Keeping the Faith

Today Haleigh and I unfortunately learned that, and I quote the nurse, "even if everything in the universe goes perfectly well, Sophia will be in the hospital at least 8 more days for weaning the morphine alone." I could have punched through a brick wall... We were so shocked. We had the impression that the medical staff all felt Sophia would be released soon. It seems that hospitals operate differently, so while Johns Hopkins main campus was perhaps more aggressive in Sohpia's weaning, Bayview Hospital (also owned by Johns Hopkins) has a more established procedure. We learned that Bayview actually specializes in the Baltimore region's babies who are born addicted to drugs. It is rather painful to see Sophia be weaned by the same nurses who are caring for babies whose mothers were doing drugs during their pregnancy. Even so, we are aware that we did everything we could as far as prenatal care is concerned, and Sophia is only addicted to narcotics because they were necessary to sedate her for the ventilator's breathing support.

On a more positive note, the doctors removed the high flow nasal canula today and so far we have not had to replace it. Sophia's (she's beautiful, by the way) saturations have remained stable for the past 10 hours even with no breathing or oxygen support. Thank God for this. So the two big concerns are weening her off the morphine and also increasing her feeding intake. Both, it seems, will take a lot longer than we expected.

Our assigned social worker could not be more helpful. She reminds me of my mother (now referred to as Nana Dee) and has helped us out with a free parking pass and official letter to my chain of command. For that matter, we are very comfortable with with all of the doctors, some of whom we actually met at the critical NICU on the main campus.

I don't know how Ashlie and Brad did this. And even still they are helping Bradie fight illness and slow growth. Trey Sutton and his whole family... how? A hospital is not a home, and we can't wait to get Sophia to where she belongs.

Inconvenient but good news

Although we were hoping to bring Sophia home today, she has shown sufficient progress to make the doctors decide another transfer. We told them in the beginning about our discontent with Howard County General, so they didn't even mention that hospital as an option last night. Instead they asked us last night for our consent to transfer Sophia to Bayview hospital, a Johns Hopkins (JH) campus also in Baltimore. The NICU (neo-natal intensive care unit) at the main JH campus where she currenty lies is a class 4 NICU which means it provides care to infants in critical need. Since Sophia is in the clear regarding the pneumoparacardium and jet ventilator, all doctors agree that she can be transferred.

Haleigh and I were caught off guard when a Dr. confronted us last night with a request to sign the consent form for transfer. I never like making a hasty decision, so we took advantage of our rights, as it were, and decided to sleep on it. Now we're comfortable with signing the consent form and we're on our way to the hospital soon to do just that. Obviously we hate having to change our comfort zone again and go through meeting an entirely new medical staff (again), but in the grand scheme of things, we consider this good news since Sophia no longer requires critical care.


My brother and sister-in-law, Ben and Kacey, are heading out today. They've been a tremendous help for the past few days and we love them very much. Incoming today is Haleigh's step-dad, Jay, and he and Melissa will stay with us until June 6th.


Now let's get this little girl home!!

Slow Progress, But Progress Nonetheless

Hey everyone. Thanks for keeping us in your prayers and staying in touch. Sophia wants to come home but we're still waiting on her lungs to function independently, among other things. She's off the ventilator but remains on the high flow nasal canula with 30% oxygen. The doctors have switched the fentynol (sedetive drug) to morphine in order to transition her dependency on drugs a bit more smoothly. The only need for the morphine is to ween Sophia from the high doses of sedatives so as to prevent strong withdrawals. It's sad, but yes, our daughter is addicted to narcotics.

In the pictures below you'll see Sophia's PICC (peripherally inserted centralized catheter) in the side of her head. The catheter replaces the peripheral IV inserted in the hand or foot and it runs from her scalp, down through her neck and to the right atrium of her heart. The tube sends nutritional fluids through her vein until Sophia is 100% on breast milk. Currently, the doctors are giving about half of Sophia's nutrition through breast milk, but even half of that is given by a feeding tube because Sophia is being stubborn with the bottle.

It has been nice being able to hold and feed our little girl lately. Granted, she's got a thousand tubes connected to her, but after 8 days of never hold our daughter, we'll take what we can get. On one hand these day-long visits to the hospital make it seem that we'll never bring Sophia home, but on the other hand we're definitely seeing progress. Just pick up the pace, Sophia!! God bless.

Very Good News

Quick and good update: We were present for the 'rounds' that the doctors make throughout the morning, where 10 doctors collectively assess each infant in the NICU and determine the proper plan for the day. We learned that the attendee doctor thought Sophia was ready to come off the conventional ventilator! Although it's possible that she may have to return to it, the doctors all agreed that Sohpia's lungs and blood gases all reflected her readiness to breathe without a ventilator. They hope to extubate her today and put in its place an air nasal canula. How happy this made us! (including Sophia...)

The doctors shed much more light on her case, including that optimistically Sophia has at least another week to spend in the hospital. The general rule of thumb, as we learned today, is for doctors to monitor an infant for stability in every aspect for a period of 5 days before they release the baby to go home. We're trying to wean her off the fentynol more aggressively, so she's on 1.7 micrograms per hour right now, as opposed to 2 (just nod your head and smile like I do when the doctors try to explain all this... :)

So please pray that she shows more signs of improvement and stability once she is extubated. We can't wait to bring her home!

Sophia, hurry home!!!

Here's a little video of Sophia blinking her eyes for us. She's sedated on fentynol, so she may look a little drowsy...

Here is Haleigh leaving the hospital (Howard County). She had to stay home the next day, but on the 16th she was able to accompany me to visit Sophia at Johns Hopkins.


Being treated with the ole' Billy Light (for Jaundice). The docs stopped the treatment after only 24 hours, however they say it's likely to have to treat it again later.

Kissing her precious little knee.

Melissa (Haleigh's mom who now goes by Grammy) arrived on the 16th and has taken on the grandmother role like a champ. :) What a big help around the house!!

Three generations...

Haleigh got to change her diaper earlier today! I checked Sophia's temperature.

Okay, now that the pics are over, all the interested parties can continue learning the details by reading the following. First, I'd like to say that my heart goes out to Ashlie and Brad Cook who spent 4 months visiting the NICU at Baylor Medical because their (now 1.5 year old) Bradie was born premature at 26 weeks. I can't imagine going through this for that long, so for that, Ashlie and Brad have become my heroes. God bless you guys.

It seems that God and the doctors and the ventilator have all made the pneumoparachardiom (air around the heart) go away. This was the reason Sophia was tranferred by ambulance to Johns Hopkins (JH) in the beginning, so what a relief to have that behind us. The pneumonia is still being treated by antibiotics and we believe it will take another 7 days for effectiveness. As for the darn ventilator, we're hoping that her blood gases improve so that we can switch from the jet ventilator to the conventional ventilator, and then to no ventilator. Sophia's being stubborn for now though, and her oxygen assistance level is ranging between 40 and 60 per cent lately. The persistent pulmonary hypertension (PPHN) is no longer a concern to the doctors, so I guess that means her lungs have developed properly. (Haleigh, remind me to ask Dr. Hughes how the PPHN can go away but the PIP/PEEP not decrease from the current settings)

We recorded some classical music (some of which was given to us by Meme and Papaw for the baby shower) onto a tape recorder and placed it in Sophia's bed. On the other side of the tape, we recorded ourselves reading kids books. I hope this keeps her company through the night!

Thank you all for your prayers. We appreciate it more than you know.

Mommy's first visit; transfer to Johns Hopkins

Thank you all for coming together last night and lifting Sophia up in prayer! Quick update: the air around her heart has begun to go away as shown in several X-rays. The docs are hoping the pneumoparacardium solves itself without having to operate. Nothing much has changed except that she's developed jaundice and the docs increased her oxygen over night to 100%. She will be treated for at least 10 days for pneumonia, and then we'll take it day by day.

Sophia truly completes the lives of Haleigh and me, in a way we could never describe. When the transport nurse practioner explained to us she would have to operate on Sophia during transit if her heart got worse, she used the words, "because at that point it's the only thing that will save her life." We could barely manage our emotional distress when presented with the gravity of that scenario, and of course the crying was immensely painful on Haleigh's abdomen. So please understand the reason I requested that no one contact Haleigh. She is feeling better now though.

The following pics are from Haleigh's first visit with Sophia, 2 days after the c-section. It was a heart-warming moment, and the icing on the cake was that Sophia started moving immediately after hearing Mommy's voice. :)

Look at that head of hair!

Then, the sad part. The Neonatalogist at Howard County General discovered pneumoparacardium (the wall of air around Sophia's heart) and ordered a transfer to Johns Hopkins in Baltimore. This pic is just before the team began prepping her for transport (by ambulance).

The nurse practitioner on the team was very nice and reminded me of my Aunt Kathy. The team didn't allow me to follow, but I made it clear to them that while Sophia was just another baby to them, she was my daughter, and they were transporting the future first female president of the United States.

Upon arrival to Johns Hopkins, the new doctor replaced the ventilator with one more gentle. They took X-rays and already saw a decrease in the air built up around the heart. Thanks be to God!

Here she is at the new NICU. I showed up about an hour after they admitted her. She fussed a little so I had the doctor tear down the hideous wallpaper and make the lighting softer on the walls. I could tell that's what her problem was...

In conclusion, Haleigh's OB saw her this morning and after learning about Sophia's transfer offered to discharge Haleigh early. Since it is the third-and-a-half day after the c-section, the Dr. thought it was no problem to release her. We will be leaving Howard County within the hours and take Haleigh home. Our house is closer to Baltimore so as I continue commuting between the two loves of my life, it will be easier on all of us. Melissa, Haleigh's mom who chose "Grammy" as her grandparent title, will be here tomorrow to help us at the house. This will be extremely helpful!

Thanks again everyone. Please continue to pray for our little girl. And for that matter remember Ashlie and Brad Cook's little one, Bradie, who has spent way too much of her precious life inside a hospital. Also, of course most of you know Trey Sutton and his family, and we continue to pray for God to heal him as well.

Peace be with you all!

Transfer to Johns Hopkins

This is Tim. The Neonatalogist here at Howard County General in Columbia, MD discovered this afternoon some air around Sophia's heart. The medical term for this wall of air is pneumopericardium (sp?). An increase in the amount of air around (our precious angel's) heart would be bad, and would call for an interventional cardiologist to inject a needle into the air wall and extract the air which is not supposed to be there.

The best hospital to monitor Sophia's heart (and lungs and blood for that matter) is Johns Hopkins in Baltimore, about 20-40 minutes away from Howard County, depending on traffic. The Hopkins Transport Team just came and picked Sophia up in an ambulance to transfer her to Baltimore. The interventional cardiologist at the Neonatal Intensive Care Unit there will be able to perform the necessary operation in the event that this wall of air does not dissipate naturally.

Please pray for our little angel. Only I will be able to see Sophia for now since Haleigh does not get discharged from Howard County until Sunday. I am about to make the drive now to ensure my baby gets settled and that she likes the wallpaper in her new hospital. (She's already so particular about interior decorating!) Now, keep in mind that Johns Hopkins is the best of the best. If any medical institute can take care of our girl, it's Johns Hopkins in Baltimore.

Please call me, NOT Haleigh, until further updates. Any emotional stress for Haleigh needs to be avoided as she recovers from her c-section. You all are the best. Love, Tim.

6 pounds 1 ounce - 1:39 AM on May 12th, 2010 :)

Dearest family and friends,

This is Tim writing. Forgive us for taking so long time to update information here, but I only had time (and barely at that) to post pics the other day. Here is the situation:

On Monday the 10th, Haleigh had strong contractions that were 1 to 3 minutes. We rushed to the hospital only to be discharged 4 hours later with the infamous 'false alarm' diagnosis. Haleigh wouldn't dilate because the contractions weren't strong enough. Fast forward 18 hours and 4 hot baths later, the contractions still had not subsided but grew more intense instead (keep in mind Haleigh's only 36 weeks and 5 days).

We rushed back to the hospital and learned that Sophia's heart rate was very high, the contractions very strong and frequent, and Haleigh had a mild fever. She still would not dilate after all these hours of strong contractions. Dr. Rojas first concluded that these unproductive contractions, together with Sophia's heart rate and Haleigh's fever, were a result of a uterine infection (Choreo-Ammionytus). Dr. Rojas became very concerned for the mommy and daughter's health. Upon this conclusion, the wrist bands were slapped on us and we knew then we wouldn't be going home without a baby.

Dr. Rojas's original plan was to treat Haleigh with an antibiotic and bring down Sophia's heart rate. In the meantime we would wait until the strong contractions finally caused dilation. He agreed to grant Haleigh her number-1 wish then and there- an epidural. :) Unfortunately, when the good Dr. checked her again several hours later, she was still not dilated. Dr. Rojas was perplexed. After staring silently (for what seemed like an eternity) at Sophia's heart rate and Haleigh's contractions and examining Haleigh's pelvic bones, he believed that Haleigh's pelvis was too small to deliver a baby even as small as six pounds. Instead of delaying the inevitable and also to rescue Sophia from a stressed environmment (her heart rate had come down but was beginning to increase again), he decided to conduct a c-section immediately.

Haleigh then gave birth at 1:39 AM on Wednesday the 12th. Now we are waiting for Haleigh to finally see her very own baby, Sophia Hayden Rice. In the hussle and bustle of transferring Haleigh from the OR to the recovery room to the materninty ward room, only I was able to go to the Neonatal Intensive Care Unit. Haleigh has been a fighter and hero through all of this. Hey pain and discomfort are often high but her spirits remain high always. On a personal note, my mind was going 90-miles-an-hour through all of this. Seeing my beautiful, amazing and precious life-partner being cut open with 6 medical staff surrounding her was almost unbearable as I felt as helpless as ever in my life. Additionally, I could barely manage after realizing that our new baby Sophia was experiencing breathing problems. When the Neonatalogist found me and asked me for consent to perform a spinal tap on our baby, I almost collapsed. I was not prepared for this.)

Sophia's complications can be summarized with the diagnosis of pneumonia and persistent pulmonary hypertension (PPHN). For the pneumonia the doctor has her on antibiotics for at least ten days, and for the PPHN Sohpia is intebrated with a ventilator going down her throat into her stomach. Apparently her lungs did not develop enough to know that they were supposed to be receiving blood and passing it along (since the placenta does this for the fetus). The result then is respiratory stress syndrome. Dr. Blackman (what a cool name!) administered a protein chemical called sefactint (sp?) to which Sophia's lungs responded positively, but the Dr. still assumes there is pneumonia given her X-rays.

Needless to say, this is a happy but hard time for us. While we understand the conditions could be much worse, the babies I see in the regular nursery when I pass them on the way to the NICU remind me that conditions could be much better as well. Even so, we are nothing but thankful for the beautiful blessing we now have the privilege to call our daughter. We are ready to welcome her into our home, coddle and spoil her, and ask Sophia what she thinks about her nursery.

I want to thank all of you for your prayers, love and support. While we may be far from all of you, we know we're not alone.

Dear God, we ask you to bless our little Sophia and restore her to full health in mind and body. In the name of the Father and the Son and the Holy Spirit, Amen.

So as not to end on a negative note, Haleigh and I believe Sophia has Haleigh's nose, eyes and ears and she carries the characteristics of my chin and ...bottom lip? (hal's words, not mine) We'll keep you updated!

9 Months Pregnant/Tim's Promotion Ceremony

I'm officially 9 months pregnant. I had a Dr. Appt. Wednesday and it went great. The Dr. said Sophia definitely will not be a big baby..maybe 7 lbs. I will be induced in about 3 weeks. She can't induce me until I reach 39 weeks, which is May 27th, so we are shooting for that day. Sophia has dropped already, so life is pretty uncomfortable. At this point, I wouldn't mind going into labor on my own; before 39 weeks. I'm definitely ready!

In other important news, Tim was promoted to E6-Staff Seargent on May 1st. I was able to be a part of the promotion ceremony and actually pin the new E6 rank on his uniform. It was very special for us. Congratulations honey!

p.s. I had to throw in a picture of our first born, Molly

Tim's Promotion/Award Ceremony
Tim's Commander presenting him with an Army Achievement Medal for his high scores (3,3) on his Arabic Proficiency Test

Taking off his E5 rank and pinning on E6

Tim giving a nice little speech at the end

36 weeks and counting down...Come on Sophia!