Tuesday, December 31, 2013

Five Weeks Old

This past week and a half has been pretty non-eventful...which has been nice! We're just continuing to get settled into our new life with five kids, remembering just how hard it is to have a newborn.
Lily is still nursing well and as of Friday, weighed about 9 pounds (according to our bathroom scale), up from a little less than 7 and a half pounds just ten days earlier. She'll outweigh everyone soon, if she keeps this up!

Did we mention that the kids love her?!

Friday, December 20, 2013

Four Weeks Old

Saturday marks one week home (and one month old) for Lily! She is doing very well and is loved loved loved by her brothers and sister. It's a little crazy having five children, the oldest who is just turning 6 tomorrow, but it is so much easier now that Lily is home and not at the hospital.
Lily had her first plain ol' pediatrician visit on Tuesday morning and had gained 6 ounces from Saturday afternoon when she was discharged from the hospital. In the three weeks she was at the hospital she had only gained 7 ounces. It would appear that she's enjoying being able to nurse on demand! Lily is a champion nurser and is only using a bottle for getting her medicine.
She is getting stronger neck muscles and is able to look around a little from our shoulders and is able to focus on and track people and the little black and white cards from her mobile.

We are so thankful for your extremely efficacious prayers thus far and ask that you please continue them! Thank you especially all those that have joined in the novena to St. Servulus of Rome, patron against cerebral palsy.

Saturday, December 14, 2013

Join Us In A Novena

Lily is now home with us (Deo gratias!) and is nursing exclusively. Inspired by the success of the novena to Our Lady of La Leche (thank you for those who prayed with us), Laura and I have decided to begin a novena to St. Servulus of Rome, the patron saint against cerebral palsy. We will begin tomorrow (Dec. 15) and finish up on his feast day (Dec. 23). I ask and encourage all of you to please pray along with us for the complete healing of Lily’s brain. Thank you so much for all of your prayers and support, especially those who have generously donated through the donation site, as well as those who have done so outside of the site. To all who have donated I hope to one day thank you personally. To all those who donated anonymously, please know, whoever you are, that you have deeply touched us with your generosity and support. Thank you!

Novena to St. Servulus of Rome, patron against cerebral palsy

O St. Servulus, you desired to always give praise and honor to the Lord, our God. Together with you we offer our thanks and praise to the Lord Almighty. O St. Servulus, you were afflicted with palsy from birth, yet you never complained about your sufferings and cheerfully lived a life devoted to Christ and His word in Holy Scripture. On account of your meritorious suffering, I ask for your intercession for the complete healing of Lily from all the damage that was done to her brain. Intercede for me also to always be cheerful in the Lord.

St. Servulus of Rome, pray for us!

The novena is to be concluded on the ninth day with the Te Deum:

O God, we praise Thee, and acknowledge Thee to be the supreme Lord.
Everlasting Father, all the earth worships Thee.
All the Angels, the heavens and all angelic powers,
All the Cherubim and Seraphim, continuously cry to Thee:
Holy, Holy, Holy, Lord God of Hosts!
Heaven and earth are full of the Majesty of Thy glory.
The glorious choir of the Apostles,
The wonderful company of Prophets,
The white-robed army of Martyrs, praise Thee.
Holy Church throughout the world acknowledges Thee:
The Father of infinite Majesty;
Thy adorable, true and only Son;
Also the Holy Spirit, the Comforter.
O Christ, Thou art the King of glory!
Thou art the everlasting Son of the Father.
When Thou tookest it upon Thyself to deliver man,
Thou didst not disdain the Virgin's womb.
Having overcome the sting of death, Thou opened the Kingdom of Heaven to all
Thou sitest at the right hand of God in the glory of the Father.
We believe that Thou willst come to be our Judge.
We, therefore, beg Thee to help Thy servants whom Thou hast redeemed with Thy
Precious Blood.
Let them be numbered with Thy Saints in everlasting glory.

V.  Save Thy people, O Lord, and bless Thy inheritance!
R.  Govern them, and raise them up forever.

V.  Every day we thank Thee.
R.  And we praise Thy Name forever, yes, forever and ever.

V.  O Lord, deign to keep us from sin this day.
R.  Have mercy on us, O Lord, have mercy on us.

V.  Let Thy mercy, O Lord, be upon us, for we have hoped in Thee.
R.  O Lord, in Thee I have put my trust; let me never be put to shame.


The other kids are ecstatic!

Resting with Mommy
Deo gratias! And thank you everyone for your prayers! Lily is now nursing like a pro and we are so happy to have her home--sans any tubes or monitors! Please continue to pray for her miraculous recovery. I will have info later tonight about a novena we will begin tomorrow that we would love for everyone to pray along with us.

Friday, December 13, 2013

Homeward Bound

No tubes!
 Lily is  officially coming home tomorrow! She continues to do wonderfully with her feedings and at two of her feedings today, Laura breastfed her (at which she did excellently). We are very excited to finally get to bring her home. Thank you for all your prayers and please continue praying for her full recovery! We have quite a road ahead, but just in the next week or so we have appointments with the pediatrician, neurologist, audiologist, optometrist, etc., etc., so please pray for everything to work out with scheduling, babysitting, the other kids getting adjusted to Lily being at home, and so forth.

Thank you all again for all of your prayers and support!

Guess Who's Coming Home Tomorrow?!

This girl:

Thank you all for your prayers! Please keep praying. Lily has a long road ahead of her and we really have no idea what to expect. Thank you again for your prayers!

Thursday, December 12, 2013

Almost Home!

Lily has been doing extraordinary in her bottle feeding for the last 40 hours! So far she has drank thirteen complete feedings from the bottle in a row, with the last three feedings being 75ccs, 75ccs, and 70ccs, respectively--her normal feeding is only 59ccs. If she completes the next three feedings, which are at 12am, 3am, and 6am, she can begin the process of coming home. Hopefully, she will be discharged this weekend if all goes well.

Starting last week, Laura and I have been praying a novena to Our Lady of La Leche and she has really been coming through for us. Before we started, Lily would only drink about 8ccs and there was one nurse, who happens to be her primary nurse, who wasn't very encouraging when it came to feeding her by the bottle. She would always explain that Lily did about 5ccs or so and once the milk hit the back of her throat, she acted as if she didn't want it and so the nurse quit and fed her through the tube. But, since we began the novena, the primary nurse hasn't worked (at least not with Lily) and Lily has had wonderful nurses instead. One day, our favorite nurse, who does a fantastic job with Lily, wasn't supposed to work, but was called in to take a shift--which happened to be with Lily. When Lily comes home, Laura and I are seriously considering making a pilgrimage to St. Augustine to visit the Shrine of Our Lady of La Leche.

Please keep praying!

Our Lady of La Leche, pray for us!

Eight And Counting!

Lily has completed eight full bottles in a row! The nurse just told me that if she does eight more in a row she can come home!

Please, please pray that she can do this so we can have her home!

Our Lady of La Leche, pray for us!

Wednesday, December 11, 2013

Hungry Baby!

So far today, Lily has completed three full feedings in a row (9am, 12pm, 3pm)! Please pray that she keeps it up for the 6pm feeding and the ones afterwards.

For the second feeding (12pm), I fed her myself. Here is proof:

One proud Daddy!
Our Lady of La Leche, pray for us!

Update: Lily completed her 6pm and 9pm feedings as well. That is five in a row so far! Keep praying!

Monday, December 9, 2013

Good News, Bad News

The good news is that Lily drank two full feedings (59ccs) from the bottle today! The doctor is going to continue watching how she does and if she can get to the point where she is doing this continually throughout all her feedings by the end of the week, then she won't have to get a g-tube. Please continue to pray for this.

Our Lady of La Leche, pray for us!

The bad news is what the neurologist had to say about the results of the MRI. He explained that of the three major parts of the brain (the brain stem, cerebellum, and the cerebrum), Lily's brain stem and cerebellum are fine. As far as they can tell, there is no damage to these parts. He said that these are the parts the baby uses early in life, which is why we see her doing well now. The cerebrum, however, which controls thinking, feeling, and moving, is completely damaged. So, the prognosis is that Lily will have cerebral palsy as she grows and reaches the stage where the cerebrum takes over. This means that she could have no speech or intelligence or ability to eat on her own or no use of her limbs, or all of the above or some of the above. We won't know until we reach the stages in her life where these are supposed to happen.

Lily needs a miracle. Please continue to pray that if it is God's will, Lily will be granted complete healing of her brain.

We are so thankful for Lily's life. This is very difficult news, nonetheless. Your prayers for our strength in all of this would be very much appreciated.

I have been begging you these last two weeks for your prayers for my daughter and I thank you more than I could ever say for your prayers for her. I am begging you once again to please, please continue to pray, to storm heaven with your prayers for a miraculous healing. I personally, unprofitable servant that I am, don't deserve to have my prayers answered, but for Lily's sake I beg. If you know anyone who you consider particularly holy, please beg them to pray for Lily. The prayers of a righteous man availeth much (James 5:16)!

Sts. Lillian, Faustina, and Our Lady of Loretto, pray for us!

Sunday, December 8, 2013

But Wait, There's More!

Lily had a great day with bottle feeding today. This morning she drank 40ccs of milk. This afternoon, 32ccs. And her last feeding (around 9pm-ish) was a whopping 51ccs, only 8ccs shy of her full feeding!

Please pray that she continues to do so well with the bottle and consistently reaches her full feeding amount! All of your prayers are working amazingly and the results give us much hope.

During the afternoon feeding.
Our Lady of La Leche, pray for us!

Bonus video:

On Second Thought...

Lily just had 40ccs of milk from a bottle! We might not need to do the G-tube at all. Please keep praying, it is working!

Our Lady of La Leche, pray for us!

Saturday, December 7, 2013

Bottle Feeding And G-Tube

Today Lily was fed by the bottle three different times, drinking 7ccs the first time, 14 ccs the second, and 9 ccs the third. While these are nowhere near where she needs to be (around 57ccs of milk a feeding), it does show that she can do it. She needs to keep practicing. So please keep praying, especially through the intercession of Our Lady of La Leche, that Lily is able to drink the full amount from the bottle as quickly as possible.

In the meantime, we are considering the option of Lily getting a G-tube so that she can come home in about two weeks. With the G-tube in we can still encourage her to drink from the bottle or the breast with the hopes that she will transition over to that exclusively.

We really want her home as quick as possible and it seems that the G-tube is the best and quickest option for that to happen. That is, of course, unless she miraculously takes to the bottle over the course of tonight. Please pray!

P.s. Lily is two weeks old today!

Friday, December 6, 2013

Lily's New Residence

This morning, Lily was moved to the Progressive Care Nursery, which is basically the same as the Level 3 NICU, except with less machines and quieter. Plus, Lily is now in a crib, instead of a big machine type kind of bed (<--that is the literal translation from the German---if you know German, you'll get the joke. If not, just roll with it).

The nurse is very doubtful that Lily will be able to drink from a bottle or breastfeed. We think she just needs more practice (and not having a tube going down your nose and throat into your stomach might help as well). Please keep praying and seeking intercession from Our Lady of La Leche that Lily learns how to bottle/breast feed very quickly!

Finally, we are meeting with the neurologist, along with the doctor, on Monday evening to discuss Lily's MRI results and what to expect going forward. Keep praying that she surprises them with her development. Thank you.

Thursday, December 5, 2013

Our Lady of La Leche

The nurse told us today that the only thing that is standing in the way of Lily coming home is for her to be able to drink from a bottle. Breastfeeding would be ideal, but drinking from a bottle is the minimum requirement. If she is not able to do this, then after a while she would come home with the feeding tube that is currently going through her nose and down into her stomach and they would teach us how to feed her that way. Obviously, this is not the ideal method and we wish to avoid this. Another option is that they would surgically place inside of her a tube that goes directly into her stomach and she would be fed that way. Also not ideal!

So, even though prayers for the damage to her brain to be healed are still very much needed, at the present time, prayers directed towards Lily quickly receiving the capability of bottle/breast feeding would be very much appreciated. For this purpose, I would ask you to implore the intercession of Our Lady of La Leche.

Please pray fervently for this purpose! The quicker Lily is home, the easier it will be for us, physically and emotionally.

Our Lady of La Leche, ora pro nobis!

Please Continue To Pray

We have not yet talked to the neurologist about Lily's MRI results (which we will do on Monday evening), but I did talk to the doctor today and he told me that based on his conversation with the neurologist he is concerned. He said that the MRI shows a global insult to Lily's brain. What that exactly means, I'm not sure. Hopefully we will have more answers on Monday.

Please keep praying for a miraculous healing of Lily's brain!

Wednesday, December 4, 2013

Emotional Rollercoaster

With every bad news, good is not far behind.

Today Lily's bubble CPAP came off and she is now breathing entirely from the oxygen in the room! She is continuing to gain weight and is now at 6lbs. 14oz. (up 8oz. since birth). They attempted to feed her from a bottle last night, which they said went well, but she needs to get better at sucking for her to continue to be bottle fed.

The most exciting news we got this morning was that Lily has been downgraded from Level 3 to Level 2, which means that if she continues to improve then she will be out of the NICU and into the progressive care ward and one step closer to coming home!

Please pray that she comes home very soon and also continue to pray for her full recovery, especially the damage to her brain! Thank you!

Tuesday, December 3, 2013

The Second MRI

The results of the second MRI were the same as the last, except this time they spotted what might be/have been (?) a hemorrhage in the right frontal lobe of Lily's brain. As for her prognosis, we don't really know yet and won't know until the neurologist looks at the MRI results.

Besides the prognosis of the neurologist, we really won't know how Lily is doing until she reaches certain "milestones" in her development (eating on her own, sitting up, crawling, etc.). If she doesn't reach these at the normal times, then it will tell us that there are problems.

This is incredibly hard for both Laura and myself. We have never gone through something like this before. For Laura, it is especially hard because when we are home and she has to sit still and recover from her c-section, she has to do so without the baby that should be there. Also, being so far from the hospital and driving back and forth each day while trying not to neglect our other children is wearing us out. Please continue to pray for us and for Lily. Please don't get tired of praying for her recovery, even if it is just a simple "Hail Mary" or "Our Father" each day for her.

We love our daughter so much and will continue to do so no matter what happens. Because we love her, however, we want what is best for her, and that is to fully recover. So please keep praying! Pray that God's glory will be manifested through Lily. Thank you.

Monday, December 2, 2013

The Last Tube

Today the last tube preventing us from holding Lily came out of her!

Here's the nurse preparing to take out the tube.
 It was so wonderful to finally be able to hold her and ponder her precious life. A week ago when she was born, I felt so helpless knowing that my little girl was so close to death (technically, she did die, twice) and there was absolutely nothing I could do to save her. This afternoon while snuggling her in my arms, I felt like I could protect her from anything. She has been through so much in her short little life, but she is definitely resilient. The progress she has made this past week has been nothing short of miraculous. Please keep praying for Lily, because your prayers are working!

A very happy Momma holding Lily!

A very happy Daddy holding Lily!
The doctor we talked to today was one who saw her the day after she was born. He was very pleased to see her progress and was cautiously optimistic about tomorrow's MRI. He also told us that the recent EEG was good and there were no more signs of seizures, although she continues to be on anti-seizure medicine (which she is now taking orally--since the last tube that came out was for that purpose).

They momentarily took off her oxygen tube allowing us to see her face unobstructed.
 Lily was very responsive today, also. She was looking around and seemed to recognize Laura and myself. She even smiled a couple of times and was very relaxed when we were holding her. Her breathing is also getting better.

Look at those numbers!
Tomorrow is the second MRI, which should give us a better view of where Lily is at neurologically. Please pray that the damage that appeared in the first MRI is healed!

As a bonus, here is Lily from Daddy's point-of-view while holding her!

Lily's Second MRI

I just got word that Lily's second MRI will be tomorrow. Please pray that it has positive results and that the damage to her brain is healed. Thank you!

Sunday, December 1, 2013

General Update

Lily (with her eyes open!) and Mommy

Not much news today. Lily is doing well. She is eating more and more and digesting it just fine. She is still getting used to breathing on her own and today was breathing a bit fast, but in time she will find her way with it.

There is still one more tube left to be taken out before we can hold her. We were hoping that it would come out today, but it hasn't. Perhaps it will happen tomorrow. We are very anxious to hold her, but we are trying our best to be patient and let Lily take her time.

We don't know yet when they will do the next MRI. I think it will be sometime this week. I will let everyone know as soon as I find out.

Please continue to pray for her complete recovery and continue to share this blog with others. Thank you and God bless!

Thank You!

I can't say it enough, thank you everyone for your support and prayers for Lily. To see that so many people care about my daughter is truly overwhelming! Nothing I say will adequately express the gratitude and love Laura and I have for each of you. 

I want to especially thank all who have shared this blog on their own blogs. Particularly I'd like to thank in this regard Calah Alexander, Jenny Uebbing, and Tom Perna. Thank you also to all those who have shared this blog on twitter, facebook, and everywhere else.

I'd also like to specifically thank Samantha McCormick, our midwife at the Baby Love Birth Center, who, although we didn't end up having a baby at the birth center, provided invaluable support on the day of Lily's birth. Also, Dr. George Kovacevic, who saved Lily's life in the operating room after performing the emergency c-section. 

Thank you to Dr. Kultar Singh, the neonatologist who also saved Lily's life by keeping her alive after her birth. Thank you also to all the doctors and nurses who have helped Lily (and Laura) at both the Cape Coral Hospital and at the Golisano Children's Hospital at HealthPark Medical Center.

Thank all of you who donated to help cover expenses during this time. Thanks to all who are praying for my daughter! 

Thank you to my mother for helping out with our four other children during this time. We don't know what we would have done without your assistance. We love you!

Thank you to all of our friends and family for your support! Thank you, strangers, also for your kindness and support!

We wish we could thank everyone by name, but there are so many people to be thankful for. Thank you all and please continue to pray for Lily!

Saturday, November 30, 2013

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!

Friday, November 29, 2013

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

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.

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!

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. 

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! 

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!

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.