Thursday, September 30, 2010

I needed that


Hope had a good day today. We really needed it. I got to do kangaroo care for an hour after I got there. She was awake and kept grinning at me. A couple of times she did these big, scrunch-up-her-whole-face smiles. I loved it! It was so good to see her feeling better. She was much more alert and active than she has been these past few days. She was really enjoying her binky too. I got a kick out of the way she was holding onto it. But this afternoon she got down right feisty. She kept pulling out her cannula and she would get pretty upset whenever a nurse would come fix it. (By the way, her oxygen saturation stayed in the 90s even when it was out.) Then she was screaming and flailing while I tried to take her temperature. (When I say screaming- it looked much worse than it sounded.) She was tired of people messing with her and she was letting us know. I can't say I blame her - I'd be mad too.

Other things are looking better today too. There wasn't any blood in her stool today. There is always blood there because the stoma bleeds when it is touched, but that is normal and they say she doesn't feel it. The area between the two ends of the bowel which are sticking out is having to be addressed. The skin has come apart, so they are irrigating it and packing it every 3 hours. But again they say this isn't uncommon and it looks fine. I'll take their word for it, because it looks pretty gross to me. But her lungs seem to be doing good. They've weaned her down further on her high-flow nasal cannula, so I'm hoping she gets off of it soon. Oh, and I found out that the nurse re-weighed Hope last night because I was so upset. Turns out, she was really 3 lbs 6.5 oz. She still lost, but that sounded much better to me.

The only hitch in our day was that Hope got a new roommate. Let's just call her "the Screamer." She's a very cute baby with a mop of black hair and big, wide eyes. And she seems to be very content - so long as she's being held. The nurses all just look kind of weary when they have to take care of her. I should have suspected something was up when this baby moved in with her own swing, bouncy seat, and stroller. Apparently they try everything to calm her down. This new arrangement might be interesting.
video

Wednesday, September 29, 2010

She's one of ours

Hope's eye surgery went well yesterday. The opthamologist was able to do a more thorough job on her immature eyes than she thought would be possible. So she may not need a second surgery. It's still too early to tell. But today when Carla and I went in to see her she was wrapped up like this. Carla was wondering why she was wrapped up so weird, like they were trying to tie her arms down. We asked the nurse if she had been pulling at her tube. "Well, she was doing that too. But I mostly did that because she kept putting her hand down in her diaper while I was trying to change her." Sounds like an Isaac kid. Now if she'd just have fingers in her mouth while the other hand was down there, she'd have it just about right. Maybe Andy or Mary can show her.

I just got off the phone with Hope's nurse. She just lost almost 6 ounces today. She's back to 3 lbs 2 oz. The nurse said it's no big deal- it was just fluid. But it is a big deal when you only weigh 3 lbs! That is so discouraging. If we don't get some good news soon I'm going to scream!

Monday, September 27, 2010

Hope had more blood in her stool, she lost 100 grams, and she goes back on the ventilator at 6:30 tomorrow morning.
Hope is scheduled for eye surgery tomorrow morning at 9:30. So please pray that the Lord will guide the doctors hands and give them wisdom. thank you for your prayers Mike

Sunday, September 26, 2010

Rocking

Today I spent nearly 2 hours rocking my baby. It was so nice. And she smiled at me. When I first got there I leaned in and started talking to her. She opened her eyes and grinned. I know she's awful small, but I think this was deliberate. She smiled at me 3 or 4 times. She is 2 and 1/2 months old after all, even if she only weighs in at 1620 grams (3 lbs 9 oz). As for the bleeding... she did have some blood in her bag today. It was not fresh and again the doctor doesn't seem too worried. He said she's looking so good that he really doesn't think it's anything major. He gave her platelets today and was checking her iron levels. I'm not sure exactly what that is about. Please continue to pray for her - that we wouldn't see anymore bleeding. And again pray for her eyes and that feeding her will go well. Thanks so much.

Saturday, September 25, 2010

Rough Day

Mike finished his training in Spokane and went home yesterday afternoon. I was supposed to follow this morning after stopping by to visit Hope. However, Mary got sick with a cold so we decided I'd better stay up here. So last night was pretty lonely. Then I got a call this morning just after 7. Wallace, one of our cats, had died. He had seemed fine last night, but they found him dead on the floor this morning. It was kind of hard to get the story because the kids were sobbing so hard. They buried him in the backyard. Add to all this the fact that Andy also woke with a cold, and Mike was having a great day. He decided to take the kids for a long walk to help them cheer up. I, meanwhile, headed to the hospital to visit Hope. When I got there Dr. Egger was waiting to talk to me. Hope had more blood in her diaper and in her ostomy bag. The doctor didn't seem too worried, but I was pretty scared. He suspected that she was having clotting issues because her liver wasn't working well. I'm not terribly sure how it all works, but apparently the IV stuff is hard on her liver and the liver contributes to clotting somehow. So he ordered a shot of vitamin K. I went to the pump room and called Mike to share this new concern with him. He was having troubles there too. Gabe had gotten sick while on the walk and was having diarrhea and they were trying to make it home. Aaagh! I went back to sit with Hope. They had already given her the vitamin k and were trying to draw blood to have some labs done. They couldn't get enough out of her arm, so they had to take it out of her head. I finally had to leave because it was taking a really long time and I couldn't watch anymore. Poor baby girl! But it turned out okay. When the nurse had done a heel prick earlier in the morning the blood had just kept oozing out. So the nurse explained that they were having a hard time getting this second blood draw because the blood kept clotting. This meant the vitamin k was working. Her bloodwork came back fine, which is great news. And each time they have done cares since then there hasn't been any blood in her diaper or her bag. Thank you so much, Lord! Gabe hasn't fared as well and has thrown up and has a fever. Please pray for all of our sick kids and for Mike, as he has his work cut out for him. Please continue praying for Hope too. I'm really wanting this to be the last of the bleeding problem. And continue to pray for her eyes. She will be getting checked on Mon or Tues. While your at it, would you ask that all goes well as they start back up her feedings either tomorrow or Monday? There is one last bit of good news. Hope is up to 1560 grams or 3 lbs. 7 oz. Yeah!

Friday, September 24, 2010

Improving

I just talked with Hope's nurse. She is at 1540 grams, or 3 lb. 6 oz. She has stayed between 1530 and 1540 for 3 days now, so they think she's gotten rid of the excess fluid and this is a true weight. Not too bad. She had a pretty good day today. There was some bloody, mucusy stool coming from her rectum, but the doctor didn't seem too concerned. There was evidently a little stuff left in there. He has decided to up her course of antibiotics from 10 to 14 days, but didn't act like he was worried. She has come down on her high-flow nasal cannula, which is really good. It would be so cool if she got off of her oxygen before too long. And the best part of the day.......I got to hold her for about an hour and a half. The nurse brought in a rocking chair and then handed her over to me all wrapped up in blankets. It was very nice.

Thursday, September 23, 2010

Back to the High Flow

Hope got off the ventilator today. Yippee! She seemed pretty happy to have that thing out of her throat. Can't say I blame her. She was awake for much of the afternoon. It was so cool. I was really having fun watching her. She would be looking at me and then her eyes would cross and she would be making spit bubbles. It was kind of funny. She is pretty amazing. She still only weighs 1/3 what Nate weighed when he was born, yet she's 2.5 months old. She is staying alert for pretty long stretches (an hour), but she is so quiet. She does occasionally cry (it comes out as a squeek), but not like a normal newborn. She's pretty cool.

video

Wednesday, September 22, 2010

a much better day

Hope had a much better day today. When Carla and I got there to see her, she was ready to be social. She stayed awake for about an hour just looking up at us. It was really cool. She looked a little pitiful still since she is retaining so much fluid, as evidenced by the picture with her double chins. Before all this her weight had gotten up to just over 3 lbs. She's weighing in now at 4. A lot of this is going to be peed out, but I'm curious to see how much.It was nice to see her alert and not seeming like she was in so much pain. We had some more good news this afternoon when the opthamologist came to look at her eyes. They are not at a point where she wants to do surgery yet. It looks like she won't get checked again until early next week. We're really asking God to have this clear up on its own and not need surgery at all.
video

Monday, September 20, 2010

Hey all , Hope is stable she seems to be in a little less discomfort today , praise God. She also had her eyes checked and they have not changed for the good or bad , but that good news it is just buying her more time to heal before she needs to deal with that. Her infection is looking better , the redness is going down, another praise. So if you can keep Her and Amy in your prayers , I will be in Seattle for the night and our friend will be here with Amy..Thanks Mike

Sunday, September 19, 2010

the recovery is long







Hope is recovering slowly She seems to be in a lot of pain , they are giving her morphine as needed and some other drug that will give her amnesia . Her infection is still there but she seems to be fighting it well , its just hard to watch her in so much pain . Please pray that the Lord would ease her pain and keep her comfortable . Amy is doing better she seems to have a much more positive attitude , please keep her in your prayers..more later Mike

Saturday, September 18, 2010

Stoned


Hope is resting today. She is hurting, but they are giving her morphine. She tries to open her eyes, but she really looks drugged. The opthamologist came by and rechecked her eyes. They are not any worse, so she doesn't need surgery right away. They will recheck her eyes on Monday. This is a relief, because she really needs to rest. She is a sick baby girl. Her infection is still there, though the antibiotics are starting to work. We'll keep you posted.

Friday, September 17, 2010

she's out

Hope is out , they had to remove about 3 inches of her intestine and they have a clostimie and she is doing better. The next 24 hrs will be the hardest , more to come I am typing on my blackberry. Thanks for praying. Mike

Hope is going in

Hope is going in for the bowel re section
@ 1pm so please pray.

Hopes condition

Hi all here is the latest on Hope She has been taken to sacred heart her bowls are very inflamed and she needs to be near the surgeon . As of right now we are a wait and see mode , she looks better now that she is on morphine but please keep her in your prayers. Sorry more info later. Mike

Wednesday, September 15, 2010

Still growing

Hope gained another 20 grams today. She's almost to 3 lbs 1 oz. Good deal. I'm always hoping to hear that she's gained 2 ounces, but at least she's going up. We'll take it.

We had a meeting with the opthamologist this afternoon to get some questions answered. It would be a little too hard to explain stuff here, but we feel better about things after talking with her. However, we are still praying God heals her. Please keep praying with us. We'll update as we hear more.

Tuesday, September 14, 2010

Chunk

She did it! She hit 3 lbs! Thank you, Lord. Now please fix her eyes.

ROP

We just got home from the hospital after meeting with the opthamologist. When she checked Hope's eyes 2 weeks ago, they were fine. Today they are showing ROP, or retinopathy of prematurity. Rather than try to explain that on my own, I'm just going to quote from the pamphlet they gave me. "ROP occurs when the blood vessels in the retina suddenly stop growing normally. When this happens, the developing peripheral or outer retina does not have an adequate blood supply. If untreated, ROP can cause the retina to detach from the back of the eye (a retinal detachment), which can lead to blindness." This disease can sometimes skip stages and progress really quickly, thus being called Rush disease. This is what Hope has. The doctor said it is developing at an alarming rate. Hope is really young - they usually don't get to this point until they are at least 35 weeks. Hope will be 33 weeks on Thursday. The doctor will check her eyes again on Friday morning. If they have not improved, she will perform laser surgery on Friday afternoon. Again I'm going to quote from the pamphlet. "To perform the procedure, the baby is sedated, and the pupil of the baby's eye is made bigger (dilated) with eye drops. An instrument called a lid speculum is used to hold the baby's eye open during the procedure. The laser is aimed at the peripheral retina through the baby's pupil. Since the laser treats the peripheral retina, the baby will lose some peripheral or side vision, and this may cause some reduced night vision. This usually does not present a problem for the child as he or she grows older." The doctor said the surgery lasts 1-2 hours and is done in the NICU. One of the nurses told me it is not as hard on them as the PDA ligation she already had. However, if she has this she will need to go back on the ventilator and will be off of her feeds for a bit. And the doctor didn't think one surgery would get it all in Hope's case because she is so young. So she thinks she'll wind up with 2 surgeries. And if that doesn't work, she'd need to be flown to Portland for some other operation. So, here is what we're asking everyone to do: Please pray that when the doctor looks again, her eyes are better. God has done amazing things in this little girl's life and we are confident He can heal her of this. Please pray with us about this. We are going to call the doctor with some more questions tomorrow. We'll keep everyone updated.

Monday, September 13, 2010

So Close

Just a quick note to say that Hope is 2 lbs 15 oz tonight. She's also off of cpap. She is only on the high-flow cannula now. Yay! No more head gear! Isn't she getting big? Sorry, but I didn't snap any pics today. We were late getting to the hospital because all of downtown Spokane is torn up. We called to ask her nurse to wait a few minutes, but she'd already done her care time. She'd done it early because Hope had pulled her feeding tube out. "How did she do that?" I wanted to know. "Isn't it taped to her chin?" "Yes it is, but she pulled it out of her mouth anyways. It got all in her hair." Good job, Hope.


Sunday, September 12, 2010

Almost there



We made it up to the hospital for Hope's 8 pm care time. This is when they weigh and measure her. The scale is actually right there in the bed. They lay down one of her diapers (to even out against her diaper that she's wearing), pick her up and hold her for a minute, remove the diaper, and set her back down. Then presto, the bed tells you how much she weighs. So we waited to see the results for tonight and.......she weighed 1 lb 13 oz. What? She lost almost a pound? So the nurse reweighed her and she was 800 grams. Then 880. Then 900. Then 910. And finally, 1200. At this point the nurse went and got a regular scale and it turns out that our girl is 2 lbs 14 oz. Yay! She's almost to the 3 lb mark! The nurse is going to weigh her later tonight because that is a 3 oz gain. However, my suspicion is that last night the bed didn't give an accurate weight either. I guess we'll see when I call in the morning. Oh, and for the record... her temp was not 96.4. Mike snapped the shot while we were still taking it. She was actually 97.1, which is a little low. They like them to stay above 97.6. They had turned down the heat in her bed, but the nurse was going to turn it back up. We didn't stay long because Hope was really sleepy and the nurse had a lot to do. We'll go visit some more tomorrow. Oh, I almost forgot. She is 15.5 inches long now. Go Hope!

Friday, September 10, 2010

Big Eyes


I woke up feeling really anxious this morning and didn't want to start my day. I really wanted to avoid going to the NICU. But I had an appointment this morning with my therapist and she assured me I was fine. The therapist is located in the OB/GYN office and I had an appt with the nurse practicioner afterwards. She was checking my incision, but she also assured me I was fine. So I grudgingly headed off to see my girl. I am so glad I did! She was awake when I got there and the nurse told me I was welcome to hold her if I wanted. I decided to go ahead, even though it was lunchtime and mom and I were both starving. That little girl stayed awake the better part of an hour while I held her. She just kept looking up at me and it was so sweet. She just seemed like she was so happy to be visiting. Her numbers were perfect while I held her and they didn't bounce around at all. I even moved her around a bit because she was acting like she wanted to move her head the other way. She pulled out her cannula multiple times and even that didn't seem to upset things. It was the best visit. As I said, I wound up holding her for the better part of an hour. As I was holding her I actually started to feel like things were going to be okay. We're going to make it.

I just got off the phone with the NICU and Hope weighs exactly the same as last night. Pooh! I keep wanting her to gain. But overall she's doing really well. Thank you, Lord!

Thursday, September 9, 2010

Sweet Pea

Hope is doing great. I have been able to do kangaroo care with her for the past few days. She is getting to be more alert when we visit. I have been getting to help with her care time and am even improving on changing those wee little diapers. (She has moved up a size, though. I think these could probably reach her armpits it you didn't fold them over.) She is now getting shots 3 times per week to stimulate her bone marrow to grow red blood cells so that she won't get anemic and need any more transfusions. She also gets iron to help with anemia and caffeine to stimulate her breathing. A dietician sees her once a week and makes recommendations for which formula should be added to her breastmilk. They try to add in some extra calories and calcium. She also got a bigger nasal canulla today. She's growing. She's also growing lots of hair. You might even say she has fur on her shoulders. Good thing it will be cold weather when we get her home and we can dress her in long sleeves! :) I just got off the phone with her nurse and she gained 50 grams today. She's up to 2 lbs 11 oz. Yay! Thanks again for all your prayers for her.

Could I ask you all to pray for me too? Even though Hope has been doing so well, I am really having a hard time. I have been so worried and anxious about getting sick that I haven't been wanting to visit the NICU. Mike and my mom have been having to make me go in and see my baby. Each time I go I sit and worry that I'm going to come down with something and I will have exposed Hope. Please pray that God will be merciful and keep illness far from our family. Pray that I will feel good and also that I will have peace and be free from these anxious thoughts. I've been hesitant to blog about this, but I feel desperate enough that I'm willing to beg for your prayers on this. Thank you for lifting me up.

Tuesday, September 7, 2010

Getting bigger

Sorry, I don't have any pictures to post. My mom is up here and all the video and pics are on her camera. I will try to remember my camera tomorrow. I did kangaroo care with Hope again today and it went really well. She is not quite so scary to handle now. She stayed awake for a bit of the time I was holding her and she kept looking up at me. It was very sweet and comforting. We are concerned about her eyesight because these preemies can have a lot of vision problems. So although I can't tell what she is seeing, she definitely seems to be looking. That is reassuring to me. It's fun that she seems to be awake more too. I just called and talked to her nurse tonight and she gained a little more than an ounce today. She is now up to 2 lbs 10 oz. Keep up the good work, Hope!

Sunday, September 5, 2010

Weekend pics


Yesterday I got to do kangaroo care with Hope. It felt like holding a baby. She didn't have her head gear and tons of wires hooked up to her. And I wasn't wearing gloves so I was able to feel her soft fuzzy head. Pretty exciting. Today we took the kids to Manito Park for the afternoon. It was lovely but a little on the cold side.

Friday, September 3, 2010

Tonights visit


Hope got her pic line out today. She now has nothing sticking in her. Hooray! I thought they were going to need to leave the line in for medicines, but apparently they can give her everything orally. It's so exciting. She's growing up! She also gained back that 20 grams she lost yesterday. Mike and I will go see her again tomorrow and we'll try to post more pics then. It was just a short visit tonight because it was almost 10 by the time we got there. Hopefully we'll get to spend more time tomorrow. video

Thursday, September 2, 2010

Minus 20

Well, Hope was down 20 grams tonight, though the nurse said she still checks in at 2 lbs 9 oz. I guess we can't grow by leaps and bounds every day. But everything I hear from the nurses at this point is along the lines of "She's doing great!" and "She's so cute!" This nurse was just finishing up her care time and said that Hope had a cute little smile on her face. Wish I could have seen it. I'm sure this was just a twitch, but I had asked one of the nurses about milestones. I knew that walking and talking and such would be "delayed" if you counted from their birth date, but I had wondered about smiling. This nurse said that smiling was something that they saw earlier with these preemies. She didn't say exactly when, just that it wouldn't be so far behind as other things. Can't wait.

Wednesday, September 1, 2010

Pudge

Just a quick note to say that Hope gained another 70 grams today. She is now 2 lbs 9 oz. Yay!

Fashionista

Our baby is wearing clothes! And she's more than just skin and bones now. Admittedly not much more, but look at those legs and cheeks. There's a little something there now. And I'd like to point out that she has nothing hooked up to her arms now. She still has 1 IV in her foot, but that's it. She will be up to full feeds withing the next couple of days, which means no more IV fluids. The line can't come out quite yet though since she is still getting hydrocortisone through it. The doctor didn't think she'd be off of that in the next week, but it won't be too long. The opthamologist looked at her yesterday. Her eyes are immature, but they didn't see anything wrong. They will check her again in a couple of weeks. The doctor told me that if they suspected something was wrong they would be checking more often than that. So praise the Lord! She continues to gain weight. And yes, she is 2 lbs 7 oz not 1 lb 7 oz. Ooops! They only weigh her once per day at the 8 pm care time. I'll try to update tonight after her new weight comes in. The only other thing to say is that she has been pooping well without glycerin. Good girl!