A New Horizon

Ellie gained 10 grams today, that's enough to push her up to 5 lbs 14 oz (2660 g). She was gavage fed after her 9 pm feeding so the nurse is going to see if Ellie will take a bottle at midnight. She took 13 mL from her bottle at her 3 pm feeding and had a couple desats during that feeding. She got caffeine at her 6 pm feeding and has only had 1 desat since the 7 pm shift change. That's compared to 15 desats during the day shift today. So Ellie is just plugging along ... just as she needs to. But the truth is I think Mandy and I were getting a little too excited about going home soon. We have been talking about transitioning to bringing Ellie home. But now after Ellie getting put back on caffeine and what seems like a new estimate of when she'll come home I think we've reached a turning point where we're eager to bring her home. That's not to say we weren't eager to bring her home before. Coming home to Manhattan for the baby shower tomorrow has been a reminder of what "normal" is ... or used to be. And I think it's making us both want even more to be back here at home with Ellie.

Ellie's Quick Notes

Ok, so here are the Quick notes...it's been a slightly emotional day, so I'm getting the info out in short form, so I can hopefully take a nap! 1. Pray for safety at Ronnie's. We think someone stole one of the really nice, hospital grade breast pumps (that they let us pumping mom's use). Remember I said a couple weeks ago, another family got their license plates stolen from their car in the parking lot? Well, now it's just a bit frustrating to suspect that people are stealing stuff in the house. :( It's sad, and I really don't want to stress out about that...so please just pray for Ronnie's! 2. It's been my time to break down - with all the desats and the bradies and the Ellie changing color moments to either blue or dusk! Just really hard watching ellie go through those desats and since her test got rescheduled until Monday, I was just having a hard time with thinking of "iron-manning" it through the weekend. Last night she had 22 desats and 1 brady. 3. Feedings now three times a day (the order) and today they are trying her on her "home feeding schedule." Or at least we're now going to see what she tolerates.The nurse fed her at 3 am, she wasn't real awake, she was doing gulping again - ate 20 mL. P.S. Did we mention that at last night's 9 pm feeding she had a color change. Not cool! It was also accompanied by episodic breathing, which has also been a new symptom. 4. speech therapist fed at 9 am took 27ish - had desats during - episodic breathing - a lot in a row- not cool - her sats were taking too long to come up, so they gave her blow by (oxygen) 5. Ellen came in and saw us in our new room and filled us in about Ellie - I got super emotional and she comforted me by making me laugh - commenting about how she's excited she's pooping well! WAHOO! Dr.Navarro decided to put her back on caffeine because of the increased desats and they didn't want to wait until Monday. They are still going to do the acid reflux/pneumogram study - now the doctor reading the report will have to read it differently since she'll be medicated. They aren't taking her off of it again..and Ellen said we probably are going home on a monitor and caffeine. 6. They're working on setting up our cardiologist follow up appt in few weeks (I thought before it was a few months follow up, but guess not) - this is to check the PDA (heart vessel) 7. Sad news - not so much going home in two weeks; next estimate is maybe a week before due date now. Ellen pointed to November 20 on her princess calendar. Prayers for Team Gramkow today. P.S. I'm super excited to see the women who can come to the Baby Shower in Manhattan tomorrow!

That's what they needed...

Today has been a rough day emotionally. I have been reminded numerous times of the amazing work Ellie has done thus far...she's almost two months old...and still not "due" yet. We're asking her to do a lot. However, it's just so hard when Ellie has progressed so well in other ways near the beginning (which we Praise Jesus for)- off the ventilator after a couple days, in a crib and not yet back to the isolette, gaining weight and NOW...it just seems like the feedings are taking forever for her to catch on. Oh, how I've tried to be so supportive when I hear from the other NICU mom's how their babies are doing, but it's just hard. I'm trying so hard not be be jealous of their progress. My good friend Alisha reminded me when she was with us at Ronnie's oh, about a month ago, after one of the mom's was super excited and telling us about her daughter taking a bottle...I felt sad for Ellie - that she wasn't at that place yet. :( Alisha told me, "that's what she needed today." I guess I've had a bunch of "that's what I needed" moments today... just to name a few: 1. Ellen and Dr.Navarro putting Ellie back on caffeine today and Ellen spending about an hour with us explaining how Ellie's progressing and listening to our frustrations with the test getting pushed back. 2. then our new nurse Mary Jo (after the morning assignment got a little too overloaded) came in and sat down with us talking about the morning and our emotions and our assigned nurse not getting into see us until later this morning (because other baby on assignment isn't doing so well, and she needed to be with that baby - prayers for that baby today). 3. Our faithful nurses Lisa, Kent and Randi coming to see us in our new room and getting treats for Halloween from our bucket of goodies. 4. Going down to the cafeteria and not having enough money with us to purchase our meal - and when I went to put something back - the cafeteria cashier pulled out his own wallet and gave us a dollar. We tried to refuse, but he insisted. Yep, started crying right after that one! 5. Getting to hold Ellie at her 9 a.m. gavage feeding (what she didn't eat for the speech therapist) Wow...God sure does take care of us, that's for sure. I am also reminded of a special session that I had with my fellow Jardine Staff this past training talking about servant leadership and what that means. I remember being asked about the times when I felt like I was being served and being moved to tears just thinking about how generous people have been to us in the past. With this experience, I can say that I have truly felt the comfort of so many of you who have served us - whether with prayers, reading the blog, monetary gifts, e-mails, commenting on this blog, preparing a meal, sending Ellie gifts, and I know...I'm forgetting more. But thank you for your kindness to us. Thank you for having such a servant heart.

Our Little Cinderella

Well okay we couldn't find a Cinderella costume for Ellie. However, Ellie did turn into a pumpkin at midnight. (And here is the picture to prove it!)

Looks Like Someone Could Use a Cup of Joe

Ellie's new weight is 5 lbs 13.5 oz (2650 grams). That's 20 grams more than yesterday. Good job gaining Ellie. By the way, that's after a monster stool that Ellie had in her diaper right before her 9 pm assessment. So her weight increased, but unfortunately the number of breathing episodes is increasing too. She had 18 self-resolved desats. That's where her blood oxygen saturation level drops but she's able to recover by herself. She also had one A and B (Apnea and Bradycardia) episode. That's where her heart rate drops due to inconsistent breathing. And unfortunately it was a tactile A and B. (i.e. the nurse had to intervene to make sure Ellie recovered.) We were a little disheartened because she hasn't had one of those in a while and because she hasn't had that many desats lately. It appears that we are noticing the lack of caffeine. On the up side she is eating very well. She got 37 mL sometime yesterday. This morning she took 30 mL from a bottle and tonight she took 31 mL from her bottle. And she has had good control while bottle feeding today. Good job Ellie! I think the light bulb might be on. The nurse practitioner must agree because she wrote the order to give Ellie up to 3 bottles per day. Wahoo! We're just around the corner from having a bottle every time. Although she still needs to eat even more from a bottle to finish her feedings. Her feedings are up to 53 mL now ... that's 1.8 oz!

Never put off till tomorrow ...

Never put off till tomorrow that which you can do a few days from now. Er ... something like that. Well the people who do the acid reflux study and the pneumogram came today. Perhaps you'll recall that they were originally supposed to come on Friday to give the caffeine a chance to further disappear from Ellie's system. But they were supposed to do another baby today, so the test was rescheduled for today. When they came to do the test today they first told me they weren't sure if they could do the tests on Ellie due to ethical concerns. This was right after they noticed the Powercat on Ellie's crib. They're from Lawrence. After they had resolved their ethical dilemma one of them started explaining to me about the test as the other began unpacking their stuff. He told me that it may be uncomfortable for the baby but that the only permanent damage done during these tests is usually to the dad. I was okay with that. The test takes twelve hours and they were going to start it at about 5 pm. But Ellie was supposed to move rooms before 7 pm. I knew she would be hooked up to a lot of things so I asked if they would be able to move her after the test started. (And I told him that she was supposed to move today.) He indicated that there was a problem with that and thanked me for speaking up. Then he went out into the nurses station and quickly decided that Ellie's tests would be pushed back to Monday. Hmm ... what a puzzle. I thought it was because she was being moved. It turned out to be completely unrelated. When they ordered the breathing sensor they use to track the test subject's breathing they apparently got an adult size by mistake. They only had one infant sized sensor so they could only test one of the two babies they were supposed to. The other child was scheduled to go home in a day or two. So that is why Ellie has to wait until Monday. Drama. By the way, they are also waiting until after this study to switch her feedings over to her home feeding schedule. Waiting until Monday is technically a good thing from a clinical standpoint. The caffeine gradually disappears from Ellie's system and caffeine can affect the test results. So the test is more effective if they wait until she is caffeine free.

Big Day: The Gramkow Family's New Home!

We were surprised when we heard the news from our nurse today! But we packed our stuff up and moved it on out ... to a different room in the NICU. (I had you going didn't I?) Ellie's night nurse tonight was assigned to another baby that was all the way across the unit. The other baby is much newer to the NICU so it was easier for Ellie to make the trip than her new neighbor. This will allow Ellie's nurse to remain close to both of her babies. Ellie's first room was on the front side of the unit right by the main entrance. Now she's on the back side of the unit. The new room is pretty much a mirror image of the old room ... but it looks so different. Mandy and I are still getting reoriented.

Waiting :)

This morning we got here at 9 am for the speech therapist's feeding with Ellie. She took 30 mL, so she's at least consistent! She was very awake and alert! Probably because she slept hard last night (apparently she was worn out after her 9 pm feeding). They did up her feedings to 53 mL last night and did decide to keep her feedings the same for today because of the reflux study and pneumogram. Turns out - we found out that they alternate feedings with apple juice (this helps measure the reflux better because of it's acidity). She's had to lay with her crib bed flat since last night because of the reflux study today and we've noticed some increased spitting up...so wondering if it might indeed be reflux. Last night desat wise she had only 6 accompanied by one bradie - all self-resolved. This morning she's already had 8 and 1 a/b episode. :( I'm ready for this test get going so we can get some answers!

Wednesday Night Stats

Ellie weighed in tonight at: 5 lb. 13 oz. (2630 grams - so she gained 30 grams from last night). Reminder - she did have 2 large stools today which may have affected her overall potential gain! :) Also - BIG NEWS - Daddy fed Ellie her 9 p.m. feeding tonight and she ate 37 mL! Wahoo! Here's a picture with that haberman nipple that we keep talking about. P.S. Baby Shower in Manhattan on Saturday morning - 10 a.m. at Grace Baptist Church. I would of course love to see all of you faithful blog readers who live in or near Manhattan even if it's for 5 minutes to just say hello! So consider yourselves invited! Plus - we're going to scrapbook Ellie's journey thus far, so bring your creative juices! Sad that Ellie can't be there physically with us, but she will be there in "pictures!" I am so looking forward to it!

Purr..fect Outfit Ellie!

So this morning started out a bit rough...we stayed late last night so slept in a bit. I called at 9 am this morning to check on Ellie and they said Speech Therapy was there feeding her! So I got dressed in a hurry and headed to the hospital. I guess this is how motherhood also feels - sometimes you don't get that shower in before you're needed?? :) Anyway, Ellie continued to use the haberman nipple with her feeding and this morning she took 26 mL. She's still eating twice a day (they fed her at 3 am and she took 20 mL - so progress from the night before). I can definitely tell she's improving on her suck each feeding, so that's encouraging. The ST said that the first 13 minutes of Ellie's feeding this morning, her suck looked normal and great. Last night they increased her feedings to 52 mL because of her weight gain. Ellen talked to us today about trying her "home feedings schedule" (which will consist of 6 feedings of breast milk not fortified and then 2 feedings of Neosure Formula with additional fortifier) starting tomorrow. She was going to try today, but wants the dietary consultant to look at the "plan" first. Last night she had a total of 12 desats and 1 or 2 (can't remember) self-resolving bradies. As of 5 pm today she had 11 desats and 2 bradies - again, self-resolved. The results from the head ultrasound came back today and Ellie's brain tissue looks normal. However, in the notes the radiologist commented that he saw a grade 1 germinal? matrix hemorrhage. The good thing is that grade 1 is the lowest out of 4 total grades. There is no follow up or no concern with a grade 1 reading. If it would have been grade 2 or above, then it would be more of a serious issue. Praise Jesus that is isn't of any concern to the medical staff. Mom needs to keep reminding herself of the aforementioned! They MOVED UP her pnuemogram and her acid reflux study to tomorrow (Thursday). I am actually quite pleased because hopefully Ellie won't have to just toughen through the desats and bradies increase. I'm ready to get some answers as to if her episodes are prematurity related and/or acid reflux related - and then get the treatment. Ellen said that these tests are pretty precise and will give us a great indication of what's going on. So Ellie will be hooked up with a tube down her esophagus for 12 hours tomorrow and another wire under her nose to detect her breathing. The nurse warned that she'd be hooked up to quite a few wires! I was glad for the warning. Oh oh...and she had two large poops! Wahoo! This morning at 3 am and this morning at noon! Now we all feel better! Well, until next time...Team Gramkow sends their love and hopefully will be home in two weeks- ish!

Chalk Rock

Did you ever play with chalk rock as a kid? It was great stuff. It's just a white rock that you could use as chalk to write on cement. Apparently KU fans are really into that stuff. Anyway, when we came back to the NICU from our KC trip we were greeted by a note from Ellie on her door that said ... well, I won't quote it, but it said something about how Ellie is a ... fan of the other school now and how she did miss us when we were gone ... and something about chalk rock. We also received text messages with attached pictures of Ellie. One picture contained KU gear dangerously close to our little girl. Don't worry though, the NICU here is responsible enough not to have any actual KU outfits so she wasn't wearing anything directly on her skin. In fact, she was wearing this cute red dress. Not all red and/or blue is evil. (Unlike crimson and cream which is almost always evil when combined.) Don't worry, all of the inappropriate materials were removed promptly. Apparently she had KU bedding at one point, but our faithful nurse Lisa took care of that for us. Lisa is a faithful K-State fan and said she couldn't bear to look at it all day, so she changed her bedding in the morning. In fact, Lisa is such a loyal K-State fan that when she had a bad accident a couple months ago Bill Snyder came to see her in the hospital. Yeah, that's what I thought. Unfortunately Bill has yet to show up at Ellie's door at the NICU. Bill, if you're reading this (or even if you aren't) you are welcome to stop by. We'll even make an exception on the calling ahead rule ... just stop by whenever. Seriously though, Ellie and I have been K-State fans all our lives. Well okay, I've only been a K-State fan since I was about five, but in my defense I lived in Seattle for the first four years of my life.

Getting Up To Date In Topeka

I felt like we hat to catch up on the Ellie news when we got back to Topeka. There have been a lot of things happening lately. So I won't keep you in suspense any longer, Ellie now weighs 5 lbs 12 oz (2600 g)! Wow! That's a 70 gram gain Ellie, good job! We talked to Ellen about this today. Actually we missed her when we got back and didn't expect to see her until tomorrow. But as we were eating in the hospital cafeteria we saw Ellen and she came over and talked to us about Ellie. Our nurse had told her that we went to eat so she just came down to the cafeteria to talk to us before she went home for the day. Yes, we love our nurse practitioner. Regarding the awesome weight gain Ellen said they might lower the calories in her feedings because "she is a p-i-g, pig" and is gaining so well. She also talked about the pneumogram and acid reflux study that are scheduled for Friday. As you know Team Gramkow is on the bottle feeding rollercoaster. I hear it's rated as one of the top 10 rollercoasters in the country. Incidently, that reminds me of a picture that Amelia drew for me shortly after Ellie's birth. It pictures Amelia and me in a rollercoaster car. I don't know if she knew how appropriate that was. (Although I think Mandy and Ellie should be pictured in the car.) At any rate, the latest turn on our rollercoaster has involved an increase in the number of breathing episodes that Ellie has. She has been off of caffeine for a couple of days so it could be expected that she'll have more breathing episodes. But this increase could also be due to acid reflux. The pneumogram and acid reflux study should help determine which is to blame. If she's having acid reflux then Ellie may not go back on caffeine. However she may not show signs of acid reflux. The pneumogram should tell them if her brain simply isn't mature enough to control breathing consistently. That would mean that she would need to go back on caffeine for a while. Mandy and I have mixed feelings about going off caffeine. If she goes off caffeine then chances are she won't go home with a home monitor. This would mean Ellie wouldn't be hooked up to anything when she goes home. This sounds great ... unless your the one obsessing over every breathing sound she makes. We kind of like the security that would come from knowing that she's still on the monitor. On the other hand, it would be great if she were able to breath well enough that she didn't need caffeine. Please pray about this for us. Perhaps you can see better than I what exactly we need prayer for. This is getting a little wordy, so here's a rundown of the other news. Her PDA (blood vessel) is still open. It is supposed to close and disappear. The echocardiogram results showed that it did shrink since last time. We'll follow up with another test in three months. The results of the head ultrasound she had today are not in. Due to weight gain her feedings were upped to 51 mL. That's what she was getting today, so it may actually be a bit higher after today's weight gain. Mandy performed the first parental feeding with the Haberman nipple. It's hard to say how well it went because Ellie wasn't really awake very much. (Perhaps you would interpret that as not going well.) They're probably to try again tonight (early morning). The speech therapist had to miss the feeding for something. The nurse fed her 21 mL from the haberman nipple. I think her desats and a/b episodes are less today than yesterday. The real test will be the next few days and on into the weekend. Please pray for her breathing.

Everything's Up To Date In Kansas City

We went about as far as we could go ... from Ellie Jo. We had a good time in Kansas City, but it was time to come back. My interview went well. First I talked to an HR rep. She asked me ... I don't know ... if I prefer working in groups or individually, what are my strengths and weaknesses ... all that kind of stuff. She had already asked me a lot of that in the phone interview. After I talked to HR I spoke with a couple of engineering managers. They gave me a technical interview; yes there were test questions. After that I got a tour from a couple of younger engineers. They let me know right away that I could relax because they weren't interviewing me and they certainly weren't going to be making any hiring decisions. One of the engineers giving me the tour was Luke Bogner, a friend I knew from K-State and Intervarsity. It was good to see a familiar face and catch up with him. Those that know Luke may not be surprised to learn that he brought his bass guitar and an electric guitar into his office. The funny thing is I think he actually uses them for his job. (He works on an audio electronics module.) I haven't heard anything about an offer yet but I think it's still too soon. A friend that works for Garmin said he got an offer later that week, but not the same day. Hopefully I'll hear something by the end of the week, but I'll contact HR by then to at least get a time frame. Thanks for all your prayers.

Report from Kansas City

Well, I finally am at a computer to do a little update on Ellie. Just before we came to Kansas City yesterday, the feeding consultant i.e. Speech Therapist (ST) came in to evaluate Ellie's sucking and swallowing. She also brought some different nipples to try out. So at 3 p.m. the recommendation was to use a haberman nipple (which allows three flow settings - low, medium and high). They also recommended a position change for Ellie while she eats. So she'll be fed "sidelying" where they lay her on their leg and she eats on her side. This is similar to what it would be like breastfeeding. Kathleen (the ST) said it was easier for Ellie to regulate how much she swallows at one time since the milk pools in her cheek. When she's upright, if it's too much of a flow - then the milk goes naturally down her throat - causing her to choke, etc. She also had less desats when they tried the haberman nipple with the different positioning. She ate 23 mL with the ST and looked like her suck was more coordinated. She also wasn't losing much out the side of her mouth - AND she wasn't gulping! This was good to hear and we're hoping this helps her move along in her feedings. However, last night they tried to feed her again with the haberman at 9 p.m. I think it was - and she had 2 desats and only took 10 mL. Reminder: Ellie was taken off caffiene the other day. So I guess this is the test where she might have more desats than normal. They're seeing how she does of course. The report from the night shift last night indicated that she had 17 desats and 2 a/b's. They were all self-resolved, but those are high numbers compared to how she's been doing previously. So, I guess it's tough to determine since we have two changes going on - is it the caffeine or the change with the bottle nipple/positioning? We're eager to talk more in depth with Ellen when we return to Topeka. As of this morning they were not putting her back on caffiene as of yet, they were maybe going to do a newmagram? Not sure if I heard and or wrote that correctly. On the weight gain side - our little princess is growing!! She's now 5 lbs. 9.2 oz. (2530 grams!). She still is having issues pooping - she had a couple smears, but no real big ones yet! :( Ben's still not back from his interview (We stayed with Uncle David and Aunt Audrie in KC last night) and I'm still wondering how it went! We'll make sure to fill you in later! Until next time! Team Gramkow sends their love!

Miss. Ellie's Monday

Update from last night: Sleepy girl! They suctioned her at midnight and got some gunk out this time finally - apparently they didn't like her "pig" noises :) She had 3 desats all night and a couple nurses held her during her feedings. I think she likes being held! As of this morning: She's had 1 self-resolving a and b and then one desat. She had her heart ultrasound (EKG) this morning around 9 am to see if that PDA vessel is still open and to check out the status of her murmur. She got a bath this morning and the feeding consult is scheduled to come at 3 pm today. I'm interested to see how that goes. We're taking off for Kansas City tonight as Ben has his interview with Garmin tomorrow morning at 8 a.m! Prayers! Prayers! Prayers! Also please pray for Ellie as (they took her off her caffeine yesterday to see how she will do)today is the real testing day. The caffeine should be getting out of her system. This is great progress that we're even at this point to "test" her off the caffeine, but mom's still a bit nervous.

Ellie's got a brand new....COUSIN!

Yes, that's right....Mr. Bodee decided to finally join us! Micah and Renae Weber (and big brother Kahle) welcomed Bodee Sean Weber early this morning, Oct. 27 at 1:54 AM. He weighed in at 8 lbs. 12 oz. and was 21 inches. Yippee! Praise for his safe arrival and prayers for their adjustment to a family of four! Ellie can't wait to meet her cousin Bodee...well, they might have to have a virtual relationship for a little while :)

Don't Count Your Stickers Before They're Stuck

Ellie had another huge gain today. She gained 80 grams bringing her to 5 lbs 8 oz (2490 grams)! Eighty grams, I'm pretty sure that's a record. What's that you say? Princess sticker you say? Not so fast! She took 33 mL from a bottle this morning when mom fed her ... that's a record! And at tonight's 9 pm feeding she took another 34 mL from the bottle when dad fed her ... that's a new record! And bonus points for making dad look good!! So at the end of the day, what's a dad to do? A princess sticker for the feedings or for the weight gain? Only one thing to do: If we write small we can fit both up there!

Light Bulb in a Bottle

Well who's to say if the light bulb has come on, but she has just taken 25 mL from her bottle and is still going strong. She opened up for the bottle too, usually we have to convince her to open her mouth. The feeding consult is scheduled for tomorrow and they're going to go ahead and still do it. There are only three nipples that the NICU can use: a cross-cut (slow flow), a regular, and a NUK nipple that has an even faster flow than the regular. The people that do the feeding consult are also allowed to recommend a Dr. Brown's or an Avent nipple. It seems to me that there's a pretty big difference between the cross-cut and the regular nipple, so I keep wishing they had a nipple between those two. The feeding consult people have a nipple that is between them. Previously she's used a cross-cut most of the time, but it's difficult for her to get much from it. Sometimes she'll suck so hard that it starts to collapse the nipple, which means she can't get any from it. When they've tried the regular nipple on her in the past she has ended up with most of it on her instead of in her tummy. But this time she's done really well with the regular nipple. It's been a little over half an hour now so we're stopping the feeding. She ate 33 mL! That's a new record and definitely a princess sticker! She had such a small amount left (15 mL) that the nurse just slow pushed the rest in by hand rather than using the autosyringe.

It's 10 pm ... Do you know where YOUR children are?

My daughter is in the same room she always is, but at the moment she's also in mommy's arms. She's 5 lbs 5 oz (2410 g) of princess. That means she gained 10 grams. She also grew 1 cm in length, but is still at 18 inches. Her head circumference was 12.6 cm ... that's also one centimeter more than last week. She did pretty well on her second feeding today taking 21 cm from a bottle with a regular nipple (instead of a slow flow cross-cut nipple she had used the previous couple times). That was her 9 pm feeding; at her 9 am feeding she took 25 cm. So praise God she is doing better on her feedings. Only time will tell if she will continue to improve. The nurses keep telling us that it's usually like a light bulb turning on: the babies will suddenly just "get it." Well it turns out a lot of the lights here are on dimmer switches, so maybe Ellie just got the wrong light switch. Oh well, as Mandy says: we will wait for her.

New Photos Online!

Check out Mandy's Picasa website for all the latest Ellie photos. Google recently came out with a new edition of the Picasa image viewing software that Mandy and I use. It allows us to automatically sync the photos on our computer with her Picasa website. So now you can get all the latest photos of our little girl even if we don't upload them onto the blog. There are also some movies you can view of our girl in action! (You can even hear the little squeaker squeaking.)

Ain't a that a good news!

This morning we got to the hospital and were greeted with a smelly girl. Yes, that's right...another rock star poo at 9 a.m! We decided to change her outfit to her purple sleeper to match her K-State blanket so we can all root for the K-State Wildcats today! She woke up a bit so Nurse Randi decided to try the bottle. She did well at first with the cross-cut nipple, but then Randi noticed that she was collapsing it pretty good and had a good suck. So, she switched over to the regular flow nipple and Ellie downed 25 mL. When we shared with Ellen the good news - she gave me a hug! :) So much better today after her sluggish 5 mL, 10 mL-ish yesterday. We got the results back from Ellie's eye exam and it reported immature (as expected) - but no indication of the disease ROP. The Eye Doctor will require us to see him again in 3 weeks. This is when Ellen said that "you guys won't be here in three weeks, so you'll have to drive back to see us"...hmmm...I quickly looked at the princess calendar and noted that...whoa..that's coming up soon! Ellie did have some gunk in her left eye - they are maybe going to watch it and do a blood culture to see if it's something of concern. Oh...about Ellie's episodes...she had 7 desats and 2 bradies last night, but Ellen wasn't concerned - she actually said that she might try Ellie off her caffeine and see how she does! Not sure how I feel about that, but we'll go with it. She said she'd like to try and see how she reacts since she's still here in the hospital. So we'll see - maybe no monitor when we go home? I dunno...I was kind of hoping for that security, I'm not gonna lie! She's still being her normal wiggle worm self around in her crib! It's amazing just to watch her! We hope everyone has a blessed weekend...I'm hoping to get to see High School Musical today...if all the 5th graders don't get all the seats before me! Hee hee!

Saturday Morning Post

Miss. Ellie had a bit of a sleepy day yesterday. The nurse did try feeding her last night at the 9 pm feeding and she only took 5 mL. They reminded us that they might have the speech therapist/feeding consultant come in and look at her if she's not progressing by next week. It's ok...we'll wait for you Ellie! This morning's updates indicated that she had 7 desats and 2 bradies (which is more than usual for Ellie) so we are wondering if Ellen will up her caffeine dose. Also, Ellie didn't really wake up for any of the feedings last night - maybe the exercising really did tire her out! She did have a giant poop this morning at the 6 am feeding. Wahoo! And yes, praise Jesus for normal functioning bowels! She's still at 48 mL because she didn't gain quite enough to add another mL. So Ellie's weight is up to 2400 grams which is 5 lbs. 4.6 oz. Another Gramkow Gain!

Three diapers and a turned Crib

Miss. Ellie had a great night last night - with the highlight being POOPING! Yep, at midnight's feeding the nurse had to use three diapers to contain that stuff. So sorry if this is too much information, but we were EXCITED! Dawn, the occupational therapist, came in today to work on exercises with Ellie. She was impressed with Ellie's strength with her gestational age. She still likes to cock her head back! We figured out it was more to one side than the other - the side she prefers we figured out was facing where Ben and I sit most of the day with her. SO...her crib is now turned to work the other side of her neck muscles. They also gave us an exercise to work with her during her diaper change - talking to her close, holding her midline (with her arms in snug to her chest) and then just seeing how she can balance keeping her head straight. Ben got to feed her at the noon feeding after Dawn was done doing exercising with Ellie. She was awake for the most part. She ate 8 mL. Pretty good for eating right after working out! :) Next on the agenda is BATH TIME!

She Never Ceases to Amaze

Actually Mandy just reminded me of something Ellen told us today. Apparently she had two stools yesterday and we didn't know about it. We knew about the one she had after her rectal temp - a "smear" as they call it, but we didn't know about the other one which was at 6 pm last night. Wahoo! Ellie had an eye exam while Mandy was here early this morning. They put some goop in her eye and then held her eyes open while they put the camera down onto the eyeball. So they had Mandy step out during the test, but she could hear Ellie crying from the Lobby. That was tough for mom to hear. She gained 45 grams today, to put her up to 5 lbs 4 oz (2385 g)! Good work girl. She also had wet diaper with 45 grams of liquid! That's an ounce and a half!

Tonight on ESPN

Mom is getting ready to feed the little girl right now. And I thought it would be fun to give you the play-by-play. There's only one of me so I have to be the play-by-play announcer and the commentator, but I'll pretend I'm two different people. ;) ... okay it got a little wordy, but oh well ... She's awake and rooting. ... And they're off! Mom is putting the bottle in ... OH, and she took it right away! What's this? And she set the monitor off for just one beep. Mom is "pacing" her ... and she's back on track! Now she's getting into a groove. Mom is trying to keep her in position and the bottle at the proper angle. "Yeah, you mentioned that mom is pacing her. That means mom is tipping the bottle down so the baby can take a few breaths without getting any milk." Now the nurse is talking to mom, coaching her. Ellie is still eat--OH there's a cough. Mom's taking away the bottle and the nurse is patting her back. There's a little drop in the heart rate and some definite color change. "You know I think the nurse was coaching her earlier on that first quick brady at the start of the feeding. Sometimes these kids, they're so used to the pacifier and they get surprised by the bottle when they feel the milk coming out. So sometimes they'll startle and hold their breath for a bit." And as the girls take a burp break we'll take a break for a word from our sponsors.

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If you're just joining us Ellie has already taken 8 mL as we come off of the first burp break. "Now you see mom is having some trouble getting the nipple under Ellie's tongue. Babies this young sometimes try to suck on the nipple with their tongue on top of it and ... well, it just doesn't work." Yeah it can be pretty difficult to sneak that nipple in when Ellie's got her tongue up. And you see the nurse again coaching mom as she tries to get the nipple in. There it goes! Ellie is still wide wake and at this point -- oh and you see she's pacing herself now -- at this point you have to think she's going to put forth a good showing. "Well I have to agree with you there. And you know with these babies they'll be going along having trouble or maybe doing okay and then one day it will just click. I don't think we're at that point yet with Ellie but she's doing very well for being 35 weeks gestation and having been born at 28." You see she's still progressing at a steady rate as we near the 25 minute mark. Now you mentioned that it hasn't quite clicked for Ellie yet ... although I think it's only fair to say -- oh and there's a burp -- it's only fair to say that she is showing a lot of promise, but how to you help these babies to get to that point where it finally clicks? "Well a lot of it starts soon after they're getting milk force fed to them. Things like starting to give them a pacifier during the feedings helps them to associate sucking with that full feeling." Now the feeding will be over by the 30 minute mark so as mom takes another burp break we see that we're winding down here today. "You'll notice she has the hiccups during this burp break, which makes it hard for anyone to eat. But it's also important to consider that sucking can help get rid of those hiccups." So mom puts the bottle back in ... and she's off again! She must have reached her second wind, she's got a loud suck now. And she's pacing herself again ... milk is spilling out of her mouth a little but she's handling it well. "Now you see a couple other nurses coming in to see how she's doing. Ellie's a popular girl around here." She's still awake but she's slowing down now and mom's going to take the final burp break. The final tally is in at ... 12 mL. Good work Ellie!

Be Careful What You Wish For

Still no stooling. I think that Ellie has figured out a way to just generate urine and bypass the whole pooping thing. Very convenient. I'll have to ask her how she does that. Smart girl. Mandy pointed out that I did ask her if we could maybe have a child that didn't poop. Of course that was after changing one of my nephew's particularly smelly diapers. Come to think of it when Mandy was still pregnant we also talked about how eager we were for our child to just be here already. Now with the whole bottle feeding issues we've been having I'm starting to think ... uh, I'd better not say it.

Life is so fragile

I go in streaks with my emotions...why me? why the other NICU moms staying at Ronnies? Why do these little, bitty babies have to go through such a rough start to life? Ben and I tried to establish some sort of routine today. We also are seeing the need to get homework done...so I was with Ellie this afternoon while Ben was back at Ronnie's doing homework. And then, for the evening - visa versa. I was pretty productive in the first two hours, but then when I went downstairs for a break - it was a conversation that was meant to happen between Mary and myself. Mary came back pretty upset. I asked what was wrong and she said she had seen another NICU mom there with her children (they had also stayed at Ronnies before). She said one of their children, probably around 7 years old - told her that his brother was dying tonight. These parents had twins - they got to take their daughter home already a couple weeks ago, from the NICU, but were back to be with their little boy tonight. As Mary and I cried together, empathizing for this family, we also just asked so many questions of wonder - why? Mary herself had delivered twins - Brayden is in the NICU now, but Bringham had passed away in her womb back in August. I had feelings of guilt because Ellie had had a good day and was gaining weight,. But also feelings of complete and unbelievable thankfulness that God has allowed us to have Ellie here with us. Life is so fragile and so precious. God obviously had a plan for our conversation tonight - we talked for a couple hours about our stories...Wow, if I can learn from someone about strength - it's Mary. Her oldest boy also fought cancer at 15 months. She described her experiences holding her little boy there, and wow...really puts things into perspective. But again, why? Why couldn't I be the last one to go through the experience of having a premature baby? Why do others have to go through what we are? It just isn't fair. Why do we experience heartache through the suffering of living? Why is this so hard? I know it's late, and I'm going to hear it from Grandma Weber tomorrow :) But if you would...all of you following our little Ellie's story - would please pray for Little Brayden, the Smith Family and their loss, but then also Little Kailey, Little Brooklyn (niece of good friends of ours who was just born today around 30 weeks gestation - after the mom had a bad car accident) and even Little Liam who's at home now breathing without that oxygen! I firmly believe Jesus has a special place in His heart for these little ones - Ellie's friends - every one of them. As C.S. Lewis said, "Through suffering we release the toys of this world in search for God. Only then can we find him. Pain is God's megaphone to reach a deaf world and that pain is always a part of our joy." Excerpt from book, Dear Zoe by Max DePree (the letters of a grandfather to his granddaughter, Zoe, who was born premature at 23 weeks) "I am beginning to see a lovely mystery in all this searching. But these are all my questions in a search for my answers. I must tell you I've come to a point of great peace (although without concern), which I hope I can explain without having my answers. As have all the families who find themselves, to their surprise, loving a person with an uncertain future, I have struggled with the obvious question, "Why?" but is this the right question? Does it have an answer? In the ninth chapter of the book of John, Jesus is asked if some children suffer for their own sins or for those of their parents. Beautifully, he explains it is neither, but rather "that the work of God might be displayed in their lives." Now that's a purpose. An answer. A gift worth pondering. A gift that requires faith to understand. It brings me again to my lifelong struggle with obedience. How is obedience related to perfection? Obedience seems to me to be such a completely inclusive word. What does it take on my part (and in several years for you) to be faithful to the original? I am at peace concerning you and me, because I see now that the perfection lies in the eye of our Beholder. Like authenticity, it is his gift of love and ownership to us. We need only respond in love and obedience and faith."

NICU Heavyweight

Ellie gained another 40 grams today that puts her at 5 lbs 2.5 oz (2340 g). That girl really knows how to grow! That extra 40 grams earns her an an extra mL at each feeding. She gets 165 mL per kg of food every day. She weighs 2.34 kg so: 160 mL * 2.34 kg ... divided by 8 feedings per day gives 47 mL per feeding. She also earned a 5 lbs certificate to go with her certificates for making 3 lbs and 4 lbs. She gained that last two pounds in exactly one month:

2.5 lbs on 9/3 3 lbs on 9/21 4 lbs on 10/8 5 lbs on 10/21

Apparently they don't have any certificates for 6 lbs her at the NICU. Apparently they don't send many preemies home above 6 lbs. Well they'd better pray Ellie goes home before she hits 6 lbs because otherwise they're going to have to make a 6 lb certificate. While I've got your attention: (You are still reading, right?) Ellie continues to be pretty restless, although she's gotten some good sleep this evening. She's been a great baby except when something has been wrong so I think she's restless because of the stooling issue. She has gas pretty often (and plenty of liquid) but nothing solid. (No plasma either.) Other than that I believe she's doing quite well. Praise God for that. Now I'd better go. I have to have a talk with my daughter about not using her size to bully the other NICU babies.

Mom's First "Blue" Moment

Or should I say, Ellie's first blue moment while Mom was feeding her. Yes, that's right. We were getting near finishing feeding Ellie her bottle. She took 15 mL and was kind of telling us that maybe she wanted to be done eating (i.e. I'm tired Mom). I was quite proud that I got three good burps out during those 15 mL. We (the nurse and I...Ben is back at Ronnie's doing homework) decided one last try. I finally got the bottle in her mouth after fighting with her curled tongue and thought we were sucking and doing well. Whereupon, I notice her turning blue. I asked the nurse...ummm...do you think she's turning blue...the nurse says yes, and helps me lean Ellie forward (second later, the monitor starts going off). The nurse taught me what to do when that happens - basically needing to pull the bottle out and open her airway as quick as possible. Then rub her back and the nurse rubbed her head. She started breathing again fairly soon, but boy, did it FEEL like forever! The nurse commented that I did a very good job and that I didn't do anything wrong. :) I actually remained amazingly calm. THANK YOU JESUS! So, now I'm looking at my little princess through her crib and it's 4:40 p.m. We started the feeding at 3 p.m. - that took about a half hour - then right when I put her back, wide-eyed awake! AND STILL awake. That is a long time for her to be awake. I think she's working on a bowel movement...let's hope I'm right.

Tech Spotlight: Infant Hearing Test

If a Tree Falls in the Middle of a Forest ... As with any hearing test, the test equipment plays a sound for the subject to see if he/she will hear it. The central problem in testing the hearing of infants is determining whether or not they hear that particular sound. Of course it's easy with adults and school age children, you simply have them press a button every time they hear a sound. Ellie is not so cooperative. One way to detect whether or not she heard the sound is to play it so loud that she flinches. Aside from being very irritating for Ellie and her parents this wouldn't provide any information about how well she hears low volume sounds. What we need is a magical way of determining when she heard something. As usual when magic is required we turn to electronics. In this particular case we also need the help of some modern neurobiology. When a person hears something the ears send electrical impulses to the brain via the nervous system. As it turns out these impulses can be detected by sensors similar to the ones used for Ellie's EKG leads. As you can hopefully see in the picture the sensors are placed on Ellie's forhead (black), jaw (green) and at the base of her neck (white). (Click on the image to get a better view.) These sensors will detect the impulses in Ellie's brain stem. Then she is fitted with around-ear earphones. Finally the computer program plays a series of clicking noises. The clicking noises are all the same volume (35 dB) but in different patterns. The computer knows the pattern sounds that it has played and so it knows roughly what to expect from Ellie's brain stem. The software then "cross-correlates" what it expects with what it measures to determine whether or not Ellie heard the clicks. Now I know you're all thinking it, so I'll just say it: Technology is so cool!

5 Pounder...Cheeks a Rounder!

Well, this five pounder has been doing well so far today. Ellen came in and talked to us this morning about how proud of Ellie she is! She actually said that Ellie's head looks great for her gestational age. (This was good to hear because I feel like we've been trying and trying to get her to lay on her back with her head straight and failing miserably) So that was encouraging - maybe we won't have to have the helmet after all. We told Ellen she needed to get Ellie her 5 pound certificate and she laughed and said that she didn't even know if they had them here! Yes, that's right...our Ellie's a little porker in preemie world :) Praise Jesus she did have a small stool this morning - but not really a whole lot, so I'm anxious for her to get going on that regularity! Please continue to pray for Ellie's little bowels. Eye exam is schedule for tomorrow to see how the vessel behind the retina is growing. Ellen, also said this week will include a second head ultra sound (to check for bleeding on the brain) and a heart ultra sound (to check the PDA and her soft heart murmur). Big week of testing for our little girl. Ellen talked also a bit about her feedings. She's still going to continue her at one bottle daily. Ellie just isn't ready yet. She laughed and said, Ellie's weight gains are telling us she wants to go home, but her eating isn't. She said for some babies the light blub comes on and they progress really fast and some are slower. We're thinking Ellie's choosing the slow lane for this one, but AGAIN...I have to remind myself that she is only 34 weeks gestation and we're STILL asking her to do a lot! Ellen said that if the daily feedings still aren't progressing by next week, then the feeding consultant will come and evaluate Ellie. (possible change in nipples, etc.) Prayers for Mom and Dad as we are certainly hitting freak out mode for when we go back to Manhattan. Ben is really concerned about homework. We both feel like we "should" have been using this time more efficiently in getting homework done. Of course you always see the "should" have after it's done and gone! We're trying a "you go to be with Ellie and I'll stay at Ronnie's and do homework" shift this week. Hopefully it'll be productive! Also, prayers again for Ben and my relationship - as a loving, married couple - we sure do enjoy spending time together. However, at the same time, we've never spent THIS much time together. Prayers for our irritations and selfish moments. Thanks to Jesus for Ben being such a supportive husband and putting up with my cranky, I need more sleep moments. Oh yeah, prayers for that too because I know I'm going to get less and less sleep after she comes home! Side note about Ronnies: Please pray for safety and protection at Ronnies. A couple weeks ago one of the volunteers had their wallet stolen out of their car. Then last week, another NICU family got their license plates stolen off their car. Ok, I've ranted enough...until next time. Thanks for your prayers. Have a blessed Wednesday...it's Wednesday right? :)

Restless Heart

So Ellie's been a little restless tonight. We called the night nurse for an update a little bit ago and she said that every time she comes in Ellie is down at the bottom of the crib. She has seemed restless the last couple days. Maybe it's because she isn't stooling well. Other than that she's doing great though. She's only had one desat (self-resolved) so far tonight to go with her one desat during day shift. I hope you like the photo. I don't have the latest pics uploaded to the computer yet and I'm back at Ronnie's right now. So I thought I would upload this collage of photos I put together from Ellie's first month of life. I use it as the wallpaper on our computer. By the way: "Restless Heart" is a band that I think only Mandy and approximately two other girls in the entire world have heard of. One of those girls happens to be in Germany right now so ... I don't know what that has to do with anything.

Testing, Testing ... 1, 2, 3 ...

At her 3 pm feeding Mandy (with the help of the nurse) fed her from a bottle. Today we used a cross-cut nipple that has a slower flow that the regular nipple we used yesterday. The nurses decide which nipple they want to try each day. It must have worked pretty well: Ellie ate 15 mL from the bottle and gained 55 grams! That puts her at 5 lbs 1 oz (2300 g)! She hasn't stooled since the enema yesterday, so the true test will be to see if she drops back below 5 lbs when she does finally stool. Please pray for her stooling. No one has given us any indication that it would be a sign of a digestive problem, but we think of these things anyway. So maybe the prayer is more for Mom and Dad trusting that God will take care of Ellie. Now we are officially allowed to use a car seat designed for babies from 5 lbs - 22 lbs. (That's the range that most infant carriers are built for so it opens up our options quite a bit.) Actually we finally picked out a car seat today. We went to the Babies R US in Overland Park because we heard they have a ginormous Babies R US there. (Sorry OP friends, it was just a quick trip ... no time to stop and visit.) So we went down the long line of car seats and travel systems they had and finally picked one out. It is a travel system (so it comes with a stroller and car seat) and don't worry it's a nice purple color. Our KU nurse was nothing short of horrified. And as it turns out it is a 5-22 lbs car seat. Now that Ellie is a five spot and change (translation: 5+ lbs) it looks like our car seat will pass the test. Speaking of tests: Ellie passed one today. And she didn't even study for it! Apparently she got a hearing test a few days ago. That would have been fun to know about at the time. I bet it happened when we were in Manhattan. Anyway she passed in one ear, but didn't quite pass in the other ear ... the first time they did it. So they did it again today and sure enough she passed. Now she won't have to get her ears checked until she's in Kindergarten. The setup they used to test the ears was pretty interesting. (Ask yourself: How do they know if she heard the noise?) I think I'll do a Tech Spotlight on it sometime.

Oh by the way...

Ellie had a good night last night - one bradie and one desat. She tolerated all her feedings...no stools though. However, I did forget to say that yesterday she did have an enema which helped with the stooling...she had a big one...and yes, Mom took one for the team cleaning that one up. We're surprised she still gained weight yesterday after that one! :) Dad got to hold Ellie this morning through her 9 am feeding and boy, was she making some cute noises! She did have one bradie during it though - must have gotten too comfy! Miss Ellie has a hard time keeping her head straight while sleeping on her back - she sure likes to turn it to the side. This isn't helping with the rounding of the ol head. Last night actually before we left, we put her on her back and basically had bean bags on each side to hold her head straight. She had this look on her face like, "seriously, are you going to make me stay like this?" and was wide awake. We sang the fastest rendition of Goodnight Sweetheart and then left before we would fold. I realize that leaving is probably not the best solution, but well, we did...it's for your own good Ellie! Please continue to pray for Mandy and her skin irritation issues. She had a follow up appt at the Breastfeeding Clinic and they recommended being on the antibiotic for two MORE weeks. It's ok, since the medicine is helping, but still frustrating that it's not cleared up yet. Well, Mom and Dad Gramkow are taking a trip to Overland Park today to Babies R Us to hopefully finally decide on a carseat! We're planning on trying the bottle feeding at 3 p.m. if Miss. Ellie is giving us the right cues!

The Amazing Adventures of Ellie G

Thanks for tuning in to another episode of The Amazing Adventures of Ellie G (read with a booming voice). When we left our heroine she was a stocky 2225 grams but after gaining 20 grams she has reached an Amazing 4 lbs 15 oz (2245 g). What superpower enables these incredible feats? Mom's milk ... it does her body good! Crowds were amazed earlier today when they saw her gulp down 10 mL from a bottle held directly by her father's hand. When asked how she will ever top these feats she simply smiled and wouldn't say a word. True to her dramatic flair she is going to keep us all in suspense about tomorrow's episode of The Amazing Adventures of Ellie G. (seriously, read it with a booming voice even if you have to go get someone with a booming voice)

Ellie in Manhattan - "few-weeks-ish"

Miss Ellie had a great night last night. She had only 1 desat and no bradies. Since she gained some more weight, she got her feeding increased to 45 mL. Wahoo! They replaced her NG tube (so now it's in her other nostril) and they do this every 7 days unless Ellie takes it out herself before then. We do have some new prayer requests: Ellie has developed a umbilical hernia (which they said she probably has had the whole time - is common in preemies) which is showing now. Ellen, our nurse practitioner, (who's back today! WAHOO!) said that it should be completely gone before 2 years old - before they would do any sort of surgery. Also, Ellie's stooling patterns have changed. They said this is possible as Ellie gets older, but she hasn't had a bowel movement for three days - so she got to have a rectal temp today at 9 am. If that doesn't work, then back to an enema. Praise Jesus though because she hasn't had a distended stomach or anything like that and her bowel sounds active every assessment - she just hasn't pooped! Ellen was SO proud to see Ellie's progress while she was away and was very optimistic about her progression. They are going to keep her on nipple (bottle) feeding daily for a while - just so she can practice that coordination of suck, swallow, breathe...but not too much to exhaust her. Our new anticipation is "what time will she want to eat for her "one" bottle feeding today?" Who knows, maybe Daddy will try to feed Ellie today! She's been a good girl so far today. She sure wiggles out of her snuggly a lot though and will arch her head back. I told her she needs to stop doing that - or she'll have to wear a helmet when we get home. Oh..and Ellen said that maybe we would introduce trying breastfeeding next week. So that is also exciting! Then she also mentioned that we'd be home in - a "few weeks-ish" Scary and exciting all at the same time. Oh, how if feels so good to hold and now feed her bottle to her...so real! I think I'm really going to like this mommy thing! Oh, one more thing: Ellie is really excited to meet her new baby cousin - Renae and Micah are due with Baby Boy tomorrow! Prayers for them as they prepare for a new little one to join the family and most importantly - a safe delivery! We enjoyed having Grandma and Grandpa Weber and Aunt Wendy here to visit this weekend. Although it was very tough for them not to touch Ellie :) Dad of course couldn't sit still very long so he would make periodic trips to wander and one afternoon he made apple bars and apple pie (with the volunteer who actually taught him some cooking tips) at the Ronald McDonald House! Grandpa Weber also brought some pumpkins and gourds and gave them to the kiddos who were staying at the Ronald McDonald House with us. They were pretty excited about them! It was too cute. Well - enjoy some more pictures of our little princess!

Bottoms Up! Mom feeds Ellie!

Ellie has had a good day. This morning Ellie had no bradies and desats all day! We had to wait and see if she was alert for her one nipple feeding and decided to try the 3 p.m. feeding. To my surprise, the nurse asked if I wanted to try! Of course I did! I sure was nervous and asked lots of questions. So today at her 3 pm feeding I gave her the bottle! It was difficult to get the nipple in because her natural response is to curl her tongue to the roof of her mouth. And her mouth is so tiny... it was hard to see inside there! She did have some milk falling outside the corners of her mouth. Her fat pads aren't that strong yet, so you'll have that! She also was getting pretty tired, so after all was said and done she took 12 mL and gave us two good burps, one wasn't even prompted! Wahoo! And the results of her 9 pm assessment are in: Ellie gained another 45 grams to put her at 4 lbs 14.5 oz (2225 g)! Good work Ellie Belle.

Saturday Night Fever

(minus the fever) The Saturday Night Assessment is always action packed because we get head circumference and length measurements. Tonights numbers are looking pretty good: head circumference was 31 cm and her length was 18 inches! That's a growth of one full inch of length in the last week! Her weight was 4 lbs 13 oz (2180 g)! That's a gain of 56 grams! What a good girl! After the assessment we go to see her take a bottle for the first time! She did wonderfully: she ate 23 mL from the bottle! Mom and dad had a lot of fun watching and are very proud of how well she is doing! Wow! That was a lot of exclamation marks! After a while she started getting sleepy, but then again her dad was getting sleepy by then too. The nurse burped her every 5-10 mL. She did give us a couple burps, but she was pretty reluctant to burp. I think that we need to tell her that even princesses are allowed to burp when they're this age.

Her Father's Daughter

There's one thing we know about our little girl: When she wants to do one thing, heaven help whoever wants her to do something else. I think she gets that from both sides. Well Ellie hasn't taken a bottle yet today. The nurse said she might have taken it at noon, but we were eating lunch with Grandma and Grandpa Weber and Aunt Wendy and the nurse figured there would probably be a better opportunity when we were here. So at 3:00 the nurse checked, but Ellie was asleep. She woke up as we changed her clothes and diaper, but the nurse had already decided not to give her the bottle. Then we tried to get her to go back to sleep but she did not want to ... so she didn't. She went to town on her pacifier. I think she figured if she just sucked hard enough she would get something. But as much as we tried, we couldn't make her go to sleep. We just tried again at her 6 pm feeding and she didn't want to wake up. We of course weren't trying to wake her up ;) but we did change her diaper and even the cold wipe wasn't enough to get her to open her peepers. She was wearing the pink and brown outfit below, but even the jostling from putting her pants back on didn't wake her up. When she wants to sleep, she sleeps. Hmm, who else do I know that ... zzzzzzzzzzzzzzzz

Project 3 Complete

Okay let's review: Project 1: Breathing Project 2: Feeding Project 3: Controlling Her Own Temperature The numbers I assigned based on when she started the project. She's completed project 1 since she's breathing on her own with no breathing support, although she continues to have desats and bradies. Project 2 is feeding. As you know, she's still working working on the final stages of Project 2. The first stage was to move from IV fluids to milk delivered through a feeding tube. This was significant because her digestive system had to work for the first time. The final two stages are to eat from a bottle and from a breast. Project 3 is regulating temperature. She's been in a crib wearing no more clothing than she will at home for about a week now. And her temperature has remained fine the whole time. So now I think it's pretty safe to say that Project 3 is complete.

Ellie G vs The Bottle - Round 2

Today Ellie took her second bottle ever and she performed wonderfully! She surpassed all our expectations! She ate 30 out of 42 mL straight from a bottle! Our girl just ate an ounce from a bottle, and at only 34 weeks 1 day! Well unfortunately we didn't get back to Ellie in time to see her second bottle ever. Sad. What we did get back in time to see was no less exciting, but not in a good way. We came in to see a nurse Ellie has never had before. The nurse barely even looked up because she was busy cleaning spit up off Ellie. It was about a quarter till her 9 pm feeding/assessment and Little Miss Ellie had spit up and then stopped breathing long enough to trigger the alarm that phones the nurse. We walked in just in time to see the nurse wiping spit off Ellie and suctioning it out of her mouth and nose. Ellie was still having some trouble breathing and the nurse sat Ellie up and gave her a few pats on the back. Soon Ellie was breathing again and doing fine, but it seems that babies recover from these things much more quickly than their parents. It was amazing how much older she looked. All we could do was watch and as we did she had a dazed look of shock on her face. She looked like a tiny adult who had just a vague knowledge of what was happening to her and was just trying to get through it. I'm not sure who grew up more: Ellie in the last couple days or Mandy and I in that couple minutes. A nurse we've had several times came by right after this all happened. It was clear that she didn't know what had just happened and was just coming by to say hi. So it was a blessing that she stopped by because Mandy definitely needed a familiar face to talk to. The nurse explained Ellie was basically freaking out because of the spit up and therefore held her breath. She said that it was a good thing that Ellie held her breath because that way she didn't breath any spit into her lungs. Although she said you don't know for sure if she breathed any in.

Letter To Ellie

Dear Ellie, I am writing you this letter because mom and I had to go back to Manhattan for a couple days. We were only gone a day and a half, but it seemed like we were away from you for longer than that. Mommy had to go see the doctor to make sure she was recovering okay from when she gave birth to you. We also wanted to make sure that we got our apartment ready for you to come. So we spent some time cleaning up and getting your new clothes put up. We saw some friends while we were in town and we also saw Uncle Wade and Aunt Caryn. They all asked how you were doing and we told them how wonderful you are. We had lots of people tell us that they really enjoy logging on and reading the blog. We have also had lots of people praying for you. We're all anxiously awaiting the day that we get to take you home with us. But today we're coming back to you ... and we can't wait to get back and see you. Love, Mom and Dad

4 p.m. Update

Just called the Nurse and Ellie's doing fine! Kind of a no news, good news day, which I'm not arguing with one bit. The nurse had a student following her today and they gave Ellie her bath and she tolerated that well. She's done well with all her feedings - no residuals. She's only had a couple desats and has no bradies today. Yippee! She's been sleeping a lot and hopefully saving up that energy to bottle feed yet today for her "one" time. Hopefully we'll make it back to Topeka for her feeding at 6 p.m. Not sure if they'll try the bottle or not - she's gotta tell us if she's up for it :)

Baby Ellie's First Bottle!!!

Good news! When I called to check in on Ellie at 5 p.m. they the nurse said, "are you ready for this?" and I answered an anxious "yes." She said that Ellie got a doctor's order to try nipple (bottle) feeding one time per day. So this is different then the cue based feeding. Whereas cue based means she can eat from the bottle anytime she looks alert, awake, is looking for something to suck. So one per day is basically a stepping stone to cue based. So we were happy! She turned 34 weeks gestation today, so that's why they decided to try it. So at 3 pm, the nurse said she was really sucking on her pacifier, so she decided to try. She said at first Ellie looked at her like she was crazy - that first feeling of "what, some thing's coming out of this when I suck!" Understandable :) And then Ellie took 6 mL! We're SOOOOOOOOO proud! The nurse considered that a success! And then she said Ellie looked really exhausted after that. Again, understandable. So, I was sure surprised when I called because before we left this morning - she had no new orders and I wasn't getting my hopes up to high that she'd be ready for the bottle. So what a pleasant surprise. So we'll see when the next "time" she gets to bottle feed is...we hope we make it back for that one, but we'll see. We're sure having a hard time getting things cleaned and sorted! Oh, the decisions. Nothing like "nesting" after the fact! Oh well! And then tonight we called in about her 9 p.m. assessment. Ellie, EVEN with all that energy toward eating from a bottle, gained 20 grams. So now she's at 2120 grams, so that's 4 lbs. 11 oz. Wahoo! What a good girl! The nurse said that Ellie all day had only 2 self-resolving bradies and 1 self-resolving desat. Since 7 pm, she hadn't had any. Although the nurse said she was a bit fussy and wasn't like being on her back in the supine position. So hopefully she settles down and takes some good naps to work up that energy for Bottle #2 tomorrow! Oh, and even though I'm signed in as Ben, this was Mandy...as if you couldn't tell! :)

Steady Morning for Ellie

Today they are going to try to see how Ellie tolerates the 42 mL over 40 minutes and then keep going lower. Otherwise, no new orders. Still no order for cue based feeding (which means she could start eating from the bottle). Ben and I are in Manahttan today and staying until tomorrow - we're trying to get our apartment ready and cleaned for Ellie to come home! Still no real estimate when that would be, but we know it'll come fast! It is good to be back in Manhattan again. So, we'll try to get updates to the blog when we can! I have my 6 wk check up with my Dr. as well tomorrow. Oh...and we totally told the nurses that they are in charge of keeping track of something for Ellie's princess sticker while we're away. We have such great babysitters! :)

I Love My Mommy's Snoodle

Exercising AND Gaining Weight

Ellie had another workout (physical therapy) with the Occupational Therapist (OT). She did so well that the OT promoted her to some more advanced exercises. Ellie's first 9 o'clock assessment just finished, the numbers are in: she gained 65 grams! That puts her at 4 lbs 10 oz (2100 g)! Another great gain for Ellie. That puts her feedings up to 42 mL. So she's exercising and gaining weight. Amazing!

All Is Fair In Love and War

And of course when I say "Love and War" I mean "parenting". Mandy thought I was being a "blog hog" yesterday by having two pictures of Ellie and me in one day. Hey, I can't help it if I was having a good hair day. I tried to argue that it was fair because "All is fair in ..." well, it didn't work. So here's a cute picture of the most wonderful two girls around.

Wednesday Morning

So Miss Ellie had a good night last night. No episodes of desats or bradies. Good job Ellie! She's up to 41 mL now (maybe I mentioned that before). They've been really trying to work on positioning for her head. They snuggle her in her snuggly, but she seems to wiggle out a lot! We got to give her another bath today and now she has a cute fuzzy purple outfit that says princess on it to match her clean fuzzy hair! No new orders today. They are continuing to feed her over 45 minutes instead of an hour because she's tolerating it well. They said that if she has more desats and bradies then they will do an acid reflux study. Also, due to staffing assignments (they had too many babies on the 8 feeding schedule, they've changed her to the 9 feeding schedule. So she'll eat at 9 am, noon, 3 pm, 6 pm, 9 pm and midnight. So this does mean that we won't find out how much she weighs until 9 pm now. Oh well! We did her bath today at 11, so they started her feeding for the 12 noon schedule. Ben's holding her and of course she looks comfy!

Content Warning

So apparently someone on Facebook reported this blog as containing "abusive" content. But just looking at that smiling face who can find any hint of such things. I'm thinking someone may have accidentally reported it as offensive. But I emailed Facebook about it and I think the matter will be cleared up shortly. In any case you have obviously not been prevented from viewing the blog, which is good. But in this age of frivolous lawsuits I thought it might be fun ... er necessary to provide a proper content warning to the readers of this blog. So here goes. Warning: This website may contain images of children under the age of 2 months (34 weeks gestational age). Some images may contain misplaced EKG leads (aka wardrobe malfunctions). This website may also contain mention of a certain method used to obtain food for infants. Since this is a natural process it is easy to see why some would find it offensive. Readers should also be aware that the materials shown in the pictures may not be organic and may have been processed on equipment that processes peanuts. The content of this blog does not include a warranty of any kind and may cause loss of sleep, laughter and/or crying.

8 p.m. assessment

Ellie gained 20 grams today - so she's still actually at 4 lbs. 7 oz. Today we concluded was a stable day. The doctors did not write any new orders. She's still getting 40 mL of milk. She has had a few bradies and desats. Ben's holding Ellie right now and it's pretty cute. She's in a sleeper with out a blanket - so funny how she looks so different with what she (I mean we) chooses to wear. Hopefully Ben and I can get some more homework done tonight! Blessings and thanks for your continued prayers. Please pray for the days to come - I know I'm getting comfortable with where things are right now, but it will definitely be a differnet story when we get to start feeding a bottle to her. Hopefully that will happen sometime by the end of this week! So far, today's not the day.

Because I can...

I thought I'd post a couple photos from today. Ellie's been fussy today - not sure if it's because she's trying to poop or burp or what... I'm sure it's the first of many fussy times :) But no worries, Mom keeps putting the laptop down to check it out! Today's been pretty low key - I am not arguing one bit! I've been able to get through e-mails and got some work done for Jardine! Yippee! It IS possible. :)

Tuesday Morning Update

I am so not as creative as Ben on the ol Blog titles. Mine end up being a song... imagine that! Ellie had a good night last night. She got the Hep B vaccine and the nurse said she cried and so she held her for a while. So nice of her! :) This morning's report included only one brady and desat, so so far, so good. She's sure growing and oh, so cute! They haven't written orders yet for Ellie. She gets her orders written last (or near the end) because she's not on IV fluids anymore. Now we're watching like hawks to see when she can start cue based feedings - the nipple feedings (bottle). It'll be a combo package however because whatever she doesn't take for the bottle, she will get gavage (thru the nose tube). Also, she might start out on only 1 bottle, and the rest gavage...she's just got to give us the cues! Today's assessment indicated that she's still not ready. She's had to much mucus in her nose. So obviously, it's a bit hard to breathe when you're sucking as well. So until then, we'll keep practicing with the pacifier. They said it's typical for these preemies to have mucus because they've had so much trauma to their little noses. So no indication of a cold, being sick or anything like that...phew! Ben and I had a good night bonding last night - we went to Dairy Queen and ordered ice cream thru the drive thru even though it was raining and super cold! Ben even said through the ordering speaker - "it's a great day to order ice cream, I'll have a..." I died laughing. Guess you had to be there! :)

NICU Sprawl

Here are a couple good pics of Ellie all sprawled out at her 8 o'clock assessment tonight. She weighed a whopping 2015 g this puts her at 4 lbs 7 oz as well as getting her over 2 kilogram mark! Yet another milestone left in Ellie's dust! Now that she is over 2 kg she can get her Hepatitis B vaccine. This will be her first vaccine ever. Some of you may notice that in the lower picture (where she is getting weighed) that the scale says "2020" as in 2020 g. That's right, she was tipping the scales at 2020 grams and then that 5 grams must have melted right off before the nurse looked at the scale. Ellie must have thought she was getting too fat. No girl, far from it. Addition by Mandy: Actually the nurse reweighed Ellie - the 2020 was from the first weighing - there were some wires pulling on the first one.

Oh what a Beautiful Morning

Ellie had a good night last night. We actually went back to Ronnie's to rest up right after supper last night and so had to get the assessment stats over the phone. She gained a bit - she's up to 1980 grams - which is still 4 lbs. 5 oz. When I called Nurse Amy was saying that she was looking at Ellie and she was about trying to chew on the snoodle (Yippee...maybe she's getting closer to bottle feeding!) She's starting to be more attentive come feeding time and is rooting some. Yippee! All day yesterday she had 4 self-resolving desats and only 1 bradie! This morning when I called she had had 2 self-resolving desats, but was tolerating her feedings well. They moved her up to 40 mL. They also did labs this morning and said her biliruben was slightly elevated and her phosphorus was too. Not sure what they'll do with that. Dr.Mansurry is writing orders today and Ellen (our nurse practitioner) is out of town this week. Right when we got here it was bath time! She didn't cry much this time...which is good..we want her to like baths and be a swimmer! :) Now Dad's holding Miss Ellie and having a good time. She's getting close to 2 kilos in weight which is when she gets her Hep B shot. Lovely, but then again, I guess she's used to being poked. Ok, we'll try to get pictures posted soon. Oh, and for Ben's interview - it's now scheduled for October 28 at Garmin's HQ in Olathe. He's looking forward to it. He also got an offer in writing from Cessna. God is good. We'll have somewhere to go for sure after graduation! Yay!

Sunday Update

So far so good for Miss Ellie. She's had under 5 desats and has tolerated her feedings well. They moved her up to 39 mL based on her weight gain last night. Ben and I went to Topeka Bible Church once again and had a great time of worship. We immediately came to Miss Ellie so Ben could hold her during her 11 am feeding. I got to hold her at her 2 p.m. feeding and I'm trying to learn how to sleep with all her noises. My nap is failing miserably. But it's so cute to hear the noises too! She seems to be maintaining her temperature well in the crib. They moved out her isolette so now it's official. :) Hopefully she won't have to go back in that isolette. Please pray for rest for both Ben and I. Thanks for your prayers for my skin irritation. It is clearing up. However, now I believe to have discovered a plugged milk duct. :( Seriously, this is getting REALLY frustrating! I'm meeting with the Breastfeeding clinic first thing in the morning.