Together

What an amazing day - after 3 weeks in the NICU we finally got to hold our baby!  Well, I did while Daddy watched, talked to him, and took some pictures.  We were both hesitant to try unless everyone assured us it would be good for Ben, because he just doesn't handle any disturbance very well, but he did beautifully.  He slept on my chest skin-to-skin for over 2 hours today and had fewer alarms going off than he usually does in his incubator and his temperature stayed steady.  It was as if Ben remembered how comforting it was to be with mom and he relaxed and seemed to enjoy it, which raised my spirits tremendously.  It was the first time we got to be together as a little family without any barriers between us and it was good for all of us.

 

At the same time, we witnessed a priest praying over another baby just a few beds down that was having serious problems.  We had talked to her parents several times and it was really heartbreaking to see their 3-day old baby (whose start in life was very similar to Ben's) taking a turn for the worse.  We are parying that we find her doing much better when we go back tomorrow.  It reminded us of how fragile all of these babies are and how grateful we should be for every good day they have.

Overall, Ben had a very good third week with the exception of his lungs.  They are just very immature and struggling to keep up with his needs but we hope that given time they'll catch up and be fully functional.  As long as Ben remains stable and keeps gaining weight (he's already up to 2 lbs, 2 ounces) his lungs should have a chance to improve.  Maybe hanging out with his mom and dad will help, too!

Thank you all for your encouraging messages and emails.  We didn't realize that so many people had been sending emails to Matt's account linked to this webpage, so please forgive us for taking so long to respond!  Matt hasn't checked it frequently in the past and we found quite a few messages yesterday that date back to Ben's birthday.  We'll be better about corresponding from now on :)

Perspective

Mama is doing well and looking terrific; we're going to the doctor tomorrow and hopefully she will be allowed to drive afterwards (watch out!!)

Ben now weighs 2 lbs 1 oz.  The doctors and nurses continue to focus on his severe lung condition.  He really likes laying on his stomach and becomes rebellious when in a different position. Yesterday he got a neighbor (21 week preemie) that weighs less than a pound.  His neighbor makes Ben look like a giant.

Looking Around

Another milestone today!  Matt and I had been in the NICU for a few hours when suddenly Ben turned towards Matt and OPENED HIS EYES!!  We'd watched him try so hard to open those tiny eyelids for a few days that we knew it could happen anytime and it was so exciting to be standing there with him when he finally did it.  I posted a few pictures but we'll try to get some better ones soon.  It's a small accomplishment in the grand scheme of things but we were so proud of our little guy.

 

He no longer has any IV's, just a ventilator and a feeding tube in his mouth, so we're hoping that one day soon we'll be able to start holding him.  Skin-to-skin contact (also called kangaroo care) is supposed to be very therapeutic for preemies and it just involves holding the baby directly against mom or dad's chest for an hour or two.  He'll get heat from our bodies and hopefully begin to recognize us by our voices, smells, and heartbeats.

Ben's lungs looked a tiny bit better today and his oxygen saturation was definitely better.  Ben looked so happy stretched out on his stomach and responded very well to our touch and his photo session.  It makes us feel good seeing our baby boy look so content.

Goodbye, PICC

Ben will reach his first big milestone tonight - he will be receiving full feeds of milk from now on so he no longer needs a central line (the PICC line) or the fortified saline.  Every doctor or nurse that walked by us today siad it was such a good step to be removing the PICC line, not only becase his risk of infection will decrease, but also because the more milk Ben's receiving the bigger and healthier he'll (hopefully) grow.  Over the new few weeks we just want him to remain stable and content while he puts on some weight and his body matures, especially his lungs.  In several weeks the doctor will revisit the idea of taking him off the ventilator as he appears ready.

Ben did have his first bath two nights ago - not a dunk, more of a sponge bath.  He still has a lot of dry skin from the phototherapy light and I would just love to introduce him to lotion and chap stick, but I don't think he's ready for those yet.  He still refuses to sleep on his side and will always roll as much as he can onto his back, although we found that he absolutely loves sleeping on his stomach and he looks precious in that position.

We know the Lord has been holding our little Ben in His hands for him to have done so well these past two weeks, but we ask that you continue to pray for him.  Mostly that he will remain stable and infection-free and that his little body will grow in health and strength.  It's so encouraging to know that "the prayer of a righteous man is powerful and effective".  James 5:16

Good Day

Ben had another good day today...no major changes.  We did finally find out he's 13 inches now (there was no measurement at birth) and weighs 1 pound, 13 ounces.  He's gained over 3 ounces since birth which is great news.  The doctor went up on his feedings again today since he's still responding very well to the milk, meaning he's getting less saline with added nutrients (TPN)  by the day.  Everything he needs is in the milk and it should be much easier for him to digest since it also contains enzymes his gut is lacking right now.

We can't believe he's already two weeks old!  Please keep praying for our little guy because he still has many more weeks and several pounds to gain before we can bring him home.  We know God has been watching over Ben for him to have done so well already and we hope he continues to grow in health. 

Eating

Ben is eating like a champ!  A tiny little champ, that is.  They've doubled his feedings and he's finally starting to put on some weight a few grams at a time.  He's also getting more hydrated so he's looking more like a little baby and less like a wrinkled old man every day.

There haven't been any other major change the past few days, he's just been stable and looking better by the day.  He slpet on his somach for the first time last night and appeared to love it, then the nurse tried to put him on his side this mornign and he immediately wiggled onto his back again.

Matt and I have said over and over how fortunate we are to live so close to the Texas Medical Center, only we'd always hoped we'd never need it.  Now that we do, we can't say enough good things about Texas Children's and it's staff.  We've already met some great doctors, nurses, and nurse practitioners that have really helped us adjust and trust that our baby is in the best hands in the world.

Matt's wedding ring on Ben's tiny hand and arm

Stable

Ben's had a stable week so far and has looked more content and relaxed than ever before.  He's been fed milk regularly for two days and his digestive system appears to be fully functional now.  There has not been any change in his lung function, which isn't really good news but it's not bad news, either.  Staying on the ventilator is causing excess fluid in his lungs, which decreases his lung function, which in turn causes him to be more dependent on the ventilator.  It's going to be a tough cycle to break but there are no alternatives to the ventilator at his age so it's a problem most early preemies face.

Today Ben moved from an open bed into an enclosed bed to give him a little more peace and quiet.  He has a great location in the NICU, a corner away from outside noises and with very few people walking past, but apparently he still didn't like the action around him.  Hopefully he'll be happy in this new bed.

It is amazing to watch the changes that have taken place just in the past week.  Ben's already developing some dark hair on his head that was not there last week.  He's becoming a little more comfortable with our touch and today he held onto Matt's fingers for quite a while.  Any day now his eyes should open so we'll get a real look at his little face.  Although we'd prefer him to still be happily in the womb right now, it really is amazing to watch such a perfect little person grow.  God has truly given us a tiny miracle!