And the part of Santa Claus was played by Dr. E

There's so much to tell that I might need to split this into a couple of posts. Here goes...

I roomed in with Hope starting on Monday. This means we stayed in our own room there at the unit and I was responsible for taking care of her. Nurses checked on her, dropped off her meds, and drew blood, but for the most part we were left alone. I thought things were going well with the breastfeeding, but Hope was not gaining weight. I was getting used to taking care of a baby on oxygen and a monitor though. But when Hope's lab work turned south again, I was very discouraged. Then an ultrasound of Hope's liver and kidneys was ordered and showed that there might be some refluxing of fluid back up into her kidneys. It was Thursday and I was starting to feel like we would never get out of the hospital.

Then late in the afternoon Dr. E came to visit us and check on Hope. We talked for a couple of minutes and then he asked me what my Christmas plans were. I told him that, one way or the other, I was going home the next afternoon and staying through Christmas. He said he needed to talk to Dr. AH and walked out. Two hours later the nurse walked in and informed me that the docs were having quite the pow-wow down at the other end of the NICU.

A few minutes later, both docs walked in. They informed me that the next morning Hope was going to have another test on her kidneys. Then a home health nurse would come to teach me how to flush Hope's broviac, since she would be going home with it still in. Then we should be ready to go. Then they both proceeded to give me a zillion instructions consisting of things like "All children are to be considered sick until proven otherwise." I nodded along, afraid they were going to change their minds at any second. I finally got up and gave them big hugs.

The next day was a blur of activity. Hope had her test which showed that she did indeed have some refluxing going on. This can lead to frequent urinary infections and explains her constant down-turn on her blood work. Yay! They figured it out finally! We'd been looking in the wrong place all along. Well, she has definitely had problems with her bowels too, but it looks like this is the ticket. (For the time being she is on a daily dose of antibiotics and we have an appt to see the pediatric urologist.) Then I got trained on flushing the broviac, which is a little stressful for me. Dr. AH was quick to point out that an infection in a central line can "lead to death really quickly". Thanks, doc. No pressure. After tying up a million loose ends, we were finally ready to go at almost 5 pm. Dr. E came by on his day off to see us on our way. He wanted to make sure that I understood that he hadn't just done this because it was Christmas, it was the right thing to do. Hope needed to go home. I told him, "That may be, but Dr. AH said you were up really late last night getting us ready to go home." "All night, actually." I told him it was my best Christmas present ever and gave him another hug. I love this man!

Though I told Mike that I was coming home, we decided to keep it a secret from everyone else. That drive home took forever! I was so excited when I finally reached home and was able to walk in the door with Hope. Mike was ready with my dad's camera phone so that he could record their reaction. Mary was great. She asked me why I had the car seat with me. I think Nate was the first to realize Hope was in there. It was so cool! We'll eventually figure out how to download it and put it on the blog.

Andy has been really cute with Hope. He likes to call her "Hoper" and he know that she is "sister". He has been good about not touching her, but whenever I'm nursing her he comes over and pulls up the blanket wanting to "See it?" He was offering her eggnog this morning. He tells her "Open up. Aaaah" when we're trying to give her meds. He's been pretty cute.

Hope has been doing well at home, though she isn't gaining weight. She was unable to get her broviac out this week because she has yet to prove that she's not going to need it again. After her Wed appt with Dr. AH it was decided that she should get a tube going down her nose into her tummy so that she can get a steady drip of formula all night long. We tried it the first night with breast milk instead, since I'm still really leery of putting anything else in her with her bad gut. It was disastrous! We woke after about 3 hours (it was supposed to be a four hour run) and she was crying and in pain. Her belly was so distended and rock hard. It took until that following afternoon before she'd worked it all out and was comfortable again. Last night I weighed her and it looks like she might have dropped a little bit. Again I got really discouraged. I was crying because I can't make her gain weight and I was really worried about trying formula. We didn't know what to do. Mike finally decided to try to give her a bottle of formula. (We pulled the tube after her failed attempt and because she kept gagging. We were going to have the home health nurse put another one in and we would run it at half the rate. But she was advised to have us go to the emergency room and get an xray taken to make sure it was placed right. We decided not to mess with it.) Anyways...God gave us an answer about whether to use formula or not. Hope won't have anything to do with it. She spits it out or just refuses to swallow. Oh well, back to the drawing board. Please be praying that we'd know what to do and that Hope would start to chunk up.

I also wanted to ask you to be patient with me about returning calls and emails. I am feeling really overwhelmed right now. Hope is pretty labor-intensive. I need to flush her broviac once or twice per day and give her all her meds. She gets actagol (for her liver) three times per day, iron twice per day, amoxicillin once per day, and vitamins once per day. She loathes the vitamins with every fiber of her being (can't say as I blame her since they are a foul-smelling orange liquid) and getting them down her has become quite tricky. We have at least 3 appts every week with doctors, home health nurses, physical therapists, etc. There's oxygen and a monitor to contend with. Then there's the pumping and the fact that she doesn't sleep at night. So please extend a little grace - I'll get back to you as soon as I can.

One last positive note... Hope is doing well on her oxygen. We turned it down to 1/16 of a liter yesterday and she is still satting 100. Hooray! I think we might be able to get off of it soon.

Merriest Christmas Ever!!

Hope is doing pretty good. She loves nursing and is very happy now that she gets to eat. The docs must agree with the plan now because they're talking about having her home by Christmas. Yay! The question remains as to whether or not she'll go home on oxygen and IV nutrition. She lost 3 oz yesterday, so they're thinking she's going to need to be on the IV at least at night. But today she was back up 2 oz, so I'm hoping we can show them that she can gain weight without it. It sure would be nice to not have to mess with that stuff at home. As for oxygen.... she is so close to getting off of it. In fact, she was off again for about 4 hours yesterday before they had to put her back on. She does okay while she's awake, but her oxygen saturation levels dip when she falls into a deep sleep. I'd prefer to not have her hooked up to anything, but we'll take her home however we can get her. I should also mention that she has had a couple stools without occult blood in them. She'll have one that's negative and then have one that's positive. But overall it seems like it's improving. They haven't done blood work for a couple of days and won't do it again until Monday. We'll let you know how that goes.

I thought I'd post some pictures of Hope with her favorite person, Gracie. Gracie is Hope's physical therapist. It may look like they're just having fun, but it's really work. :)

Please keep praying for the Hopester. Pray that everything comes together over the next few days. Thanks so much!

By the way, I didn't mean to make the doctors out to be bad guys. I know they are trying their best to help my girl. My starting her on nursing just made them nervous. But as I read over my older posts again last night I was reminded of just how much they've done for her over the past few months. We are very grateful for them.

I'm sorry I haven't posted in a few days. There has been a lot going on and it's hard to sort it all out so that it makes sense. I'll try.

My baby girl has been off of feeds and on antibiotics again. No one knows what's going on with her. They can't agree on anything. (In fact, one doctor expressed a need for the doctors to be civil to each other.) I had no idea my girl had sparked such fighting in the department. I sat down on Saturday and spoke with one of the doctors for about an hour. It was a really depressing conversation. We were down to some truly horrendous options. First, some of the doctors want her to be scoped. Some of the other doctors think this could be disastrous and perforate her bowel. Other doctors want to do surgery. They want to open her up and go looking for the problem and remove it. I think this sounds horrible. Really, they've been in there twice already. Third time is a charm, huh? This would mean another couple months probably. Not to mention, we have no idea how much they'd want to remove. They could wind up removing so much bowel that she would have to be on IV nutrition permanently. Isn't that lovely? The third option is sending her to Seattle. It's already hard enough to live this far away from the rest of the family. Seattle? I might get to see them once a month if we can get over the pass. We also discussed the possibility of her having an ostomy bag her whole life or going for a bowel transplant. Did you even know they could do such a thing? And the bottom line....barring an act of God, this child was not going home for Christmas so I should hang that up.

I went out in the hall and called Mike sobbing. He was upset too, but felt like we could do the Seattle thing. I told him to have fun because I wasn't going. I didn't want to live away from my family any more.

I calmed down and went back in to be with Hope. I had a wonderful nurse that day who closed the door to my room and put up a "Quiet" sign so that I could have some peace. I sat in the room holding Hope behind my curtain and she was rooting around on me wanting to nurse. It hurt so bad to not feed her! I called Mike on my cell and told him,"I want to feed this baby." He told me no. Although he thought it was a good idea, he wanted me to discuss it with the doctor before I did anything. "Then I'm going home, because I can't sit her and do nothing anymore." Before leaving I had a conversation with my nurse. "What can I do if I disagree with what the doctors are doing?" She told me that I was the parent and I found out that I have a lot more power than I thought. She did not tell me what to do, but she wasn't discouraging me in my line of thinking.

I went home and prayed, and I know Mike was praying too. I basically said, "Lord, I've been crying out for you to speak to me, and you haven't spoken. So this is what I want to do. I want to feed my baby. If I should not do this, please tell me. At least make me wake up sick or keep my car from starting so that I can't go in." God did not speak, I was not sick, and my car started. So I went in to the hospital.

The doctor came by to do rounds. He sat down and said, "So here's the plan today." To which I replied, "You tell me your plan and I'll tell you mine." He kind of laughed, but was taken aback. I laid out my desire to treat my daughter like a regular newborn and breastfeed on demand. I said that everyone else had had a chance and been wrong, so I wanted my chance too. I told him that if it was a bacterial over-growth (one of many thoughts on the problem), then the best idea would be breast milk. I also told him that Mike and I both thought that this was a good idea, but we wanted to try it in the hospital where it could be monitored. I promised to stop if she showed any problems. The doctor agreed to let me try it, but he was not happy.

To sum up... Hope took to breastfeeding like a champ. She has been nursing for 3 days now and so far, so good. Her blood work is looking better, her x-rays are looking better, and her stool is looking better. It still has occult blood (not visible to the naked eye) in it, but it is not rust-colored like it had been. And the best part.... she is so happy! She has been giving me these big, open-mouthed grins like she hasn't done in a long time. I am so thrilled! Please keep praying. I am so hopeful that this is going to work. She has her last dose of antibiotics tomorrow night, so that will be the true test. Does she keep doing well once she's off of the meds? Please, please pray that the answer will be yes.

If I don't blog or return e-mails and phone calls, don't worry. That doesn't mean things are going poorly. I've just been logging some really long hours in the NICU. I will try to keep you posted though. Thanks again for praying!

Real Quick

Good news..... Hope weighs 7 lbs 12 oz. I was having lots of fun dressing her in new clothes I bought her. We moved to the coveted window room.

Bad news....Hope's xray showed that she is distended again and her blood work was unimproved today. They have taken her off of her special broken-down formula and are only feeding her pedialyte. If her tummy goes down by tomorrow, they will conclude that she can't tolerate that formula.

Question.... If she can't tolerate even the most broken down formula, what do we do?

Answer....... Try other formulas?

Another Spin on the Merry-Go-Round

Just when I think this crazy ride is slowing down and we're about to get off, God gives it another fling.

The older kids are sick again, this time with a bad cold. I've always had visions of finally bringing home a healthy baby and having a wonderful reunion with the rest of the family. Those dreams are dead. If we get to bring Hope home, she's almost certainly going to still be hooked up to IV fluids and oxygen. She's not getting any of my breast milk so she's not getting any of my immunities. I have no idea how this is possibly going to work. A baby who needs to be in isolation with a bunch of older siblings. Hmmmm.....

Of course, it's probably a moot point anyways. Hope's not going anywhere anytime soon. She has taken a turn for the worse. She had a fever last night. Her blood is showing signs of infection again and there's blood in her stool again and so she's off of feeds again and on antibiotics again. Again, no one has any idea what's going on. They have done a CT scan and are waiting for results. I should hear something by tomorrow. They are culturing her stool. We should hear something in the next 24 - 72 hours. They are testing her blood for Chrohn's. We should hear something in 2 weeks, and even then it's not definitive at all. The GI doc doesn't want to scope her yet because of the risks. He also doesn't want to do the dye study to see if it's a hemangioma because of the possible damage to her kidneys. So we wait again.

We had a full day today. We started with the care conference, which went really well. We came away with all the doctors in agreement about how to proceed (slowly) and how to switch from the formula to breast milk (in the hospital, under their supervision, before we go home). Everyone was happy. Then the pediatric GI doc, who was unable to make it to the meeting, came by this afternoon. He basically wants to completely change the plan. He wants her to get up to full feeds on the Neocate and then go home. He thinks she should be on it for 4-6 weeks and then switch to breast milk. This would be done under his care as an outpatient. I have to say I like his plan because it gets me home sooner, but I'm very confused again. Who do we listen to? Sure would have been nice if all the docs had been at the meeting.

Regardless of which plan we follow, it looks hopeful that we'll be home by Christmas. Hope is tolerating her feeds well so far. Her liver is improved already and her oxygen needs are slowly going down. She is off of all her meds except for one for her liver and it's an oral med. Looks like we might not become permanent residents after all.

The other baby in the photo with Hope is her roommate. He is getting discharged early next week and we are going to miss him. He and Hope communicate by setting off their alarms at the same time and getting dueling hiccups going. It was exciting for them to finally see each other as we posed for photos.

I did get some very sad news today though. There is another couple that I've gotten to know a little bit from passing in the halls. They were also long-term NICU residents. Their son moved off to the cardiac unit where he had a surgery which went well. When I talked to the mom a little over a week ago, they were thinking he would be coming back to the NICU soon to finish recovering and then go home (finally!). I hadn't seen her since then and I just found out that their baby got an infection and died a few days ago. Can you imagine? That would be like losing Hope after all of this. It seems so unfair and I'm sure their pain must be almost unbearable right now. Would you please pray for this couple? I'm sure they can use it.

Up Day

I'm trying to hurry up and get down to the hospital, so this is going to be short. Hope's nurse practitioner decided to go ahead and start the formula feeding yesterday. Apparently she thought the "Ooops, it was actually positive" sounded fishy too. So she got her first dose of Neocate yesterday evening. She was quite excited about it, even though she wound up spewing most of it all over me. (This is the foulest smelling formula I've ever come in contact with!) Her feeds since then have gone much better. She has also had a stool that came back negative for blood, though that was before starting the formula. Please pray that they continue to be negative.

I also convinced the nurse practitioner to let me unplug Hope for a little while each day. That way I can carry her around in a tummy pack and only have to drag her oxygen. She wants to make sure that she can tolerate feeds okay, and if so, this weekend I will get to have her up and about for a couple of hours each afternoon. I'm pretty excited about that.

Last bit, then I have to go. Hope weighed 7 lbs 4 oz last night. Thank you Lord.

I just got off of the phone with Hope's primary night nurse. I asked if she had weighed Hope yet, and she said I was going to do a happy jig. Hope hit 7 lbs 1.2 oz tonight. I was so excited. I asked, almost as an after-thought before hanging up, "And she hasn't had anymore blood in her stool, right?" Silence. Then, "I can't lie to you. I was really hoping you wouldn't ask. But the last one the day shift sent down initially came back negative. They called back awhile later and said it was actually positive." She went on to say that she doesn't understand what happened and she's going to check it herself tonight in addition to sending it to the lab to get checked.

I have been trying to not get my hopes up. I thought I was doing pretty good at that, but the fact that I'm sobbing so hard that I can hardly type means I haven't done too well after all. The verse we have at the bottom of our blog says that "hope does not disappoint us". I wonder what this is then.

She does it on purpose

I was waiting to blog until after Hope's nurse weighed her tonight. She was 6 lbs 15.3 oz as of last night and I wanted to be able to write that I now had a seven pounder. So of course she went down - 6 lbs 14.8 oz. Oh well.

Other news... she got to go on a walk today. It was just around the unit, but she stared wide-eyed. It was great. I'm sure her nurse thought it a bit ridiculous that she had to push her IV pole and drag her oxygen just so that we could get out of her room, but she did it for us anyways. Hope also got approval for "sham feeds". This is what I like to call "bulimia training". They let her have some pedialyte from a bottle, then they suck it back out with the replogle tube. Nice, huh? She's just happy to get to swallow something down. Hopefully she'll get to keep some down soon.

We also are scheduled for our "care conference" on Friday morning at 9. The GI doc won't be able to make it, which is kind of frustrating. We were given the option to put it off until next week, but I just want it done. Please be praying for God to lead us through this.

How to sum up?

Things are all starting to blur together lately and I'm having a hard time blogging. I'm going to try to sort this out and sum it up so that it makes sense. So here goes...

Hope is doing okay. She still has blood in her stool and gas in her bowels. Her blood work is looking much better now though. Her platelets and CRP (measure of inflammation) are back to normal. No one appears to know what is going on. One surgeon today was telling us that her bowels could just be taking some time to start working again. Of course in the next sentence he talks about strictures and surgery. He says they need to check her colon. The other surgeon says there's nothing wrong with her colon. Two docs say we shouldn't feed her until there's no more blood in her stool. The nurse practitioner says (and we agree) that you can't keep not feeding her. At some point we're going to make the choice between killing her by testing her gut or killing her by keeping her on IV nutrition and ruining her liver. Aaah! I have a suspicion that if we took 10 doctors outside at the same time and had them look up they would all tell us the sky was a different color. Do I sound frustrated enough? Apparently the doctors are starting to realize this because we have been promised that we will get a meeting next week where everyone sits down together.

Mike and I are really at the point of feeling like we will not let her go through another surgery. If the doctors could all agree on the problem or had some sort of an idea what they would find or how to fix it, we would consider. But that does not appear to be the case. We are considering other options, such as moving her to Seattle, transferring her to Gritman, or bringing her home while still on IV nutrition. I personally feel like we've ridden the hospital train as far as we need to. When she was born we had decided not to intervene. God decided that against all odds she was going to live. If He still wants her alive, He can fix her. I know that everyone is going to have an opinion about what we should do. Please don't share them. I'm not trying to be rude, but no one else is in this spot. We are asking for God's direction here. Please feel free to ask for that with us. He promises in James that " If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you." We'll update when we hear what the group has to say.

On to other news.... Hope is going to need to start out slowly with her feeds and will be starting on something called Neocate. This is a very broken down, hypo-allergenic formula. It's unclear how long it will take to get her going on this or how long she'll need to stay on it. I am still hopeful that I will be able to breastfeed at some point. To that end, I am on a special diet which removes the most common allergens that could be bothering a breastfed baby. I am cutting out dairy, gluten, soy, eggs, and nuts. Yes, that does pretty much leave me with chicken, rice and a few fruits and veggies. The upside is that I expect to be trimming down pretty quickly. :) It will all be worth it if I can nurse my little peanut.

Hope is staying alert for periods of hours at a time. She will stare wide-eyed at anything around her. I mentioned today to the nurse practitioner that I wish I could walk her around the unit and let her see that there's more to the world than her dark, little corner. The nurse practitioner ( I love this woman) has volunteered to bring in a portable oxygen tank for her so that we can do just that. Yay!

As for the other kids and how they're doing... they fell asleep tonight while watching a documentary. These children, who swear they are never tired, couldn't keep their eyes open. They've been sledding, shoveling walks, building snow forts, and in general following the teenage girl we live with everywhere. It's apparently pretty exhausting. We will all be going home together tomorrow. I've been needing a more snow-worthy vehicle, so I will get the truck and drive back on Monday. Should be fun to be out on these roads...

We hope everyone had a wonderful Thanksgiving and is enjoying the start of the Christmas season.

It's been awhile since I blogged. It's not because nothing has happened, but rather too much has happened and it would take way too long to write it all down. So I'm going to try to sum it up. Basically, they still don't know what is going on with Hope. She is still having gut problems, though some things are improving. Her blood work is starting to improve. Her CRP (the number which measures inflammation and which should ideally be below 1.5) is dropping. Her platelets are going up. So she appears to be fighting whatever this is that's bothering her. I think the latest theory is that she has an allergy to my breast milk and is going to need a special formula. If I'm understanding correctly, they believe Hope's gut has been torn up because of her inability to handle my milk and then an infection has set in on top of that. The surgeon was there this morning and he thinks, because of her enlarged bowels as shown on the xray, that there is some thickening of the intestinal wall. The plan of action is for Hope to stay on antibiotics and off of feeds for 10 days (she's at day 4) and then introduce a special, predigested formula. I really, really hope this works. A pediatric GI doctor has been called in and he said there are still several things to look at yet. I'm too lazy to try and type about all of the possibilities, but suffice it to say there's still stuff to check. I'll keep you posted.

Bravo for the Broviac

Hope is back from her broviac surgery. This is a surgically inserted central line. They made the incision in Hope's groin but the line actually comes out of her chest. It's kind of creepy, but I'm so thankful for it. Now they will not have to poke her anymore. This line should theoretically last a long time and they can use it for everything she might need - nutrition, antibiotics, blood (though hopefully we don't have to go there). But the really cool thing is that they can also draw blood out of it so that she won't have to get all those heel pricks anymore. Yippee! The nurse was telling me that she was very impressed by the skill of the surgeon. He was able to give her a sort of spinal and thereby avoid the ventilator. Yay ! At the moment Hope is out on morphine and looked very comfortable. As I stood over her I was counting the holes from IV and picc attempts, surgery incisions and whatnot. I counted 18, but that was just what I could see or knew about. I didn't move her around at all to look for more. Suffice it to say she looked like a pin cushion. I'm so glad she won't need any more pokes!

If anyone is interested in knowing more about broviacs, check out this page: http://surgery.med.umich.edu/pediatric/clinical/patient_content/a-m/broviac_placement.shtml

Hope's condition

Hi all sorry its been so long between posts. So here is the latest on Hope , its hard to keep it all straight it seems to change every few minutes. OK her bowel xrays have gone from shes fine to there might be a new problem, but as of today they said she has a normal gas pattern YEY. The new big problem is her infection they have her on antibiotics , but we are not sure that it is not being caused by the blood transfusions she got on Sunday I think. As a result of the infection they have pulled her PIC line and were trying to just us the IV's for a little while, but the IV's wont last but maybe a day if that. So they are to give her a brovack or something like that because they cant get a PIC line there are no more spots left. OK a brovack ? is a surgical procedure were the install a catheter in her neck or leg they chose her leg, because she has some sort of fungal thing on her neck. She is going in for that at 5:30 pm today so please keep her in your prayers, we will post tonight to let you know how she does. I am sorry I know i am leaving so much out but I cant keep it straight. Also please pray for Amy and I this is and has been so hard..Thanks Love Mike

News

This is me on my face asking God's forgiveness and thanking Him over and over. He was listening. He does care about my girl. We got a call from the surgeon this morning. Hope's xray from this morning looks fine. It is not dilated like before. He is not at all worried about how that section of colon looked on previous xrays. He is convinced that it is fine because he'd just done a barium enema before surgery and it was fine then and the enema is better for looking at the colon than this other dye study. So there is no surgery in her future, as far as we can tell. The surgeon has ordered her tube that sucks air from her tummy to be clamped. If she does okay after 4 hours of that he will have it pulled out. They will watch her for the rest of the day and if all goes well they will start feeding her tomorrow. (She'll be starting with pedialyte.)

As for Mary... she had a fever yesterday and today she woke with a croupy (?) cough. It was only there first thing and has not resurfaced since she took a shower. Her fever is gone also. But we took her in to the urgent care per suggestion of the NICU nurse to have her tested for RSV and whooping cough. She doesn't have either.

Thank you, thank you Jesus. And thank you to all our friends who have been praying, even when I wasn't convinced it worked.

Please forgive me

I have had some really angry posts lately. I'm sorry. I know you have all been trying to show me your love and I do appreciate it. I have felt really hurt and abandoned by God. I have said things to Him that I won't repeat. I know I have let many of you down, and that was hard, but I can't pretend things are okay. I know many of you think that I'm acting like a spoiled child who's stamping her foot and demanding her own way. I get it that it's not all about me. If it was just about me, believe me, I would have stopped way short of the places I've gone. But my little girl is hurting. Every day I go and see her little body with so many tubes that I can hardly pick her up. I see the marks from the many heel pricks they do to her all the time. I see her swelling up with fluids and watch her turning red and crying as she tries to move the stuff in her bowels. I look into her eyes which are yellow from the jaundice that she's gotten from being on IV fluids for so long. And I hurt worse than I thought it was possible to hurt. I want to make it stop. She has been through so much. Everyone tells me how tough she is and I know it's true. But I don't want her to have to be tough any more. I want her to be able to rest. So I'm sorry if I've gotten a little frantic lately. I just want it to stop! And now we're looking at not being able to go home until January or February. And that makes me hurt not just for Hope, but for the other kids as well. They have been troopers, but they still need a mom too. And Mike is working so hard to keep things together. And I am here, away from them, and still unable to help Hope. And quite frankly, I don't want this to be my life.

So what do I need from you? Not philosophy and theology. I want you to cry out to God on behalf of my baby girl. Please ask Him to make the pain stop. And cry with me. Hope's doctor held my hand last night and cried with me. I so needed that. I needed to know that he understood and that he hurt for what she was going through. That's what I need right now.

But regardless, it was wrong for me to take my anger out on you. Please forgive me.

By the way... the 3 oldest kids are up here and Mary has come down with a fever of 100.5, so we aren't even able to go in and see our baby right now. Good timing, huh?

Abandoned

We have been assured by 2 doctors that Hope is going to need at least 1 more surgery. There is a section of colon, about 3 or 4 inches long, that is going to need to be removed. There is question as to whether this will be able to be hooked back up right away or if she will have to have the same deal as this last time, with the ostomy bag and a 2nd surgery to hook back up. We will speak to the surgeon tomorrow. We have asked to consult with the surgeon from the other hospital as well. In addition, Hope has another infection and is on antibiotics again. Her picc line is not ideally placed and could be the source of the infection, but the doctor did not want to replace it until she has been on antibiotics for at least a couple of days. They will not operate on a baby who is already fighting infection, though it could also be the bowels that are infected. Fun, huh? Hope had yet another blood transfusion today. I'm not sure how many this makes now...20, 30, 40? It's got to be getting up there. She's also gone back to high-flow cannula because her oxygen was getting up to 70% on the regular. The nurses keep telling us that Hope is "resting peacefully". I'm curious how many of them would want it described that way if they were in her spot. And just to head this off ahead of time, if a single person tells me that God's timing is perfect one more time, I promise that I will hunt them down and beat the snot out of them.

Hope is resting again , it looks like there is a new problem with her lower bowels near her colon . We will have to wait for the surgeon on Monday to make the call if it means another surgery or not..

Please pray for us and Hope...More to come later Mike

Hope is resting and we should know something tomorrow about the test ...more later Mike

Hey just a quick note , Hope is going in for her test something called upper GI ??? , they said it can take a long time so keep her in your prayers. On the the Amy side we have got her back at the granny flat and has taken a sleeping pill and is resting . Please pray the Lord will recharge her ...

Thank you Mike

p.s these have been on my mind just thought I would share them..

²⁸ “Come to me, all you who are weary and burdened, and I will give you rest. ²⁹ Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. ³⁰ For my yoke is easy and my burden is light.” Mt 11:28-30

¹ I waited patiently for the LORD;
he turned to me and heard my cry.
² He lifted me out of the slimy pit,
out of the mud and mire;
he set my feet on a rock
and gave me a firm place to stand.
³ He put a new song in my mouth,
a hymn of praise to our God.
Many will see and fear the LORD
and put their trust in him.

⁴ Blessed is the one
who trusts in the LORD,
who does not look to the proud,
to those who turn aside to false gods.^]
⁵ Many, LORD my God,
are the wonders you have done,
the things you planned for us.
None can compare with you;
were I to speak and tell of your deeds,
they would be too many to declare.

⁶ Sacrifice and offering you did not desire—
but my ears you have opened
burnt offerings and sin offerings you did not require.
⁷ Then I said, “Here I am, I have come—
it is written about me in the scroll.^]
⁸ I desire to do your will, my God;
your law is within my heart.”

⁹ I proclaim your saving acts in the great assembly;
I do not seal my lips, LORD,
as you know.
¹⁰ I do not hide your righteousness in my heart;
I speak of your faithfulness and your saving help.
I do not conceal your love and your faithfulness
from the great assembly.

¹¹ Do not withhold your mercy from me, LORD;
may your love and faithfulness always protect me.
¹² For troubles without number surround me;
my sins have overtaken me, and I cannot see.
They are more than the hairs of my head,
and my heart fails within me.
¹³ Be pleased to save me, LORD;
come quickly, LORD, to help me.

¹⁴ May all who want to take my life
be put to shame and confusion;
may all who desire my ruin
be turned back in disgrace.
¹⁵ May those who say to me, “Aha! Aha!”
be appalled at their own shame.
¹⁶ But may all who seek you
rejoice and be glad in you;
may those who long for your saving help always say,
“The LORD is great!”

¹⁷ But as for me, I am poor and needy;
may the Lord think of me.
You are my help and my deliverer;

you are my God, do not delay.

Pslam 40

GOD IS GOOD!!!!

Hello all , Just a quick note on .Hope she is still having problems and the doctors are going to do a test on her bowels, they believe that the bowel has started to die or is to damaged and they will have to do another surgery like before .W e should know more tomorrow . So please keep praying for her and Amy

Thank you your brother in Christ Mike

Healed

Hope has had a much better day. God has been working and things are starting to move through. She has had a couple small poos, so it's starting. We are believing God has fixed this and we even took the car seat down so that she's ready to go when they say the word. Things are going to start moving fast. There has been much wrestling with God and trying to grasp how things work, but I don't have the energy to go into all of that right now. I will post about it soon. But thank the Lord with us that our big 6 lb 3 oz baby is doing better. Please continue to pray with us that she improves and everyone knows that God has done it.

Still in pain

well she still in quite a bit of pain , we are not having any success in get her bowels to start . The doctors are still just trying to make her a comfortable as they can , Amy was able to help with that by holding her almost all day. The big request is that God would intervene and get her bowels to work , this has been very hard on Amy and all of us to watch her in so much pain. We know she needs to be off her meds in order for her bowels to wake up, but it does not make it any easier. Please pray that God would give us the faith and strength we need.....Mike

Tummy Troubles

Our little Hopester is having trouble again. Her bowels have not started working right. They don't know if they just haven't woken up yet or if there is a blockage. They are trying to give it time before they do the barium enema because they don't want to put added stress on the surgery site. If it is determined that she does have a blockage, it will probably mean another surgery. Please pray for her. We don't want her to have to go through anything else. And right now she's in a lot of pain. Some of her bowels are really distended with gas and she has been crying a lot. Please lift her up in prayer tonight. Ask God to be merciful to this baby who has been through so much suffering.

What is wrong with you people?!

Hope is waking up now and she is not happy. I do believe this is the "I want food and pain meds!" face. The nurse practitioner, knowing that I had a sore throat and wasn't planning on coming in, called to see if I was feeling better yet so that I could come down and rock my baby. "She is really wanting to be held." It's a good thing Mike was up here and he was able to go down after work and hold her for about an hour.

I haven't been posting her weights because I didn't think they were very accurate at this point. She was 5 lbs 1 oz before surgery and 5 lbs 12 oz the day after. Can we say "fluid retention"? However, it's been a week now. She dropped down to 5 lbs 10 oz at one point but she is back up to 5 lbs 13 oz now. So I'm not sure she's going to go down very much. I just may have a 6 pounder on my hands before long. How huge is that?!

I am waiting to hear when they will re-introduce her feeds. She's had a couple of small poos, so things are starting to work. She is certainly willing to try eating again. Please pray that this goes well. We'll keep you posted.

Not much happened today. Hope slept away most of the day. They continued to wean her pain meds and ventilator, but she is not yet off of the vent. Please pray that she improves and can get off the vent. We really want her to heal and start in on her feeds.

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