those full feedings that she has done so well with previously, but she won't get food until 24 hours after the transfusion is complete. Side note: I was just telling Ben last night how it's been harder now...she cries more...and I've just been getting more frustrated lately because I just have to watch her cry in the isolette and can't pick her up to console her. Today's going to be a rough day Please pray for strength for us as we are by her side today. Also pray that Ellie feels the comfort of God in her empty tummy. Help us to fully trust God knows what He's doing today. I'm having feelings of "this isn't fair...Ellie shouldn't have to go through this, etc." and I do...I need for you guys to pray for a peace of mind and a comfort for my thoughts. Oh, this is so hard...Lord, please dry my tears and pick up my heart... She will have her IVs all day and will resume her full feedings tomorrow. They will also add some vitamins to her diet, which will also help her with the anemia. Ellen said that the transfusion and vitamin combo - the increase in red blood cells will help with her bradies and apnea. Tomorrow Ellen said too that she will maybe take her off her nasal cannula. As in any other day though...one day at a time, we'll see how today turns out. Thank you for praying. We thank God for all for all of you thinking and praying for our little 3 pounder. Until next time... Love, Team Gramkow

I Don't Wanna Weight

Ellie's weight tonight was still 3 lbs 7 oz, but 1570 grams. This means she gained 20 grams. That's not bad. If she gains 20 grams every day she'll be 5 lbs by about the first of November. That would be great, we can't wait until she gets to 5 lbs! Daddy would love it if she made it to 5 lbs before we take her home. If that doesn't happen, that's okay too. She's also been feeding well and breathing well. She hasn't had anything changed since yesterday, but she's done well. She also has her tests concerning Anemia, H&H, and a couple of other labs tomorrow. Please pray that she's not Anemic. Also pray that she continues to gain weight. Please pray for her bowels too. Nurse Ralph thought he saw a bowel loop which could be an indication of NEC, a potentially fatal intestinal disorder. When he brought Dr. Navarro over to look at it, it was gone. This probably means it was nothing. We like to pray about things when we have to use words like probably.

The Up and Up

Well things are looking up for our daughter. She only had 15 desats (self-resolved) over the night and no bradys. Again, the nurses say that desats are less serious than bradys. She's also tolerated most of her feedings well. She did spit up sometime this morning. She had more spit up on her outfit than we have seen from her in her entire life. Ralph, the same nurse we had yesterday, said she was also a little cold this morning and he guessed that the spit up is what made her cold. Oh, sad she just spit up again. (I'm writing this during her 11 o'clock feeding.) We were hoping to hold her early today and he said that spitting up wouldn't affect holding unless it made her cold. So far they haven't written orders for Ellie today. But Ellen isn't working and the doctor on call is Dr. Navarro. We've heard that Dr. Navarro likes to push the babies to improve. So I wouldn't be surprised if they up her feedings by a couple mL and take her off of the high flow nasal cannula.

Bending News

Okay, this is not exactly breaking news because it happened yesterday. As someone pointed out you can see in the most recent pictures that Ellie no longer has a feeding tube in her mouth. The feeding tubes get changed every week to lower the risk of infection. Ellie's O.G. tube was due to be changed and the only reason it was in her mouth is because of the trouble they had been having keeping her nasal cannula prongs in her nose. Well lately she hasn't had many problems keeping the prongs in her nose so when they changed out her feeding tube they put the new one in her nose. The hospital staff prefers them to run through the nose instead of the mouth. Apparently it's less bothersome for the baby. Personally I don't like the idea of a tube entering any orifice so it's hard for me to decide which of the two I would prefer. So if you click on the thumb sucking pic you'll see the full-sized picture. In the full-sized picture Ellie is larger than life (literally) and you can see the feeding tube running right by the breathing tube. The feeding tube has numbers so they can measure ... something. This next bit actually is breaking news. Meanwhile Ellie dropped 10 grams today, putting her at 3 lbs 7 oz and 1550 g. Sad but not tragic. It seems that every day I try to get her to really suck on her pacifier she ends up dropping some weight. But she did just have a big gain and maybe she'll gain it back tomorrow. I guess she figured a two ounce gain was good enough for two days. I'm sure with the 31 mL fortified feedings she'll be packing on the grams again in no time. Please pray for mom and dad as we try to establish more of a routine and balance school and family ... and sleep. It is difficult to tear ourselves away from our little girl, but if we don't then we end up shorting ourselves on sleep. Of course it helps that I have the good fortune of hanging out with two lovely Gramkow girls but it is no substitute for rest.

Oh the Joy

Today I kept trying to take a nap and I kept having to get up for various reasons. A little before 5 o'clock I had finally moved the comfy chair over to the other corner so I could stretch out and take a nap. Then our nurse came in and I realized it was about time for Ellie's feeding, so the nurse told us we could start taking her temperature and changing her diaper. I looked at Mandy hopefully and she said she could take care of it, but she needed to go pump at five. I realized she wouldn't really have time to change her diaper and taker her temp before five. And even though it was very nice of her to offer, it would have probably been pretty putzy of me to just nap while my wife and the nurse took care of Ellie. So I just sighed and said "It just doesn't look like it's working out for me to take a nap." In the sweetest voice she could muster Mandy said "Welcome to parenthood." We had a pretty good laugh over that one.

Thumbs Up ... And In

This morning's report from the night nurse was good. Her color is still a pale pink, but closer to pink. Her temperature was too hot over the night, so the nurse took off Ellie's outfit for a while. She didn't have any residuals and she had about 20 self-resolved desats. But the big news was that the nurse saw Ellie sucking her thumb! And she grabbed our camera and snapped a couple pictures.

Today her feedings are up to 31 mL and her nasal cannula is down to 1 liter. Our nurse today is Ralph and he said he thought they might continue weaning her off of breathing support in the next couple days if she continues to do well. Ralph also said she's a feeder-grower. In other words she's stable and she just needs to eat and grow. The term feeder-grower sure does remind Mandy of the farm however! :) Same principle I suppose! Also we thought you'd like to see a picture of her propped up. Nurse Korrie is holding her up for her glamor shot! She's so precious.

She Never Ceases To Amaze

We're always excited for the 8 o'clock assessment, partially because that's when Ellie is weighed everyday. On Saturdays it's a double bonus because the nurse measures her length. Well tonight's assessment did not disappoint. (drum roll please) Ellie gained 70 grams! That's over two full ounces! So now she has smashed through the 3 lb 5 oz barrier that has daunted her for so long. Well okay, she's only been at 3 lb 5 oz for three days, but that's a long time in Ellie years! I am proud to announce that she now weighs in at a good solid 3 lbs 7 oz (1560 g). She has also grown half an inch in the last week, putting her at a towering 16 1/4". That's twice as much as the 1/4" she had grown since birth! Rest assured she is not in league with Barry Bonds or Mark McGuire, her growth is all natural from mom's milk. Well okay, they did add some "fortifier" to her food. And they didn't really tell us exactly what was in that stuff. Hmm. Perhaps I should look investigate this matter further. All kidding aside though, we are very proud of our little girl for how well she has been eating and growing. I should probably also mention that her head circumference went from 26.5 to 27.5 cm. Although honestly I don't follow that stat as much. I certainly don't know what my head circumference is, but I guess it means she's growing.

Night and Day

Ellie had an amazing night last night! She had only 10 desats all night and no A/B episodes ... and that was with being on her back all night. So she was doing much better on her back. She was also stooling well during the night. She has tolerated her feedings with no more than 1.5 residuals. She's also not spitting up. She was on her back all night to help round out her head and she did great. She was also waking up for feedings and was sucking on her pacifier hard enough to see it go back and forth and loud enough to hear. When we came in this morning Ellie was cute and smiley. Mom, dad and Aunt Wendy all got to see her smile big and show her teeth ... uh, gums. Meanwhile she started having desats and A/B episodes ... about 5 in a row. Ellen (Ellie's Nurse Practitioner) came in and told us that Ellie was looking a little pale in skin color - so a concern is anemia. They mentioned that some preemies have transfusions, but only when it is critically necessary. She is going to check blood work on Tuesday to further investigate the anemia, but it's far from an emergency. Ellen was going to turn down the O2, but with all of her A/B's this morning she decided to keep it where it was. Ellie, you were so close girl! But that's okay, we still have plenty of time. Ellen also decided to up her feedings to 30 mL. That's a whole ounce! (Okay, actually 28.3 mL is an ounce, but the hospital seems to just round it up to 30 mL.) If she tolerates two feedings at 30 mL they will further fortify mom's milk to 24 calories. We have our next care conference on Thursday after her labs come back. Please pray that Ellie will be able to produce her own red blood cells and won't need a blood tranfusion. Also continue to pray for mom and dad as we work our way through Ellie's ups and downs.

Ronnie's Tupperware Wish List

This post is for those who want to help support the Ronald McDonald House where Ben and I have had the blessing to stay during the past few weeks and will continue to stay at in the future until we bring our Little Ellie home. Here is a link to the wish list of Tupperware items that the Ronald McDonald House of Topeka (aka Ronnie's) would like to have. It shows a list of the items they want as well as an "X" mark beside the items that have already been purchased. Please email me at my Gmail address (mandysue@gmail.com) if you would like to purchase something for Ronnie's from the list. I've figured the totals and will actually need for people to send me a check (written out to me) for the amount. I will then place the large order and will have it all shipped to me at Ronnie's at once. Sorry for the inconvenience. If you want to pay by credit card, by all means, you can order through the online party - and then just change the shipping address to Ronnie's. There is just no way to "split" where the TW goes as far as shipping is concerned. I sure hope this makes sense...if not, please let me know! Again, the address at Ronnie's is listed on the left side navigation of this blog. Thanks again for helping Ronnie's out...they sure do appreciate it...and we Gramkows do too!

Let Me Count The Ways

Sorry that we haven't gotten anything posted until now, it has been a busy day for the Gramkows. No worries though, Ellie has been very stable. When I held her today she didn't have any bradies or desats and she tolerated her feedings well. As you can see she is still very cute. She looks absolutely stunning in her new outfits. I'm very proud of how well she's been breathing and eating today. (although she did drop 10 grams to put her at 1490 g ... still 3 lbs 5 oz). I'm also proud of how well she is sucking on her pacifier. During her 5 o'clock and 8 o'clock feedings she was sucking on her pacy so hard that you could hear her sucking sounds and see that pacy moving in and out. Good job girl! Babies don't usually start bottle feeding before 34 weeks and the nurses won't even consider bottle feeding before 32 weeks. But Miss Ellie is not even at 31 weeks and she is already figuring out how to suck on her pacifier. Our nurse was also impressed that she was sucking so much on her pacifier without having any breathing problems. Typically it takes babies a while to figure out how to coordinate the suck, swallow and breath mechanisms all together.

The Princess' New Clothes

Many of you are aware that Ellie get cuter and cuter every day. Today has certainly been no exception. As you can see her new outfit is very flattering even though it isn't extremely well fitting. As you might imagine we've also gotten some clothes as gifts: some preemie, some newborn, and some a little bigger. So we've washed the smallest ones and we're going to bring them with us tomorrow. Hopefully we can post some pictures soon of Ellie in her new wardrobe.

Who Needs Grey's When You've Got "Ellie's Anatomy"

Today Ellie gained 10 grams. She is still at 3 lbs 5 oz but now 1500 grams. Also tonight Ellie laid on her back for three hours from her 8 o'clock feeding until 11 o'clock. During this time she only had one brady and no desats! Her residual was 5 mL and she didn't spit up. Our nurse said that not spitting up is actually pretty impressive for being on her back. They still have her PICC line in but aren't giving her any nutrients or fluids through it. They are only leaving it in to make sure she does okay without any IV fluids. If she's still doing fine without it they'll remove her PICC line! Until then they are flushing her PICC line with Heparin every 6 hours. Heparin is a blood thinner that helps prevent clotting where the PICC line is. Also, my interview at Garmin went well. Thanks for all the prayers. The interviewer told me that he will recommend me for another interview. This (third) interview will last a couple hours and will take place at Garmin in Olathe. So needless to say I'm pretty excited about that. Meanwhile I am applying at Cessna as well. The guys at Cessna who I met during my internship this summer are great. It is amazing how they are handling the situation considering that they know I've expressed a lot of interest in working at Garmin. My boss has already contacted one of the lead engineers he knows at Garmin and put in a good word for me. And even though I told Cessna that I was interested in Garmin they said they would still put together an offer for me. They have been a blessing to me ever since I started the Cessna internship.

A Note From Ellie

We thought we'd share the note we got from Ellie this morning: "Dear Mommy and Daddy - I hope you got lots of rest, cuz I'm a growing girl...3 pounds and 5 ounces! My biggest residual tonight was 3.2 ml at 11 pm, after that I didn't have anything. I've been on 22% oxygen most of the night. As of 5 am, I've had 19 desats and only needed to be turned up twice. (I get tired sometimes). I had also dropped my heartrate 3 times. I'm starting to like my pacifier, I sucked on it along during my 11 pm feeding! I can't wait to see you and Daddy, good luck on your job interview! Love, Ellie" Too cute...the nurses here are wonderful. This morning we got here about 8 am, so Ben could see Ellie before he headed to Manhattan. His interview is at 10:15 this morning, so shout out a little prayer if you could. She's had some desats and one brady since I've been here this morning. We did so good yesterday with little to no bradies, but they're back today. :( The only orders for this morning are: increasing her feedings up to 28 mls - We are SO close to an ounce! Yippee! and they are discontinuing her IV fluids at her next feeding which is 11 am. If she does well today, then the PICC line will come out tomorrow (they're going to flush it today). Then she'll get to wear some clothes that many of you have gotten her! We are going to wash the preemie ones tonight and bring them in tomorrow! Don't worry, we'll take pictures! Also, please pray for Mandy's school specifics. I'm still waiting on a couple things for being able to complete my classes this semester via distance in Ellie's room! Also, for those of you interested in supporting the Ronald McDonald House - via the Tupperware Online Party - I'm hoping to get the wish list from the house manager, Stephanie today. Her daugher, Dia, was sick the past couple days, so that's why I haven't been able to catch her. So yeah, stay tuned! Blessings to you all!

Hold The Mustard

Ellie continues to tolerate her feedings well and continues to generate plenty of mustard poop. Some of you know how much I dislike mustard. To put it in perspective the mustard poop isn't really any more or less gross to me than actual mustard. She's also making it more difficult for dad to change her diaper. She has lately decided that diaper changes are a good time to poop and pee. Come on Ellie, give your old man a break ... I'm still new at this diaper changing thing. I just wonder if I can barely change a diaper for a 3 lb baby how am I going to do when she gets up to 8, 9, 10 (pounds, not years) and beyond? She is also continuing to gain weight. At her eight o'clock assessment today she weighed 3 lbs 5 oz (1490 g)! Good job Ellie.

Family Photo!

Ellie's still having a good day! Yippee! We thank Jesus for this precious day with our precious little girl. We thought you might enjoy the photo of Team Gramkow! :) Keep praying for us! Prayers for Mommy and Daddy as we take advantage of these good days and get homework done! Also pray for Ben as he has a technical interview with Garmin tomorrow at K-State. Oh happy day! Love, Ben, Mandy and Ellie Gramkow (I still love writing that!)

Info Dump

This morning's update follows the fast and furious approach. Ellie is up to 3lbs 4 oz (1480 g) now! She has had no problems with her feedings over the night. Her residuals were all low (0-3 mL). So they bumped her up to 24 mL every 3 hours delivered by the autosyringe. They also shortened the feeding time by 5 minutes. So the autosyringe delivers her milk in 30 minutes instead of 35 minutes now. She had no bradies and only 8 desats over the night (all self-resolved) and she had a stool in every diaper. But she did have 3 desats during her 8 am feeding. Kent is our nurse again today and he heard an air leak during her feeding. He fixed one of the connections in her breathing tube and she has been breathing better ever since. (Although she has had a couple self resolved desats and a brady or two since we got here this morning.) They lowered her IV rate to 1.9 mL/hour but now she's not getting the vitamins and electrolytes through the IV. She's only getting fluids, no nutrition through her IV. This is the final step before removing her PICC line! Got all that? ... Good job Ellie!

Enriching Her Life

We just called to get an update on her feedings. I believe we said earlier that she was bumped up to 20 mL every 3 hours and if she took the first four feedings at this level then they would begin fortifying mommy's milk. Well we just called to get the update on her 11 pm (fourth) feeding.

It turns out she did tolerate her feeding well (of course she did). So they are going to start fortifying her mommy's milk to 22 calories/ounce with a powder containing vitamins, minerals and ... you know healthy stuff. Oh proteins, that was the other one! So another good job for Ellie. (They're allowed to fortify it up to 24 calories/ounce but I don't know if they'll go that high.)

While we're passing out the attagirls I should also mention that she weighed in at 3 lbs 4 oz (1280 g) tonight. Another great gain for our (less and less every day) little girl. I would say I couldn't be prouder but I bet that little gal will figure out some other way to make me proud over the night. I'm going to bed a happy man.

Tech Spotlight: Isolette

Ellie's current bed is the isolette (commonly referred to as an incubator) pictured here. It monitors the temperature and humidity inside as well as Ellie's temperature. The humidity is set for a target value and keeps it there with the built-in humidifier. This is an example of an open-loop control system because there is no feedback loop. Meanwhile the temperature control system is a closed-loop control system. The nurse chooses the temp they want Ellie's body temp to be. So her body temp is the desired output of the system. But the temp probe on her tells the bed if she's too hot or too cold. This information is used as an input to decide whether to heat up the bed or keep it the same. Since the output is taken back and used as an input it's considered a closed loop system. When the nurse put clothes on Ellie she also changed this setup. She set the bed temperature at a certain value regardless of Ellie's body temp. Thus she converted it from a closed loop system to an open loop system. Nerds like me would say she "opened the loop." (Okay, now I'm off my control systems soap box for awhile.) Ellie's first isolette was the Omnibed, a scaled up model worth fifty large (that's $50k). The Omnibed, pictured here, includes a top that slides up quickly to allow easy access in urgent situations. (Notice the third pedal near the floor.) The only time this feature was needed for Ellie was shortly after her birth. This enabled a team of medical staff to easily access Ellie. Meanwhile the infrared heater in the hood kept Ellie warm even though she wasn't enclosed by radiating heat down upon her. (Basically a fancy heat lamp.) Oh by the way, these beds also raise up and down and can tilt Ellie's sleeping platform so she can be slightly upright for better digestion during feedings. There are portholes through which you can put your arms, or you can take down the entire side to remove Ellie. When you've got the bed open you can press a button to create an air curtain (like when you walk into Dillons) that keeps warm air in the bed separate from the colder room air. The bed also has a built in scale that the nurses use to weigh Ellie every evening. And currently I'm trying to program it to change Ellie's diaper. No luck yet, but if I succeed we might have to get one for home. I think I've left out a few features we don't know about, but this post is long enough anyway. These models both plug into the wall, so they are both different than the very first bed she used. We don't have any pictures of that bed, but it was the one that carried her from the OR where she was born down two floors to the NICU. So what does it all mean? Well for one thing it means that all of us are very blessed to have such technology available to take care of our little Ellie. We thank God daily for blessings like this. It also means that Ellie's first two weeks of life she slept in three beds whose combined value is greater than the house that Mandy and I don't even own yet. (Not that we're looking for a house ... I'm just saying.)

NICU Glossary

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.

Progress Report

The woman in the photo is Ellie Jo Gramkow, daughter of Ben and Mandy Gramkow. You may no recognize her on account of her outfit, which is considerably more cotton-like than her previous outfit. This woman has been keeping the nursing staff very busy as of late. Her feedings were just increased (at 11 am) to 20 mL every 3 hours. If she tolerates these next four feedings the nurses will fortify mommy's milk from about 20 calories per ounce to 22 calories per ounce. Actually the NICU here doesn't have the equipment to measure the caloric content of breast milk, though they do have plans to get this equipment. In the meantime they just assume all the breastmilk has 20 calories per ounce, though I bet Mandy's producing the good stuff. It probably already has 22 calories per ounce if you ask me. Since she's gained so much weight they can start giving her a little more caffeine ... so they will. Her new dose will be 10 mg/kg. Right now that translates to about 14 mg. The added caffeine should help with her breathing. She did have about 30 desats over the night and one A/B episode. This morning she had 8-9 desats for nurse Kent. But everything was self resolved except the A/B. Tomorrow they will change her IV fluids to a clear liquid rather than its current yellowish tint. This will just form a "maintenance" dose to wean Ellie off of her IV. So she should be rid of her PICC line in a couple of days. Man, the cords and tubes are just dropping right off of her. I can't wait until the breathing tubes leave for good. Praise God for a much better day than last night with the nasal cannula drama. You just never know how this little girl is going to greet us in the morning. We are so glad that she is here and we're just trying to learn as much as we can about how to take care of her in preparation for that great day when we get to take her home.

No Turning Back

Today is one of my proudest moments as a father. Ellie has made a huge step forward from which I hope she will never return. Today Ellie is wearing clothes! Since her gestational age is 30 weeks now she is now more capable of regulating her own body temperature. So the bed is no longer responding to her changes in body temperature. They put clothes on her last night and kept the temperature probe on her to see how she did. As I write this nurse Kent is taking off her temp probe. One less cord to drag around! Oh sad, now she's crying. Hang in there Ellie! He only plans to take it off once. Now that I think about it the old temp probe was coming off and they just put a new one on her a day or two ago. So this one's stuck on pretty well. Don't worry, mommy is comforting her and she's better now. AND now Kent is saying her diapers are too small so she's graduating from the extra small preemie (P-XS) diapers to the small preemie (P-S) diapers. Although to my untrained eye the P-S diaper looks the same size as the newborn diapers. There's a huge size difference between the two. Kent is also a big fan of pushing the pacifier during her feedings. (She just started her 11:00 feeding.) And he says she has a good strong suck. Good work girl, you'll be breastfeeding in no time!

Weight Watchers

Yes yes, that is what Ben and I are...weight watchers! And we are watching our little Ellie's weight grow to....drum roll please...3 lbs. 2 oz. That's right, she gained 20 grams so is up to 1420 total grams for you metrics out there. Oh, I can't remember if I posted before or not - but they lowered her High Flow to 1.5 Liters nasal cannula. Now, she didn't like this last time we went to 1.5, so hopefully this run is better. Guess what...we met another NICU mom - please pray for another little friend of Ellie's, named Nathaniel. My, my she's social these days and already has lots of friends her size :) Daddy's turn to kangaroo hold tonight - she's had more than a few episodes during it though... :( Praying our little Ellie gets a good night's rest and a good report for Mommy and Daddy tomorrow morning.

Better Day

Well, Miss Ellie is doing better and it's 3:15 p.m. Ellen (her nurse practitioner) came in and saw Ellie today and said she's doing great for her age...again for her age. She reminded me that this is how it's going to be and you'll have ups and downs...and that might be one of the hardest things we'll have to encounter...it'll be real slow...and hard...she told Ellie that she needed to be good today so Mom can stop tearing. Ellen moved her feedings up to 17 mLs every three hours. She's tolerated them so far and she said she wasn't concerned about the NG tube length because she's done so well with her feedings. They are also discontinuing her lipids today. They did take off the velcro cpap looking thing and went back to old fashioned taping the nasal cannula - but now it's real close to her eyes..her cheeks are all red, Ellen said it'll go away. I think that was the hardest thing for me - seeing her get the tape pulled off multiple times, and her cry is stronger. She's had more desats rather than bradies lately, and this is better than both - so at least her heartrate is keeping constant even when she's having breathing spells. She just made the sweetest baby noise and both mom and dad jumped to her side. She stretched and smiled...I think she wanted to see if we were still there. :) Continued prayers for mommy and daddy - we were planning on getting homework done, today started out rough, so we're trying to play catch up on both emotional and physical rest.

Rough night for Ellie

Well, this morning when I called for the update, the news wasn't as good as I hoped. Ellie had a busy, rough night. I figured the set-back was due, since she had so many good days in a row. So in the last post, I mentioned how she had troubles keeping her nasal cannula in. Well at the 11 p.m. feeding last night they decided to put on the nasal cpap (set up) which has a velcro piece on her head and will work better and allow her to move a little bit and still get the 2 L of O2 (room air) that she needs. With all this in her nose now, they also had to move her feeding tube back to her mouth (so now it's back to an OG tube, not NG tube). Nurse Mandie said that Ellie got really stressed out while they were messing with her and had a big desat (down in the teens) so they had to get out the bag and mask. She did come back after that, praise Jesus. From 7 pm until 4 am she had 29 desats/bradies. A majority were self-resolving. She had 4 that needed intervention - one while we were still there last night, the one big desat, one at 3 am (where she needed extra O2), and one at 5:30 am where she also needed extra O2. As far as feedings - at her 11 pm feeding (when they changed her tubing) she said that the tube measured 15.5 cm length from her nose to her stomach, but with her growth it should now be 15 cm. So checking her residual at the 11 pm feeding - she had 25 mLs of air (this is alot for a small stomach) - which Mandie said was in part that she was crying/upset from them adjusting everything - and 6 mLs of undigested milk. Nurse Mandie also said this could have been building up all day (since the tubing measurment was off) and she could have been decieving us with her feedings up to this point. :( She called the Dr. and they decided to subtract the 6mLs - so then she only got 9 mLs of fresh mommy's milk. Then at 2 a.m. she only had 1 mL of residual (which is good and means that she actually did catch up from that 1/2 cm being off); Then at 6 am she only had 1 mL of residual, but this time it was only mucus and digestive enzymes. Obviously that was a hard report to hear, but at least I have an idea before I see her this morning. I know they did what they had to do - but of course, it just breaks my heart. Please pray for little Ellie today - please pray for a restful day for her. Please also pray for Mommy's emotions (these set backs are hard). Lord, Please be the comfort that Ellie needs right now. Please cradle her in your arms and give her a restful day. We thank and praise you for this precious little girl and believe that you have the power to give her what she needs to get through this day. Be with her growing tummy and Lord, help her further develop her brain to remember to breathe. Lord, I thank you for every person praying for Ellie today. May they be blessed in ways they have never experienced before. Thank you for the nurses and doctors at the NICU who are also watching out for our little Ellie. Be my strength Jesus, I need you today too. Amen. We went to the Topeka Bible Church again yesterday, and the title of the sermon was "Moving with God on the Detours of Life," based from the life of Paul in Acts 25-26. The road rules he mentioned were: 1. Look down the road and plan your life. Be intentional. 2. Learn that God's plan for your life includes detours. (I think this counts). I think it's a hard lesson to learn that our God is so soverign, that he never does something accidental. He posed the question to us: Do you trust God on the detour? 3. Let people know that you trust God on the detour. 4. God uses you in amazing ways when you share Him on the detour. Whoa, was that for us or what? Many times I wonder why he chose Team Gramkow to go through this detour...I guess I just have to trust that He knows what He's doing and that He trusts Ben and I to be able to handle it. Boy, that's a hard lesson...I'm trying...Oh, Lord, how I'm trying. Pray for us today. We can do it through HIS strength. Pray that my thoughts would c0nstantly be filled with hope and not despair today.

prayers for those cheekers

So Ellie, aka our wiggle worm, is having some troubles keeping her nasal cannula in her nose. She likes to turn her head and then those prongs in her nose shift so only one is in her nose. :( Also, this is affecting her desat status. :( The nurses and respiratory therapists have now taken the tape off her cheeks 4 times now to try to rearrange that silly thing. (2 minor readjustments and 2 major readjustments). Mommy doesn't like to hear her cry. SO...if you could..just pray for the healing of those precious cheeks and also for "cannular stasis" (last minute addition from daddy...I don't talk like that...anyone who knows me well, knows I have a limited vocabulary! :)

half-pounder

Our little Ellie weighed in tonight at 3 POUNDS 1 OUNCE! She's now a half-pound more than when she was born. We couldn't believe it! The nurse actually weighed her like 5 times because we weren't sure if it was accurate. So that is now 1400 grams, for those of you keeping track in metric. We were so shocked too because she had some good poops. (although, I'm sad Ben compared them to dip-n-dots...I love dip-n-dots!) So in case you all were wondering, she's still really cute today. Mom and Dad tried to go out on a date tonight (since we already had a babysitter lined up)...well, no trying - we actually did go out to Olive Garden - turns out you just can't really stop thinking about Ellie, not that you should. Anyways, we couldn't be gone that long, so we're back visiting and then we're heading back to Ronnie's to watch a movie (since this is what we loved to do before little Ellie came along). Please continue to pray for our little Ellie, it will be interesting to see how things change with her great progress over the weekend - maybe we're on our way to getting rid of the PICC line! We'll just have to wait and see. We have our second care conference this week, so that will be good to of course learn more about our little girl! Also, please pray for Ben and I as we transition back into being students - although we're going to be working from a distance. We found the public library is across the street from the hospital, so we're planning on going and then rewarding ourselves with seeing Ellie! Again - just a reminder to scan the Tupperware catalogs online if you're interested in supporting the Ronald McDonald House that we're staying at - I'm doing an online party and the money and host credit is going toward re-stocking their kitchen! Thanks in advance. (See earlier post on how to access the TW online party). Blessings to you this wonderful fall day. We're so thankful for you all. Love, Daddy Ben, Mommy Mandy and Baby Ellie

Bowel Bulletin

Uh oh, she's already blowing out diapers ... and she's wearing Pampers Swaddlers! Those are supposed to be the best kind! We got another note from Ellie this morning (via night nurse Mandie) saying that she had such a big stool she had to get new bedding. Our day nurse Janice informed us today that Ellie had another big stool for her. When we got here this morning Ellie's diaper was creeping over to the side (because she was doing this weird side arch thing). So when I straightened it I did a quick check and sure enough she was working hard on this one too. She has this odd yellowish brown beady poop that looks like Dip-n-Dots gone horribly wrong. Our little girl has been eating so well that the doctor bumped up her feeding to 15 mL every 3 hours. Since she's eating more milk they are decreasing her IV fluids. For her 11 am feeding she was at 12 mL milk and 3.8 mL/hour IV fluids (vitamins and electrolytes) and 0.7 mL/hour. Yesterday she was switched from 10 mL to 12 mL of milk and was getting 0.8 mL of lipids per hour. When they change the IV at 4 pm they'll taker her IV fluids down to 2.9 mL/hour and leave her lipids at 0.7 mL/hour. I hope that was confusing enough, I should make a graph or something. Meanwhile her mom must be getting maternal cues about Ellie's increased feedings because Mandy is producing milk at an all time high. She just got a record 310 mL in one sitting! She says the Holstein breed would be proud. Last week she was a Jersey, this week a Holstein. Good work hon! Mommy is looking forward to holding her little girl at one o'clock. The nurses have said that kangaroo holds tend to help the mom produce more milk. So the 310 mL record may not even hold through the next pumping!

No Ellie Left Behind

The results are in for Ellie's assessment. She has had no residual (not even air) at her last couple feedings and she has had a stool in her last couple diapers. Her temperature has been normal all day. Her height (40 cm / 15.75") measured the same as last week and her blood pressure measured normal (76/42). She also 50 breaths/min and 164 heartbeats/min. And after listening to her breath the nurse didn't notice any heart murmur. This could mean the heart murmur has gone away. (We'll ask Ellen on Monday.) Her heart murmur being gone could mean that her PDA vessel has shrunk/closed/disappeared/isnotaproblemanymore. Pray for all three Gramkows to get some good rest (especially mommy). And praise God for a healthy baby girl!

We are SO proud!

The numbers are in and Little Ellie is gaining weight! We are SO proud...she's up to 2 lbs. 15 oz. (1330 grams) so she gained an OUNCE since last night! Her feedings of 12 mLs are going well. Daddy is holding Ellie right now (kangaroo care) and it's super cute seeing him hold her with her bow in her hair and all! Also, for those of you who are interested in the Tupperware - Support Ronald McDonald House in Topeka initiative and don't necessarily want to buy anything for yourself, but still want to help - I have had some people request to just buy things to donate. I'm going to talk to the house manager tomorrow to go through the catalog to pick out items and hopefully create a wish list from there. Then I'll probably just place the order so it can be shipped directly here. So yeah, if you're interested in that option, then please e-mail me at mandysue@gmail.com. If you are interested in ordering through the online party - then please see the posting from earlier as to how to do that! Thanks in advance...I'm really excited about helping them out with stocking their kitchen with Tupperware!

Pretty In Pink

It is well established that our little girl is getting cuter by the minute. A prime example is the photo above. Of course, she was cute yesterday, but today ... even without the bow this would probably be the cutest pic yet. So enjoy! We're also really happy with her today because she has tolerated her feedings so well she has been bumped up to 12 mL every 3 hours. Her only residual today was 0.6 mL. She also had another stool today so it doesn't look like she'll need anymore enemas any time soon.

Soon To Be In Twelve Languages!

(And a podcast) At a recent Ellie's Blog development meeting the board of directors for Ellie's blog began focusing on the paramount importance of Ellie's blog reaching a diverse audience. This is important not in the least because of the variety of languages spoken within the Jardine community. So in order to reach a wider audience Ellie's Blog will soon be available in several languages. Development is currently underway. The current translation assignments are listed below. If you'd like to translate Ellie's Blog into your own native tongue please sign up today! Here are the assignments: Tolu: French, Yoruba, Japanese Shawn: Romanian, Bostonian, Irish Samer: Urdu, Punjabi Pat: German, Latin Wenting: Chinese (Shawn volunteered you)

Support the Ronald McDonald House in Topkea - Tupperware Online Party

Since the arrival of our little Ellie, we have been very blessed to be staying in the Ronald McDonald House in Topeka to be close to the hospital. I also will go inactive as a Tupperware Consultant this month if I don't have sales, so I'm trying a Tupperware online party. I plan on using the money and host credit to donate to the Ronald McDonald House as a small way to give back. They are in need of some reheatable containers and storage containers, modular mates too! The party opened today, September 20 and will close October 4. I have to have sales in by Sept. 26 at midnight to stay an active consultant. Thanks for even considering looking at the catalog. This is the holiday catalog and I think you'll be surprised at what you find- TW has a new line of teas, towels, and the traditional storage containers! There are also some great toys they brought back for the kiddos. No worries...Ellie will have them all to play with (when a little bigger of course!) To shop online, click on the link below: (just make sure that Mandy Gramkow is somewhere on the page (upper right) to make sure that it'll qualify for my party. http://order.tupperware.com/coe/app/home OR go to http://mytupperware.com/mandygramkow to view the online catalog - look at the both the holiday catalog and the monthly flyer (not the fundraising one) http://catalogs.shoplocal.com/Tupperware/index.aspx?pagename=shopmain&storeid=1033893 Also, you can click on the first link order.tupperware.com/coe/app/home and then click on Shop our Product Gallery; then by catalog (along left navigation, scroll down); As you browse the online catalog, click on the items to add them to your "cart." You might have to click on "online party or add to existing online party" to find mine. Please let me know if you have questions; e-mail mandysue@gmail.com

Saturday Early Edition

Well, I called this morning at 5 am to see how little Ellie did over the night. Nurse Mandie said she did really good on digesting her food. She only had residual for her 2 am feeding and that was only 0.6 mL. She also had a small stool at 5 am. Her blood sugar looked good and she had labs this morning at 5 am too to check and see if they need to change any of her IV fluids - TPN. She had 18 dips in her O2 (desats) and the only two times she needed intervention was when we were there (once - holding her, and then one right when we were leaving), otherwise all the rest were self-resolving. Please pray for Ellie's little friend, Liam who went home yesterday from the NICU. Pray for comfort and confidence for mommy Brooke and daddy Jason and sister Ainsley as they care for little Liam. Also, pray for Ellie's other little friend, Tristen who was actually due around the same time as Ellie. He came at 23 weeks though, so his Mom and Dad have been here at Ronnie's and the NICU for awhile. It's been good to connect with some other parents to be support for each other. And..most of us are K-State fans, which of course is an added bonus!

NICU Glossary

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. A&B - Apnea and Bradicardia episode Apnea - a disruption in breathing often consisting of Binky - pacifier (aka sucky) 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) 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. NIC - Neonatal Intensive Care NICU - Neonatal Intensive Care Unit Sucky - pacifier (aka Binky) 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.

Perhaps a Barry Manilow Song Would Be Appropriate

Tonight's nurse is named Mandie. She weighed Ellie at 2 lbs 14 oz, but only 1300 g. So she lost about 15 grams. And she also had 7 mL of residual out of the 10 mL that they fed her. So the doctor decided the nurse should subtract it out and Mandie gave her the residual back and fed her another 3 mL. Mandy was a little upset because we didn't have numbers for the residuals during the day. The day nurse's report said they were within the normal range though. So it sounds like little Ellie did pretty well while her parents were out of town. We did get to hold tonight. Actually only Mandy got to hold her. The nurse was concerned about jostling Ellie around too much since we were holding her at the time of her feeding. So Mandy of course chose the kangaroo hold and enjoyed it very much ... except for the two bradys that Ellie had. Sometimes she's a little rascal, I guess we'd better get used to that. The nurse threatened that if Ellie had another one we'd have to put her back. Apparently Ellie heard because she shaped up after that. Now we're going to hang around until her eleven o'clock feeding. I'm trying to convince Mandy that we need to nap in shifts until then. *Yawn* UPDATE: Ellie had no residual at her eleven o'clock feeding. She digested everything completely. Keep up the good work little girl. She has had a couple bradys, but all self resolved.

Friday Fun Day

So sorry it's taken us so long to get an update about our little Ellie. Early this morning we were all getting on the road - Grandma Weber went back to Iowa, and Mom and Dad went to Manhattan for her 2 week check up for her C-Section incision. This morning I called around 3:30 a.m. and Ellie last night had 10-15 desats and 2 bradies that needed O2. She did well on tolerating her feedings and POOPED ON HER OWN! Wahoo! We were so excited about this! Obviously her Dr was too because they discontinued her daily enemas. She had two "smears" I think is what they called it today...add that one to the glossary Daddy! They also increased her feedings to 10 mLs every three hours (that's 1/3 of an ounce!) and has been tolerating them all day as well. She has been hanging out mostly on her tummy today but still had about 17 bradies today - but only 4 of them registered to call the nurse (i.e. most of them were very short). All of them today were self-resolved. Mom had a hard time going back to their Skybox Apartment in Jardine - just felt so weird to be there without Ellie. All I could think about is how our apt is SO not ready and babyproofed yet! But it was good to grab some more clothes, run the dishwasher, clean out the fridge...as quick as possible though of course because we sure wanted to get back to our little Ellie. Well, we've unloaded our stuff at Ronnie's, and we're heading back to the hospital - excited for tonight's weigh in and hopefully we get to hold her again tonight. *Oh, by the way, we did get to hold her last night too - Mom got some precious kangaroo hold and Dad got to conventional hold. It was a bit emotional since we've missed out on the last couple nights due to her untolerated feedings and bradies. So precious to feel her breathe on my chest and move the tiniest fingers I've ever seen... Until next time - we'll see what she weighs in tonight at...heard she's been sleeping most of the day and hopefully not burning many calories! She is SO close to three pounds! So yeah, we'll see. Blessing and thanks for your faithful prayers, Team Gramkow

And The Numbers Are In

Okay, she really is getting to be a big girl. She her new weight is 2 lbs 14.4 oz (1315 g)! The nurse weighed her three times just to make sure and she actually weighed a little higher the other two times. She also had her 8 o'clock feeding and had only 0.6 mL of residual. Eight o'clock sounded wrong for a minute, but I guess I still haven't gotten used to her eating every three hours now. We also just got a fresh dose of different nurses doing things differently. Our new nurse, Ashley, isn't using the Autosyringe. She said she would use it for 12 - 15 mL or more. Actually Kent, our nurse earlier in the week, said 12 -15 mL as well. Oh well, it's not like it matters. But the Autosyringe does have an alarm that goes off when the fluid is almost gone. So not using the Autosyringe means one less alarm every three hours. By the way she's been having more bradys, two since the 7 pm shift change. Fortunately she's only had one or two tactile ones and the rest have been self resolved. So it's still in the normal range. That may be about all for us today. There won't be any more feedings or anything until eleven o'clock which will be after we leave.

Are we a big girl Now?

The nurse just gave Ellie her two o'clock feeding. She said Ellie didn't have any significant amount of residual or gas in her stomach. Good job Ellie for handling the new 8 mL feeding so well! The nurse also said now that she's 30 weeks (gestational age) her Apnea alarm will be set to trigger after 15 seconds instead of 10 seconds. That means the nurse won't be notified for episodes lasting less than 15 seconds. That's just one more step to being weaned off of breathing support. She has also started smiling now, as you can kind of see in the picture. Of course she's not cooperating with the camera. A sure way to keep her from doing anything cute is to go grab the camera. And also today she spit up for the first time! Why do I find that exciting? The nurses said that normally happens with the increased feedings.

Tech Spotlight: Autosyringe

The aptly named Autosyringe slowly pushes a syringe in order to deliver a measured dose of medicine or nutrients at a steady rate. Ellie is currently using two autosyringes. One delivers her lipids and (as of 11:00 AM today) one delivers her 8 mL of mommy's milk every three hours. (A new syringe has to be loaded every three hours.) From an Electrical Engineering perspective the autosyringe is an interesting control system. A simple version of an autosyringe would make a great class project for some young, budding Electrical Engineering student. For those want to know, here is how the device most likely works. (Translation: this is how I would build one.) A microcontroller could be used to control a stepper motor. As stepper motor is just a type of motor that makes it easy to control the speed of rotation. The stepper motor would drive the arm that pushes in the syringe. For a user interface a keypad (or any collection of buttons) and an lcd display would form the user interface. The nurse would use these to input the amount of fluid in the syringe and the time period over which to deliver it. This information would be sent to the microcontroller which would then calculate the rate at which it would need to drive the stepper motor.

It Does a Body Good

Well, it turns out Ellie didn't have the greatest night last night. She had 10-15 self resolved bradys and didn't take any of her feedings. That is, she had residual with all her feedings (2 - 4 mL). But today she has taken her feedings well. This morning she has had little to no residual. So they bumped her up to 8 mL every three hours. Ellen said this isn't as much of an increase as they would have given her if she had taken her feedings well all night. But it is enough for them to switch from the manual slow pushing of the syringe to the Autosyringe. And that is enough to launch a new series that highlights the technology enabling Ellie to thrive so brilliantly.

Ellie Get Ready to Roll

Mom's having a heart attack, dad's laughing and who knows what the nurse is thinking because Ellie Jo Gramkow just rolled over! She was on her back after her diaper change. She was awake so dad was taking the opportunity to cuddle her. (Head on the hand, place and hold) Then she started arching her back and she had one leg behind her pushing off one side of her snuggly. (The snuggly is the wrap that they lay her inside, it's in most of her pictures.) We were all amazed because she was about to roll over. Then on her next try she did roll over! Wow! If she hadn't rolled onto the other side of the snuggly she would have rolled all the way to her stomach! That deserves a sticker! We've got a little acrobat, two weeks old and she's already rolling over. How long did it take her cousins to roll over? Breaking news: Aunt Wendy took seven months to roll over. Hey, don't feel bad Wen I bet you can roll over with the best of them now. She clearly feels that she's ready to be a big girl now. The extra ounce she put on will help with that. She now weighs 2 lbs 12 oz (1245 g) which is up from 2 lbs 11 oz (1210 g). Oh, and she just lifted and turned her head again. By the time she rolled over she had worked her way most of the way over to one of the arm holes in her isolette. I had to shut it just in case she got mobile again and fell out. Okay, maybe she's not quite to the crawling stage yet. I guess we should give her another week or two for that. I should point out that she did have a couple bradys in the span of all of this. Apparently she was do busy practicing her gymnastics to breath.

Did someone miss her daddy?

Okay maybe it's just coincidence ... but I don't think so: Ellie had two bradys during the day shift and she's had a couple short bradys since the shift change at 7:00. So she's had fewer bradys today when I've been here than she has the last couple of days when I wasn't here. Well sweetie I missed you too and I'm glad Team Gramkow is all back together. Now be a good little girl: eat and breath.

sit-tight day

Ellie did better with her feeding at 6 am. When Grandma and I got here this morning, there was a note from Ellie on our whiteboard. "Yeah - I was able to get all my 6mLs of momma's milk at 0600! Love Ellie" So they didn't change her feedings for today - they're still going to try 6mLs every 3 hours, so no moving up today. Also, it seems like she's doing better with the 2 Liters nasal cannula. She's had 2 bradies since 3 am and some desats. Ellen said this hopefully will be a "sit-tight day." This picture is from yesterday actually...when the nurse was doing her assessment - then Ellie was awake for a while, showing off her beautiful eyes!

Back to 2 Liters

I called early this morning at 3:30 a.m. and they told me that Miss Ellie had a few too many episodes after I left where Nurse Becca gave her some additional O2 (constant). She talked to the Dr. at midnight and decided Ellie needed to go back up to 2 Liters of room air through her nasal cannula. Obviously, little Ellie was telling us she wasn't quite ready to be at 1.5 L. The nurse said Ellie had only 1 brady since they put the 2 L back on. So that's good. Also, she didn't tolerate any of her feedings last night either. So apparently she's not ready to eat every three hours. So the nurse said they would most likely re-evaluate her feeding plan for today. I'm praying for a good stable day today. They say usually with these little ones it's one step forward, and two steps back and that's pretty much how it'll be then next few months. I was also a little frustrated because I slept through my alarm at 6:30 so I didn't get the nurse called again to see how the rest of her night went. Obviously, I was pretty tired. Grandma didn't even wake up either. Interesting how emotional stress just wipes you out physically! Please pray for my attitude as well. I'm getting really tired, annoyed of pumping, sick of the stress. I guess I keep thinking this is going to be over sooner than it really is. I did meet a wonderful family last night at Ronnies who is Ellie's neighbor - two doors down actually. They have a 3 1/2 daughter named Ainsley and then are in the NICU with Liam. They have been here for 6 weeks and rumor had it that maybe they'd get to go home on Friday. Brook (the mom) is a nurse and she actually reminds me a lot of Wendy! Anyways, she shared her story (cause you all know I'm all about finding out everyone's life stories) and it was both comforting to hear, but then also frustrating. She talked about how you'll have set backs with the feedings (when she gets to bottle/nipple feeding), which was a little scary to hear. Praise God that they have nurses here that will of course help. She also said that Liam will most likely go home with an Apnea monitor. They are also K-State fans, so that was fun! Thanks Corey Glaze for the K-State Cookies! We shared them with little Ainsley and she said "that's a wildcat!" right away! Too fun! They too have season tickets, but haven't really made it to many! Ellie and Mommy are excited for Daddy to come back to T-town today! Praise Jesus that he did get all his classes figured out and hopefully will only have to spend mon-wednesdays in Manhattan and can be with us the rest of the time. We also found out that the Public Library is right across from the hospital so we might have to discipline ourselves to do homework for a period of time, and then reward ourselves with going to see Ellie! Good thing we're very familiar with the whole student thing! Also, please pray for Ben's job lead with Garmin. He had a phone screening interview with them (actually in the Hospital Lobby) and that went well, and so they're following up with him hopefully this week for an on-site interview. He's pretty excited about the possibility and I'm pretty excited to maybe already know where we'll may be going after school is done in May. He's also keeping Cessna in the running for job options. He really enjoyed the people he worked with there (during his internship) and so who knows, maybe we'll end up in Wichita. Please pray for discernment as to where we should be. Ok, well, I'll get to an update after I meet with Ellen (NP) hopefully this morning. Gotta now get ready for the day. Keep praying! Thanks for your faithful reading and prayer! Team Gramkow

Goodnight Sweetheart

Tonight seemed to slow down as far as her bradicardias...we'll see how her night is. Her weight tonight was 1210 grams, so up 5 grams, but that still puts her at 2 lbs 11 oz. She went to feedings every three hours, but didn't tolerate her 6 pm feeding. She had 4.5 mL residual so the doctor decided to subtract that from 6 mL. So really she only got 1.5 mL of new milk. I sure hope I did that math right, but I'm too tired to seriously think that hard about it. The greatest thing tonight was that I still got to hold her (kangaroo - skin to skin) for 45 minutes and she didn't have any bradies when I was holding her!!! It was some precious time and she was actually awake most of the time I held her so I got to see those beautiful eyes! We had some good chats, pondering the things in life that I'm supposed to be learning now. She didn't offer much advice, but was a listening ear. I love the fact that I can tell she recognizes mommy's voice.

Still having troubles breathing

Well, today has been a long day. Sad, I just had to look on the computer to see what day it was..I did think it was still Monday. At times I really wish it was...I had a list of things to get done today, and well, that's just not happening anything too quickly. I'm finding that I have a hard time focusing when Ellie's having her episodes. :( Oh, the worrisome mother syndrome! Well, Miss. Ellie has had 15 (I think?) apneas/bradicardia's today - 5 of them required an additional dose of O2. :( So those are considered tactile. She still has a majority of them self-resolving, which is good. Ellen, her nurse practitioner said today that she is "moderately" concerned, and not overly concerned. Miss Ellie is just acting her age and may be tired and recovering from an awesome week last week. She actually said she didn't think the episodes were linked to the change in her room air dosage from 2 to 1.5 L through her nasal cannula. She switched to that yesterday morning, so she would have anticipated a change in a/bs during the day yesterday instead of at night. Instead Ellie had only 3 all day yesterday, so we're still not sure on that one. Ellen said we're still obviously going to keep a close eye on her, but we're not going to change any O2 as of yet. Also, Ellie is still getting the maximum amt of caffeine recommended for her age - to help with the a/bs. So can't change anything there. All of Ellen's other assessments were great: tone, color, etc. So again, Ellie's just acting like a 29 gestational week preemie. She's still getting the daily enemas and isn't pooping on her own, but should as her feedings increase this week. She has tolerated her feedings thus far with the 6 mL every 3 hours, but then again it's only been since 2 pm since she got that first increase. She's been sleeping and hopefully gaining more weight today! Ellen reminded me again today (as I was getting upset) that Ellie really is doing great. There are other babies that have 20 to 50+ a/bs and they're majority tacticle (where they have to touch them). Oh, I did ask if they considered the whole O2 thing as a tactile, and they do. There are only two categories - self-resolving and tactile (meaning - uh, we have to intervene because baby isn't remembering to breathe). She had a PICC placement X-ray today and Ellen said it was perfect. So that's good. Since I'm the planner type - I asked her more about when Ellie goes home - she said there is a 50-60% chance of all preemies to go home on an apnea monitor - especially if they are on caffeine. She would wear this basically all the time. Again - that first 6 months after she goes home will be an adjustment especially with monitors/medications. BUT ... we can start praying now because there ARE babies that go home not needing this stuff. It's obviously still too early to tell how the next 8-10 weeks are going to progress. All we can do is take one day at a time, pray, and respond to what Ellie's trying to tell us! Sorry I didn't get much blogging done today...man, the milk production is going very well, almost too well...I'm finding my time in between pumping is dwindling...where does the time go in a day, really? They said the first two weeks is critical in ensuring a proper milk supply, so hopefully I'll get to stretch things out to longer than every 2 hours! So please forgive me if you've written/called. I haven't forgotten, just am slow in getting there! Keep praying for out little Ellie's breathing! Lord, comfort her for a restful night.

better night

Praise God for a better night breathing for our little Ellie. She had fewer brady episodes since midnight (less than when we were there around 9 pm last night). She had 9 desats - but all were self-resolving in the night, so that's good. The Dr. was watching her and considering changing her back up to 2 L nasal cannula, but Ellie ended up coping better with the 1.5 L as the night progressed. The nurse also told me this morning that she was on her back for one whole hour and didn't have any bradies! YAY! She did have an Xray this morning to see her PICC line placement (routine). As far as her feedings, she had minimal residuals, so she still got her full feedings. Can't remember if I said Ellie was going to 6 mLs every three hours yesterday or today - but she's really starting the every 3 hours today! So we'll see how little missy copes with those changes. Again, please pray for this week as it's going to be an agressive week for her feedings to increase with the goal of possibly being off all IV fluids at the end of this week. So then she would just be eating mommy's milk. Also, if she gets off IV fluids, then no more PICC line which means no more risk of blood infection. I got two wonderful increments of sleep last night - one 5 hours and one 4.5 hour stint...and no bad dreams. THANK YOU JESUS! Praying that all who are reading this can be blessed today in ways that you have not seen Jesus work before. Until next time. Oh, and Good Morning Daddy (we girls still miss you like crazy!)

Excellent Rate of Gain but bradies are getting too numerous for Mommy!

Ok, so I grew up on a farm...where us Webers always entered our pigs into the derby contest where they determine their rate of gain and are rewarded for that. Well...Ellie has followed the trend and had an excellent gain today. Obviously, I'm not going to figure out her average rate of gain over her 12 days of life. SO...today she slept most of the day and didn't burn many calories to get her to a whopping 1205 grams (translation she gained 2 oz.) so, she's up to 2 lbs. 11 oz. Yippee! So all day she had 2 a/b's - both self-resolving and Nurse Kent was so proud and said she's been an angel all day. However, right after he said that, she had a brady that needed oxygen since she wasn't coming back fast enough. Since shift change at 7 pm she's had 8 bradies - one of those also needed a puff of air. Nurse Robin said that it might be since she got dropped to 1.5 liters by Nasal Cannula. They can go through a transition time where they need to get used to that different amount of air. ***Ok, I just want you all to know that I've had to change the amount of bradies three times since posting this. ***Please pray for tonight...mommy's a little nervous especially at this rate. Grandma is right at her isolette side watching her every move...I think she's a bit nervous too. Looks like I'm not going to get to hold her tonight, due to too many bradies. The nurse is calling the doctor to see if she might get moved back up to 2 L of room air through her nasal cannula. Grandma Weber and I cooked Lasagna (that Grandpa) sent down with her for all the residents at Ronnies. I was pretty excited actually - kinda made me feel like I was still at work at Jardine! :) So of course, I applied everything I've learned at Jardine (oh, Jardine is an apartment complex affiliated with K-State housing and dining, for those who don't know) which means that personal invitation gets the most people at your events! So I did borderline stalk, I mean invite the other families to come join us for some lasagna and peach and cherry pie. Only one lady showed up, but I assured the other families that it was totally reheatable - and they could eat it whenever they got back to Ronnies. Just cause I'm curious, I'll probably check the fridge when I get home to see how much is gone. I hope there isn't anything left...now that would make my heart happy! Oh, met a Ronnie resident who is actually an AG teacher! Grandpa and Uncle Micah would be proud! He graduated from K-State in Ag Ed a year before I graduated Ag Comm...who knew. They are parents of a preemie in the NICU as well. Well, it's 9 pm and Grandma got kicked out because only parents are allowed after 9...so I guess since I can't hold my little ellie tonight I'll be subject to Grandma's orders for more rest. Please pray for Ellie tonight as she sleeps..her night seem to be worse than her days. The nurse keeps reassuring me that she's just acting her age, but it's not an easy note to leave on after having so many bradies in a row... :( I have a feeling I'll be calling frequently tonight. Goodnight all. Daddy...this is how I've been sleeping all day...added a picture just for you! Miss you love. Love, your girls

a brand new day

Last night she had 5 bradies - so a good amt less than the night previous. 4 were self-resolved, 1 tactile. Grandma did a good job of making Mommy get some rest, she's kind of strict though! But..it was good to get such a good nights sleep. No dreams last night, thanks for praying. When we got here Ellie was ever so cute, got this picture, and then she started laying on her arm. I so tried to get a picture of that for you Daddy, but our camera was out of batteries. No worries, Grandma and I are going to get some more! This morning, Ellen (Ellie's Nurse Practitioner) came in and gave good reports for our little girl this morning. She increased her feedings to 6 mLs every 3 hours starting today, so we'll see how she tolerates them. Ellen also prepared me that this will be a big week for Ellie's eating - hopefully we'll re-evaluate her tolerance and move up her dosages daily - maybe a couple CCs (interchangeable with mLs) tomorrow! Ellen said maybe by the end of this week, she'll move to just mommy's milk - no IV fluids! I was pretty excited that was in Ellie's near future. Obviously we'll still take one day at a time, but kinda fun to look forward to that! She also got to have her nasal cannula lowered to 1.5 L of room air. She has a scratch/bruise on her right eyelid, but Ellen wasn't worried about that. The bruising might be shifting from her cheeks that were from before. Mommy just got done giving Ellie a washcloth rub down (i.e. bath) and so she's all clean now! :) As if she really had much body odor before. We washed her hair and combed it too. Changed her diaper after her enema - she had a great amount of green/tarry poop! Yippee. Grandma Weber got to watch and then she also got to see a couple of Ellie's big smiles. I was so glad she did them again! It's so precious. Until next time...

Sunday Evening Post

Well, our little Ellie is now tolerating 6 mL of mommy's milk every six hours and she had less bradies today, which we were very happy with. She's having them mostly when she's on her back and the nurses said that it's developmental, but she should get better with age remembering to breathe. We gave her her princess sticker for a "stable" day. YAY! Both mommy and daddy got to hold Ellie, kangaroo hold - skin to skin..it was precious and we also get to hold her for an hour. We also went to the Topkea Bible Church and it was pretty much amazing! Just what we needed, although a little emotional for Mommy (surprise I know). Howard Dayton, cofounder of Crown Financial Ministries, gave the message, we thought it was pretty neat and the worship was awesome. Just hard to be there without our little Ellie hearing me sing. Please pray for Ben tomorrow as he figures out his semester schedule. He's meeting with his advisor and his professors to come up with a plan. Please pray also for a peace for Ellie and me as Daddy is away. Thankfully Grandma Weber is here with me to keep me some great company and I'm sure she'll love being with Ellie every day this week! I'm also going to start figuring out what my schedule will look like working from "distance ed" via Ellie's room. Ok, well, Grandma is trying to make me go to bed and get more rest, so I better get going. Thank you for your faithful praying.

Rapunzel?

The nurses and staff here are doing a great job of educating us and even bringing to our attention things that we need to prepare for when we bring Ellie home. We both thought normalcy would occur once we got home, but we're learning that Ellie's first year journey of life will be a little more atypical then we thought. We sure look forward to the day that we can bring Ellie home and show her off. Unfortunately we're learning that Ellie's immune system is weaker than a full term child's. This will have a noticeable effect for up to a year. The effect of this is worsened by the fact that we'll be taking her home near the start of cold and flu season. All three Gramkows will be getting whatever shots are appropriate in order to keep us all healthy. So once we take her home we may have to be cautious about keeping our little Ellie from large crowds, places where there are many germs. We also learned that our travel has to be limited, which is also a frustration because both of our parents and family live some distance away. Again, it will all work out, but it's difficult to see exactly how to approach the situation. Please pray for us as we try to discern what level of isolation she needs to have once we take her home in order to keep her safe. As many of you know, we are social people and this is going to a really hard transition for us. But obviously God knows what little Ellie needs and we're going to see to it that her mommy and daddy follow those doctors' orders.

Movin' On Up

Today Ellie's meal was upped to 6 mL every 6 hours (up from 4 mL every 6 hrs). Her first 6 mL feeding was at 11:00 AM today, so at 5:00 PM we'll see how she handles that. They also checked her proteins and electrolytes this morning. They all came back normal. I think this just means they won't change her IV much. Every day they change her bag of IV fluids. The mix of nutrients was designed just for her based on her birth data. They regularly check her protein and electrolyte levels to see if they need to tweak the mix.

Thoughts and Dreams

Last night I ended up not feeling very well, so I went back to Ronnie's to get some rest. It sure helped, praise Jesus! It also was good to give Daddy some alone bonding time with Ellie. He read her more of the Bible and also got to conventional hold her for a half hour! He said the time was precious! If you guys wouldn't mind praying for my thoughts and dreams, I'm still having spirts where I'll wake up in the middle of the night very upset due to dreams that are not from Jesus, that's for sure! Last night I woke up at 2 a.m. with very bad thoughts and dreams and was a bit shook up. Ben called the nurse to check on Ellie (Praise God we have this option!) and she was doing well, so that helped calm my nerves along with a lot of prayer to settle myself down to go back to sleep. This morning we're going to the Topeka Bible Church, suggested to us by some people from our home church, Grace Baptist. We're looking forward to worshiping and praising Jesus for all he's done for us and our little Ellie. God is good.

Mona Ellie Smile

Ellie has a progress chart in her room and she get's a princess reward sticker every day for her big accomplishment of the day. Today she gets a sticker for smiling big at her parents. As you might guess the biggest smiles were happening as I was running to the camera, not before when I would have been watching or after when I could have snapped it. Such is life. So maybe you have to be mom or dad to see this one, but it's a smile. And if you don't think so ... hmpf!

Saturday Evening Post

Time to once again tell the world about my little girl. Ellie continues to have A&B episodes when she is lying on her back. The pattern has often been the same: She has some disruptions in her breathing pattern then her heart rate drops causing her blood oxygen level to drop. Jennifer (Ellie's nurse tonight) noticed that Ellie was sleeping with her mouth open and thought maybe Ellie was letting out all the air from the nasal cannula. Maybe tomorrow we'll try giving her a binky when she's on her back. By the way, for those of you who have not recently had a crash course in everything baby: a binky is a sucky is a pacifier. I'm pretty sure there are some other weird names for it too, but those are the ones that come to mind. I'm starting to put together a sort of glossary. Maybe I'll put those in it. She continues to take her feedings. Just now she had 1.5 mL of residual so they gave her the full feeding of 4 mL of mommy's milk. By the way, residual the term they use for whatever is in Ellie's stomach before her feeding. Ideally this is just some mucous and digestive juices, but sometimes little Ellie forgets to digest mom's milk and still has some partially digested milk in her tummy when the next feeding time comes. The nurse thought her feeding schedule would be stepped up again by Monday. She maintained weight today so she is still 2 lbs 8 oz. (Actually I think she lost 5 grams, but that's minimal really.) So she is still at her birth weight. (Actually she's 1125 g which is 5 g above her birth weight. But again, 5 g is minimal, even for little Ellie.) (Sorry, I don't know that stat off the top of my head. I realize this means I hope this doesn't affect my long term fathering skills. Sigh.) She also grew 1/4" somewhere over the last 11 days bringing her length to 15 3/4". Wow, it's hard to believe my little girl is 11 days old.

Saturday Morning Update

Mommy just called the NICU to see how her baby did last night. She is still on the 2 Liters of Room Air (high flow) through her nasal cannula. However, she had 12 a/b's last night :( That's the most she's had in a night. :( The nurse did say that they were all 12 - self-resolving and lasted under 30 seconds. She also kept her 11 pm feeding down when they checked at 5 am this morning. YAY Ellie. We're so proud of her - she's on her way to adding more weight! Yipee!

Ellie is back to her birth weight!

Praise Jesus...Ellie is back to her birth weight. Last night she weighed in at 2 lbs. 8 oz. Wahoo! She didn't tolerate her 5 pm feeding (that Ben was keeping you in suspense before about), but the Drs. actually still gave her the next full dose - 4 mL of Mommy's milk. They said they were giving her a second chance, which I'm so glad they did. At 11 p.m.'s feeding, they checked her residual and there was only 1 mL of "stuff" (mucus, undigested milk, and digestive enzymes) which is SO good! That means our little Ellie worked extra hard to digest last time's feeding and this times! We were so shocked, we really thought she might not tolerate this dose too. Her bilirubin level is back up to 7.6 (before they said she might get the jaundice light again at around 8), but Ellen (NP) wasn't too concerned. Apparently one week is a milestone, so since she's done well thus far, there's no need to put her back on the light. We also got to give Ellie her first sponge bath. She didn't like it very much, she cried! (which is not very loud) This afternoon/evening she didn't have that many brady episodes, so we were excited about that. She's still on the high flow Oxygen (2 liters) and so it seems to be helping her remember to breathe. OH...and we got to hold her again. I did the kangaroo hold (skin to skin) and Daddy's just more comfortable with the conventional hold (bundled up). We've met more people in the NICU, so that has been really good. Now we know Ellie's neighbor! Please pray for Mommy as her pain medicine prescription has come to an end. Now I'm really starting to feel sore, so please pray for healing and again - that I would take more naps and get more rest!