Lily's Pad

Lily turned a week old today! And she now has her own room!

Even more exciting...Lily is off of the ventilator and is breathing on her own!

It is so wonderful to see her little face and even hear her cry! (Sorry for all the exclamation points, but today has been a great day.) With my other four children, I always dreaded hearing them cry. With Lily, however, we couldn't hear her voice because she had breathing tubes down her throat which had to be placed in between the vocal cords, prohibiting her from making any noise. It was so heartbreaking to see her crying, but not having any sound come out. To finally hear her little voice reminds me of all the things I took for granted with our other babies.

After the events of last Saturday, it is such a blessing that our daughter is still alive at a week old. I thank God for this miracle and I thank you all for praying for her.

Laura and I are also very encouraged by the personal stories we have heard about other babies who were in similar situations to Lily and were told that they had severe brain damage, but are fully healthy today. These stories give us great hope. Thank you for sharing them!

Thank you also for all the generosity and support that all of you have shown in this past week. Words cannot express our gratitude. Also, to those who have shared this website with others and encouraged other to pray for Lily, I am eternally grateful! Please continue to do! Continue to pray for Lily's full recovery! Thank you!

P.s. The doctors tell us that there is only one more tube that has to come out before we can hold her!

General Update

Lily did well last night, despite the nurse who was caring for her not knowing how the lower portion of the blanket she was wrapped in became soaked in some fluid. She had a dry diaper, so that wasn't the problem. If Laura and I hadn't pointed it out, she probably would have let Lily sit in it all night, as it had been that way for a while. The nurse came on duty at 7pm and we arrived a little after 9pm. Needless to say, it wasn't very comforting having to leave her in the care of this nurse. If she missed something so obvious, how were we to know she didn't miss anything else?

This mornings visit was much better. Lily's nurse for the day, Kathy, is wonderful and seems to truly care for her. Lily's blood gases were up a lot, so they lowered her oxygen support on the ventilator, which means that she was pretty much breathing on her own without support. It shouldn't be long before she is completely breathing on her own! This will eliminate the big tube that is currently in her mouth. She has one other small tube, to feed her with, which they can put through her nose and down into her stomach, freeing up her mouth.

Lily has started to drink a little of the breastmilk that Laura has been pumping and she is tolerating it well. They plan to increase the amount they give her as well as the frequency.

It seems that everything about her is progressing well...except for the damage to her brain. They have stopped the seizures with medicine and they are finishing up another EEG today. She is getting another MRI next week which will hopefully give us a better picture of where she is at neurologically. The doctor is very up front with the reality of the damage (which is good) and he informed us that whatever damage there is, the brain won't be able to heal itself. But...where the brain itself cannot, we know God can! So please continue to pray for her. We should have the results of the most recent EEG tonight or tomorrow. Some positive news would be most welcomed after yesterday.

Timeline Of Updates So Far

Thursday
The MRI results came back and they were not good. They found suppressed brain activity and severe damage to the brain from the lack of oxygen she experienced at birth. Because the MRI was done not long after she was brought up to full body temperature and she was on a lot of medication, they are not sure if that was a factor in the results. They are also not sure just yet if the damage they found is permanent or if it can be healed. They are going to do another MRI next week to see if her body at full temperature helps to get better results. Also, even though the first EEG showed no signs of seizures, the one they just did showed activity of seizures. They gave her medicine to stop the seizures and they are going to continue the EEG for another 24 hours. A little positive news: after having another platelet transfusion, her platelets are now up. She is also doing better at breathing and getting a step closer to breathing on her own. She even had a little bit of milk today which she tolerated well. They will give her some more tonight to see if her stomach can handle it. If it does, they will continue to give her more and more milk.

Today's news is really hard for us. We had been getting good news each day and our hopes were gradually rising. We still have hope, but today has been emotionally exhausting. We are also physically exhausted from having to drive back and forth to the hospital where Lily is at (we live about an hour and fifteen minutes away). We, Laura and I, really need your prayers as well. We need prayers for strength and continued trust in the Lord. We do trust Him, we do know that he works good in all things, but please pray for an even greater increase. Most importantly of all, please pray for Lily! Please don't tire of praying for her. She needs a miracle and only prayer (and fasting!) will bring it about. Please pray that the damage to her brain fully heals. Thank you.

Wednesday
Lily had a good night last night. She is now off the cooling blanket and they moved her from the lung oscillator to a ventilator, which she tolerated well. After the ventilator, she will be breathing entirely on her own. Please continue to pray! In the next day or two, Lily will have an MRI and another EEG to check the status of her brain. We pray that there is no damage or signs of seizures!

Tuesday
As of this morning there is no big news, except to say that she hasn't had any setbacks, which is always good news. It appears that her swelling has gone down a bit. This evening at 5:30pm, they will take her off the cooling blanket and slowly start to warm her body up to normal temperature within the next eight hours. Then they will do an MRI to see how her brain is doing and how her other organs are. Please keep praying that her brain is okay and that she makes a full recovery! All of your prayers and support are working and we are incredibly thankful for them. 

Monday
Update 2 
The doctor also told us that they did not find any bleeding in her brain! Oh and on her last diaper change, Lily had a full diaper of pee, so the kidneys are working strong. Please keep the prayers coming! 

Update 1
We just talked to the doctor and so far everything compared to yesterday is positive. Lily's heart and lungs are looking much better. She is breathing more and more on her own and her platelet count is up. The EEG results showed no signs of seizures. We still don't know what the long term effects of the loss of oxygen she experienced at birth will have on her brain. Hopefully we will know more when they take her off the cooling blanket (see here http://www.chkd.org/Patients/Stories/Nailah.aspx) tomorrow evening. Please keep praying for a full recovery. Also pray for her doctors and nurses who are doing a wonderful job taking care of her. Everyone's prayers are helping so much. On Saturday, when Lily was born, the doctor told us that we needed to prepare for the inevitable death of our baby. Each day since, however, we have seen signs of hope and the tone of the doctors has changed as well. She is not in the clear yet, and it will be a long road to recovery, but it seems that we are headed in the right direction. Please continue to pray for a full recovery! Thank you! 


Sunday
Update 2
Today was a more promising day than yesterday. Lily is making small, but significant progress. We still don't know the extent of her injuries and she has a long way to go. Please, I beg you, keep your prayers coming! They are working. Both Laura and I are extremely touched and grateful for the outpouring of support for our little girl. Your prayers keep us going in this incredibly trying time. Please feel free to encourage others to pray as well, whether it be a simple request or sharing one of my status updates. The more prayers the better!

Update 1
Keep praying for a miracle. Lily was born yesterday by an emergency c-section and had lost almost all of her blood. She had absolutely no color to her when I first saw her. Also, her heart wasn't beating and they had to resuscitate her twice. Many of her organs have taken a hit and we don't know yet the damage, if any, to her brain. They have her on a cooling pad which helps prevent further damage. We just saw her and she is getting a lot more color. She is more responsive this morning and even opened her eyes. The doctor said that she improved a little bit last night and that the next 24 hrs are crucial. She is walking a tightrope right now. Please continue to pray!

Saturday
Lillian Faustina Maria was born by emergency c-section at 1:37pm at 36 weeks and 6 days, after the placenta detached from the wall of the uterus.