Friday, October 31, 2008
She does seem like she feels a lot better. All of the nurses have commented on how much calmer she is. They have all fallen in love with her and can't wait to hold her! She's going to be rotten before Brad and I ever get a chance to get her home! The nurses really spoil all the babies in there. Each baby even has a pumpkin name tag on his or her bed for Halloween. A friend sent me a pumpkin hat, so I took it in there for the nurses to put it on Blair today and left my camera for them to take a picture.
The new infection in her lungs seems to be under control with the medicine they started on Monday. They took her off of two of the three antibiotics yesterday, since they found out that only one of them was needed for this particular infection. She is producing a lot of secretions still, but the doctor said that they aren't as thick as they were. They are going to try some breathing treatments today to see if they can get some more secretions out. If they can get her lungs clearer, he will think about giving her another go off the ventilator in the next few days. We still have no idea how much longer she may be in the hospital. There is really no way for anyone to estimate, so we don't even ask. I would rather her stay longer and know that she is well, especially in the midst of cold and flu season.
Her feedings today will be 10 cc every three hours. That's a little over 2 ounces a day, which is not much, but she has tolerated the feeding increases every day this week, so that is good.
Thursday, October 30, 2008
Wednesday, October 29, 2008
Today, Blair will be fed 3 cc every 3 hours, just over twice as much as they gave her yesterday. She will also be fed through a normal feeding tube instead of the weighted one that goes to the bottom of her stomach. The feedings have been going well, so hopefully he will continue to increase them.
Thanks to all of you who are keeping up with Blair's progress and praying for all of us. Pray that we get more good news tomorrow!
Tuesday, October 28, 2008
The doctor said that the cultures they did yesterday did show some signs of a new infection, so it was good that they had started her on antibiotics already. The count that alerted them of a possible infection came down slightly today, which he said was good. They will test the cultures to make sure that the antibiotics she is on will take care of the infection.
He said he is looking for more clinical advances rather than x-ray changes at this point: breathing slower / less labored, control of this secondary infection, and reduced pressure an oxygen levels on the ventilator. They have reduced the pressures a good bit in the last two days, so we'll see if she can stay there or can tolerate being weaned some more.
They increased her sedative a little today to help her rest a little bit better. Her reactions to being bothered are appropriate, but we don't want her to get mad too often, because that doesn't help progress! He reiterates that this is a slow process. After such a bad infection, Blair's lungs will have to work to repair themselves for quite some time even after her time in the hospital.
Monday, October 27, 2008
We began rotation with a different doctor today who is making some changes in Blair's treatment. He has been working with Blair's other doctors, so he was already aware of her sickness and her treatment thus far. We know that God has put him there for a reason and pray for wisdom for him. As I have mentioned, we are confident that these doctors will do whatever it takes for Blair.
When we got there this morning, they had already changed the type of ventilator that Blair is on. This one is supposed to deliver pressures differently in hopes that the lungs will not be over expanded and trap air. The x-rays showed maybe slight improvement in the secretions, but her lungs are a good bit over expanded.
Dr. Rodriguez said that there hasn’t been anything yet that has shown them that there is another complication, but we just need to prepare for this to be a slow process. He has a few goals in mind. One is to get her fed so she can gain some weight and get stronger. He changed her from morphine to another sedative so that they can feed her more effectively. The new medicine doesn’t slow digestion as much. For feedings, they are going to do a weighted feeding tube through her nose that extends to the bottom of her stomach, so breast milk goes directly into the intestine.
He also wants to make sure that they don’t do anything to complicate things, such as miss an infection, so they will still do cultures to make sure her blood and lungs are clear of infection. He said that there was one count that was a bit elevated on her blood work this morning, so they are going to start another antibiotic just in case there is a secondary infection. He said that the count could be elevated because of stress, and the cultures they are doing today will show if there is a new infection. If there’s not, he will discontinue the antibiotics after 48 hours. We are still waiting on the results for the other tests they ran last week.
Also, he wants to try to slowly reduce pressures of the ventilator so that we can give her another chance to breath without it. He did say that he doesn’t know when this might happen, but they are going to push her. The less time she spends with a plastic tube in her body the better. He will just watch her this week, push her as much as possible, and see how it goes.
Last week we did not see drastic improvement in Blair's condition, but she is still stable and resting pretty well. Hopefully we will see some improvement this week. We must remember to be patient and let God do His work on her and on us!
Saturday, October 25, 2008
Friday, October 24, 2008
We thank God that we have some positive news today. Her oxygen level is better: 40%. They have increased the ventilator pressures slightly, but they are still in normal range. She is closer to the goal of 30% oxygen, when they will again wean her off of morphine and give her another chance off of the ventilator.
Also, some of the tests they ran came back, and they were all normal. Another answered prayer. There are no new infections, and the infections she had are still gone. There are a few more tests that we expect results from in the coming days. We pray that these, too, will come back normal. I honestly thought that the doctor was expecting there to be something else wrong, but he told me again today that they are just ruling things out, since "big babies" usually kick pneumonia within a week to ten days. He said that even they are learning from Blair though, since they rarely see big babies that have two infections and are this sick. So again, maybe she just needs more time. She will continue getting breast milk today, since the feedings went well yesterday. They are also decreasing the number of labs they do on her, which means less sticking. I'm glad, since she's had plenty of experience already! I wouldn't want to be touched either if they were going to poke me every time.
So, hopefully Blair has a good day today. We are thankful for answered prayers and for your continued prayers for us.
Thursday, October 23, 2008
Her breast milk feedings are being restarted today, and she will still receive IV nutrition as well. She is still on morphine and is resting better than earlier this week. She had a stressful day yesterday with all of the labs they had to do for the new tests, so I was glad to see her sleeping. The nurses have this stuffed fleece arm and hand against her back and on her head which she seems to like. When Brad and I were there this morning, she was on her tummy, which she also likes. When it came time to change her diaper though, they just put it on backwards! (see pic) The fewer times they have to move her, the happier she is, they say. She definitely lets them know when they do something she doesn’t like. Brad says he has no idea where she got that from…
We are, again, so thankful for all of your prayers. I am also thankful for the strength that I know only God can give me and for my wonderful husband, who has been more to me (and to Blair) than I could have ever asked for during these past two weeks. This has been a tough week, but we know that God has us here for a reason, and that we have to trust Him. Keep praying for strength for us and Blair and for wisdom and patience for the doctors and nurses.
Wednesday, October 22, 2008
Brad and I are so appreciative of your prayers. Keep praying for Blair -- that she improves in the next few days, and that there is no other complication hindering her recovery.
Tuesday, October 21, 2008
They are going to start trying to feed her again today. Hopefully the morphine will not slow her digestion down too much and require them to discontinue feedings, because having something in her tummy could make her happier when she comes off of sedation again.
Please keep praying for Blair. Small setbacks have to be expected, but it doesn't make them easier to bear.
Monday, October 20, 2008
We found out this morning that her right upper lobe is clogged back up again. However, the pediatric pulmonary specialist thought that the breathing treatments would open it back up, so he said not to change anything they were doing yet. Blair has given her nurse today quite a workout. She pulled out her newly placed feeding tube. As she was fighting and gagging on her ventilator tube, she coughed up all of her breast milk that she had just gotten. Since she was so unhappy, the nurse and doctor decided that they would try taking her off of the ventilator to see how she would do. Then she pulled her IV out of her hand. She was able to stay off of the ventilator for several hours, but they soon concluded that she was working too hard, so they reinserted it.
I am not really discouraged, even though this has been our first rough day in quite a few days. I did not think that she was ready to breath completely on her on, so I was more nervous about her NOT being on the ventilator.
So we pray that tomorrow is a better day, that the right lung has cleared up again, and that she is calmer
We all can contribute to this special place by saving pop tabs from aluminum cans -- a painless way to help other families like us have a home near a hospitalized child.
Sunday, October 19, 2008
Happy tears are lots more fun to cry. Holding her was so wonderful and surreal. It's still so hard to believe that she's ours! After we got her situated in my arms and took some pictures, and she went right back to sleep and was so calm. I've heard from more than one nurse that she can throw a temper tantrum, so I was glad she didn't throw one on me -- yet!
Over the next few days, they will continue to push the oxygen level down and hopefully remove the ventilator. Continue to pray for strength for Blair as she goes through this week.
Saturday, October 18, 2008
Even though there are secretions, the infection is gone. All of her antibiotics are due to end tomorrow except for the anti-fungal, which ends on Tuesday. He said that they could start feeding her, but he wants to give that right lung another chance to clear so that she is more stable when they put milk in her tummy. She has been receiving nutrition via IV fluids, and her weight is still good. When they do feed her, she will start with a feeding tube to conserve energy and move to bottles after that.
Please pray that these breathing treatments today work and that the right side clears. When that lung gets open, we can think about removing the ventilator and eating.
Friday, October 17, 2008
Blair's left lung was mostly clear yesterday and remained so today. They propped her right side up yesterday to force air into the upper part of that lung, and it is expanding more today but with some secretions still. The respiratory therapist will continue to try to dislodge and remove the secretions. She will remain propped up today, and we pray that we will have both sides looking good soon.
She will be completely off of morphine tomorrow, so I look forward to seeing those eyes open! She's more active already, but she is usually sleeping when we are there. It's nice to see her relaxed though, because she gets really mad when they mess with her! The doctor says that waking her up should help, because she will fight, and her activity will help her body get rid of the secretions on its own.
Her ventilator settings are down to normal breath pressures after being elevated for the past week, and her oxygen is at 43%. When it gets down closer to air level (21%), they will think about removing the vent.
The doctor says that he wish she were improving faster, but we have no choice but to follow her lead. We pray that she continues to make steps in the right direction! He says that if I have any influence on her, to talk to her about it -- yeah right! I already know kids don't work like that.
Thank you all again for your prayers. I cannot say how much everyone's support means to us.
Wednesday, October 15, 2008
The x-rays showed that there is still a good bit of cloudiness (lack of air because of secretions) in the top lobes of both lungs, so her bed is tilted to let air rise to that part of the lungs and to hopefully allow those secretions to be expelled. The antibiotics are working, so we pray that her little body can get rid of these secretions that are blocking air from getting to all parts of the lungs.
Her bilirubin count has come down, so they have removed the overhead phototherapy lights and will keep her on a light pad until tomorrow. Although her little purple shades were cute, it's nice to see her eyes again!
We pray that she continues to make positive steps, so that she can be off of the ventilator soon. Your prayers and notes mean so much to us. We cannot say how much we appreciate every prayer and every message that we have received! Please keep praying for our little girl.
Monday, October 13, 2008
Last night, they called us to tell us that her blood gases were the best that they had been all day, meaning that she was doing well on the new ventilator. Today, she has made some more positive steps. She is still on the oscillating ventilator, but they have been able to back off the oxygen some. As of this afternoon, they were at 50%, and her oxygen saturation was still good. That is good, because she was requiring 100% oxygen. Now they are giving her half the oxygen they were before, and she is still able to maintain the appropriate levels in her body. The doctor told us that they are going to see how she does over the next couple of days and may change her back to the other ventilator if she continues to improve. Today, she obviously felt better, because she was trying to breath over the machine. They are keeping her sedated though, so she won't use the energy.
On this morning's x-ray, her right lung looked better, but there was still a some infection in the upper lobe of the left. The antibiotics do seem to be working, and her white counts continue to go down. The current plan is for her to be on the antibiotics until the 19th. She is jaundiced, so they have her under phototherapy lights, and she is wearing some stylish purple eye shades! This afternoon's blood gases were where they want them to be, which is great, since she is maintaining those levels on decreased oxygen from the machine.God has provided Blair with so many wonderful caregivers. Our experience at the Coliseum has been so positive. We are so grateful for the doctors and nurses with whom we have had contact throughout the last several days. Everyone has been so informative, helpful, and caring. We pray that God will continue to give them wisdom to make the best decisions for our daughter.
We're conservatively optimistic after today, but we have to keep in mind that she can still take a step or two back before she gets better!
On Saturday, Blair's echo cardiogram showed that the pressure on her heart had drastically decreased. Since this was a sign of improvement, they began trying to wean her off of the amount of oxygen they were giving her. However, by evening they had to increase it back up to 100%. Her throat cultures showed that she also had yeast in her trachea, so they began her on an anti-fungal medication in addition to the two antibiotics she's taking for the bacterial infection.
Sunday morning, they called to tell us that she had had some trouble overnight, so they had changed her to an oscillating ventilator. Instead of normal breaths, the oscillator gives really short fast breaths, around 600 per minute. The increasing secretions from the infection were not allowing oxygen to enter all parts of the lungs, so they hoped that the new machine would help. We also found out that on the Saturday x-rays, the radiologist saw a small hole in the right lower lobe of the lung. They planned to watch it closely to see if they would have to do something more in the coming days. The Sunday morning x-rays still showed a good bit of infection, although the outer edges of the lungs were aerated.
Sunday was a hard day for us, since we had received some good news on Saturday only to find out that she was worse on Sunday. However, all of the many prayers from all of our friends and family and even people we don't know are very comforting, and we are so grateful.
After a short and pretty easy labor, Blair arrived at 2:05pm! For being five weeks early, she's a good size: 6 lbs 2 oz. She is 18 inches long and has a good bit of fuzzy brown hair that sticks up all over her head!
Tuesday, October 7, 2008
Thursday, October 2, 2008
My doctor would like me to wait until at least next week, so I'm on medicine until then to hopefully decrease contractions. After that, I could go into labor, or I could wait several weeks. I'll keep you posted....