So hard...

First off, I want to publicly apologize for using Ellie's blog as a way to vent my frustrations about the past couple days. I wish I could say that I am a woman of great strength and faith, but I sure have fallen with all the worldly things that have come my way lately. Someone very dear to me brought it to my attention and I am asking all of you who have read the past couple posts to please forgive me for my words, my attempts to blame someone for the things we've had to go through. It's so hard, but it's no excuse. I would hope all of you know that God is a very important part of both Ben and my life, but my past actions would not necessarily exemplify it. I admit - Since being home...I want control, I want answers, and I apparently want someone else to blame for what we've had to endure. I guess it just didn't hit me as much until I got home and it's now just Ben and I...Ellie's our pride and joy, but our responsibility. It saddens my heart to notice all the sin that is apparent in the world now that I'm a mom. But I too must remember that I sin, just like everyone else. Again, I don't know why these things have to happen. I just have to trust that God knows what He's doing and that He's put Ellie in the care of medical professionals that are perfectly able to do just that...care for her. I guess I need a lesson on trusting the people God's put in our path for Ellie too. We are very blessed to have Dr. Duff as our pediatrician and Lord, forgive me in the ways in which I have been so angered and bitter toward the staff there. I should have been turning to comfort from you rather than just filling myself with emotions and anger toward someone who in my eyes could be worthy of the blame. Lord, heal my brokenness. Lord, hold my heart and please remind me daily that Ellie is Yours and that you have protected her thus far and will continue to protect her - synagis or no synagis. Help me to let you carry Ellie rather than trying to carry her myself. I can't do this alone. Thank you Jesus for your grace and allowing me to come back to you even when I disappoint you. Thank you for the gift of Ellie, thank you for the people still continuing to pray for her, thank you for the people who love us and are walking life beside us, keeping us aligned with Your will. "Your child is in God's hands... she has been from the beginning. You are feeling the weight of the large and precious responsibility that the Lord has given to you. With it comes incredible joy, opportunity, delight, hope and dreams unimaginable. With it comes tremendous heartache, frustration, confusion, self-doubt, suspicion of even the most common things. Though she is home... she is still the Lord's... not yours. Her life is in God's hands and no amount of anxiety will pry His grip from her... no matter what we do."

New Neighbors

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

And Down The Stretch She Comes!

Today Ellie got bumped up to taking a bottle at every other feeding! When we talked to Ellen she said she felt that Ellie had been nippling (i.e. eating from a bottle) very well yesterday and was ready to take the step to nippling at every other feeding. That's a big step toward going home! Ellen also said that if Ellie continues to improve and do well we might go home in as little as a week! Wow! That's really exciting! But it also brings up feelings of anxiety from wondering if we're ready to bring her home. We had a talk about all the preparations that we'll have before we take her home. Ellen ordered Ellie's home monitor and when it comes we'll have about an hour of training on how to use it. We'll also take a class on infant CPR, we'll have to check the schedule to find out when. When the results of the acid reflux study come in we'll know whether or not she will go home on Prilosec. And close to when Ellie goes home Ellen will calculate how much caffeine she'll go home on based on her weight at the time. (Ellie's weight, not Ellen's.) Also the dietician will come by and show us how to mix the formula. We've already talked a little bit about how we will administer the caffeine and the vitamins she'll go home on, but I'm sure they'll go over that again around then. The day before she goes home she'll get an RSV shot. And a day or two before she goes home we'll have to do a car seat trial. The nurses will make sure Ellie fits properly in the car seat and she'll have to sit in it for an hour and they'll observe her. We also need to install it in our car before then and go have someone check it to make sure it's installed properly. Hopefully I'm not leaving anything out, but I'm sure they won't let us forget anything. (By the way we did get her social security card. It is safe and secure in Manhattan ... and we can't remember the number. Oops.) Please pray for us as we try to cope with the news may be going home sooner than we thought. We have to remind ourselves that this is an answer to our prayers. I'm reminded of the old saying: Be careful what you wish for. As I said we are very excited to bring her home, but we are also anxious about having her all on our own. We're anxious about how our life is going to work out, how our schedules are going to work out, when we're going to sleep ... Please keep us in your prayers. Oh, also pray that we won't get too excited/frustrated if she takes another step back. Update: The discharge nurse / educator just came by and talked to us about the CPR class. We're going to take it Thursday evening. They also go over medications during the first part of the course. Hopefully by then we'll know if Ellie needs Prilosec.

Looking Ahead

At the 6 pm feeding she ate 15 mL from a bottle. That's not quite what her numbers were before. We were getting pretty excited when we heard all the big numbers, especially when we heard that she finished two bottles. After her 9 o'clock assessment we found out that she lost 20 grams today. That puts her back at 5 lbs 15 oz (2690 g). We were getting our hopes up for Ellie to break 6 pounds tonight. But maybe next time. She also had a smear at her 9 pm diaper change and she had 12 desats during the day today. So now we're wondering why she only took 15 mL at this last feeding. It happened to be time for her to take her vitamins. Usually they put them through her feeding tube, but this was the first time she had them mixed in with her bottle. So maybe she didn't like the taste. We're also wondering why she lost weight. This was her first day on her home feeding schedule: Six feedings of just mom's milk and two feedings of formula. We're wondering if this had anything to do with any of the above. Please pray for her tests tomorrow. It will be interesting to see the tests performed and to see what the results are. It will also be interesting to talk with Ellen about Ellie's feedings.

You Learn Something New Every Child

I am amazed at all that Ellie is teaching us. Through this whole ordeal we have seen God's generosity and provision. God has provided for us in too many ways to list and it would be self-centered of us to think that we deserve it. When we look around the NICU and listen to the stories of parents who are staying at the Ronald McDonald House we see plenty of families more needy than we are. What exactly are we to learn from all this? Perhaps we are to see that life is not fair even in a world created by a just God. Perhaps we are too weep for those who leave the NICU with heavy hearts rather than rejoicing. Perhaps we are simply supposed to open our eyes and see the need around us. God has opened up a new part of His creation to us and allowed us to see what life is really like. The burning question remains: What are we going to do about it? It is difficult to imagine, but I remain convinced that we will learn as much from each of our future children as we have this time around. Perhaps we are being prepared for future lessons even now.

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.

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.

Hanging Out at Ellie's New Crib

Mandy held Ellie at her 5 pm feeding. Then instead of returning her to her isolette we returned her to her crib. Now Ellie is chillin' in her new crib! The crib is pretty cute so we had to get some pictures. Don't worry, we got the powercat transferred over. Although it only has so many unstick/restick cycles left in its valiant lifetime. Needless to say Ellie is getting cuter and cuter and her transition to the crib was no exception. Now that she is in a crib it is amazing how much more we can here her. Every noise is both cute and distracting. Mandy and I agree that this seems more normal. Although neither one of us probably has a good idea what normal is anymore. We have also noticed that she is more susceptible to the noises in the room. We are doing our best to keep even quieter than when she was in her isolette. We're using indoor voices that would make even Marian the Librarian smile. But our main concern now that she's in a crib is her increased exposure. Since she is exposed completely to the open air she is more at risk for the passing of germs from parents and visitors. As a measure of caution we are asking that we have no visitors this week. (I know...this is really hard for us, trust me!) We think that this will be best for Ellie as she transitions from isolette to crib. Please pray that she will remain healthy during this time. Also please pray that we will be able to spend some time doing homework and find some time to take a trip to Manhattan before she starts bottle feeding. Ben and Mandy

Take a Deep Breath

Ellie is back off of the high flow nasal cannula! So for the fourth, and hopefully final time she is completely off breathing support! Good job Ellie! Better yet, she is doing well with her breathing. She has only had about half a dozen breathing episodes since 8 am when she was taken off her breathing assistance. Her isolette temperature was also lowered again. It is down to 27.4 deg C so she is almost ready for the crib. She is also getting close to being ready to start bottle feeding! Hopefully she will start trying that within a week.

Mandy's skin issue is starting to clear up now. Praise God for that! She has been very uncomfortable and unhappy about the whole thing. So we are both looking forward to it continuing to get better.

News News News

Well that was the evening news. Now that it's morning I guess it's time to start on the morning news. Ellie has already been breathing much better with the high flow back on. It will be interesting to see how she progresses over the next week. Dr. Hall actually stopped by to check on Ellie when Mandy and I were there. She answered some of our questions and pointed out that the next couple weeks will be pretty big for Ellie. Soon she will transition to a crib. That's a big step but it means she'll have to do a better job of regulating her own temperature. She'll also have to spend some calories to keep warm which means more modest weight gains. It will also remove the protective barrier (formed by the isolette) from Ellie. This will increase her exposure to any germs that might be floating around in the room. Please pray about these two things. She will also be starting bottle feeding sometime in the next two weeks. This also takes more calories and tires her out. It also poses a potential for emotions to run high if she struggles. Please pray about this as well. I'm not sure how soon she'll be able to start breastfeeding. It depends on her really; she has to take an entire feeding (all 35+ mL) from her bottle before she is allowed to transition to breastfeeding. That transition poses even higher potential for emotions so please start/keep praying for that as well. That's all for round 1 of the morning news. For those of you who are still awake: Go to sleep! (I'm talking mainly to myself ... but then, I do that often.)

Splish Splash ...

Today we gave Ellie a tub bath (long about a Monday afternoon) for the second time and it was fun for the second time. I really enjoy any excuse to hold her, especially when she is awake and looking me in the eyes. So far she holds up pretty well during baths. The only time she has cried during her first two baths is when she is completely exposed without anything restraining her. As soon as we get a blanket or our hands around her to swaddle/cuddle her she quiets down. She didn't even cry when we accidentally pulled her N.G. tube out. Oops, sorry Ellie. She did squirm when the nurse put a new one back in and cried a bit when the nurse was changing the tape that holds it in place. Overall though, I think she's one tough cookie ... with a soft center of course.

Ellen had some basic nutritional labs run and the results came back completely normal. Ellen mentioned that sometimes the levels are a bit off and they can adjust the amount of iron, calcium, etc. in the baby's diet. But no need to adjust Ellie's feedings. Always wanting to impress, Ellie told me she was not content with her marvelous nutrition and hygiene. She also wants to be able to eat her food by herself and get rid of that silly N.G. tube for good. (She's always pulling on it anyway.) So she decided to work on her sucking today and she sucked her pacifier throughout an entire feeding today! Her feeding lasted for 30 minutes! Preemies her age are doing pretty good to stay awake for 30 minutes, let alone suck on their pacifier. Ellie knew she couldn't stop there because her parents would be eager to see the results from her assessment, especially her weight. She also knew it would be tough to have a good weight gain with all that excercise she got today. But true to form she was able to pack on the ... grams. She gained another 20 grams putting her at a solid 3 lbs 14 oz (1770 g). So Ellie has had an all around great day. Unfortunately mom hasn't had such a great day. She's been having skin problems probably caused by pumping. The lactation consultants are trying out a set of treatments today, but if they don't work Mandy may have to revisit Dr. Bonebrake tomorrow. Please pray for her skin and her emotions / stress level during this time.

Looking Ahead

I'm happy to report that Ellie has been doing well since we last blogged. Over the night she had 18 desats and 1 brady, all self resolved. Since 7 am this morning she's only had 2 desats. So she continues to breath well without any breathing support. Pray that she will continue to breath well beyond the next couple days. She still hasn't really had any stools since her 24 hour break in feedings. She had a smear this morning, other than that she hasn't had a stool since 11 am yesterday. So if she doesn't have a stool at her 11 am feeding today hopefully she will at her 2 pm feeding. We are also looking forward to our care conference this afternoon. We are pleased to once again have Dr. Hall as the physician on call today so she will be the doctor at our care conference. Remember Ellie doesn't have a particular doctor assigned to her, but Dr. Hall is the one who keeps popping up at significant times. (i.e. her birth and our first two care conferences) We thank God for that, even though we know the other doctors are quite capable too.

Fatherhood

This morning's early report indicated that it was a quiet night, and our little Ellie wasn't too fussy. She didn't like being on her back last night. And she's become quite accustomed to her pacifier. Ellie had one major episode, but the nurse said that she was laying on her pacifier and it had pushed her cannula out, so he wasn't sure if that would count against her. She had a total of about 10 desats which was better than the 30 she had during the day. We're not sure if Ellen will end up removing her nasal cannula today or not. Ben gave me the gift of getting away for a couple hours last night. My good friend Dana called me at the last minute to got to the Carrie Underwood/Little Big Town concert last night here in Topeka. Thanks so much Dana and Rob! Little Big Town is awesome - four part harmony - oh, so good! Boy it's sure hard to leave Ellie, but it was just what I needed. Plus, I knew Daddy would take great care of her! When I got back it was so fun to hear her report from Ben. He's so wonderful at this father thing. I asked if she was really fussy (since she of course is still realizing that she cannot eat until 3 p.m. today) and he said yes, but she was consolable. Lots of talking, singing (she seems to like this especially) and Ben said they started reading from the Gospel of Mark last night - it was time to talk a bit about Jesus. :) He held her kangaroo style and she liked that. She slept through the entire hour...oh, how neat that we can have these moments of really feeling like we can console our little girl. Daddy was also great at reporting to Mommy's million questions. Ben also told me that he decided he was going to fast today with Ellie. Of course that brought tears to my eyes. He sure loves that girl. What a great father and husband I have ... Thank you Lord for Ben. Prayers for Ellie's little tummy today as we're all looking forward to when she can get replenished with food! Prayers also for Mommy and Daddy to do homework. It turns out that's not going so well. Thanks for praying for Ellie yesterday, she definitely got a princess sticker for making it through what hopefully will be her one and only blood transfusion. Much love, Team Gramkow

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

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.

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.

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 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!

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.

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!