But she has great socks

This is pretty much what Hope did all day. She is still drugged up, though they are weening her down on her pain meds and on her ventilator settings. She did open her eyes some this afternoon - they even seemed to focus a couple of times. She hasn't had any morphine since this morning so she's starting to wake up after her 3 day nap. Her belly, which was an "angry red" a couple of days ago, has gotten much better. She's not having near as many desats today, and those she has had have been much shorter. So overall I'd say we're past the worst of it. I can't wait until we start losing some of these wires and I can dress her again. For the time being she'll just wear socks. :)

Mike and the boys came up on Friday to join us, which was really nice. Everyone got to see Hope again finally. The boys even got to rub her fuzzy little head. The whole family is excited to get her home.

The kids were also really excited to discover a present left in Hope's room for all of us. It had everything from card games and books to snack mix and chocolate. Esther and Danette, you ladies are wonderful!

Thanks to all of you who have prayed for this little squirt. It has sure made a difference.

Hernia pics

Just thought I'd share some shots of what Hope's hernia looked like before surgery. The surgeon said it was the worst he's ever seen and that it was very impressive. In these pics the nurse had smeared it with a barrier cream so that the diaper wouldn't irritate it. So glad it's been taken care of. Hope was pretty out of it all day. The nurse was having to give her pretty serious pain relief. Please pray that she will feel better quickly.

Recovering

Thank you so much for praying for our girl. Her surgery went well and they don't expect her to have any problems. There was a stricture where there had been some damaged bowel and when it healed it closed shut. The surgeon had to make an incision there but he did not have to remove any bowel at that spot. He made the incision vertically but sewed it back horizontally to widen up the area. There was also an ulcer just up from the stoma. The plan had always been for the surgeon to remove just a little bit more from each end of the bowels so that he would have fresh ends to sew together. So when he saw the ulcer, he just removed a little bit more. He seemed pleased with how surgery went. The nurse practitioner was saying today that she can probably be home by Thanksgiving. She will need to go back 10-14 days after discharge to follow up with the surgeon. Please continue to pray for her healing and for things to go well when they start to re-introduce her feeds (5-7 days from now).

The Hopester is doing great. She is such a trooper. She is back up to 5 lbs 1.5 oz. She is ready to go for surgery tomorrow at noon. I was happy to hear that they won't intubate her until she gets down to the O.R., so she'll be awake and happy when I get there tomorrow morning. Well, her last feeding will be at 3 am, so maybe not too happy. But she won't be doped up and hooked up when I get there. Please pray her through this surgery. I'm excited to have her put back together, but hate to put her through another surgery. Please ask God to be merciful and let her have a minimum of discomfort.

Also, Mike and the boys were supposed to be coming up tomorrow evening to join Mary and me. They are not feeling well. They all just had flu shots, so we're hoping it's just a reaction to that and not another illness. O Lord, please, please, please keep germs away!

Mary is up here spending some time with me doing girl stuff. We went shopping and she did my hair this evening. She went in to see Hope this afternoon but didn't seem excited like I'd expected. I think she felt uncomfortable in the new hospital, but I also wonder if she was scared because of Hope's ostomy bag. She also didn't like wearing a mask, which we both did because we don't know what's going on with the guys. She finally loosened up a little and tried playing peek-a-boo with Hope (who is not quite getting it yet). That was pretty cute.

I will try to post tomorrow afternoon as soon as I get home from the hospital. Surgery should take about 2 hours, so don't expect news until mid-to-late afternoon. Thanks so much for all your prayers.

Getting Ready

Hope is scheduled for surgery to reconnect her bowels on Thursday at noon. Please be praying for her as she goes in. This is our last big hurdle before we can go home. Please pray that it goes smoothly and that she bounces back quickly.

Other tidbits.... Hope had a blood transfusion today. They had wanted to avoid that because they think her funky numbers were due to all the transfusions she's had. She was anemic, but her bone marrow was starting to work and they were hoping her body would take care of it given enough time. However, now that she's scheduled for surgery they decided she didn't have the time. Along with the transfusion, they gave her Lasix to help her pee off the excess fluid. It must have worked because she lost 45 grams. She also had her barium enema today and that apparently went well. She slept through it, so what more can you hope for? We haven't heard any results yet, but the nurse assured me that "No news is good news."

I came home today so that I could take the kids for their flu shots. I gave them all suckers to suck while they were getting their shots. I decided to try this since this is what they do for the babies in the NICU and they say it's proven to work. (They don't give suckers exactly, but sugar in some form.) I don't know if it was because of that, but no one cried.....not even Andy. He did look at the nurse and say, "Ow." So that went pretty well. Tomorrow I will take Mary up to spend some one-on-one time and Mike will follow with the boys on Thursday. The kids are looking forward to seeing their little sister since it's been about 6 or 7 weeks. Please pray that God keeps everyone well. Thanks!

Uneventful

Hope is up just a few grams. She's almost 5 lbs 1 oz. Not much happened today. I still don't know when her surgery is and she did not get the barium enema yet. It was a good day, just uneventful.

Sack of Flour

She did it! She made it to 5 lbs! She is also 18.1 inches long and in a big girl crib now. Woo hoo! Her lab work came back and it is all normal now - white blood cell counts and the number that indicates inflammation. Her liver is functioning better and her bone marrow is working hard. Tomorrow they are going to schedule her barium enema and then they'll call the doctor to schedule surgery. The nurse practitioner really wants it done soon. Her stool was really liquid today because she's not absorbing nutrients well. They took her back down to 30 mls every 3 hours to try and help with that. But she basically just needs to be put back together. Please pray that everything goes well with the surgery. Thanks!

Again!

Hope had a busy day. Do you notice anything missing from her face? If you said "cannula" you'd be right. She was taken off of it again this morning and again she lasted for 4-5 hours before they had to put it back on. She'll get there soon. She had to have her bag changed twice today because it was leaking. She got a bath after the first one. She wasn't terribly thrilled, as you can see, but it needed to be done. The reason her bag isn't staying put anymore is that she has gotten an awful-looking hernia that makes her belly all lumpy. They aren't worried because it will just get fixed when they go in to reconnect her bowels. She really needs to get that done soon. She lost another 5 grams today. The nurse said that her stool was pretty liquid, again meaning she needs to get hooked back up. The nurse also said she was getting pretty hot in her isolet, so she's going to try her again in a big girl bed. We'll see if she gets to stay in it this time.

She did it again!

She lost another few ounces. She's back down to 4 lbs 15 oz even. Pooh! And she had to go back on the cannula, although it's room air still. She apparently just needs a little flow to remind her to breathe. She also went back down on her feeds because she's dumping. Her stool output has gone up, which means she's not able to use everything they're putting in. I was bummed when I heard this, but the nurse practitioner assured me that just means they need to hook her back up sooner rather than later. I'm all for getting this surgery over with. She needs to have a barium swallow next week, and as soon as that's done they will call the surgeon. I'm thinking she'll have the surgery by the end of next week or the beginning of the week after. After that, if all goes well, she will need to be there another couple of weeks. Yahoo! What a Thanksgiving this is going to be!

Just a last little note - I started doing exercises with Hope today. The physical therapist showed me some things I need to do to stretch her out and help her body develop properly. Her favorite move was the bicycle. She kept grinning while we were doing that. Grandpa may just have another cyclist on his hands someday. :)

Little stinker

Hope lost 5 grams today. Phooey! I think she's doing this just to drive me batty. She knows how excited I am to hit that 5 lb mark, so she's just going to keep dancing on the edge. She did get off of her oxygen though. The nurse just told me that she's taken off the cannula and she's doing great, even while she's eating. She has been taking all of her feeds by bottle or nursing, so she should be able to lose the tube soon too. How exciting! But the most exciting thing is that the nurse practitioner thinks she'll be ready to have her surgery by the time she hits that 6 week post-op mark. That will be next Friday. So if she takes the couple of weeks that they think it will take to heal from her surgery, we could be home in 3-4 weeks. Yippee! I know, I shouldn't get too excited yet because things can come up. But boy it's hard not to! And by the way, all of the cultures came back negative so they're going to stop looking and stop antibiotics. We're just going to assume that it's a reaction to all the transfusions. We're in the home stretch, but please keep praying!

Re-weigh her!

Hope is 4 lbs 15.4 oz for the second night in a row. Argh! The nurse said, "I even re-weighed her because I knew you'd be disappointed." That's okay, we'll get there tomorrow maybe. She is doing great otherwise. I nursed her twice today and she's doing great. She's eating out of a bottle for her other feeds. If all goes well, she might be getting her pic line out and ditching her gavage tube within the next couple of days. They still have not found any reason for her blood counts being off. The results of her blood cultures should be back tomorrow. If that still hasn't turned up anything, they're going to write it up as her body reacting to all the transfusions she's had. I'm not even going to try to explain that one, because I'm pretty shaky on it myself. But suffice it to say that it's something that will resolve on its own and not to worry. I asked if it would delay her surgery or going home and they said "no." I'll keep you posted.

Weigh in 10/18

Hope gained 50 grams today, making her 2185 or 4 lbs. 13 oz. Five lbs, here we come! Her blood work is still off, but they are stymied about why. The echocardiagram they performed this afternoon showed that her heart is normal and does not have infection. So tomorrow they will be doing a bunch of lab work, possibly including a lumbar puncture. Oh, but the labs they did on the stool showed that she is not dumping (failing to absorb the nutrients she needs) so they are progressing her feeds by 1 ml every 12 hours. She is currently at 28 ml every 3 hours. Please keep praying for her that they will figure out what's going on. Thanks!

Social Bee

Hope is doing great. She gained another ounce today, making her 4 lbs 11 oz. Go Hope! They are doing a bunch of lab work in the morning, so I'll know more tomorrow about her infection and whether she's absorbing enough nutrients. But she's been wide awake and social for all of her care times and has taken all of her feeds from the bottle. So she looks like she's doing good. Praise the Lord!

Just a quick note before I head off to bed. Hope had a good day. She gained another 30 grams, making her 2100 or 4 lbs 10 oz. She's getting big. She has been eating all of her meals out of a bottle. She stayed at 24 ml every 3 hours today because her stool output had gone up and they were worried she wasn't absorbing everything she needed. They'll be checking on that and hopefully start advancing again soon. I'll write more tomorrow after I see her.

Aha!

They have figured out what's causing Hope's infection. The PIC line was positive for some bacteria. This is really cool - let me tell you why. In order to explain, I need to back up a little.

I'm not going to go into a lot of detail, but I need to explain that I was really angry at God over Hope's bowel surgery. I had prayed that God would heal her and expected that he would. He didn't. Whenever anyone expressed how great it was that her surgery went well, I cringed. I hadn't wanted her to have it at all, so I wasn't thrilled that she "only" had 6 cm removed. I sat and watched my 3 lb daughter grimacing in pain and needing morphine for several days. She was dropping her heart rate and oxygen saturation levels like she did when she was brand new. I found very little to be thankful for.

I calmed down some and thought I was over being mad. Then I got a call at 5 pm after I'd left for the day. I was waiting in line to get a flu shot when Hope's nurse called and said the opthamologist wanted to speak with me. She informed me that Hope's ROP had gotten worse and she was scheduled for surgery the next morning at 9:30. I got my flu shot and walked out to my car. I got in and proceded to scream at God until I was hoarse. I don't remember all that I said, but the general idea was this: "You said, 'Which of you, if his son asks for bread, will give him a stone? Or if he asks for a fish, will give him a snake? If you, then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those who ask him!' But all your giving me lately is rocks! These are not good gifts!" I stayed angry for about a week and a half. I really felt like God was not hearing or answering when I prayed, so I stopped.

I've finally made peace with the path we're on. It doesn't make sense to me that God would save Hope so miraculously and then allow her to suffer so much. I don't understand why He did not answer our prayers for healing. I don't know why other babies born at this stage get off so much easier than Hope. But I do believe that God has a plan for Hope and that she is going to be who He designed her to be.

That said, this whole thing with the PIC line was something I really needed. You see, on Tuesday I went in to see Hope and I was getting ready to take her temperature. I opened up her outfit and saw that she was really swollen on the right side of her chest. Long story short, something went wrong with the PIC line and fluid was going into her tissue rather than her vein. There is really no reason this should have happened. It is very rare that they have problems like this with the PIC lines and I don't think it is prone to happen on one that has been in place for awhile. I think the nurse practicioner was nervous that I was going to freak out over this happening, but I was actually very relieved. Ever since she started fighting this infection, I have been worried about the PIC line. They can be a source of infection and I was really debating whether I should ask to have it removed. It is kind of a pain to put in PIC lines, so they don't like to mess with them if they don't have to. I was really unsure of what to do. So when this happened, I told the nurse practicioner, "Maybe this is God's way of telling us the PIC needs to come out." Turns out... it was.

It was really good to see that God is watching over my daughter. Nothing escapes his notice and nothing comes her way that He doesn't allow. I needed that reminder.

Okay, so really quickly I'm going to fill you in on the rest of her progress. She is doing great with her feeds. She is up to 22 ml every 3 hours and has eaten all of them out of a bottle today. She is up to 2070 grams, or 4 lb 9 oz. And the surgeon thought that the spot on her stoma was nothing to worry about. Whew!

Life is good

Nothing says "Life is good" like a drowsy baby with a grin on her face and milk running down her cheek. That's right, I got to nurse my baby for the first time today. Sometimes it takes preemies awhile to figure out nursing and it can keep them from going home from the hospital. So I was a little nervous. I shouldn't have worried - she does have our genes after all. She figured out pretty quick where the food is and how to get it. Thank you, Lord! We've struggled through so much that it is really nice to have something go smoothly.

As to other news... Hope is still fighting an infection that they cannot figure out. It isn't getting any worse, but it isn't getting better either. The nurse practicioner is consulting with other doctors and will let me know if they come up with anything. They also noticed a dark spot on her stoma today, so they called the surgeon to see what it was. He is supposed to come by tomorrow and check it out.

The nurse had not weighed her yet tonight when I called, but last night she was 2000 grams, or 4 lbs. 6 oz.

Good stuff

I was at the hospital tonight and witnessed Hope having dinner. She saw that bottle and opened her mouth right up for it. She's figured out pretty quick that good stuff comes out of there. Two nurses have now told me that she is not satisfied with the little amount they're giving her and would like more, thank you very much. I'm so relieved. I've been told that sometimes it takes preemies awhile to figure out this eating from a bottle thing, but it looks like that won't be an issue with my girl. I took a video of her eating, but it was too long and and I had trouble uploading it. I'll have to have Mike help me with it, but in the meantime here's a quick one I took of her. By the way, she dropped 20 grams tonight. Wrong direction, sissy. But she seems to be doing better overall. Please continue to pray that she gets over whatever it is that she's fighting. Thanks.

Comes by it honest

Our little girl likes to eat. She is doing really well at her bottle feedings. Starting at midnight, she will be getting 6 ml every 3 hours. She will go up by 1 ml every 12 hours, so by noon tomorrow she'll be at 7. I was pretty excited that things were moving so quickly until I talked to the nurse tonight. I asked what "full feeds" would be for her. At this point, she should be getting 36 ml every 3 hours. Oh. We still have a ways to go. But she is gaining weight and is up to 1960 grams, or 4 lb. 5 oz.

We do still need your prayers though. She is fighting some sort of infection and they can't figure out what it is. They are doing blood cultures, as well as a stool culture, but won't have results for a couple of days. In the meantime she is on 2 antibiotics and something for yeast infections. They want to start fighting on all fronts until they figure out what's going on. Please pray that it's nothing with her gut. They did an xray today and it looked fine, plus she's being pretty active. She did have a bunch of apnea this morning though. Please just ask God to let this not be something serious. Thanks.

Wonderful Day 2 more pics

Wonderful Day 1

Today was a lovely day spent together as a family. It had been 4 weeks since I'd seen my kids and we really missed each other. So Mike brought the kids up this morning and we met at the hospital. Everyone had just gotten over colds, so we decided to play it safe and did not have anyone visit Hope except for me. But we did show the kids the hospital and they thought those sky-walks were really cool. Then we went out to the cars and had apple fritters that I'd picked up this morning. We stopped by the granny flat and then headed out to Green Bluff. The kids love to visit Siemers and go through the corn maze. This year they also added a slide and pedal cars. There was a guy juggling while riding a unicycle. But that wasn't his only trick - he also does face-painting. We all had a blast out there. Then we came back to the granny flat and Mary napped while the boys played outside. We ended our day by heading out to Madelaine's for some yummy pastries. During dessert Mary started crying. Then Mike and I got involved in a serious discussion. Long story short, Mike and the kids wound up spending the night up here. (Thank you, Carla, for taking care of the dog and making that possible.)

So about Hope.....she is doing great. I was able to give her a bottle this morning and she took it all. (Okay, so it was 3 ml.) I talked to her nurse tonight and she said she's having a good night. She is up to 4 ml feeds and is still on low oxygen. She is up to 1915 grams, or 4 lbs 3.5 oz. Good girl!

Thanks to all of you for praying for us. Please don't stop. Specifically, would you pray for strength for Mike as he is having to work really hard. Also pray that we won't have to go long between visits again. It is really getting hard to be apart. And of course, pray that Hope continues to thrive. Thanks!

Big Girl Bed

Well, she made it to a big girl bed....for awhile. She wasn't able to keep her temp up after all and was having a lot of desats (oxygen saturation levels dropping). So the nurse moved her back in to an isolet to get warm. After just a little bit she warmed back up and then she woke up and started moving around. I was really hoping it was just that she was cold, but I was still pretty nervous when I left the hospital. The nurse tonight has made me feel much better. She said she's doing great and was quite alert and moving around at the beginning of her shift. She nippled her feed and loved it. Her oxygen is turned really low and her stool looks good. And lastly, she gained another 30 grams, making her 4 lbs 2 oz. Thank you for that, Lord.

I'm very excited to get to see Mike and the big kids tomorrow. We're going to go to the corn maze and out to eat to celebrate Nate's birthday. Can you believe my guy is 10? Where did the time go? Please be praying that God would keep everyone well and allow us to have a wonderful day together.

Super Big

I am now the mother of a 4 pounder. How exciting is that?! I can't believe we've made it so far. Woo hoo! Hope is now 1850 grams, or 4 lbs 1 oz. The nurse said that she's going to monitor her temperature tonight, and if it looks like she can hold her body temp stable, she'll put her into a crib. I'm anxious to go in and see her tomorrow morning.

Hope also hit another milestone today. She took her milk out of a nipple. I would say they bottle-fed her, but there wasn't actually a bottle. She was only getting 1.5 ml, so the nurse just put it into a nipple and had me feed her that way. She did pretty good. There was a little that ran out of her mouth, but she did fine for a first try. The nurses must have thought so too, because the nurse who's on tonight is planning on feeding her that way again. And starting at midnight, she'll go up to 2 ml at each feeding. The plan is to add on an additional half ml every 12 hours. So by midnight tomorrow she should be up to 3 ml per feed. Oh, it's so exciting to be making progress!

I'm going to ask for prayer tonight, though, for my Mary-girl. She's been having a rough time lately and is crying because she misses me. It breaks my heart. By the time I see the big kids this weekend it will have been 4 weeks. And the kids still aren't totally over their colds, though they are past the worst of it. So I think we're just going to get together for the day on Saturday and go to Green Bluff. I might need to sit out from visiting Hope for a couple days just to make sure I'm not sick, but I can't stay away from my other kids any longer. Please pray that everyone is feeling better by Saturday and that I don't get sick. This being apart is hard!

Some good news and some bad news

Hope's bloodwork showed that she is fighting an infection of some sort. They've started her on antibiotics and are doing blood cultures. It will take a couple of days to really see what is going on. She is doing okay, though she was pretty sleepy today. Please pray that she kicks this quickly.

But the good news is that they are not stopping her feeds. She is now up to 1 ml/ 3 hours. She also had another eye exam to follow up on her surgery. Dr. Nye thought things looked good and, although it's still too soon to tell for sure, doesn't think she'll need a second surgery. And lastly, the nurse practitioner saw her sucking her fingers and said that was a big milestone. It shows that she is progressing well neurologically. She said her head has been growing well, even though she's still on the small side. Whew!

I just got off the phone with Hope's nurse. She gained 60 grams today, which puts her at 1770 grams or 3 lbs 14 oz. Woo hoo! The nurse also thinks she's kicking whatever it is she was coming down with. She said she was alert at care time and is otherwise acting fine. Thank you, Lord!

Baby Aerobics

Hope was being pretty active this afternoon. She was also very intent on sucking her thumb. She got it a couple of times too. Her feeds are going well. She is up to 1 ml every 4 hours now and they intend to bump it up to 1 every 3 tomorrow. The one video is of the nurse giving her dinner. She squirts the milk out of a syringe into the tube that goes down her nose and into her tummy. Yum!

I just called her nurse and she gained 5 grams today. Not much, but still working in the right direction. The nurse also told me that she was sucking her thumb again.

Terrific in turquiose

Hope had another good day today. She is up to 1710 grams, or 3 lbs. 12 oz. I'm thinking she might hit 1800 and move to a crib this week. How cool will that be?! And her feedings are going well. They've moved her up from 1 ml every 8 hours to 1 ml/6 hours. I know, you're full just thinking about it. Also, the nurse practitioner doesn't think her vocal chord is paralyzed. I sure hope she's right. Thank the Lord, things seem to be looking up.

Grandma's Surprise

Grandma got a big surprise tonight when she flew in. The nurse deemed that Hope was big enough that Grandma can hold her now. So Grandma got to love on her for the first time since the night she was born. What fun! Hope slept through most of it, but Grandma was excited.

As for other news....Hope got a bath today. Her nurse, Nicki, was tired of her stinky feet so she attacked her with some Johnson's baby shampoo. I personally hadn't thought she was stinky before, but she sure smelled good afterwards. I love the smell of freshly washed baby! It was just a sponge bath and Nicki couldn't get to half of her head because of the pic line, but it was still nice.

However.....Nicki casually mentioned that she wondered when Hope would get her voice back. "What do you mean? Back?" "Oh, this isn't normal. She's really hoarse. She should be much louder than this." Oh. One of the risks of her PDA ligation was that one of her vocal chords could be paralyzed, causing her to be hoarse sounding. It could be that she just has had so many tubes down her throat that she is a little hoarse, but we don't know. I'm really hoping. The nurse tonight, Susan, said she screamed at her during care time and she sure heard it. She said she sounded hoarse, but she definitely could hear her. Oh please, Lord, don't let her have trouble with her voice. I really felt that Hope was going to be fine because God had so miraculously saved her, but now I'm realizing that she may have a lot of stuff to deal with. I know she is going to be who God designed her to be, but I sure hope she doesn't have to struggle really hard her whole life. She is a really amazing, tough, special little girl.

quick note

Hope had another good day. She is down to 1/2 liter on the nasal cannula. They tried to take her off, but she wasn't quite ready. Hopefully soon there won't be anything on her face. She also gained half an ounce. She is now 1670 grams. Once she hits 1800 she can go to a regular crib. They start feeding her tomorrow, though it won't be very much. They're going to start with 1 ml every 8 hours just to get her tummy ready for food. Please pray that this goes well and she can take off quickly with her feeds. Also, would you please pray for Elizabeth tonight? She is another mom of a micropreemie. As I was leaving tonight, she looked really down but I couldn't get her to talk about it. I'm not sure what she's going through exactly, but I know that this is really, really hard in so many ways. I'd appreciate if you would lift her up. Thanks.

Growing Up

Hope is getting to be a big girl. She is off of the high-flow and onto the regular cannula. Next step...all on her own! She is 11 weeks old now, 35 weeks gestation. She is up to 3 lbs 10.4 oz as of tonight. Yay!

I thought I'd include a shot of what her belly looks like, so that you know what we're dealing with. Keep in mind that the photo doesn't do it justice. It is pretty gross.

Igot to the hospital today around 9:30. I walked into Hope's room and cracked up. The Screamer was in her bouncy seat in front of a TV. Me thinks the nurses were feeling a bit desperate. It really wasn't that bad today though. The nurses got to her pretty quick whenever she started crying and several of them took turns holding her. Hope and I were having such a nice time that we wouldn't have cared anyways. First, we did kangaroo care for an hour. Then this afternoon I held her and rocked in the rocking chair for 2 hours. What fun! For the most part our life has been really hard lately. But today I was enjoying being able to sit and hold my little bug without any distractions. I know once we get home the 2 hour rocking sessions will be impossible to squeeze in with 4 other kids to care for. So for today, I just enjoyed myself.