Gilead

Gilead's doctor's appointment was today, and it went very well. Gilead's growth and development continues to be amazing. I don't think I'm just a proud mama - the doctors seem to be surprised too. He weighs 5 pounds, 5 ounces now. He's surpassed his birth weight by the time they expected him just to begin re-gaining weight from his low of 4 pounds 9 ounces. The doctor commented that his muscle strength was especially good even for a term baby.

We have been blessed with the "real deal" (breast milk). There is a system here in Colorado through which breast milk can be donated to babies who can't get it from their moms, and we considered using that. Another mom we met in the NICU told us she would like to give us her large supply of frozen milk, if we would be willing to take it. After a nurse in the NICU privately encouraged me to bypass the donor milk bank and the pasteurization process, and after private conversation with the other mom, we felt more than blessed to accept her offer. Gilead takes it so much better than the high-calorie formula he had been prescribed, and he doesn't spit it up (the formula came back up a lot). I think this is one reason his growth has surpassed expectations.

I keep hearing of more and more people, truly all over the world, who have prayed for us. People on every continent (except Antarctica of course) have emailed us with encouragement. Thanks to each one of you. God has more than answered our prayers. Our faith has been reinforced in a huge way. And without our faith in God, I don't know what we would have done in the past months.

My next chemo is on Friday. I've gotten over the side effects of the last one, and I hope they won't be accumulative. It was definitely more unpleasant than the other chemo I had.

Flu

Jon has been sick since my treatment on Thursday. At first we assumed it was sympathy sickness - he has a habit of feeling sick on my behalf, and has been very faithful about it with each round of chemo so far. But he just got worse as the weekend went on, and today he spent the day in bed running a fever and feeling rotten. This looks like the classic flu to me - fever, aches, congestion, etc. I want him to be feeling miraculously better by tomorrow - it's his birthday. I would also appreciate prayer for Gilead and for me since neither of us is supposed to be super resistant to bugs right now.

Yesterday was an uncomfortable day for me. The shot that follows the Taxol hit me pretty hard, but I did find that being up and about didn't make me feel any worse. It helped to distract me. Friends came over for a short visit after church, and we had a great time. Today I've felt much better. I keep having the sensation of a spinal block in my back, but that's been the worst of it. (That feeling is still pretty fresh in my memory.)

Chemo #6 - Back to the Grind

Yesterday was my first treatment with Taxol. It went well, I think. One of the pre-treatments is a pretty heavy dose of Benadryl, and it pretty much knocked me out. I slept during almost the whole treatment. The potential side effects of Taxol are numerous, but the most common ones are flu-like symptoms.

Jon took a little lesson in how to give me my follow-up shot, so he gave that to me today. This shot is to boost white blood cell production so that I can have treatments every two weeks instead of every three. I'll be glad to get done sooner if I can sustain the compressed treatments. The shot has it's own set of side effects, which also include flu-like symptoms. I'm doing pretty well with that so far too. I am a little sore, and my stomach has been a little edgy, but I've been surprised at how well I feel.

Gilead continues to do very well. He's eating more and still sleeping well. He woke up just enough to tell my parents goodbye this evening. I was sad to see them go, and very glad that they were able to be here for the last two weeks. They've been such a help.

What's In a Name

Jon said in an earlier post that I would explain Gilead's name. We truly didn't settle on a name until hours before he was born. We had talked about many, many different names (remember Bruce Lansky's Mother of all Baby Name Books?). We chose Gilead because of its meaning (monument of testimony - what better testimony to God's love and care for us than this little boy) and also because of the way it is referred to in the Bible. A lot of bad things happened in the land of Gilead, but there are also passages in which God makes it clear that the area called Gilead has a very special place in his heart. I liked it because it's not common and no one else in our large extended families has used it yet. I also love the way it sounds.

Victor seemed like an obvious choice for a middle name. We settled on that part weeks ago. So now it's all official.

I have no way to respond to individual comments on my posts, but I want to let you all know how much it means to know that many, many of you have been thinking about us.

Home Again, Home Again, Jiggity Jig

Quick update to let everyone know Gilead is home! He was released yesterday a little after noon. The doctors and nurses commented that they were surprised that he was able to go home so soon. I'm very thankful that we won't need to juggle the NICU and chemotherapy. The kids love him, and everyone is so thrilled to have another baby in our house.

Going Well

Gilead is continuing to do well. We bring our car seat into the NICU tonight so they can do a required test to make sure that sitting in the seat won't interfere with his breathing. He'll be in the seat for nearly 2 hours for the test. Tomorrow he has some other procedures done, and if those don't knock him back a few steps, the doctor said he may be able to go home on Sunday or Monday. There are still plenty of little details that could delay that, but it's good to have a tentative home coming date.

My chemo resumes on Thursday. I'm glad Gilead will probably be home by then.

From St. Joe's

I'm officially discharged, but still at the hospital waiting feed Gilead for my last time today. He is getting phototherapy for jaundice right now, and the doctor hopes he will be doing well enough to turn off the lights tomorrow. He just ate 40 ml - 5 ml more than he is required to eat. That's the second feeding in a row he's eaten what he's required to, so the IV tube with supplemental "stuff" was removed! Some of you have had babies in the NICU, so you know how much every milliliter counts and what a joy it is each time another cord is taken off. We get so tangled in those things every time we take him out of his little crib.

Your comments have been very special. I've been amazed at how many people are caring and praying for us. Thank you, thank you, thank you.

Progressing

What a beautiful day!
Your prayers are truly being answered and we are incredibly privileged to experience and watch first hand the gracious gifts of our Father.
Yesterday, Gilead demonstrated a voracious appetite and already knows when he is working for nothing. He wakes up hungry on time (I see the need for a raise coming). He kept all of his food down and voided properly – that tremendously helps the bilirubin counts. So far he is not under the light. They increased his feeding amounts in the night and plan to triple them from yesterday’s amounts today. If he does well with that the IV will come off sometime today, and then they will want to see him regain his birth weight. We couldn’t be more pleased with his progress.
Amy will be discharged sometime today – that will at least mean that she gets to spend nights at home, but will spend the day at St. Joe’s trying to nurse and encourage Gilead through his growth.
We did find a computer in the family room at the hospital so Amy got to catch up on your notes and comments yesterday, what a blessing! I expect that she will probably post a note with her perspective and the progress of the day a little later.
The changes ate coming so quickly (as always in these first few days) that I ought to get a new picture on here – maybe after church tonight???

More miracles

Good morning friends,
You really make the start of my day special. I sit here and read your kind notes and expressions and then cry my way through the pictures again and marvel with the question - why has God been so good to me?
Just a quick update. Gilead spent fewer than 24 hours with breathing help. He is already breathing just fine on his own and the vitals are great! He has also figured out the sucking thing very quickly. The question that remains is if there will be the strength, and coordination once Amy's milk comes in to suck, swallow, and breathe at the same time. Another common issue is the ability to keep food down. Right now he is still on an IV with glucose.
Another minor concern is that the bilirubin counts are going up - that would indicate some jaundice and might need a little time under the "bright light"unless they stabilize or better yet go back down. We should know that by today.
Amy is doing great - up and around, of course there is some of the post-op discomfort, but so far she has handled that without narcotics, just the Motrin.
It is a great blessing to have my parents-in-law here, so I can spend the day w/ Amy, then have them bring the kids by for a visit before we switch. we enjoyed our time together yesterday.
Amy probably could have come home last night or at least by this morning, but they are keeping her as long as possible to make being close to Gilead easier. I am also sure that she is resting more there. She has slept very well at night - probably better than me... but I am not the one recovering so good for her.

See you again soon,
Jon

Here I am

Here he is

All right, I know many of you are praying and anxiously awaiting this announcement. Thank you so much for being patient with me. This has been a wonderful day so full of little exciting things and miracles - some of them not so little. Here are the vital stats. Gilead Victor arrived at 9:06 AM MDT. He had a healthy voice - why can't we get rid of that genetic trait? Amy was a little disappointed that he was so big - she was looking forward to finally having a baby that might fit newborn socks. He was 18.25 inches long and weighed in at 5 lbs. 2 oz., that was an exciting answer to many prayers. His feet are 3" long and he has the typical long fingers of our brood.

The blood tests were great and he seems to be doing well on the blow by air - all the vital signs are rapidly adjusting toward normal ranges. The biggest hurdle at this point seems to be developing the ability to eat (suck on a bottle) for himself. Late this evening however he seemed to respond to stimulation and try with the pacifier so that was cause to rejoice.

Amy is amazing us all and has already been out of bed, has progressed through liquids to some solid food, and of course is dying to be down in NICU w/ her little treasure. I will let her explain the name and tell her side before too long.

The siblings are doing well and all enjoyed getting to meet the new brother - each in their own way and with their own unique responses. That is fun to watch.

Me? I am overwhelmed by God's love and care for us, by you and your prayers and love, by all the little miracles and joys of the day (and at the prospect of trying to get pictures onto this thing).

There are the basics - now for the pictures???

Jon

On Our Way

We're just about to head out the door. Last night was restful, and we're looking forward to meeting our little boy. He does have a name now. Jon will fill you all in later.

We've received so many well-wishes from so many people - high school friends, college friends, church friends, family on several continents, people we've never met but who've gotten in touch with us through this situation. Thank you to each one. Your thoughts mean a lot to me and Jon.

Jon says maybe he'll post later today. He can be ornery like that.

Big Boy

A quick note before we head off to church this evening. I had visits with both OBs today. The final ultrasound estimated the baby's weight at 4 pounds, 14 ounces. The estimate is based on the measurements of his head, abdomen, and limbs, so it's supposed to be pretty close. He may be 5 pounds after all!

Countdown

Just a few days to go before our little (still unnamed) boy arrives. We've been down to the wire with names before. We'll have picked one by Sunday.

I have already had my steroid shots. The OBs decided to do them a week early to give them more time to work. Now I know why baseball players take those things. I felt so energetic after the first shot, I just kept going and going. I couldn't sleep that night, but I felt good. I ended up listening to Jim Berg's Quieting a Noisy Soul on my iPod for several hours during the night and finally went to sleep around 5 a.m. I was tired the next day, but had another shot, and my energy picked back up again. Over the next two days, I cleaned some of our carpets, took Cara shopping for her 12th birthday, fussed at the family for making the house a mess, stayed up til 2:00 a.m., took Nathan out for his 9th birthday, and made lots of plans for this week. Yesterday, however, was different. I was very touchy, very on-edge. One of my friends at church asked me if I had begun having the side effects of steroids wearing off yet. So I guess the answer to that would be "yes". I wasn't aware of the varying side effects of steroids, but now I know a little about them first hand, and I'm glad that part is done.

I've been complaining to Jon that my brain isn't working just right. I've been frustrated at being so ridiculously forgetful. But I really outdid myself last week. I had to call the OB's office for the phone number of another doctor. The nurse gave me the number, I wrote it down, and called right away. The line was busy, so I called back a few minutes later. It was still busy. I thought it was really strange, after three of four tries, that the phone in a doctor's office would stay busy for so long - surely they must have more than one line. I was dialing the number again when I suddenly realized that the nurse had given me my own phone number, and I hadn't even realized it. I was calling myself. It's a good thing we don't have call waiting.