Homecoming in sight

Xavi has been making great progress. He's up to 5 1/2 pounds, so he's gaining weight well, and he's been keeping his body temperature stable for some time now. Those are two of the major requirements for being able to come home.

The other challenges--taking all of his feedings by mouth and oxygen level--we'll be seeing about in the next couple of weeks. He's doing great both bottle feeding and breast feeding, but he's not yet able to take a feeding by mouth at every feeding (which come every 3 hours). He's steadily building up his endurance to do that, though, so I'm sure we'll see good progress on that front this week.

The other main question is what his oxygen requirements will be. It looks very likely that he'll still require oxygen support when he comes home. They will be trying out some new things this week to see how he will do on a low-flow cannula with 100% oxygen (currently he's on a high-flow cannula with a much lower concentration of oxygen).

We're just about 3 weeks from his due date, and it looks like he'll be home by April 9 if not before.The end is in sight!

Eva and Xavi

Each Wednesday one of the girls comes to the hospital by herself to have special time with Xavi and me. We have lunch together (they love the "hospital restaurant," where lunch usually consists of a mini-box of Fruit Loops or Apple Jacks and Sun Chips), and then we go up to spend some time together with Xavi. Last week, Eva got to help Amy to take Xavi's temperature, change his diaper, and then got to hold him for the first time. They both loved it! Xavi kept opening his eyes to look at her and gave her a little smile, and then conked out and slept peacefully while she held him.

Keeping an eye on what's going on

First family photos

The girls love having Xavi out in an open crib. They can see him and reach him and relate to him much more easily. These are the first photos of our whole family together!

Sweet sleeper

Making progress

All the news is good news! Xavi is making great progress these days:

• He's been out of the private room for almost two weeks. There are only 2 private rooms in the NICU and he was in one of them for about 7 weeks, so getting out into the ward with the rest of the kids is a good sign that he's not critical anymore. He scooped the most coveted spot in the NICU: the bedside right next to a big window.
• He's in a crib!!! We came in this past Saturday morning to find his nurse completing the changeover from isolette to open crib. This is a great sign of progress, meaning that he's able to keep his body temperature stable without the help of the enclosed isolette, and that he's not having to work too hard and burn too many calories to do it (which would impede his gaining weight). He's now much more accessible and easier to hold. The girls love being able to get so close to him too.
• He weighs 4# 4 oz, just gaining 6 oz in the last 4 days.

And the most wonderful sign of progress is that he is now off of CPAP entirely and just on the nasal cannula. He's been on the cannula for gradually increasing periods of time for the past week. He was doing well and is also getting old enough to be really tired of the CPAP, so yesterday morning they decided to see how he would do on cannula all the time. So far he's doing very well. Being just on the cannula is a great step forward for him, indicating that his lungs are getting stronger and he is becoming overall stronger and more able to handle the work of breathing on his own. 

In addition, being on the cannula full time means that feeding by mouth is in sight. We started "social breastfeeding" about a week ago, giving him time to get the idea without needing to actually get any nourishment from it. The nurses moved his feeding tube to his nose on Sunday, so for the first time in his life, his mouth is free of tubes and he is beginning to make positive associations with his mouth.

Especially now that he's off of CPAP, he is very awake and alert for longer periods of time each day. He seems like a very sociable little guy, really liking to look at people with long, thoughtful gazes. He also loves the music-playing mobile on his crib and will focus on the animals circling around for a long time.

Naked no more

Hurray! Wearing clothes is actually a sign of progress, and Xavi has been making all kinds of small strides in the past week or so: 

• He is becoming overall more stable, so that the main things going on are eating, breathing, and growing without other major interventions or crises anticipated.
• He is gaining weight--some days 1 oz per day--and is up to 3 lb. 6 oz.
• He is more able to maintain his body temperature. They removed the probe which constantly monitored his temperature (the isolette then regulated its temperature moment to moment based on whether he needed to be warmer or cooler), and now he is just in the heated isolette. They are weaning the temperature inside the box, preparing him for the eventual launch to an open crib. He now needs those clothes to help him stay nice and warm.
• His head ultrasounds have shown stable ventricles for the last several weeks. Since there has been no sign of his hemorrhage worsening up until this point, there is a good chance that it won't get any worse.

(Those bright blue spots are part of the CPAP mask, not his eyes :) Not a great picture, but had to show the clothes.

Sweet face

Last week Xavi had a trial on a new kind of CPAP connection. Called the Ram Cannula, it has the smaller facial attachment, but still gives the same CPAP pressure to help keep his lungs open and give oxygen flow. We liked the idea of this new attachment because it was smaller and more comfortable, and also because we could see more of his sweet baby face. However after a couple of days, Xavi needed to go back to the regular CPAP mask because he wasn't getting enough breathing support from the cannula. Disappointing that it didn't last, but still a hopeful sign of things to come.

The small comforts

This fleece-covered bean bag hand is one of Xavi's favorite things about the NICU. The nurses use this and other kinds of bean bags to give him a sense of comfortable containment.

A Watery Interlude

The girls recently began swimming lessons. They were nervous at first (the teachers assured us that screaming for the first few classes was normal), but now they look forward to them. Here are some gems from the first day. 

Xavi in motion

This is how Xavi usually is after we hold him: alert and peacefully awake.

Greetings, Earthlings

I remember this phase of preemie-look with Eva. They are SO cute, but pictures just can't do them justice. The pictures end up having an extra-terrestrial flair about them.

Healing well

Xavi's incision is healing well--the doctors and nurses actually call it gorgeous--and is amazingly small. He's got a few steri-strips hanging on, but otherwise it's a neat and clean healing. Overall, the doctor said yesterday that she is really pleased with his recovery this week. Way to go, Xavi!

Extubation Part II

He did it again! Xavi was able to come off the vent yesterday afternoon and go back on CPAP. So far, so good. They were also able to pull his pic line out, the line through which he's been getting IV nutrition. That means that his sole source of nutrition is now the milk he's getting through his feeding tube every 3 hours. It was a big day!

Still Recovering Well

We're happy to report that Xavi is still recovering well. He surprised the doctors and nurses by how well he went through the surgery and how well he came out of it too. His chest tube came out on Saturday afternoon and he's been more comfortable since then. The amount of medication he's on is gradually decreasing, as are his vent settings, meaning that he'll hopefully be extubated in the next few days. Thanks again for your prayers and support.

Xavi was garbed with his first piece of clothing to keep him warm during surgery. They kept everybody sweating too with the temperature in the OR set at 80 degrees.

This is the apparatus they used to transport Xavi from the NICU to the OR. We were glad to see that his weight (currently 2lb 8oz) was within its limit.

Success

Quick note on Xavier. His PDA ligation this morning was successful. A surgeon from UM came in and was in and out in about 10 minutes. I won't attempt an explanation myself. He is doing surprisingly well by all accounts, best exemplified by his respiratory which has not wavered. He will probaby have a tough weekend as he recovers, and ups and downs are expected. Thank you all for the continued support in all the various ways. Prayers have been received. I'll post later with pics as time allows. Pace, Bill

Ligation tomorrow

No new pictures today, just an update. After Xavi's weekly echocardiogram (ultrasound of the heart), the doctors came to the consensus that he does need to have the duct outside of his heart surgically closed. He had two rounds of medication and that helped make the duct smaller, but it didn't finish the job. After a week on CPAP, Xavi is still doing well, but is having to work harder and his lungs are more wet (from the blood that flows back to his lungs through that open duct instead of back out to the rest of his body) and he is more tired and still has no reserve to tolerate any extra stimulation.

All of these factors, combined with a slightly enlarged heart, made a convincing case for doing the ligation. A surgeon from U of M will come to St. Joe's tomorrow and do the surgery at 7:30 a.m. Xavi will have to go back on the vent and it may be some days before he's strong enough to come off it again. He'll likely look and act more sick for the next few days as he recovers from the surgery, but once he recovers he should be able to do much better. Camilla had the same surgery and improved by leaps and bounds afterwards. Other parents and all of the nurses and doctors have said the same too: the ligation can be the big hurdle for these little ones, and once they are over it they really take off.

Thanks in advance for all of your prayers for Xavi and the surgical team tomorrow. We'll let you know how it goes.

Eva's 6th Zero

We celebrated Eva's sixth Zero day on January 21. After she was born, we were counting up the weeks to get to 40--full term--and to her homecoming. We were looking so forward to her due date because we would, in a sense, be reaching zero and then we could start counting her age forward from there. Our friends in Florence and my mom helped us throw Eva's first zero party on that January 21, complete with a sparkly pink 0 candle.  We've continued the tradition with all the girls of celebrating both their due dates and their birthdays, helping us to remember and be grateful for how far each one has come.

Hello CPAP

Strangely, the CPAP apparatus looks worse to me than the ventilator. However, though it hides more of him and may look worse, this is a major step ahead for him and his lungs. This was a very sweet day. We spent a long time in touch.

Goodbye ventilator

He's off! This is one of the last days Xavi was on the ventilator. This past Thursday, Jan. 17, after 24 days on the vent, the doctors and nurse practitioners decided that he was ready for the next step. They pulled out his tube and put him on CPAP, the next step down in breathing support. This is a huge step for Xavi, and so far, so good!

A Christmas Surprise

Of all the scenarios I could have imagined about this pregnancy, it never occurred to me that Xavier might actually arrive earlier than any of the girls. I knew we wouldn't make it to his due date, April 9, but I was feeling hopefully confident that he would go at least as far as Anastasia, perhaps even further! Maybe we could even skip the NICU entirely this time! Well...that was not to be.

Thankfully, Xavier did give us a heads-up that he might be making his move. We went to the hospital early Saturday morning, December 22, with Xavier at just 24 weeks and 4 days gestation (full term is 40 weeks), and I stayed through the afternoon of Christmas Eve. That gave enough time to stop my contractions and to receive the full course of steroids to help Xavier's lungs should he decide to make an early break for it.

Bill drove me home through the peaceful snowfall on Christmas Eve afternoon. All was quiet inside and outside. And then just as the girls were going to bed, the contractions began again. It became apparent that I was not going to be able to sleep through them. As soon as Bill finished wrapping the rest of the presents and came upstairs to bed, it became apparent that he was not going to sleep through them either. We arrived at the hospital at 3:30 a.m., and Xavier was born by c-section at 5:45 on Christmas morning, just arrived at 25 weeks.

For comparison:

Eva: 27 wks, 1 day; 2 lbs 4 oz; 14"
Camilla: 28 wks; 2 lbs 14 oz; 15.4"
Anastasia: 34 wks; 5 lbs 5 oz; 19"
Xavier: 25 wks; 2 lbs 1 oz; 13.6"

So...we've got a long road ahead of us. Though we've had plenty of preemie experience, in some ways this is entirely new. Though Xavi was almost as big as Eva when he was born, those two+ extra weeks in utero that she had make a world of difference. The ventilator is one of the main differences. None of the girls needed to be on the vent, but as of this writing, just over 3 weeks after he was born, he's still on it. He also had an intra-ventricular hemorrhage the day after he was born, another new and major challenge. He also still has an open duct outside of his heart (Eva's closed with medication, but Camilla had to have hers surgically closed), and the jury is still out about whether they'll have to do anything about his or not. If things go well, he'll likely remain in the NICU until his due date, April 9.

Though there are many challenges, there are more joys. We have lots of small victories to celebrate every day. He is making good progress in getting off the vent, and he is digesting well (he is getting small amounts of milk through his feeding tube every 3 hours). Though most preemies his age are born with their eyes still fused shut, his have been open since his birth, and he has awake and very alert periods of time every day, by which he's making his personality known. He is gaining strength and size every day, and he is beautiful.

The other great thing to report is how peaceful everything has been. We know how much God is with us and how much love and how many prayers are strengthening us. A great part of that provision and strength is that my sister Claire is with us for the next few months to help take care of the girls. Knowing that I would be on a significant amount of bedrest after Christmas, we had arranged that ahead of time, and so she was here and able to step in as soon as Xavi was born. The girls still ask with wide eyes, "We get to see Claire again tomorrow?"They can't believe their good fortune, and I can't either.

Here is the first time I got to hold him, which was about 10 days after he was born.

Size perspective

Here is the little man at abou one week old. Sometimes it's hard to tell how big or small he really is...

until you see him in relation to someone else.

First meeting

We took the girls to meet Xavier for the first time just about a week after he was born. They were finally feeling better and we could see they were missing Xavi too. Though they didn't say much, they were happy to meet him. 

Xavi and the Snoedel

You may remember the snoedel from Camilla's days. "Snoedel" means snuggle in Dutch, and these special super-soft blankies are made by a local 4-H group. The center is made of soft and absorbent lama's wool, and the outside is covered in flannel. I wore the snoedel next to my skin so that it absorbed my scent and then the nurses put it in with Xavi to comfort him while I'm not there. This was an especially sweet day, coming in to find Xavi cuddled up with the snoedel like this. 

Visit to the Dinosaur Museum

Bill had off the week of Christmas and, very fortunately, had already arranged to take the week of New Year's off as well. When Xavi was about 10 days old and the girls were finally all feeling better, we went to the U of M Museum of Natural History for the first time.

And a leap forward to the present

Making a two year leap ahead from the last post to where we are today...These pictures are from our celebration of the feast of St. Lucy, December 13. (It was also, incidentally, the same day that both Anastasia and Camilla kicked the pacifier habit for good. These happy pictures were before they knew that the binkies were gone for good. Actually, it turned out to be an almost non-event. Almost. :)