First complete family photo

The nurse took this photo this afternoon in Camilla's first day in the Special Care nursery. As you can see, we have a lot more freedom of movement and ability to be close to Camilla. Eva really enjoyed it too. She was excited to see Camilla so close up and to be able to touch her for the first time--kissing her and trying to hug her. She was just frustrated that she couldn't hug Camilla quite as tightly as she would have liked to. :)

(If you click on the photo it enlarges, and it gives a great view of Camilla's face)

Graduation

Today was a very big day for Camilla. She made two big moves: out of her isolette and into an open crib, and out of the NICU into the Special Care nursery. Moving out of the isolette means that she's doing well at maintaining her own body temperature--a major step towards being ready to come home. The Special Care nursery is for babies who still need to be in the hospital, but who need much less than what the NICU can offer. This means that she's stable and well, that they don't anticipate other major problems for her, but that she just needs to be there to eat and grow.

Way to go Camilla!

Teeth

One of the little things we love about Camilla--she was born with two teeth! Actually, they were both still under her gums when she was born,and just broke through a couple of days ago. The doctors tell us that they are called natal teeth and that they'll probably fall out on their own. They're very loose now, so we made sure to get a picture to remember them by before they fall out.

Pretty in pink

Some sweet moments from the last few days...

Bye-bye cannula

Our apologies for the long delay in updating! The good news is that there is only good news to report. Our last entry was the day after Camilla's surgery to close her duct, and she had just been taken off the ventilator. Since then, she has gotten better by leaps and bounds, so much so that by the end of the week it was hard to remember that she had even had surgery a few days before. So Monday was the surgery, Tuesday she came off the ventilator, and by Thursday, she was off the cannula and breathing totally on her own! You can see in the picture below (taken just after they removed the cannula) that there are still the little stickers on the sides of her face to hold the cannula in place, just in case she had to be put back on it. By Friday the stickers were gone and the machinery for it was gone from her bedside too, and she hasn't looked back. She's been breathing strong and steady since then.

Ever since then, all we hear from the doctors and nurses is, "Wow! Doesn't she look great?!" She was even voted Star of the NICU last week for her speedy and smooth recovery. She continues to do well, and is leaving more and more things behind. As of today, she is receiving a full serving of milk at each tube feeding, so that tomorrow her IV will be taken out, and she'll just be getting milk for nutrition. This is a great step ahead in many ways, including eliminating the risk of infection (that was how she got sick before).

Removing the IV also means that her digestive system is working well and that she's gaining weight successfully--her body is able to handle eating well enough to rely on it as her only source of nutrition. She's gaining between 1/2 oz - 1 oz per day, so that she's up to a whopping 3 lb. 11 oz as of last night.

We're so proud of Camilla--she's a strong and feisty girl!

Interlude for Eva

Especially for those of you who have been following since Eva's earliest days, here's a bit of what life looks like with her these days.

Extubation!

This is Camilla as we left her this afternoon, resting peacefully after her big day. We have only great news to report, thank God! Camilla has progressed rapidly and well in her recovery from surgery. She had her last major dose of pain medication early this morning, and her chest tube (something the doctors left in after the surgery to provide a drain for excess air and fluid) was also removed this morning, making her much more comfortable. Her breathing was better and better throughout the day, culminating in them taking her off the ventilator this afternoon. She was showing stronger and stronger signs that she was ready to be breathing on her own again, and then she passed the test (being extubated) with flying colors. She is back on her nasal cannula, just where she was before the surgery. They have also started giving her small amounts of milk again, another important step and sign that she is doing well. Now that some of the biggest challenges of surgery are behind her, Camilla can get back to her major work of eating and sleeping and growing.

As it turns out, Camilla getting sick was probably a blessing in disguise. When she first started acting a little strange, the doctors began investigating all of the possible causes. They looked at her open duct again, something they hadn't been planning on doing for the time being since Camilla was doing so well, in particular with her breathing, and wasn't exhibiting signs of complications from the duct being open. However when she got sick they did both x-rays and another echocardiogram to look at her heart. This led to discussion with the surgeon and eventually to the decision to perform the surgery. The surgeon was very strong in his opinion that this was necessary for Camilla--that sooner rather than later she would have begun to suffer complications, possibly including damage to her other internal organs due to inadequate blood supply.

As painful as it was for her to go through the surgery and for us to see it, she really needed it done. She needed this help to be able to concentrate all of her energy on growing, and not having to work so hard to compensate for something that wasn't doing what it should be. Today we're grateful for the unexpected things God allows...

So far so all is well..

Camilla has done well today. Presently she is peacefully sleeping with painkillers being administered throughout the day. Her surgery was performed early this morning to close her PDA (Patent ductus arteriosus). The size of which was quite large, as everyone kept mentioning. One doctor said it was the size of her Aorta, which is a testament to how strong Camilla actually is to have been doing so well thus far. This morning we showed up around 6:15 at the hospital to see her before she was intubated and speak with the doctors. Doc Weiner was on hand to oversee things and do the intubation. He showed us her x-rays as well, that showed her left ventricle was in fact enlarged from before due to all the extra pumping of blood it had been doing. Her lungs were also congested, abdomen slightly distended and a concern for her kidneys and intestines should we wait longer to have the surgery. Dr. Walters (who hails from Houston and went to school at Baylor), performed the surgery leaving us very confident with his capabilities and the necessity for surgery.

We just came from the NICU and left her looking very peaceful and well attended to. She was responsive to our touching of her toes, and vital signs slightly improved as we sang to her. Tomorrow we should have a better idea of where she stands when she begins to wake up. She has a difficult little journey for a couple of days, though should thrive post recovery.

Thank you everyone for supporting us through prayer and keeping up with us. Fr. Ed Friede even showed up and anointed her the night prior. We know many people locally, nationally, and as far as Rome and Medjugorje are offering prayer and support for her. It's really humbling how good the support has been, particularly our families.

Good night

Christi Bill and Shrubby

Camilla's surgery

Buon Domenica,

Camilla is scheduled to receive what is called a ligation tomorrow morning at 7 am. It is surgery to close her PDA which is a duct outside of her heart. In utero is diverts blood around the lungs as they are not in use yet. If it is open, it circulates blood back into the heart after it is pumped requiring the heart to do more work. We all have it when we are born, and it closes usually within hours after birth on it's own. Little ones born as early as Camilla aren't always capable of this, so medication is administered. If this does not work, as in Camilla's case, surgery is performed at some point to amend this. Camilla's is now.

Prayers are what we are asking for. Though this surgery is routine, it is still surgery on the heart of a 3 lb. little girl, who is just getting over a staff infection.

God bless,

Bill

Getting through a scare

First things first: Camilla is doing much better, but she gave us a scare this week. When we arrived on Wednesday at noon, Camilla couldn't have been doing better. She was alert and chipper and the doctors were complimenting her on how well she was doing. However through the course of the afternoon she started to show signs of distress, subtle at first, but then getting worse and worse. The doctors ordered a battery of tests including x-rays of her chest and abdomen, bloodwork to check for infection of various kinds, and even a spinal tap to rule out meningitis. By the time the nurses were doing these various tests, Camilla was so sick that she didn't protest in the least--didn't cry, didn't even squirm when they were drawing the blood. That was probably the scariest moment for me--seeing how sick and unresponsive she had become in such a short period of time, and that she kept going down. I'm grateful that I was there throughout this whole time, and that Bill was able to get to the hospital very quickly from work so that we were together with her for all of the procedures.

Thankfully, the nurses and doctors were so attentive to those first small changes in Camilla's behavior that they were working as fast as was humanly possible to find out what was really going on and to treat it. I have only the highest praise and respect for all of the nurses and doctors in the NICU and the way they took care of Camilla (and of me and Bill) with speed as well as with great compassion.

Once the tests were done they started her immediately on antibiotics, and after that Camilla started to show signs of improvement. We found out very quickly that it was almost certainly NOT meningitis, and then her blood culture came back positive, probably a staph infection. This is the most common infection in the NICU--it's a bacteria that lives on our skin, and she was susceptible to getting the infection because she has an IV in her arm, giving the bacteria a way to get inside. The antibiotics are very effective in treating this kind of infection, so she's already on her way. Through the rest of Wednesday night and the day Thursday she gradually improved, showing more signs of her usual spunk and movement and alertness. She's looking more and more like herself, and hopefully she'll be all the way back by the time we go in to see her today.

One other result of trying to figure out what was making her so sick was increased attention to the duct just outside of her heart which is still open. Camilla had another echocardiogram yesterday, and her doctors are consulting with a surgeon and a cardiologist today to discuss the possibility of surgically closing the duct. It looks very likely that she'll need to have that done, probably next week after she's through the worst of the infection. This is something we were really hoping to avoid. As far as surgeries go, it's very routine and babies tend to recover from it very well, but it is still surgery--including the need for intubation and general anesthesia. It would also mean another temporary setback for Camilla's progress, though a permanent step forward. Please do keep praying for her: for full strength and health after this infection, for the duct to close, but if it doesn't, that she would come through the surgery well.

Camilla's first clothes

Camilla and the snoedel

The green object in with Camilla which looks a little bit like a ghost is what is known in the NICU as a snoedel (pronounced snoodle). It's from the Dutch word meaning "snuggle", and is basically Camilla's first blankie. A local 4-H group makes these and gives one to each parent of a preemie, telling us to put it right against our skin and wear it for a time. Inside the fabric is a piece of pure lambswool which is very absorbent. The snoedel absorbs the scent of the parent, and then is put into the isolette with the baby. The babies can all already identify their parents by their scent, so the snoedel is meant to be a comfort, something to bring a reminder of our presence even when we can't be there with her. We put this one in with her today, and as soon as we did, Camilla opened her eyes wide and started to squirm around, seeming to recognize the scent. Something to melt a mamma's heart...

Today's update

Great news! As of early Sunday morning, Camilla weighs 3 pounds!!! That's 2 oz. more than her birthweight, so that's a big achievement for her. In addition, as you may notice from the photos, we can see what she looks like much more clearly now. That's because on Friday, the doctors and nurses decided Camilla was ready for a challenge and so took her totally off the CPAP (the bigger mask which covered most of her face, but which also did more of the work of breathing for her), and put her full-time on the nasal cannula. That's also a great step ahead for her.

How big she really is

Babbo's girls

Sisters

Guess who can't wait for Camilla to come home? Look out, little sister!

Sweet baby face

These are both from today, showing where Camilla is now, and (finally!) a bit more of what her face looks like. She's been so covered by the CPAP mask most of the time since her birth that these glimpses have been rare. The great news, however, is that they are becoming more frequent, because she is spending more time every day off of the CPAP and only with the assistance of a nasal cannula, the thin tube just below her nose.

So much has happened since we last posted! Camilla has been holding her own since birth, but has started to make some real progress ahead in the past few days. Overall, she's doing really well. Here's Camillas current progress report in more detail:

She's gaining weight: she lost several ounces initially, but had returned to within 5 grams of her birth weight by one week old.

She's still breathing on her own, and needing less and less assistance: she never needed to be intubated, but had been on the CPAP since birth. Within the last few days, she has gone from trying out the cannula for one hour a day to now wearing it for 18 hours a day!

Which leads me to one of the most important factors in her progress report: her heart. The duct outside of her heart is still open. Two rounds of medication failed to close it, and in fact it remained fairly large. At the beginning of this week, the possibility of surgery to close that duct was being discussed--a scary thought for us, since it would mean that Camilla would have to go under general anesthesia, as well as having another medication to paralyze her during the surgery so that they could perform with precision the ligation on this tiny duct.

However, the doctors wanted to wait a few days to see how she was breathing--the major indicator of whether this open duct was causing her problems or not (if the duct remains open, blood that has already been to the lungs cycles through the heart and then is pumped back to the lungs, rather than out to the rest of the body, thus causing more work for the heart and the potential for more fluid to collect in her lungs). Thankfully, her breathing couldn't be better! The doctors decided that they aren't even going to do another echocardiogram to see what the duct looks like because she is doing so well with her breathing, and in fact is needing less and less assistance. They'll just keep seeing how she does and then check the duct later--there's still the possibility that it could close on its own. Thanks to all of you who have been praying for this particularly.

Eating: Camilla is now in her 4th day of receiving milk through a feeding tube. Since they shouldn't be digesting anything for several months yet, preemies digestive systems get off to a very slow start. She's still receiving pretty much all of her nutrition through an IV, but she's also now receiving about 1/2 teaspoon of milk every 3 hours and is now digesting it well. After a few more days, they'll start to slowly increase the amount of milk she's getting, and that's when she can really start to gain weight.

Stay tuned--we'll keep you updated here, though it may take us a while to catch up.

Marsupial Therapy / Kangaroo Care

We were able to start holding Camilla just a few days after she was born. We can hold her even when she has the CPAP mask on, even with all of her wires and tubes and IV lines. Getting to hold her like this is the best thing that we get to do every day. She is so calm when we hold her--she sleeps most of the time and her breathing and heart rate are solid and steady. I've read that the temperature of mothers' bodies even automatically adjust to make sure that the baby stays at just the right temperature.

Bill's first diaper change

The first of many...

Under the bili light

This is what we saw when we arrived at the hospital a few days ago. Camilla was jaundiced, so she needed to spend some time under a special phototherapy light to help her body process a chemical called bilirubin. Preemies' livers have a hard time dealing with bilirubin, so the sight of babies under this blue light is a common one in the NICU.

Camilla's baptism

Our long-time family friend, Deacon Dan Foley, came to the hospital last Friday afternoon, May 29, to baptize Camilla. Though she has been doing so well since birth, she does have a long way to go before she's out of the woods, so we wanted to do everything for her that we could. I can only imagine that she has the honor of being one of the world's smallest baptized Christians. It's hard to envision many others smaller than her!

It was a brief but beautiful ceremony. The nurses gave Deacon Dan a tiny pink plastic vial of sterile water, which he sprinkled over Camilla's head while saying the words of baptism. You can see the drops in the pictures below: they stayed beaded up on her head for some time.

Camilla Magdalena Mangan

Welcome Camilla!

Camilla surprised us with her arrival at 2:06 a.m., Tuesday, May 26. As we type this, she is well. She joins us as a sheer colossus in comparison to Eva at a staggering 2 lbs 14 oz. Wow! Though she is also about 5 days older in comparison to when Eva was born..

Camilla's arrival was being watched for considering Eva, and found Christi on modified bedrest for the previous month as a preventative measure. This may have prevented her from giving birth sooner, though we're speculating at best. She arrived with speed. With Eva we were able to contain her for 48 hours allowing shots of betamethazone(a steroid that helps the lungs produce serfactant which is a lubricant that allows the lungs to open and close). Camilla received 1 shot and showed up about 5 hours later. She was placed on and continues to be assisted(though very little as of today) by a CPAP machine. CPAP is NOT intubation, and simply helps breathing by adding a little more pressure as needed as well as the saturation of her air. We breathe 21 % oxygen and she has been receiving anywhere form 21 - 35 % saturation.(This could be an incorrect description)

Upon seeing her I was amazed at her size in relation to Eva, as she is a full inch and 12 oz. larger. This is significant as she is strong and very much a fighter. (Christi knows this from her relentless kicking in the womb) She has some hurdles of course as anyone born at this time should, though she is progressing rapidly.

Thank you Dr. Fleming, Dr. Weiner, Dr. Kennedy, Dr. Judge and all the nurses and respiratory therapists(too many to remember all the names of at the moment) and everyone on staff at St. Joseph Mercy hospital who have eased our stay and provided remarkable care for Camilla. As well as to everyone else for continued support through prayers and all the intangibles and ways people have made this intense week easier and joyful.

Babbo