A sort of homecoming

It's not the homecoming we'd anticipated.

We had hoped that sometime in the next few weeks, we'd be bringing our baby girl home to live in our house and play with her big brothers.

We'd hoped for some pink things and baby dolls and maybe even a few frilly dresses.

After she had a hard time yesterday, the doctors decided to test Brigid for an infection and found that she was critically ill from a bacteria that she likely developed from being on the ventilator. Her blood cultures showed that she was septic - the infection had taken over her bloodstream - and her little body fought it as well as it could. The doctors, recognizing the severity of the situation, called Patrick and me and told us to come to the hospital right away. She was having such a hard time, but we got to be with her and kiss her and sing to her. The bacteria was vicious and fast-moving, and it only took about 12 hours from the time she started acting lethargic until her body could fight no longer. At about 11:30 last night, Brigid went to be with Jesus.

We thought our homecoming would be a wonderful ending to a long and difficult road, but it would just have been continuing the race that is life on this earth for our girl. Instead, she's already won the race and received the prize. Brigid's homecoming was the final homecoming - the one where she gets to live in the mansions and walk on streets of gold and worship at the throne of God and see him face to face.

We are so honored to have been your parents, sweet baby Brigid. I'd been under the impression that I was holding your hand to help you through this difficult time, but now I realize that you were actually helping me by holding mine. Thank you so much. You are the strongest person I know, and I can't wait to spend eternity with you and Fiona.

More breathing issues

I went in today to find Brigid having more breathing issues. Her oxygen saturations were low, despite being on a high oxygen concentration with the ventilator. I found out at rounds that she has a collapse (atelectasis) of the top part of her right lung, so we went from one airway issue to another.

She was very lethargic and a little pale, not her usual feisty self, but they ruled out any infection and feel this could just be secondary to her surgery. Chest PT, frequent suctioning, and turning her on her left side seems to be helping a little. She will get another chest x-ray later today to see if it has opened up some.

How many x-rays can a tiny baby get before she starts glowing, I wonder. I think she's averaged one per day so far. That's way more than I've had in my 37 years of life.

This road we're on is such a long one and we are getting weary. At least I am. It's been a long six weeks so far, and it's hard to think that we're still six weeks away from her due date. So we're only at the halfway point. I'm hopeful that seeing some growth and improvement is what will help get us through the last weeks.

Not so much

Our strong girl did a good job with breathing on her own for a little while today. After about an hour, though, it became evident that her floppy airway was not allowing her to vent off her carbon dioxide and she had to be reintubated. They will likely do another bronchoscopy to determine whether it's a floppiness that she will be able to outgrow soon, or if it's one that is too severe and will require a tracheostomy before she comes home.

I was excited, though, to finally see her whole face! The nurse was even kind enough to use clear tape for her NJ tube.

I can definitely see the resemblance to her brothers! She is just the most precious little girl.

Extubation

Brigid is back to having a bit of a hard time with her breathing. When she is awake and alert, they find that she works hard at fighting against the tube. She is a strong girl, but in this case, strong is a bad thing. She often displaces the tube, and it tends to cause her to have a vagal response or to have trouble oxygenating or venting off her CO2.

Again.

She has lost weight over the past few days, I think. They don't weigh her daily in the PICU and that's where she's been since her surgery, but today she looked skinnier to me. They mentioned that she may be using her calories in struggling with her breathing, either during the CPAP trials or if she's just not ventilating well. So now, after several different CPAP trials (some successful, some not), they think the best thing would be to try removing the tube altogether and seeing how she does without that being a factor.

This is very scary to me, but I'm curious about it as well. As much as the positive pressure (PEEP) from the tube has been helping to keep her malacia open, is the tube itself causing blockages? Has it now become more of a hindrance than a help? And if so, can they give her the PEEP she may need to overcome the floppiness in her airway through only the nasal cannula?

These questions and more will be answered tomorrow morning at around 11 a.m. Please say some prayers that it would go well and she'd be able to be off the ventilator completely.

Plus, I'm kind of excited to see her upper lip.

Improvement

I got to spend a little bit of time with a very awake and alert baby girl today,



and boy, did it feel good!

Brigid has been doing well since her surgery. Her breathing has improved so very much. She is so easy to ventilate, in fact, that they have started doing CPAP trials with her ventilator to give her practice breathing on her own.

To witness a tiny infant, who is not even supposed to be born for seven more weeks, triggering her own breaths for almost an hour is nothing short of miraculous. We are indeed fearfully and wonderfully made!

Success!

Thank you so much for keeping our baby girl in your prayers yesterday!

Her surgery took place in the morning and was a success. Her doctor came to speak with us in the pediatric waiting room as soon as it was done - before she even got back to her room - and told us just how it went, and how great she did.

We were able to go back and see her, which was a little upsetting as she was on her back with her arms spread out and held down to the bed. They needed to observe her and keep her from grabbing onto the drainage tube that has to stay in her side for a few days following the surgery. As a mommy, it was hard to see, knowing that she really just wanted to be curled up and swaddled.

I could tell right away, though, that the surgery had made a difference when a nurse came and repositioned her ventilator tube. Its placement had been so precarious prior to the surgery because of the constriction by the double arch. If she pulled her head back and the tube shifted, even just slightly above where the constriction was, it cut down her oxygen supply and her alarm would start beeping. After the surgery, though, the nurse completely bent the tube at a 90 degree angle to reposition it. I watched her do it and then instinctively whipped my head around to check her monitors, anticipating that her oxygen levels would plummet. They didn't budge. This was such a huge indicator of how successful the surgery was.

When we met with the doctor on Saturday afternoon, he gave us several things - diagrams of what a normal aortic arch looks like, illustrations of what Brigid's arch looks like and what the surgery will do, and some of her MRI pictures that show how much the arch is constricting her trachea. These were fascinating to look at. The images are cross-sections of her body, as if you were looking up through her feet.

In this one, the yellow arrow is pointing at what her trachea looks like above the point where the double arch was constricting it:
This one shows her trachea at the constriction point. Notice the huge difference in the size of the opening:

And finally, this is her trachea, open once more, just below the constriction point and as it branches into two to go down to her lungs:


It's so amazing to look at these and to see exactly what is going on, and how it has affected her physically. Usually, doctors don't insert the ventilator tubes as low as hers is, but if the tube was above this constriction, she didn't get enough oxygen and more importantly in her case, couldn't get rid of her carbon dioxide. Below this point is the carina, right between where the branching occurs, and if the tube touched that, it caused a vagal response that made her heart rate drop. There was probably less than a centimeter of wiggle room between the arch and the carina, and because she is so strong, she could easily move her head enough to cause the tube to displace and either touch her carina or to move back above the arch.

The fact that the tightrope walk that happened all day long finding just the right spot to prevent either of these things is no longer an issue is such a relief! Patrick called last night and I called this morning to check on her, and both times her nurse said she was doing great. She didn't have any incidents of bradycardia (dropping her heart rate), desaturation (dropping her oxygen levels) or increased CO2. It seems that the surgery has already made a significant difference and was a total answer to prayer!

The smoking gun

Yesterday Patrick and I met with the man who is going to do the surgery to repair Brigid's double aortic arch. He was one of the most kind, patient people I have ever spoken with, and he explained step by step how the surgery will be performed and what the expected outcome will be.

He believes that when it comes to Brigid's breathing troubles, this is the smoking gun, and he feels confident that it will significantly help her.

The prospect of heart surgery on our tiny girl is so very frightening, but after a weekend of more breathing difficulties and instability, the risks of delaying the surgery and impeding her airway for much longer are evident. We are anxious but hopeful.

I feel like we have been asking for so many prayers, but please pray that our baby girl does well during this surgery, which is scheduled for sometime tomorrow morning. We are hopeful that it will make a tremendous difference in her breathing and that she can finally just be able to grow and thrive, stable and comfortable, until she is big and healthy enough to come home with her family.

Ups and downs

I talked to several doctors yesterday. It's humbling to know that so many skilled and experienced doctors are considering Brigid's situation and weighing in on how best to treat her.

One doctor I spoke with was someone who'd talked to me after her MRI. He explained the surgery they'd need to perform to repair the double arch and said that "it's not a major surgery." Of course, when you're under four pounds, any surgery is major, but he meant that this is minimally invasive and one that they perform relatively frequently with minimal complications. I was feeling relieved by this when he went on to explain that because Brigid's trachea is so floppy, they may have to do a tracheal reconstructive surgery at the same time - a much more serious procedure.

This felt crushing. I asked him since the double arch surgery was the simpler of the two, could we not just do that one first and see if that helped her tracheomalacia before we did the other, more risky procedure. He didn't think that was a good option. Her attending physician had told me that a lot of different doctors were going to weigh in on the decision, considering the pros and cons and deciding on the best plan of action. I wasn't sure if they had already weighed in and this was their decision.

I was scared and cried on the drive home, praying that the doctors would reconsider.

Later in the afternoon, I got a phone call from her attending physician. She had talked to the doctor I spoke with, and also several other doctors that afternoon. I told her that I had some concerns about the surgery and asked if they could please consider just doing the double arch repair first to see if the malacia resolved. She said yes - that was what all of the other doctors had decided would be the best course of action (thank God!), and she put me on the phone with the cardiothoracic surgeon.

He was so kind and explained that despite her small size, he felt confident the procedure would not have any unexpected risks (of course, there are always risks), and that this is something that is often performed on infants. He said he would like to sit down with us and show us the MRI images, explaining exactly what they were going to do.

Then he said that in his opinion, this surgery would completely resolve Brigid's breathing issues. This was like music to my ears. He said that the malacia only exists in the exact spot that the vessels are in and he doesn't believe they are coincidental. I was so relieved.

We are meeting with him today to review the images and to discuss his findings and recommendations. As of today, Brigid is scheduled to have this surgery on Monday.

MRI update

Brigid had an MRI yesterday.

The doctors wanted to get a better look at what was going on with her trachea. It seems it's unusual for tracheomalacia to occur in just one small spot like hers does. Her attending physician ordered some echocardiograms (ultrasounds of her heart) to see if they could determine whether something was pressing on her trachea from the outside. She suspected maybe a vascular ring (a ring of blood vessels).

The echo gave them the idea that there was something there, but they could not tell exactly what. So yesterday they took her down to radiology to do an MRI. The procedure lasted very long, but she tolerated it beautifully. She is so tiny that they had to keep turning her at different angles to try to get just the right shot of what they were looking for.

But they finally got it, and what they believe they're seeing is a double aortic arch. It's something that we all have as developing embryos, but usually, parts of the arch eventually deteriorate and we're left with only one main aortic arch. The arch shape of the aorta, which is the artery that pumps blood from the heart to the rest of the body, normally only occurs on one side of the trachea and esophagus. In her case, it has formed two arches, one on either side of her trachea and esophagus, and they are pressing against her airway, causing the malacia.


It is very good to have an answer to what is happening. It's also very good to know that tracheal reconstructive surgery is not needed. It's scary, though, to think about a heart surgery to correct this abnormality. It's hard not to be sarcastic and cynical...I keep thinking things like, "Great, like she hasn't been through enough already." I just want my baby to be safe and healthy and normal. I want her to be able to grow and come home with us to live. I don't want her to have to go through anything else - she has been through so very much already.

And she's not even supposed to be born for seven more weeks. She should be safe and snug inside my belly, kicking around, sucking her thumb, having the hiccups. Instead, she's on a ventilator and has a tube up her nose and probes all over. She's poked and prodded and sedated and paralyzed and I have to ask somebody if I can come into her room to see her, if I can touch her, hold her, kiss her.

I think it's all wearing on me just a little bit, but God is good. He formed her in my womb, he loves her, and he knows about this double arch. It's not a surprise to him. I'm praying he will keep her safe during any procedures she needs to correct it.

Kangaroo care

I've been able to do some kangaroo care with Brigid the last few times I've held her. It's skin-to-skin holding where I get to hold her against my chest. She seems to respond so well to it. I can imagine it feels and sounds like being in the womb again, where she could hear my heartbeat and my voice sounded different. It's such a special time for me too.

She was opening her eyes and trying to lift up her head to look at me when we first started. I actually had to hold her head down so she didn't twist her ET tube. Then she fell asleep and was resting so comfortably. I love that she is holding on to my finger.

She is getting so big now. She was 3 lbs. 11 oz. at her last measurement - a full pound above her birth weight.

Some new photos

I forgot that I took a few photos on Monday when I went to visit. This pink teddy bear is one of two - something a friend gave us for the girls before our surgery. I put them away because they were hard to look at, but I thought it would be perfect to use as a comparison to watch how Brigid grows over time. The bear is about 7 inches long - like a beanie baby. Note that Brigid's legs are bent, so it's hard to see exactly how long she is by comparison, but you can get the idea.


I love her feet. They are exactly the length of my pinkie finger, which is relatively small. Her second toe is longer than her big toe. Mine is the same way. That makes me smile.

Holding steady

Just a quick update to say that Brigid has been doing so much better since they adjusted her ventilator settings to hold open her trachea. Her blood gas readings have been great- her carbon dioxide has stayed well within normal ranges. She is tolerating her feedings well and is up to 9 mL/hour of breast milk through her NJ tube. This has enabled her to grow steadily and she's now up to about 3 pounds 9 ounces. She is actually visibly bigger than she was in the pictures from the last post. I have gotten to hold her almost every time I've gone in, and she has tolerated it very well. Today, a nurse even wanted to talk to me about some discharge paperwork - not that we're close to discharge, but she was just trying to go over some forms, like information about car seats and SIDS - and it was the first time I felt like we might actually be bringing our baby girl home some day soon.

It feels like she has come so far from where she was when she first arrived at Hershey, though I know we still have a long road ahead of us. Tomorrow, Brigid will be at 32 weeks gestational age, and she is almost 4 weeks old. We are praying that she would continue to remain stable and grow, and that her little trachea would completely heal. One doctor in her team mentioned that she did not think a tracheostomy would be helpful if Brigid does not outgrow her malacia, and suggested that she might need reconstructive surgery on her trachea at some point down the road. We are asking God to heal her so that she does not need this surgery at all.

Thank you so much for your continued prayers for little Brigid. We are so very grateful for all the love and support we have felt from everyone.

Happy ending

Yesterday was the perfect ending to what had been a very difficult week. Not only did we have to arrange for Fiona's burial, but Brigid had a procedure done that, for a baby her size, was very risky.

The goal was to get a better view of what was going on in Brigid's trachea. The doctors were fairly certain that there was some kind of blockage or a collapse, called a "malacia" and they needed to know which it was so that they could try to fix it and stop the repeated ventilation issues she was having. The surgeon pulled no punches in letting me know the dangers of the procedure - when you are having trouble exhaling, removing your ventilator tube and sticking something down your throat is always tricky. Heck, when you weigh 1.4 kilograms, just getting from the NICU to the OR is risky. He said that usually, when children head back to the OR, their parents worry, but he is fairly confident that they will be fine. This time, he wasn't so sure. Gosh, that was hard to hear, but we both understood that it was important to find out exactly what was going on because of the dangers associated with her not getting enough oxygen or having too much carbon dioxide.

Initially, the brochoscopy was supposed to be on Friday morning, and I was sad because we had Fiona's burial that morning and, knowing how risky it was, I was hoping to be there for Brigid. I knew that the three doctors who were performing the procedure - a pulmonologist, an ENT doctor, and the pediatric surgeon - had busy schedules and if that was the only time that worked for them, I had to just accept it, but when I was there visiting on Thursday, an anesthesiologist came into her room and said, "Okay, we have an OR available in about and hour and a half and would like to do the bronchoscopy today." I was taken aback, but thankful that I was able to be there for it. I called Patrick and he came to the hospital with me. Worried that it might be the last time I saw her alive, I took a few pictures of Brigid before they took her to the operating room.

She was heavily sedated and for the few days before, had even been on a paralytic medication, hence the ointment for her eyes that frequently stayed open and her little tongue sticking out. It was so hard to see her like this, but it was the best way to ensure that she wouldn't move and displace her ET tube.

But the procedure went off with out a hitch and they were able to get a better view of the Brigid's trachea. They determined that at the very far end of her trachea, Brigid has a floppiness where there is supposed to be more of a rigidity. It's called distal tracheomalacia, and the surgeon felt fairly confident that she could grow out of it eventually. It was so good to learn exactly what was going on, and the respiratory therapists have been able to add a little more pressure to her ventilator settings to help keep that end of her trachea open, enabling her to ventilate her carbon dioxide much better than she had been.

Because of this, they have been able to take her off the paralytic medication, resume her breast milk feedings with an NJ tube - one that goes directly into her intestines, bypassing her stomach altogether - and she can just grow. We are praying that she is able to outgrow the tracheomalacia altogether and will not require a tracheostomy in the future, though that is something she may need eventually.

Yesterday, when I went in for a visit, her nurse surprised me by asking me if, after we did her hands-on care and diaper change, I would like to hold her. I was beyond thrilled, as it would be only the second time I'd gotten to hold her since she was born. She warned me that it might just be for a short time, as we'd have to monitor her carefully to see how she tolerated it. I understood and was grateful to have her in my arms just for a moment. So we worked together getting all her tubes and wires secured and carefully moving her from her bed to my arms in the rocking chair. She tolerated it beautifully and did not have one single alarm on her machines or any issue whatsoever. I got to hold her for an entire hour, singing to her and kissing her sweet face. I'm pretty sure she knows my voice now, as she tries to open her eyes whenever she hears me and will often smile behind all the tape holding her tubes in place. It is so very sweet to see.

The nurse took a few photos of us:

When I called this morning, her nurse said she had a great night and that they had been able to increase her feedings overnight to 3 mL per hour. When she weighed her this morning, she was over three pounds! She is three weeks old today - which means that her adjusted age is 31 weeks and 2 days (she's not even supposed to be born for 9 more weeks). All she needs to do now is grow.

An update

Yesterday a pulmonologist was able to use a tiny scope to look in Brigid's lungs and see if there was any type of blockage causing her continued issues with CO2 ventilation. The good news is that he believes he may have found a narrowing at the end of her trachea, called a tracheal web, that is like a flap of skin inside. It's something that may require surgery. It is acting like a one-way valve, making it easy for oxygen to get in and hard for the CO2 to get out. He's not completely certain whether it is a web or inflammation from the tube and suction they've had to use, but either way, he's pretty sure it's causing the issues she's having.

Because of this, they have placed her endotracheal tube (the tube for the ventilator) just below this narrowing, and have found that to be very effective for keeping her carbon dioxide levels in normal range. Unfortunately, the space they have between the bottom of this narrowing and the top of the place where the trachea branches into the lungs - called the carina - is extremely tiny. If she moves the tube a little too low, it touches the carina and cuts off her oxygen. If she moves it out a bit, it's above the narrow area and causes her carbon dioxide levels to rise. She is a strong girl and tends to move a lot, even under sedation, so they have actually had to keep her paralyzed to keep her from displacing the tube. It is so very hard to see her like this.

A surgeon took a look at Brigid yesterday evening and said he'd prefer not to operate just yet since her trachea is so small and fragile. Plus, they're not completely sure whether they're indeed seeing a tracheal web or just an area of inflammation/granulation due to irritation from the ventilator. The plan is to keep her as sedated as possible until Friday, when they're hoping to do a different type of bronchoscopy, and have the ENT doctor, the pulmonologist who did her scope yesterday, and the surgeon all in there together to determine what they're seeing and what the best course of action would be.

I've been praying that they'll look in there Friday and see NOTHING because it will have miraculously healed between now and then!

Just pictures

Hoping to find something universal to put in there beside her to get a perspective on her size. A dollar bill could work, but it's far from sterile. I'm thinking of laminating one so I can wipe it with disinfectant wipes. Is that illegal?

A Special Day

Brigid is two weeks old today.

It's hard to believe that two weeks have gone by already, and yet, we've interacted with her so much in utero and spent so much intensive time following her development, that it feels like she's been here longer.

Not because I know her well. I don't. I can't wait to get to know her little faces and movements and sounds. To bond with her like I have within the first few hours of my other babies' lives.

But today, I got to take a step in that direction. I asked the nurse when I might be able to hold her again, and while today was not that day, the nurse did offer to open the top of the isolette and let me get up close to Brigid. After seeing that Brigid was doing okay and didn't seem bothered by the change, the nurse went on her lunch break. What a special experience to have one-on-one time with my baby girl. It was the first time I've gotten to kiss her since the day she was born. I leaned down and kissed her head and then sat beside her with my hands on her head and legs, praying for her and talking to her and singing to her. She reached up right away and grabbed my finger and held on. Because I could see her face better, I noticed that she seems to look a little bit like Thomas at this point. I'm sure that will change, but it was the first time I noticed a resemblance to one of the other children.

Note to self: bring camera to the NICU more often.

Then I remembered that she is supposed to resemble her sister. That made me sad.

Today, Jack and PJ also got to meet Brigid for the first time. We had to get them up to date on their vaccines before they were allowed to come into the NICU, and we did that a few weeks ago. I talked to the nurses about it when I was there, so today Patrick brought them after their naps and one at a time, they got to go in and see her. Jack was fascinated by her little fingers and toes and loved being able to reach in and touch them.

Note to self: bring camera to the NICU every time.

Aside from the lack of photographic evidence, though, it was a very special day with our little girl and we're so grateful that she seems to be doing so well right now!

Developments

So much has happened since my last post, I almost don't know where to begin.

Let's start with Wednesday, May 4th. At 4:30 in the morning, I rolled over in bed and felt a gush. My water broke after exactly eight weeks on bed rest. The boys were sleeping, but I woke Patrick and told him we needed to get to the hospital. Our neighbor came to stay with the boys and we headed to the hospital, where it was confirmed that my amniotic sac had indeed broken, but I wasn't dilated at all, and I was admitted. I was 27 weeks and 5 days pregnant and I was scared to death.

I spent several days at the hospital, on magnesium, antibiotics, and IV fluids, with minimal contractions, trying to keep baby Brigid safe inside for as long as possible. Every day, the perinatologist would come into the room with a portable ultrasound machine, check on Brigid, and say, "Looks like you're going to be pregnant for another day!" She was doing well, moving around and not showing signs of stress, other than her lack of amniotic fluid. Occasionally, I'd have some contractions. They were painful with no fluid in there to act as a cushion, and it was also very painful when Brigid would move around. My uterus felt bruised and sore.

Patrick brought the boys in to visit me a couple of times and a thoughtful friend had some photos taken of them and framed for me for Mother's Day since she knew I'd be spending it in the hospital. They brought that to my room on Saturday the 7th and it was so good to spend time with them. I'd missed them so much. Being on bed rest at home was bad enough, but being on bed rest in the hospital was lonely and difficult. I had incredible nurses, who were all so caring and kind. I wore monitors continually that would check for contractions and track Brigid's heartbeat and everything was looking really good. For four days.

Sunday morning, May 8th at around 4:00 a.m., I had a few contractions. I'd had 3 in 30 minutes. This wasn't many, but it was more than I'd been having. I decided to call my nurse to let her know because sometimes the monitor wouldn't pick them up. When Kate, the nurse, came in, she began moving the heart monitor around to find the baby's heartbeat because sometimes Brigid would move and we'd have to relocate it. It usually only took a few seconds to find it again. But this time was different. This time, it took what felt like an eternity. And as Kate is moving and pressing the monitor into my uterus to find the heart beat, I kept contracting. They were coming about every five minutes now and Kate put me on an oxygen mask so I didn't hyperventilate as I tried to breathe through each one with no pain medication. I was panicking because we couldn't find a heartbeat, panicking because I knew that I was probably going into labor right now, and panicking because Patrick was not there with me. Finally, Kate found the right spot and we heard Brigid's strong heartbeat. I grabbed her arm, sobbed, "Oh Kate!" and burst into tears. She did too. It was one of the scariest moments of my life.

I called Patrick to say that things were progressing, but Kate had put a call into the doctor, who said to try some nubain for the pain and to see if that helped the contractions to stop, so I told him that maybe I was wrong and I'd call him back if he needed to come in. It only took a few minutes for Kate and I to realize that we were never going to have time for nubain. Contractions came faster and stronger, and I texted a one-word message to Patrick: "Come" as multiple nurses found their way into my room in response to the dinosaur-like noises coming from my mouth. People were pressing the monitor into my contracting uterus and I kept pushing their hands away. I had the oxygen mask on and someone telling me to look at her and breathe while she held my hand, and then the doctor came in and wanted to check to see if I was dilating at all. I wasn't anymore. I had dilated completely and Brigid's little buns were trying to make their way into the world. The doctor decided she wanted to try to deliver her breech and started getting the room ready for that, but I insisted on the c-section that our perinatologist had said we were going to need, so off we went to the OR. I was petrified and spent the ride between the rooms praying out loud. I'm sure my nurses thought I was crazy.

At 5:30 a.m. on May 8, 2011 - Mother's Day - Brigid Eileen Tully and Fiona Jane Tully were born. Patrick arrived at the hospital just as Brigid was born, and was able to follow her right to the NICU while I recovered from surgery. She looked good, weighed 2 pounds 11 ounces, and was 15 inches long. In the recovery area, Patrick and I were able to see and hold Fiona. It was difficult to see her, though I'm sure some of my medication from the surgery made it a little easier for me. The nurses were very kind and offered to make some hand and foot prints for us to keep and to take some photos for us. One was even able to make plaster impressions of her hands and feet. They put everything into a box for us to take home and look at when we're ready. I haven't been ready yet. Jack and PJ knew that Fiona had died and that she now lives in heaven, but they had no idea that her body was still in there. We're happy to keep it that way for a good long while.

Brigid did relatively well in the NICU of our local hospital until the day I was to be discharged, when the carbon dioxide levels in her body reached dangerously high levels and she had to be airlifted to a higher level NICU in Hershey, Pa. Today, she is twelve days old and has been at Hershey for eight days. She has had some issues, mainly with her lungs, and continues to have difficulty getting rid of the CO2 in her respiration. She has required very little, if any, excess oxygen, which is unusual for preemies, but we are learning that NICU life is, as bedrest life was, one day at a time. She has some good days and some bad days, but fortunately, we've been able to go and visit her every day. She has amazing nurses and doctors and respiratory therapists taking very good care of her.

She is a beautiful little girl with a thick head of dark hair. It's hard to capture her size in a photo because it's not easy to use something universal to compare her to. It's ideal to keep her in a dark, quiet environment that is womb-like, and flash photography is not conducive to that, but we do have a few photos from her time in the original NICU from the hospital where she was born.

This post is so very long, but we are thankful for your thoughts and prayers and would be grateful if you would continue to keep our little Brigid in your prayers. This has been such a trying time. I find myself somewhat detached from her - like I'm visiting someone else's child in the hospital - and I'm sure that some of that is good when I have to leave her each day. I felt bonded to the boys after their first few days of life, though, and I don't totally feel that yet with Brigid. I can't wait to be able to hold her more and get to know her better. We have been through so much together so far, she and I, and we are praying that she would continue to show that she is living up to her name - Brigid the Strong. She is so strong for such a tiny person!