Three little monkeys

These three boys have been so amazing during our entire experience with the twins and Brigid.
Like, really amazing. We have had such a big upheaval in our family from my eight weeks of bed rest, two hospitalizations, and several weeks in the NICU, and they have done such a great job adjusting to each situation.

Sometimes, people ask me if they know what is going on. They know everything except for the fact that Fiona remained in my stomach after she died, came out when Brigid was born, and was buried. I figured I'd spare them the thought of that. But they know everything else.

In fact, in church the other day, a lady who had seen me pregnant a few months ago and then didn't see me for a while asked, "Where's the baby?" Jack and PJ did not skip a beat telling her the whole saga, taking turns talking with each phrase: "Well, we had two babies, but then Fiona died, and then Brigid came out, but it was too early, and now she lives in the hospital, but she's our baby sister!"

I was in tears by the end of the story, both at the flat-footedness of their response and at the innocence of it. I still don't feel like this is really happening somehow. I don't really feel pain about it, but sometimes, when I think about all that's happened to me in the past three months, I can't believe how overwhelming it is. I cry a little for myself, as if it were someone else I was feeling sad for.

But then I get to spend time with these guys.

Jack is learning so much. He's like a sponge. I love to hear how his mind works...and he's always saying what's on his mind, so it's easy to hear.

There are often ants out on our deck and the other day, he saw them and said, "Oh hi, guys."

Then, to me, "They're my ant friends. They know me." Like, "It's okay, Mommy. Don't worry, I have it under control."

Oh, okay Jack.

Here he is holding his old buddy, Hercules.

Then, there's my Peej. He is my little buddy. His smile melts my heart. He's a little bit of a mama's boy, but not so much in the way that I can't leave the house or take a shower or use the bathroom without him crying (anymore). It's more that he just likes to be where I am. And I like that.

We call Thomas our Baby Monster, because at just 16 months, he is 30 pounds and 35 inches tall. He loves books. He is a joker. He is learning to say so many things. He says "thank you" every single time you give him something. He is incredibly easy-going. At the start of my bed rest, before we'd hired someone to come and help us with the boys every day, we had several volunteers coming in to help us - a new person each morning and afternoon. I counted that in one week, nine different ladies went to Thomas's room to get him up from his naps. Some babies might balk at a stranger coming in to get them out of bed (to say nothing of nine strangers), but not Thomas. He didn't bat an eye, and was likely excited to see each of them. He is so sweet.

These boys are medicine. They are like a salve for my wounds. They make me smile when I'm sad, make me laugh when my heart is heavy, perk me up when I feel like I can't put one foot in front of the other for one more day. I am so grateful for my three little monkeys and can't wait to see what wonderful big brothers they are going to be to little Brigid.

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.

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!