Excuse Us, Did We Hear You Correctly?
Greetings to everyone.
Today's events went something like this. Rebecca and I arrived at the NICU for our Discharge Class, a one-hour training session on how to handle our preemie at home. The class covered CPR, managing choking, crib safety, bottle safety, baby-proofing the house and several other items. In the class were representatives from the Parents' Advisory Board. This board is made up of parents whose children have come through the NICU and they help advise the NICU on how to improve their service and make things better for the parents who come after them. The three ladies in attendance this morning were a wealth of information. My only suggestion to them was "where are the husbands?" They did say they had a "token man" on the board, but he couldn't make today's meeting. Apparently, my suggestion volunteered me for the position, and I may take it!
After the class we visited Xavier. As we approached his pod, Valerie (who cared for him once early on) greeted us with "I hear you're leaving us Monday."
The announcement stunned us. It was a train that came out of nowhere and it took several hours for Rebecca and I to recover from the shock. Just Friday (yesterday), Allison told us it would be between 1700 and 1800 grams and was unlikely to be next week. What happened?
A new doctor rotated into the NICU today, that's what! Plus, Xavier in his desire to go home, put on 60 grams and is now at 1685 grams (3 lb, 11.4 oz). I guess the new doctor thought that was close enough.
Xavier must pass two more tests: 1) his "room air" test; and 2) his car seat challenge. The room air test is a test where his oxygen tube is removed for :40 minutes and he must not desat or have any Bradys. This will happen tonight.
The car seat challenge, though he keeps is oxygen tube, he must do well sitting in his car seat for :90 minutes. We are hoping to have this test tomorrow.
Rebecca is going to Wyoming Sunday morning to participate in a change of command at the Wyoming ANG and to celebrate the retirement of the current wing commander, Col. White. The plan is for her to spend the night in Wyoming and return Monday.
Monday, I had hoped to schedule some time with my manager to work out how best to support the client in Arizona with the new release of software they are testing (the release for which I am the primary developer) when Xavier comes home. I announced my intent to take a few days off, but at the time I thought it would be a week or so out at least.
Needless to say, Val's announcement caused us to fast-track several things! It is exciting Xavier is mere hours away from being home! And, as with everything else revolving around Xavier, we find ourselves on a compressed time schedule which has ambushed us. (I originally wrote it snuck up on us, but Rebecca strongly disliked that term. "There was no sneaking," she contended)
Rejoice with us, Xavier is coming home! Thank you for your prayers, they have made this day sooner than expected. Awesome is our God!
This is Xavier's discharge worksheet. Though not yet physically checked off, several items have already been achieved.
It's A Race
Hello friends and family!
Today, Xavier has reached 1625 grams, that's 3 pounds, 9.3 ounces!
Yesterday, Xavier (unknown to anyone) decided to give himself a practice "room air test." He pulled his oxygen tube completely off and for :20 minutes or so breathed room air in his open pod. Rebecca was the one who noticed his disconnect from his oxygen. No alarms sounded, no bradys and no desats during this time. In fact, he was hi-satting the whole time. Hallelujah!
Dr. Liz mentioned in rounds today that Xavier should be able to go home when he reaches (some undefined weight) between 1700 and 1800 grams (3 lb, 11 oz to 3 lb, 15.5 oz). Glory to God! And a little scary as well. Xavier is only 75 grams shy of the minimum. Now, it's a race. Will he reach 4 pounds first and we can use our newly purchased car seat to carry him, or will we have to scramble and overnight a car bed to us.
If we do need a car bed, it will not be for long. We can donate the bed to either Children's or (our preference) to the NICU. There are three preemies under four pounds ("peanuts" as our case worker calls them) waiting to go home about the same time. The NICU only has two car beds to loan out, and they are currently loaned out. It would be nice to sow something back in the NICU.
An event occurred today that shows how involved in the details of Xavier's development we have been. When Rebecca went to put Xavier back in his isolet, while managing all the wires and tubes, she bumped Xavier. While he loudly let the world know about his discomfort. Rebecca's first thought was not, "Oh, baby, I'm sorry you're hurt." Instead, it was "Thank God he is developed enough to feel, recognize and react to pain."
Thank you all for your prayers. Great and mighty is our God!
Here Xavier is practicing another going home skill. He is inside a preemie-sized sleep sack. The purpose of this item is to keep him on his back and safely immobile while in a crib. It's essentially a baby straight jacket, only more comfortable.
Xavier close up. The red modeling is from his recent immersion bath. We used his little scalp brush to exfoliate his head. He is also recovering from his first round of inoculations, three shots given, two at the same time so he only knew two moments of discomfort. Of course, he was loaded up on sugar.
The Goodness of God
Greetings to everyone.
Today is Xavier's 61st day of life out of the womb. As mentioned earlier, we first saw Xavier via ultrasound at 61 days and Rebecca was checked into the hospital the last time 61 days after her first check in on March 12th.
There is a hymn called "When Upon Life’s Billows You Are Tempest Tossed". The words are:
When upon life’s billows you are tempest tossed,
When you are discouraged, thinking all is lost,
Count your many blessings name them one by one,
And it will surprise you what the Lord hath done.
Count your blessings, name them one by one;
Count your blessings, see what God hath done;
Count your blessings, name them one by one,
And it will surprise you what the Lord hath done.
Are you ever burdened with a load of care?
Does the cross seem heavy you are called to bear?
Count your many blessings, every doubt will fly,
And you will be singing as the days go by.
When you look at others with their lands and gold,
Think that Christ has promised you His wealth untold.
Count your many blessings, money cannot buy
Your reward in heaven, nor your Lord on high.
So amid the conflict, whether great or small,
Do not be discouraged, God is over all;
Count your many blessings, angels will attend,
Help and comfort give you to your journey’s end.
I have wanted for a while to review how good the Hand of God has been to us as we have walked through this life event. There is no way I can list His blessings to us one by one, but here are a few.
Thinking where to start, I had many points to choose from. I decided to start with the young woman we met in Cambodia who was so greatly concerned for Rebecca and I at being so old and having no children. She told us "Remember Abraham and Sarah were old too. I'll pray for you!"
While in Rome last year, out of the blue a strong sense of peace, comfort and "rightness" swept over me and I thought "I would OK with having a child." A week later we learned Rebecca was several weeks pregnant.
In February it was determined during an ultrasound exam that Xavier was growth restricted and the perinatal doctor of 20 years, well-spoken and a leader in the field, was highly skeptical of Xavier's chances for survival. She asked "Is termination an option for you?" Of course it's not an option for us! Xavier defied the common wisdom of man and survived.
March 12th was a standard ultrasound exam. Only at the end as we neared leaving did randomly we mention Rebecca's high blood pressure. This statement turned to a blessing in a (very) deep disguise which led to giving Xavier another eleven weeks inside the womb.
When admitted to the hospital, it was expected that Xavier would be delivered that night and put in hospice. A night turned into a week, and a week into five. We had a perinatal specialist on our case who had only been at the hospital ten weeks before we checked in, his expertise was in exactly what we needed. He had worked with mothers having Rebecca's symptoms for years and had far more experience than the doctors here in Colorado. He helped silence the voices of fear from other doctors, who had not seen anyone like Rebecca before.
We transferred to a world-class hospital which housed some of the best baby doctors in the country. We were surrounded by experts who, confused by what they could not explain, continued to give our case great attention. One doctor proudly told us "Your baby continues to prove me wrong!"
Talk and signs of genetic abnormalities, some quite grizzly, abounded during the first five weeks of hospital stay. Not one of them turned out true.
"Your baby is sick," we were told during and early NST exam, and a pall fell over us. Then, in the silence of the settling depression, the monitor blipped and the same doctor with the dire news smiled. With an almost giggle, she explained the blip was a hiccup and showed Xavier's nervous system was developing well. After, she reviewed Xavier's NST histories, then told us he was not so sick after all.
Though Xavier had low levels of amniotic fluid throughout the pregnancy, he always had enough and always in the places he needed it when he needed it. This was especially true during the key time of his lung formation.
We heard weekly that Rebecca would go pre-exclampsic. She did, but eleven weeks beyond what was expected. As the high-risk doctor told us the day after Xavier was delivered: "You carried the baby up to the last possible minute" and "we did all the right things." This going to the last possible minute allowed Xavier to develop all he needed to strongly survive outside the womb.
A few days before Xavier was delivered, Rebecca was checked back into the hospital. This was, at the time, a major kick to our morale. We were expecting and wanting mid June, not the beginning of May. As it turns out, had we not been in the hospital, Rebecca and Xavier may well have died. None of the pre-eclampsic symptoms we were taught to look for ever occurred. We never would have recognized the danger Rebecca was in.
When Xavier was delivered, he squirmed and he screamed loudly. His scream was not one of discomfort, but one of being disturbed, as if he were telling us "What are you people doing? I'm fine." The doctors were very concerned about his lungs, but he let them know immediately they were working well! He was perfectly formed. He was brought forth after all his critical development had happened within the womb. Even his intestinal tract, which the doctors had concerns did not form well and may turn necrotic, worked well. His liver needed to mature more, but even it continued to develop.
He took to his mother's breast and to the bottle so well, the nurses and therapists could hardly believe it and they praised his quick-learned skill.
Throughout all of this, and especially in the face of the medical professionals who hammered us constantly with negative after negative, both Rebecca and I held on to the constant, deep-seated peace, the assurance from Father His hand was mightier than the forces of fear.
So many people stood with us in support, both in physical and emotional support, and in the most important support: prayer! We were blessed with people offering aid and prayer from all over the country and from all over the cities of Denver and Fort Collins.
So, how is Xavier today? He broke the 1600 gram milestone and is at 1615 grams (3 pounds and 8.9 oz), nearly two pounds more than his delivery weight.
Having crossed the 1600 gram milestone, his pod dome is once more raised to let him fully regulate his temperature.
He eats from the breast and bottle like a champion. He is down to 0.01 liters/min oxygen through a low-flow system and is hi-satting more often than he desats, the majority of the time his oxygen level is 94 and above. This morning he managed to pull his cannula out and no one noticed for some time. He was breathing room air without desatting or bradying.
His direct bilirubin level is 2.4, still high, is much improved (Father has not led us this far to abandon us now. It will get to normal values!). Dr. Liz went "dumpster diving" today to get his diaper. She has not seen one of his stools this rotation. She was pleased as punch with the color and could not stop talking about it and what it means. She spoke of how proud she was of Xavier and impressed.
Great is the power of our God! Great are His mercies! Great is His love toward us! Great and mighty is He to those who seek Him and trust in Him!
To those who have prayed for us during this time, the miracles and goodness I but touched upon above, you had a part in praying them into this world. You helped carry Rebecca and me when we were too exhausted to carry ourselves. Always, and with heart-felt gratefulness, we thank you for your prayers and support.