Sunday, December 26, 2010

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.

Saturday, December 18, 2010

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.

Tuesday, December 14, 2010

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!

Thursday, December 9, 2010

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?

Monday, December 6, 2010

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.

Friday, December 3, 2010

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.

Thursday, December 2, 2010

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.