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.

Fiona's Day

We're going to bury Fiona today.

It won't be a large service. Just Patrick and me and a priest from our parish at the grave site for a little prayer service.

I'm not looking forward to it, and yet, I'm glad we get to do something to memorialize her. A song I was listening to yesterday had a line in it that reminded me of Fiona: "Beautiful setting sun, though I can no longer see you, I see the light your daily death has given to the stars." Fiona lived just long enough to save Brigid's life in utero and is watching over her now, I have no doubt.

We had some prayer cards made with a poem that a friend sent to me after Fiona died. If you're interested in having one, please let me know. The back of the card says this:

It is not growing like a tree
In bulk, doth make man better be,
Or standing long an oak, three hundred year,
To fall a log at last, dry, bald, and sere:
A lily of a day
Is fairer far in May
Although it fall and die that night;
It was the plant and flower of light.
In small proportions we just beauties see,
And in short measures life may perfect be.
-Ben Jonson

In loving memory of
Fiona Jane Tully
Welcomed into the arms of Jesus on
March 16, 2011
and into the arms of her Mommy and Daddy on
May 8, 2011

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!

No, thank you

There are certain things a mommy should never have to do.

At the top of the list is picking out a tiny baby casket.

Just sayin'...

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!

Car rides and rainbows

A few more thoughts for tonight...

We've had a week of rapidly changing weather, and as Patrick and I are driving back and forth to Hershey each day, it will often alternate between downpours and sunshine, and occasionally it will do both things at the same time. It's been prime rainbow weather every day.

Only I haven't seen one.

I'd find myself making little deals in my head with God in the car. "Okay," I'd think. "If I see a rainbow, that means Brigid's going to be fine." And then I'd crane my neck all over looking for one, all the while reasoning with myself that even if I don't see a rainbow, she could still be fine and realizing that I could see one and she could die tomorrow. I'm testing God, I'd think, and then I'd feel ashamed of my silliness. He doesn't owe me a sign. He's told me enough about himself for me to have faith in this situation, whether or not I see a rainbow.

It's not faith that Brigid will be okay that I'm called to have. If that were the case, and she died, my faith would be shattered.

Rather, it's faith in God's goodness. It's faith in the fact that His ways are not our ways. That all things work together for the good of those who love Him. It's faith that God is sovereign and knows us and loves us and sees our situation. Faith that we're still in the palm of His hand. It's faith that if it's His will for her to heal and grow, she will. And if it's not, we'll still be okay. It's faith that He knows more than we do. Faith that He is trustworthy and that He loves our baby girl even more than we do.

This is the faith that we are called to have. This is the faith that I have to exercise each day, as surely as an athlete exercises his heart and muscles for an endurance trial. God is so good to give us our daily bread - the strength to get through each day, even when we don't know what is at the end of the road.

I'll still crane my neck to look for the rainbows.

But not because they have anything to do with Brigid.

Image: http://climate.met.psu.edu/www_prod/data/frost/frosttraining.php#Optics

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!