Gained one pound...

Lily has gained one pound since birth. Today she is 2 lbs. 9 oz. Daniel and I had a meeting with Lily's doctor and couple of her nurses yesterday. We talked all about how Lily has been doing and what to expect in the coming weeks. Lily is really doing amazingly well. She had her 4th (I think) brain ultrasound on Wednesday this week. It came out well. The blood clot in her brain continues to shrink (just what they want to see). Her breathing is good. Doc said they will be thinking about stopping her doses of caffeine this coming week and possible switching her from high flow to a nasal cannula (if she does well). Next week Lily will have another eye test and at some point in the future, a hearing test as well. They continue to try and adjust her feeding to help her gain weight - the doctor said they'd check how much protein she was getting - to be sure she's getting enough - and possibly add some protein powder to her feedings if she needs it.

One of the biggest answers to prayer this week has been Lily's hematocrit levels (in her blood). On Wednesday, they were a bit worried as her level was low (25). The first time Lily's blood crit was low, they gave her a blood transfusion. The second time, they gave her some medicine. We certainly were a bit worried, hoping she wouldn't need another transfusion. But Praise God - on Thursday, she was back up to 31! It was really good news.

Aunt Lydia has been here helping out this week. We have been very thankful for her. Daniel and Lydia went to the hospital last night and Lydia held Lily. Here are a few pictures...

Lily's nurses say she's an active little one always moving and scootching about - she was all askew when Daniel and Lydia when to visit.

Auntie Lydia and Lily

Grandpa John holds Lily

Yesterday, Grandpa John was able to hold Lily for about an hour. I am still sick (recovering from a nasty head/throat/cough/runny nose cold). And now Daniel is starting to get the cold too. Boy, are we a mess! So -- we asked Grandpa John to hold Lily for us. He was fully initiated as Lily spit up some milk on him. Grandpa had to yell, 'Help' to get the nurses attention. :)

Lily is up to 2 lbs. 7 oz. She hasn't gained any weight these past couple of days, so her doctor has been upping her calories and the amount she receives little by little. We're hoping that she'll get to where she gains about an oz. a day. She has another brain ultrasound tomorrow. It's just one more precautionary check - we assume everything will come out fine.

4 Weeks Old

Lily is 4 weeks old now. She is up to about 2 lbs. 4 oz. and the doctor put her back on high flow for breathing. She also had an eye test this week. They look to make sure her optic nerves are coming together correctly. In preemies, the nerves are often just not developed yet. This is the case with Lily. Currently she has no problems; her eyes are just under-developed --- and it's just something they watch to make sure her eyes develop correctly. They'll test her again in two weeks.

Unfortunately, I haven't been able to see her since Monday (I have an awful cold). It's a bummer -- I really miss being able to hold her. Daniel has been faithfully going in and holding her everyday. Auntie Lydia (Daniel's sister) arrived late last night to help take care of Jude for a week - we are so happy to see her and have her help!

We continue to receive phone calls, emails, and delicious meals from so many family and friends. Thank you so much to each and every one of you. Thanks also to those of you who live out of town or state and have stopped in or called to support us - we love you! Thank you for your prayers - we appreciate them and continue to covet them for Lily.

Bath Time...

Yesterday, Daniel and I gave Lily her first bath in a little tub. I think she enjoyed most of it. It was a lot of fun to be able to see her without all her cords and breathing mask on. Here are a few pictures...

2 lbs!

Lily weighs 2 lbs. today - hooray! The nurses gave her this sweet little card to display by her bed to congratulate her. Not much else to report - she's doing well breathing with the cpap mask and she's up to 20 ml of milk every 3 hrs. Love you baby girl!

3rd Brain Ultrasound

Lily had her 3rd brain ultrasound today. It turned out well. The doctor said the blood clot in her ventricle had gotten a tiny bit smaller again. This was good news. I guess it will take months for her body to entirely clean up the blood clot. It was good news that there was no new bleeding and that the blood clot hasn't blocked the ventricle passageways that allow her spinal fluid to flow. Everything looked stable.

Other news... Lily is off of her IV. She is getting 18 ml of milk today. She is back on her CPAP mask for breathing. They took her off of the high flow because she was having a hard time with it. They will probably go back to the high flow in a couple of days. And she's 1 lb. 15 oz today! Yeah... 2 lbs here we come!

That's all I got for tonight - it's late - and I'm wiped out. Love to everyone. Thanks for all the prayers and emails and comments we've been getting. We are encouraged by them and so appreciate the personal notes.

Band about my wrist

I am still wearing the baby band around my wrist that the hospital gave me when Lily was born. It identifies me as Lily's mom and gives me access to the NICU. Daniel has one also. Funny the things people notice when I'm out shopping or in a doctors office - so often they comment on my wristband and of course ask about my baby. "Oh, you had a baby girl - Congratulations - what's her name - how much did she weigh?" I'm beginning to dread this particular conversation. I often consider lying, just to avoid the rest of the story. It is difficult to answer, "My daughter Lily weighed 1 lb. 9 oz.". It's almost unbelievable - so tiny - less than 2 boxes of butter. But ...well... I answer truthfully, sometimes with slight tears in my eyes. The other person is always kind ... and then I remember that she is in excellent care, she is growing ( 1 lb. 14 oz. today), and ultimately God is watching over her.

Where to be?

I've been finding it hard to just be lately. When I'm with Lily, I feel like I should be with Jude. When I'm with Jude I feel like I should be with Lily. When I'm with neither of them I feel like I should be with Daniel or both of my kids somehow. Whew. It's exhausting. I have to tell myself that where ever I'm at is ok and to enjoy the moment.

Regarding Lily - she weighed - get this folks - 800 grams last night when I went to hold her. That's 1 lb. 12 oz! We were very happy!

710 Grams

Yesterday, I went in to see and hold Lily in the hospital. She weighed 710 grams. That's 10 grams more than she weighed at birth! It was a good day - so good to see her finally pass her birth weight. Today she is back down to 700 grams, but certainly soon she should pass 700 and never look back. Lily is getting 10 ml of milk every 4 hours and she's also getting a milk fortifier (something like formula) in order to give Lily a few more calories. So wonderful to see Lily doing well for a couple of days - it's definitely encouraging to Daniel and I.

2nd Brain Ultrasound Results

Lily had her brain ultrasound this morning. Dr. Quissell called us this afternoon and gave us the results. Good news. She said the blood clot (in the ventricle) had gotten a bit smaller. They are planning on doing another ultrasound in another week to make sure it continues to move in that direction (smaller); thus the doctor said this next week is critical. Worst case scenario is that there is more bleeding next week or increased pressure in her brain. All the signs right now (and how well Lily is doing) point to her body being able to continue to break down the blood clot. We hope and pray everything continues to move in this direction.

The last time Lily had a brain ultrasound there was also some bleeding outside of Lily's left ventricle. It's hard to understand (let alone explain) - but to make a long story short, this particular bleed could mean developmental problems for Lily in the future. There is really no way to know for quite some time. As Lily is a preemie, her brain is not fully formed and won't be for some time. It could be that her brain forms its correct connections around the spot of bleeding and all is well. Or possibly some of the connections could be prohibited and she will have some developmental problems. It could go either way and there is no way of knowing. All we can do is pray that God would allow her brain to form correctly and pray she doesn't have any lasting problems because of the brain bleed.

Thank you everyone for your prayers. Today has been a hard day for Daniel and I. After we received the phone call from Lily's doctor, we looked at each other, smiled with relief, and then both admitted we were exhausted from waiting and wondering all day. I believe we will both sleep much better tonight.

Monday

Lily is doing well today. The doctor heard another heart murmur over the weekend and scheduled another schocardiogram for Lily yesterday. Thankfully - it resulted in good news. The little value next to her heart was still closed. Whew! She has another little valve (or something like it) that is open. Dr. Quissell says it's nothing to worry about. It's pretty common in babies and usually closes on its own during a babies first year of life. Praise God! So her heart is doing well. She's had fewer bradies over the weekend. They checked her bilirubin levels (for jaundice) early this morning and it was very low (1 or 1.5), so they were able to turn off the light. Yeah! Her breathing is still good and they are upping her feedings. Today she gets 3 ml every 4 hours and they will up her to 4 ml tonight. So -- all really really good things. We are still a bit worried about the bleeding in her brain. But we won't know anything more until Wednesday when they do an ultrasound. So far, there have been no signs that her brain is swelling or is under any pressure, so that's good. We keep hoping and praying for a good result on Wednesday.

Despite all the good news today, it was a tough weekend. Funny how even the littlest things like hearing she needs another echocardiogram can just sky rocket my fears and emotions. It's difficult to live through (though easy to look back on, especially when the news turns out to be good). Thanks to all of you whom I've been able to talk on the phone with. I really appreciate all your encouragement - it definitely helps get me through.

Lily Days 9 & 10

Lily has been doing better these past couple of days. The blood transfusion helped her color and overall wellbeing immensely. She has been having less bradies. They started her on an antibiotic on Thursday night just to make sure she wasn't getting an infection. So far her cultures have been negative (no infection) and if that holds true tonight - they'll take her off of the antibiotic tomorrow morning. It was a precautionary measure (since with her being so little, if they get behind an infection, it's hard to catch up). But so far, so good. They're also upping her feedings today. Today she's been getting a whopping 2 ml every 4 hours. :)

We won't know more about the blood clot in her brain until this coming Wednesday. They'll do another ultrasound of her brain and see what progress (if any) is being made.

Did you know that today is the first day of August? Whew praise God! I don't think I can handle any more of July. 8 years ago Daniel and I got married in July thinking - July should be a good month - not much happens in July. Right. Now, not only do I have an anniversary on July 14 - but within 10 days following our anniversary I have two kids birthdays! Crazy - Who would have thought? Of course, this July has been way too full of events. Hello August - I hope August is a little less exciting.