Story Time

We are cautiously optimistic, but things do seem to be going better.

Zoe is gaining weight every day, and now weights 1180 grams or 2 lbs. 9.5 ounces. She is progressing on her feeding regime, and is half way to full feeds. She was at full feeds before the nasty infection came, and everyone seems to think she will have no problems achieving this again. She also had a little poo in her diaper; good sign that things are being processed.

Zoe is back on CPAP, the constant pressure mask that assists her breathing. We watched the transition off the ventilator, and she looked happy and comfortable with the change. We hope she stays on CPAP or progresses to a nasal cannula.

As I have said for the last few weeks, the next week will tell us a lot. We hope she gets to full feeds without problems, excels on CPAP, and does not run into any more roadblocks.

We also started reading to her every night. We hope that she recognizes our voices and is comforted by our presence. So far, she seems relaxed and enjoys the story. There really is very little we can do but wait and be there. Story time helps us and her.

Daddy Time

Zoe continues to do well today. We are still waiting for her system to start moving food through her belly - hopefully that will happen soon. Yesterday, she got a clean condo and Neil got to hold her while they were changing that out. He held her for about 40 minutes or so. She was perfectly content the entire time. She had her eyes wide open and was looking around, checking everything out and truly enjoying her time being held. She fell soundly asleep after about 20 minutes. Her heart rate came down, her breathing leveled out, and she was very peaceful. It is a good sign that she tolerates being held well. Of course, I forgot my camera, so I didn't get the first picture of that, but we'll have to recreate it in the future, many times.

Phew!

It is so much more fun to go to the hospital when your baby is doing well. Zoe has officially gotten rid of that nasty infection. It was a tough one, but not tougher than our Little Gorilla. She is feeling so much better. She has great energy and has even managed to put on some serious weight, gaining 70 grams last night to put her at 1,040 grams or 2 lbs. 5 oz. The next big hurdle is to reintroduce her to breast milk (which they started again last night) and get her to 1,200 grams. The docs say that that magic number seems to be a turning point with the smallest babies- we are excited to get there.

It has been a stressful 10 days with Zoe being sick and we are thankful to be on this side of it. Another hurdle down. Zoe wanted me to tell you all that she really appreciated the positive wishes and prayers. She realizes she gave us all a little bit of a scare and will try to avoid that in the future.

One Month

When we entered the NICU, one doctor told us that there are many steps or checkpoints that are significant. The first 72 hours, one week, one month and then two months. Zoe has made it one month and we are proud of her for that.

She seems to be improving every day. We wanted to hold off on writing until we have a negative blood culture for 72 hours. We are close, she has gone about 56 hours and no infection has grown in her last blood draw. Previous blood draws began to show signs of growth much sooner. Our fingers are crossed.

She is still very active during her care times, and she continues to need little support with her breathing. If everything proceeds as we hope, the doctors want to restart breast milk feeding and extubate soon. We are cautiously optimistic.

It is nice to finally hear good news. We will write more soon.

Happy 1 month little Zoe!!!

Still Fightin'

We were convinced Zoe was finally over this bug since she looks and is acting so much better, but unfortunately, the blood cultures are still coming back positive. Sometimes when infections seem to linger, like this one, the bacteria can be growing on the catheters or other tissues or bones in the body. The antibiotics apparently have a hard time fighting infection when they are attached to plastic lines or embedded in bones or tissue. They have changed her antibiotics once again to hopefully get at these tough bacteria. If this doesn't work to cleanse her blood, they'll have to pull all of her lines. This is fine, it just means she has to get poked a lot to draw blood. They will also need to reduce the glucose level in her IV nutrition while she doesn't have a central line.

The good news is that she is obviously much better so these bugs are reacting to the antibiotics. It just may take more time for her to fully beat this thing. She is so close to being herself again, we are hopeful. Last night, the nurse encouraged me to try to calm her down and to bond with her by putting my hands on her and talking with her. She was awake for about fifteen minutes, giving Mom a chance to have a heart-to-heart with her about getting well soon. She really does know my voice - the miracle and specialness of this are more than I can explain. When she started fighting to keep her eyes open, I stopped talking, let her rest, and eventually tore myself away - tucking her in in my own way.

Takin' a Breather

Little Gorilla

We gave Zoe this nickname early on because we were so amazed by how much dark brown hair she had on her body. Of course, this hair usually comes off before birth, but she's still got hers for the time being. We're not exactly sure where she got it, but we're thinking it will get blonder as she gets older.

She is about the same today - still fighting an infection. Two of her cultures (blood and lung fluid) grew some type of staph bacteria. The doctors feel confident that the antibiotics are doing their job, but it's hard to wait for her to fully recover. As one of the doctors said today, a day feels like a week and a week feels like a year. Her numbers look good, she's just really exhausted from being sick.

Three Weeks

After a torturous day of waiting, we are happy to report that Zoe seems to be turning the corner on the infection. She still has a long way to go to get back to being herself, but we feel hopeful that she is recovering.

We went to the hospital this evening to check on her and she looked so much better to us. Her swelling was down, she was more active, she opened her eyes to look at us, and her vital signs were better. This was a dramatic improvement from this morning and from our last update.

She still has a long way to go to make up for the time lost to this sickness, but she is incredibly strong and we have to believe that she will continue to do well. As they say in the NICU, it's one step forward, three steps back. We are just beginning to understand what this means.

Oh, by the way, she passed the 2 pound mark and is weighing in at 2 lbs. 2 oz.

Struggling

We were procrastinating updating the blog so that we could give everyone some good news, but unfortunately we don't have much of it to report. On Monday, Zoe was really struggling on her breathing and had some significant events where the doctors had to bag her to make sure she was still getting enough oxygen. They decided she needed to go back on the ventilator to get the 2-week "tune-up" that babies this size often need. We were obviously disappointed, but they had warned us all along that this was likely to happen. We just thought our baby would be the exception.

The reintubation did not go as well as they would have liked. Her windpipe was swollen and they struggled to get the tube into her lungs. She made it through that, but Tuesday started showing signs that something else might be going on.

They now think she has an infection somewhere and started her on antibiotics yesterday. Like Sawyer, her blood cultures have come back negative. It makes it harder to fight an infection when they don't actually know what type it is. They had to stop her feeds on Monday night and they won't be able to restart them until she is well.

The doctors assure us that this is a common problem for babies this size, but we can't help but see the similarities between this and what Sawyer experienced. We are in the waiting game again, waiting for the antibiotics to work and for her to stabilize. It is hard to see her going through this. She has always been so feisty and alert and now she is very lethargic.

Sorry for the bad news, but we want to keep everyone informed. We hope she starts to improve, and we will keep everyone up to date. We know she is strong, and we are trying to stay optimistic.

Giving Thanks

Even through these most difficult days, Neil and I feel incredibly blessed by the love of friends and family. We are doing o.k., grieving for the loss of Sawyer, but hopeful for the future. It has been very comforting for us to read your posts and emails and know how much our family is in your thoughts. We will get through this.

We have probably become the nurse's worst nightmare though. We are so concerned for Zoe that we are calling and going to the hospital to check in on her a ton. Yesterday, she started to struggle a little bit on her CPAP. This is very common after a couple of weeks doing the work herself. Babies her size typically just get tuckered out. The doctors think she is also having more apnea because as her feeds go up in quantity, her growing stomach pushes on her diaphragm making it a little bit more difficult to breathe. They did run blood tests on her anyway and they came back normal so that was a huge relief.

I also got to hold her for the first time on Thursday which was very nice for both of us. Research shows that babies that do skin-to-skin time with mom and dad do better in the NICU so we will be doing that as often as we can when she's stable. Neil and I both think she knows us now. We talk to her through her glass castle and she looks over toward us with big eyes. She is still growing well, although she is not quite at the 2 pound mark.

Thanks again for your support. It means a lot to both of us.

Little Saw Man

It's amazing how quickly you can fall in love with a child you have never held or one who has never looked at you. We fell hard for our baby Sawyer over the last couple of weeks and we will miss him so much. Last night, after difficult conversations with the doctors and each other, we decided we needed to let Sawyer go. It had become evident that he was not responding to antibiotics and that even if he did survive, he was likely to face serious long-term health impacts. He was very sick and suffering and we couldn't continue to put him through this. Although we know this is the right decision to make, it is obviously very difficult and sad.

We were with him and holding him when he passed away at 7:30pm. He put up quite a fight this week and we are proud of him. We hope that he is now in a better place and that his strength and vitality will live on in his sister, Zoe. Thank you to everyone for your prayers. We still have a long road ahead of us for our little girl and she needs all the positive energy we can muster.

We are obviously incredibly sad, but feel fortunate to have such a beautiful little girl (that the nurses nicknamed Smiley), wonderful friends, and amazing families that support and love us.

Two Weeks

Today got off to another rough start. We were called down to the hospital to check on Sawyer, who was struggling. When we got there, he had stabilized, but he is still so sick. The infection has control over his little body. They aren't able to culture anything, so the doctors are combating it by throwing random, strong antibiotics in his system. The first round didn't work, so they added more. He is filled with so many drugs, and we can only wait and see what happens.

We are asking tough questions and maintaining close contact with the doctors. They say they have seen kids sicker then him recover. We still have hope, but it is very difficult to look at something so precious going through what he is dealing with. We hope the near future has answers to many of our questions. We are trying to stay optimistic, but it is difficult when we see him going through this.

Zoe is doing well. She continues to put on weight and is very close to the two pound club. Margo and I are so happy for her.

We will try to keep you updated.

Another Day

Much is the same today. Sawyer is still fighting the infection with little ground being gained. The Neonatologist seems to have stepped up the intervention, and he has so many drugs being pumped through his little system. He shows some small signs of improvement, but these are many times followed by some bad news about something else. It is a wait and see thing. The next 24 hours are going to tell us a lot.

Zoe graduated to the next size diapers and pillow, used to support her when she sleeps on her tummy. Small gains, but we will take what we can get at this point. She is continuing to do well.

We will continue to post. Think good thoughts.

A Very Long Day

We just got home from a very long day at the hospital. We essentially waited for test results and any indication that the antibiotics were working. Earlier this evening, Sawyer's heart rate did go down and his blood gases looked better. The doctors are concerned that there may be some internal bleeding, but they haven't been able to locate any. In order to rule out a head bleed, Sawyer got another cranial ultrasound. This thankfully came back normal. He also is getting x-rays every 6 hours to check his GI system for internal bleeding. So far, things look o.k. but they will continue to monitor for bleeding.

Our little man is very sick, but when we left the hospital, things seemed to be a bit more stable. It's mainly a waiting game at this point. The antibiotics can take 24-48 hours to work so we will see what tonight and tomorrow bring.

Zoe continues to do well and weighed 1 lb 12 oz. tonight. Neil got to pick her up and helped weigh her. She seemed to like being held by her daddy. She had her big eyes open and was looking over in his direction. She was very alert and curious. We are looking forward to holding her soon - some kangaroo care time would be nice.

We will try to update you as soon as we know more about Sawyer's condition.

Set Back

This morning we got the phone call the we were dreading. The nurse told us that Sawyer has an infection. It pretty much has messed up his whole system. They do not know where it came from or how long he has had it. It could be something that survived the first round of antibiotics and now has grown. Anyway, he is on stronger antibiotics and way more support than he has had in the past. We are just hoping that the little man can pull through this.

The cardiologist talked with us about Zoe's tachycardia. I am even more confused after speaking with him. They are going to do more tests. Other than that, she is doing well. Her feeds are being increased regularly, and she is gaining weight. She is still on the CPAP and seems to be tolerating it. She does have fits when they take her off the machine and let her breathe as you and I do on room air without assistance. But this is to be expected.

The emotional roller coaster is intense. So many up and downs. It is quite the ride.

Thank you all for your support.

Day 12

Things have been a little quiet around here - Neil and I are just getting used to our routine. The babies are still doing well. They're eating really well and pretty soon will almost be up to their full feeds. They introduce food slowly so it doesn't overwhelm their systems too much. They are both getting EKGs tonight because they tend to run pretty high heart rates. The doctors haven't seemed too concerned about it so far, but we're glad they are looking into it. They were pretty high in utero too so it may just be them. Who knows.

We are not out of the woods by any means. The "honeymoon" period typically lasts for about two weeks and they early babies tend to get a little tired out and need some more assistance. Zoe and Sawyer seem to be a little more tired today, but that is to be expected - they are working very hard.

Thanks for your continued support and prayers.

One Day at a Time

Quite an eventful day for Sawyer. They tried him off the ventilator. He stayed on the CPAP (which is what Zoe's on - constant pressure mask) for about an hour today before being reintubated. It was a lot of work for our little guy and he made us very proud for the effort he put in. It's not unusual at all for him to not be quite ready to breathe all on his own yet. He needs to develop and grow a little more before he's ready for that. They'll probably wait about a week before they try again. The good thing is that he does really well on the ventilator with pretty minimal support. He burned a lot of energy working to breathe on his own today so he was really tuckered out after that. He lost a little bit of weight last night too but he had some great poops too. What our little guy needs is time to grow into his big personality.

Zoe put on some more weight last night and is almost back to her birth weight. She seems to be eating and resting well. She also has tolerated her care times well. We are just hoping that she continues to do so well.

Poopy Diapers

It is kind of weird to get excited about poop, but we are. Both have had blow outs that I changed. Margo has the amazing sense of awareness to check the diapers when there is nothing there. Poop is significant in that food is working its way through their systems. Zoe gained weight today, and Sawyer stayed about the same after two days of gains. The nurses said that they will gain weight for a day or two, then lose a little bit as it (poop) leaves their system. This all points to more positive signs that their systems are working and processing foods. We hope this continues and they are able to begin to pack on weight. We will keep you updated.

One Week

The first week has been a blur. It seems like yesterday that we were admitted to the hospital here. Zoe and Sawyer are about the same today, no major news. Zoe had a poopy diaper which means that her system is moving things through a little bit. Sawyer gained a little weight last night too which is great news. He's back to his birth weight now and we are just hoping that he continues the trend. They are very restful, getting used to life in their new homes.

The doctors tell us that the next couple of weeks will probably be full of ups and downs as they try to mature the babies along by testing them a little bit. We are trying to prepare ourselves for that and stay strong for our little ones.

They are so different. Zoe has a darker complexion and dark brown hair and Sawyer is pale pink with a speck of blonde hair on his head. We are patiently waiting to see who they resemble as they start to grow.

Thanks for all the prayers and love.

Zoe

Sawyer

Another Hurdle

The babes passed another large hurdle today. They had head ultrasounds that detects bleeding in the brain. The results came back normal. This is a huge accomplishment, and Margo and I are thrilled with the results. Both kids gained weight and keep amazing us with their progression thus far. Thanks for the support and keep thinking good thoughts.

Welcome to the World

Thank you for sending your love, prayers and positive thoughts to our two beautiful babies. We hope that this blog will keep you updated on their progress through the months ahead and we look forward to sharing our story with you.

We welcomed the twins into the world on Thursday, March 27th, 2008. After a very healthy pregnancy, I went into labor on Wednesday, March 26th, 14 weeks early. While the cause may never be fully understood, it's likely that there was a small leak in Zoe's amniotic sac either caused by an infection or simply a weak membrane.

Zoe Montgomery Young was born at 6:38pm, weighing 1 lb 9.8 oz. and measuring 12 inches long. Her brother, Sawyer Don Steven Young, followed quickly behind at 6:40pm weighing 1 lb 1 oz. and measuring 11.5 inches long.

The past five days have been a roller coaster. We are learning quickly the ins and outs of the neonatal intensive care unit at Swedish Hospital. The nurses and doctors are amazing, loving people. Neil and I participate as much as we can in their "cares" by taking their temperatures, changing diapers, and soothing them as much as possible.

Zoe is doing very well. After 2 days on a ventilator, they were able to take her off and put her on a CPAP. It basically means that she is breathing on her own, but just has some constant pressure to help get her more air with each breath. They started introducing small amounts of breast milk yesterday and she seems to be tolerating it so far. All of this obviously can change at any moment, but we are impressed with her progress thus far.

Sawyer is doing well too. He is smaller than his sister but shares her feisty personality and determination. He is still on the ventilator, but they will likely try to take him off in the next couple of days. He is also receiving breast milk and seems to be digesting it. We can't wait for him to be able to put on some weight.

A series of tests for them lie ahead in the next couple of days and weeks. Everyone tells us it's a step forward and two steps back so we are preparing ourselves for that. It is amazing how much we love these two already. They make us so proud.