Saturday, November 29, 2008

Trying Again

We didn't make it home last week, but Blair is doing well! She's got some fat cheeks and weighs just shy of 7 pounds. Her x-ray today looked good, and I think they have the vitamins and iron sorted out so that they don't bother her tummy. We're going to try to bring her home on Monday or Tuesday. We'll be spending the night at the hospital again Sunday night. Keep praying that she continues to improve and doesn't have a hard time with the transition from the nursery she's called home for almost two months!

Friday, November 28, 2008

Let's do it this time Hornets!

Tonight the football team of my alma mater (and workplace for six years) is playing for the state championship. We have never won the state championship, but has been state runner-up a few times. I have been to each of the Hornets' tries for the state championship, but this year is a bit different. This time my little brother is on the team. Because of his injury last week, he won't be able to play, but I'm so thankful he is well enough to attend. He's calling the toss to start the game off right! I hope this is our year! Good luck, Hornets!

The siblings after the game last week. John managed
a great smile even though he was holding his breath in pain!
At this point we had no idea how badly he was injured.

Wednesday, November 26, 2008

Change of Plans

Our going home today was not meant to be. Blair had a rough night with us last night, and we were glad to be able to call Stephanie and Mark, the nurse and respiratory therapist on duty. She got wheezy, and when a tummy ache from new vitamins made her mad, it got worse. I was able to calm her down, and the breathing treatments we gave her helped, but she is working a little to breathe still. They ended up doing a chest x-ray to see what was going on. It turns out that it was not the best idea to stop the breathing treatments earlier this week. She went back on a 6 hour schedule on Monday, but the two days she didn't have them regularly allowed her lungs to get clogged up in places. They are going to give her a burst of steroids and stop the multivitamin for now. We should see vast improvement in the next day or so. Monday will be the earliest we think about going home again. The whole thing is disappointing but not too upsetting, because now I feel more prepared to deal with a situation if something like this were to happen at home. The doctor said this type thing, unlikely still, would be the worst we would see. Until now, she had not had an episode like this is probably three weeks. Still, during the whole thing her oxygen saturation dropped but wasn't terrible. We're thankful for the learning experience and look forward to next week to see what God has planned for us.

It is a blessing too that my mom more available next week, since she's been with my brother this week. He is doing better and may get to go home today or tomorrow. Thank you for your continued prayers for all of us.

Monday, November 24, 2008

Heading that way...

So...WE'RE GOING HOME! Praise God from Whom all blessings flow! The plan is to spend the night in the hospital on Tuesday night and head home on Wednesday if all goes well. We're so excited and a bit scared, I guess. Blair will still be on oxygen and breathing treatments, so we do have a few things to learn between now and then. She is growing! She weighs 6 pounds 10 ounces now. We got to start breastfeeding on Saturday. That is going well, so I'm excited. Pumping is such a huge time commitment, so I hope that soon I won't have to as much. We pray that we can get home and that God is with us as we go it alone -- well, at least without our nurses who have become like family!

In other news.... My brother John was tackled (helmet to ribs) while diving for an onside kick during the football game on Friday night. He has a second degree liver laceration and is in ICU at the Medical Center. He got two pints of blood and some plasma yesterday. The doctors are watching his hemoglobin counts to see if they will have to do further treatment. If needed, they can do an arterial procedure to try to clot any bleeds. Right now though, he is just under observation. I think he feels ok. They have him on pain medicine that makes him itch, so they give him benadryl, and he's out. Please pray for his recovery as well.

We have had a big weekend, to say the least. I haven't been able to post, because my internet has been down in my RMH room, but I'll try to do better when we get home! Thanks for your continued prayers.

Friday, November 21, 2008

Last Bit

Miss Blair is still doing great, making us laugh with those hands, cute faces, and huge sneezes. She's up to 6 lbs 9 oz -- she's been eating a lot this week! She took 4 ounces during four feedings yesterday. She's such a piglet. She took over 3 ounces each feeding today, so she rested a bit from her Thanksgiving a week early! She was so hungry this afternoon when I got there to feed her. I guess she thought if she pressed her paci with both hands, something would come out of it!

She's still holding on to that last bit of oxygen. They haven't been able to wean her lower than the 25%, and sometimes she needs a little more. Dr. Connor increased her heart medicine slightly, hoping that may help get the oxygen requirement down some more. Her echo on Wednesday looked good though. Dr. Rodriguez comes back tomorrow for several days, so we'll see what he says about her chances of going home soon!

Thursday, November 20, 2008

Six Weeks

Blair's oxygen level stayed mostly in the 25% - 30% range Wednesday, which is good. She had good stats on 25% while I was there this evening. Dr. Connor thinks we might be able to go home without oxygen, so they will continue to try to wean her off of it. Mark, one of the respiratory therapists, is there tonight, and all the babies seem to straighten up when he's on duty! I never know what new settings of Blair's I'm going to find the morning after Mark has been there -- it's usually good though!

The doctor ended up changing her feeding schedule this morning, so now Blair gets as much as she wants every four hours.
She drank 3 ounces this evening. She drinks a bottle in no time. Eating is not a problem for this child! She weighed 6 lb 6 oz tonight.

Blair is six weeks old today. She is staying awake more now. She surveys all the movement and lights all around the room. She's gotten a bit spoiled though and lightly coughs when she wants attention! I think she deserves some spoiling! The nurses certainly don't mind helping. They got the nursery swing out for her today! They said she enjoyed it.

Wednesday, November 19, 2008

1 Thessalonians 5:16-18

Last night, Jay's Hope Foundation provided supper for us families staying at RMH. Jay Gaskins battled cancer for 2 1/2 years and passed away almost three years ago. Jay's parents Cindy and Jason Gaskins founded Jay's Hope to provide support to families who have children with cancer.

Cindy shared a verse with us during prayer and devotion after supper.
The verse really touched me, so I thought I would share it.

Be joyful always; pray continually; give thanks in all
circumstances, for this is God's will for you in Christ Jesus.

I Thessalonians 5:16-18

I have thanked God many times for the past six weeks and all that He has taught me during this time. I do realize that there are so many who have a road much longer and more difficult than ours, and I pray for God to give them strength. I hope that I will always be reminded to be thankful in all circumstances.

Tuesday, November 18, 2008

We're in the 20s!

I just talked to Blair's nurse. I wasn't able to feed her this evening, because they got a new admission, and we aren't allowed in the NICU while they are admitting a baby. So, I just called to check on her. They increased her feedings again today to 70 cc (over 2 oz) every three hours, and she has done well with it. That is a lot of milk for every three hours. The nurses keep expecting the doctor to change her to a four hour schedule, but he hasn't. Her weight has never really been a concern, but she weighed about 6 lb 5 oz last night. That is about a pound above her lowest weight.

Good news -- the night nurse said that her oxygen is down to 25%! This is the first time she's been in the 20s. And, the oxygen is on 2 liters, which is not a really high flow. Cherry, her nurse for the day, said Blair's lungs sounded better than ever, and the night nurse agreed. Cherry thinks that the medicine she's taking for her heart is making a difference. I sure hope so! They'll do another echo tomorrow.

It's so funny. I can't even count the times a nurse or I have said, "She's like a different baby." Every time there's improvement, she looks so much better. We think she's great, but then she's a "different baby" again four days later. It's nice to see this "different baby" though after last week with not much improvement. Maybe the home stretch...? No more mention of it, but we'll see.

Monday, November 17, 2008

Rocking



Blair's nurse ended up taking her feeding tube out yesterday, since Blair was waking up for all feedings and had taken a bottle for every feeding since Saturday morning with no problems. She eats really well, and she is not falling asleep or getting as tired during feedings as she was. She wakes up right on schedule ready to eat, and she only cries if she gets really hungry. She is a really good baby.


Blair's "O" face and thinking with those long fingers

Blair and I are getting good rocking time lately, since I'm at the hospital every three hours during the day to feed her. She loves her "groceries" as the nurses call it. She also loves to be rocked and loves to be talked to. She stares at anyone that talks to her with those huge eyes.

When we rock, I sing (really I'm better at humming) songs that I learned as a child. My cousin and I spent the night with Mema all the time when were wer
e little, and she sang to us at bedtime. We were never tired, of course, but I can still hear her tell us in a whisper to "lie real still" while she sang. One of my most vivid memories is of my cousin Wes who insisted that the girl come "'Round the Mountain" in a little red car. That was not my favorite verse, because she was supposed to drive six white horses! Mema also sang "Love Lifted Me," "Jesus Loves the Little Children," and many more. I know she looks forward to singing to Blair when we get her home!


Rocking

I thank God every day for Blair and for all of the prayers that are said for her and for us. So thank you to all of you who keep up with us and pray. I believe in its power, and Blair is a perfect example of many answered prayers.

Blair's Nursery

Mom and I went down to my house today to work on the last few things for Blair's room. We needed to hang curtains and put the letters that spell her name on the wall. Thank goodness Brad stopped by to help, because we had just about made a mess! We didn't get to hang the letters, because that would have meant that things around here always run smoothly, and they hardly ever do! I actually lost my car keys between yesterday afternoon and today. I have YET to find them. Since I had packed my car full of stuff that I needed to take home but couldn't get into my car, I had to leave it (with the letters inside) at the RMH and get mom to take me home to get my extra keys. That's the way it goes.

The nursery looks precious though. I absolutely love it! I got Blair's bedding from Javis Davis, a custom bedding company in Alabama and had some curtains made to match. At my baby showers, Blair received some precious picture frames and decorative things that added finishing touches to the shelves. Aunt Linnie did the precious paintings over the crib. Blair's Grandmom and Andad, Brad's parents, gave us the glider that I can't wait to use! Blair and I enjoy glider time in the hospital nursery, but it sure will be nice to use our own glider that reclines!






This wall needs work!

Saturday, November 15, 2008

Sneezes

Blair is still loving her bottles, but we had to decrease the frequency of them to every other feeding, because she gets really worn out. They just alternate tube and bottle feeding her, so I go at 8, 2, and 8 to feed her with the bottle. She's still spending a lot of her energy to breathe, so we need to give her some more time before we push her too hard.

We haven't seen much improvement on her settings and stats this week, but she's doing fine and
gaining weight, and the doctor is still optimistic about her going home before too much longer. Home is something that we've learned not to dwell on though!

Blair still responds well to the breathing treatments. They gave her a diuretic to help dry up some of the stuff in her lungs and reduce some
swelling, and she looks a lot better than she did midweek. Her face was swollen some Wednesday, but I really don't know why. An echo cardiogram this week showed that there is some increased pressure on the right side of her heart, so they are putting her on some medicine to help her heart work more effectively. Since Blair's lungs were so terribly diseased, her heart experienced increased pressure at the beginning, and they have been watching it. The whole physiology of it is over my head, but basically the right ventricle of the heart is working harder than normal to pump blood into the lungs. The nurse described it to me as one of the type hurdles that very sick babies meet along the way. Her heart is healthy, but it is not good for it to be stressed, so hopefully the medicine will help.

One of the funniest things that we experience almost daily is Blair sneezing. Each one is the textbook, cartoon, ah-ah-ah choo sneeze, and they make her so mad. They are just so much bigger than her! She usually sneezes three or four times, so last night I took a picture. I'm going to spare her the future embarrassment of posting the picture, but I'm glad we have it to remember! The pictures here are also from last night.


Thursday, November 13, 2008

Piglet

Blair is such a piglet. When she's hungry, she smacks so loud, and if her fingers are available, she sucks on several at the same time!

Wednesday, November 12, 2008

He Said That Word

I haven't posted in a few days, because I feel like I might be boring! Blair is doing fine, but we are still moving at her pace, which of course is not as fast as we want would like! We are still working on bottle feeding for every feeding. She loves to eat, but sometimes she gets tired and falls asleep or is breathing too rapidly, so they have to use the tube. She is waking up for feedings though, and when she's hungry she tells you. Up until the last couple of days, Blair had a soundless cry. She is still really hoarse, but she has some low tones to her cry now. From the color of her face when she gets mad, we will surely know when she has her voice back!

We hope that she will have all bottle feedings soon. She is still experiencing some issues with secretions from the lungs, which make her breathe fast and cough. As her lungs continue to clear, they will hopefully be able to further wean the oxygen. They have taken her down from high-flow to regular, which is good, and she has good stats on 30%, just above air levels.

This week we began another doctor rotation. Each of the doctors is so different, but we have been pleased. We have an older doctor this week, who has been a neonatologist for a long time. I don't talk to him quite as often as the previous doctors, because there aren't many changes from day to day, and I'm satisfied talking to the nurses. I did get to meet him though, and he mentioned the word "home." If all goes well, we may get there by Thanksgiving. We'll see. I"m ready to be home, but we are in no hurry, because we want her to be well. I just ran into a family last night who had taken their baby home a few weeks ago from the NICU where Blair is, only to bring him back this week because he got RSV, which is very serious for preemies and babies like Blair who have had chronic lung disease. Blair will be extremely susceptible to RSV and other illnesses for quite some time, so we do want her to be as strong as possible when she leaves. Even then, I hope everyone will understand that she won't be able to have visitors for a while, no matter how much I want everyone to see how beautiful she is!

I still feel so blessed to even think about going home, because we have come so far. God has been so good to us.

Sunday, November 9, 2008

One Month Old

The one month mark has turned out to be a day full of bottle feedings for Blair! She is doing fantastically taking a bottle. She eats so fast, you have to really watch her so she doesn't suck the whole two ounces down without stopping! It took less than one day for her to realize that when you put a cloth under her chin, she's getting food. Her mouth flies open immediately. The poor thing was still hungry when we got finished this afternoon, but we have to wait until tomorrow to see if she can have more than two ounces. I had no idea they were going to bottle feed her every three hours right away. I thought they would add a couple of bottles a day and work up to taking out the feeding tube, but they may take it out really soon (like tomorrow!). Blair has pulled it out several times in the last few days anyway. The doctor said that if she's awake and wants to eat at feeding time, give her a bottle.

So we've come a LONG way this week. She is also in a normal crib today wrapped in a tiny bundle! Brad said she looks like something that should hang on the Christmas tree.

Saturday, November 8, 2008

A Real Meal!

Blair got her first bottle today! She did great! The nurses and I were all nervous -- no one wants to mess up such great progress, but it worked out fine. She's being fed 55 cc today. Like a pro, she took 35 cc by bottle. We didn't want to push it, so she got the last 20 cc through the tube. None of us could believe how well she did. Blair's such a big girl! Of course we took pictures of the big moment. I think it wore her out. She went right to sleep and did not bat an eye when we put her back in bed.

There were no other changes for today. She is still doing well, and they are still working on weaning her oxygen. She continues to get breathing treatments as well.

After all that work...

Friday, November 7, 2008

Happy Blair

Everything is still going well today for Blair. I told the doctor that I almost don't feel like I have to stalk him every morning, since now we don't have such major updates every day!

She was awake again this morning when I went in, but she was sound asleep almost the whole time I held her this afternoon. Happens every time! She really is a different baby than she was two weeks ago. She is so much happier now, since she feels better. We hardly see her fuss at all. This morning, she was awake for quite a while but just looked around without crying. She's very content, even when she's not being held. I'm sure she'll change her mind about self-soothing, because I bet I won't be able to put her down when we get home.


Her feedings are now up to 50 cc every three hours, which is considered a full feeding. She has tolerated them well today.
They are talking about trying a bottle tomorrow. It depends on her breathing rate, so we'll see. They did take out the PICC line yesterday, so she is IV free! She is still getting oxygen, but her requirement has come down to around 35%.

We're working our way out the door, but I'm in no rush. I'll be a nervous wreck when we get home, I'm sure!


Getting just a taste of sugar water. She loved it!

Thursday, November 6, 2008

Answered Prayers

Four weeks old today! Blair was wide awake this morning when we went in to see her. I think she likes her new "house." She was nice and calm. She was breathing at a pretty normal pace, although she does still breathe fast sometimes. The doctor bumped her feedings again to 45 cc today and said that the nurse could try a bottle if her breathing is at a good rate. However, they definitely don't want her to aspirate milk at this point; she's come way too far to have to deal with that, so they may wait until her breathing stabilizes at a slower rate.

They are continuing the breathing treatments, which seem to be helping a great deal. I helped with her breathing treatment this morning. The whole time, Blair goes back and forth between acting like she wants to "eat" the vapors and trying to get away from them. It must be soothing to her though, because we gave her a pacifier and rubbed her head, and she went right to sleep.

A big step they are possibly taking today is to remove Blair's long term IV or PICC line that she has had now for over three weeks. They use it for fluids and antibiotics. Blair's feedings are now up to the full amount she needs, so if her feedings go well today, they will no longer need the central IV, since she will not need extra fluids, and she's not on any medication.

The nurses keep talking about how great Blair looks. They are as proud of her as we are. We are so thankful that God has given us such amazing caregivers for her; they, along with many prayers, have really made our experience more bearable.

Wednesday, November 5, 2008

Blair's New Crib

We got a good report today on Blair. The doctor she had made significant strides over the last 48 hours. Her x-rays were good this morning. The left side looked pretty clear and there were only a few secretions showing up on the right side. Her stats are good, and she is tolerating feedings well again, so we are thankful for answered prayers. We do still have some time though before she is completely well and we can think about taking her home, so we will keep praying for improvement!

Today was also graduation day for Blair! She has been moved to an isolette and got to wear clothes for the first time! Poor thing's been in her birthday suit for almost a month. I had some gowns in the car, so her nurse even put one of Blair's own gowns on her. They move babies to isolettes when they are no longer in need of critical care or if they are too small to keep themselves warm. In Blair's case, the isolette is not as much for warmth, but it is to give her a cozy environment with less noise. She looked comfortable in there, pacifier in place, of course!

Tuesday, November 4, 2008

Warm Toes

Today has been a pretty good day for Blair. I got to see her awake for a few minutes this morning, but she has slept most of the day. We think she has her days and nights mixed up, because her nurse said she was awake and looking around a good bit of the night.They had to decrease her feedings yesterday, because she was spitting up, but they have it back up to 30 cc today, and Blair has done fine. She is still getting all of her feedings through the small orange feeding tube in her nose, but hopefully they'll add a bottle or two soon.
Her breathing treatments continued today, and they added CPT or chest physical therapy, which they had done previously as well. They knock on her chest and back with a soft silicone bell-shaped
thing to try to loosen the secretions in her lungs. No worries. They knocked me with it too, and it's not even bothersome. In fact, I watched the respiratory therapist do it this afternoon, and Blair slept through the whole thing. We think it might feel good to her! The treatments and CPT must be helping, because they have been able to come down on her oxygen almost 10% today to 42%. She has been on 50% for a couple of days and has not tolerated a decrease until today.
Today, the nurse let me change her diaper twice! How exciting, right? Funny how doing a dirty job like that can make you happy when you're in a situation like ours. I'm sure I'll be looking for someone else to change her diapers before too much longer! The nurse also told me that Blair could have
shoes, so she's now got warm toes and is the most stylish baby in the NICU!Keep praying for continued improvement, even if it's small. We continue to be grateful for God's blessings and for your love, concern, and support.

Monday, November 3, 2008

Snoozing

Blair has the biggest eyes, and she does open them, but we seem to have trouble getting pictures of it! She knows she can sleep though! I imagine she gets worn out quickly, since she's having to work some to breathe. I got to hold her for a long time today. She looked around for a few minutes and then slept the rest of the time. She wasn't bothered at all when we put her back in her bed.

Looking comfy!

With Mommy

Snuggled up back in bed

Working Hard

Blair is still breathing on her own without the vent, but she's working pretty hard today. We just hope she doesn't get too worn out. Her x-rays today don't look better or worse. The doctor is doing two different breathing treatments today to help with her lungs. He increased her feeds up to 35 cc, over an ounce, every three hours. She is still tolerating feeds well, digesting all of the milk each time, so she is getting good calories.
We pray that these breathing treatments make improvement in her lungs, so she doesn't have to work so hard and that she continues to do well with the feedings.

Sunday, November 2, 2008

Day Two

We are on day two off the vent! Blair had a good night. She is still having to work some to breathe, but the doctor said that it's ok. I think she has done better overall off of the vent than he expected. She is still on oxygen, and her blood oxygen level has been good and stable, even when the nurses move her around, which is when it used to go down a good bit. The only change for today is that her feedings are being increased again.
When Brad and I got there this morning, one of the nurses was holding her. She is going to be rotten. They let me take her, and I got to hold her for a while.
Blair has already become quite a fan of her Sleep Sheep noise machine I took over there a couple of days ago. It really calms her. We may have just started a bad habit! One of the NICU nurses has a daughter that sleeps with one, and they have to take a noise machine everywhere they go! Blair also likes a pacifier. The nurses can hear her smacking on it in the next room! Maybe we'll get to try a bottle before too much longer.

Saturday, November 1, 2008

Off the Ventilator

Well, we're giving it another go off of the vent. I'm not nearly as nervous this time. God has been good to us, and we know that He will continue to answer our prayers. When we saw her this morning, she was doing well and breathing smoothly, blowing lots of bubbles! They will continue to give her oxygen until the secretions are no longer a problem and her lungs can do all of the work on their own. There is a possibility that she will need oxygen for some time, even after she goes home. It will take time for her lungs to completely heal.
The doctor increased her feedings today, and he took her off of the IV nutrition she has been on since a few days after birth. He will continue to increase feedings until she is up to the amount of milk she needs to keep gaining weight. Today, she is getting 20 cc every three hours. If breathing without the ventilator works out, we will be able to slowly introduce a bottle.
Her counts are back to normal, so the antibiotics have taken care of the new infection and will be discontinued in the next day or two. We will continue to pray that Blair improves over the next week!