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

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.

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.

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.

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!

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!