After a frustrating lack of success, the doctors decided to quit trying to get Samantha off the oxygen. Instead, they began working on getting her home. Their decision to turn up her oxygen to 100% was what she needed. She began eating well and her color improved. At last, she was ready to leave the NICU.
Children's Hospital sent out the oxygen guy to train us and scare us to death. There is so much to remember and to worry about--no flames, no gas, no alcohol, no petroleum jelly, no sparks. We thought it was crazy around here before! Per Children's suggestion, we notified the fire department/medic team that a preemie infant on oxygen was coming home so they would be prepared.
Samantha wasn't. She loved the car ride and settled in next to her brothers and sisters as if they had never been apart. The prayers of God's people are continuing to make an impact on her life in so many ways. God is working out His plan.
When we got back, we sat around holding babies and remembering how close we came to losing Samantha. She is a miracle of God's loving care.
As long as I live,I will never forget what He did on her behalf, nor will I forget all the amazing people who asked God to help us. Incredible!
I'd say she looks glad to be home. I am not sure how she knows, but she does.
Tony was put to work at midnight on the day he was no longer quarantined. He's still smiling.
Thank you so very much for praying, from the bottom of our hearts.
Give thanks to the LORD and proclaim his greatness. Let the whole world know what he has done. Sing to him; yes, sing his praises. Tell everyone about his miracles.
1 Chronicles 16:8-9
Sunday, September 26, 2010
Thanks for praying.
Let us therefore come boldly unto the throne of grace, that we may obtain mercy, and find grace to help in time of need.
Posted by Sondra at 12:42 AM
Thursday, September 23, 2010
I love good news! The doctors are happy and relieved to report that Samantha does NOT have a brain bleed, the large hole in her heart has closed on its own without medicine, and the small hole is expected to close as well. We are amazed and incredibly thankful for God's care and for everyone who is praying!
The resident and nurses finally explained more about Samantha's condition. Either they are just now figuring it out themselves, or I am learning to ask the right questions.
First-- once a preemie, always a preemie. Prematurity is a medical condition that stays with an individual for life. Complications of prematurity can show up for years, with some waiting until kindergarten to reveal themselves. Rather than frighten us with all of the possibilities, they prefer to eliminate the ones they can before the baby is discharged from the NICU.
Second-- it not unusual for a sick preemie to have one blood transfusion, but it IS unusual to have two. When that happens, they try to determine where the blood is going, ergo the brain test.
Third--it is not unusual for higher order multiples to have one baby that does poorly. The mother's body is stretched in more ways than one, so not everyone gets the same nutrients or antibodies. It IS unusual for quads to be carried for 33 weeks, to have 3 to 4 lb. birth weights, to come home in two weeks, and for the boys to do better than the girls. Sarah's experience is not typical; it is incredible.
Fourth--preemies that have Respiratory Distress Syndrome have lung disease, usually with scarring. Infections and oxygen after 36 weeks often leads to Bronchopulmonary Dysplasia or BPD. Samantha is 37 weeks and is requiring more oxygen instead of less. They are giving her heart medicine (diuretic) to see if that reduces her need for oxygen.
After being on oxygen therapy for a long time, BPD babies don't eat well. Samantha still has to be gavaged by feeding tube, although she took charge of her own health care and removed the tube herself yesterday. She needs to grow, but taking a bottle wears her out.
Samantha is more aware of being alone now. She cries a lot.
When I fed her, she took the whole bottle, and would probably have eaten more if it had been available. I can't wait to get her home, oxygen or not. Her lack of improvement is getting discouraging.
When I was little, my grandma told me I could count on God to make me feel better, no matter what. She said, "Honey, you need to ask God to help you whenever you need it." As time passed, I learned to be honest with God, telling Him if I felt hopeless, discouraged or alone.
One day, I asked God to remind me of His love in an unusual way. I asked Him to let me see a wild turkey. (I had never seen one before. I wasn't even sure what it would look like, so I looked it up. I was young. Give me a break.)
Shortly afterward, I was walking down the road when a wild turkey crashed landed almost on top of me. I couldn't believe it! God honored my ridiculous request. He obviously has a sense of humor.
After we learned about the possible brain bleed, I could feel myself sinking into depression. I KNOW discouragement is the devil's best tool. I KNOW he wants me to look at the circumstances around me so I will stop looking on the unseen Hand of God at work. But I was just plain tired of worrying. I want off this ride.
It was my turn to make the long drive to the hospital. I was driving around a curve and up the hill. I had to shift gears, which annoyed me because I was sleepy.
Suddenly, something came out of the woods and startled me. I slammed on the brakes, afraid it was a deer. It wasn't. It was a large wild turkey. He walked calmly into the road, stopped, and looked at me.
He had friends. I sat and waited while a whole flock of wild turkeys walked across the road, one by one. They all looked at me at they passed. That's when I remembered my childhood prayer for encouragement. I had forgotten all about it. God hadn't.
I could almost hear them gobbling to each other as they waddled by, "There she is! She's the one that needs a turkey to remember the power of the Almighty God! Embarrassing. If it weren't for her high maintenance issues, we could be in bed already."
I drove on feeling as if God had spoken directly to me. "Sondra--I remember, I see, I care, I know, and I love you!"
Every time I have driven to the hospital this week, I have seen the turkeys. They always take their time. They always look at me, albeit somewhat irritatedly. I finally decided to take a picture so I would remember the awesome God I serve. He bottled up my childish prayer and pulled it out when I needed it. Incredible.
Last night, as I sat there waiting on the turkey parade to pass, I had to laugh. I said, "Okay, God. I'll stop now. I'm not only finished with this pity party, I'm DONE-- just like a Thanksgiving turkey."
Thanks for praying.
Posted by Sondra at 5:31 PM
Monday, September 20, 2010
Please pray for Samantha. Today, the doctors are checking her via MRI for brain bleed (can go along with that bleed out she had), echocardiogram of her heart for the two murmurs/status on hole/to see if she needs medicine, and x rays of her lungs to see about her oxygen issues.
When the resident called to tell us, Sarah sat quietly with big tears running down her checks and dropping on her shirt.
This battle that Samantha is facing has been so hard. We are not clear about her condition. The doctors give us facts but not opinions. Sometimes I wish I were a fly on the wall at their meetings. Apparently, they are not happy with her progress. We just don't know what they are thinking. Maybe it's better I don't.
Lately, I have been thinking about the true Bible account of the Israelites leaving Egypt on their journey to freedom. God tells Moses to send twelve spies into the Promised Land to check things out and develop a battle plan. These are people that have had front row seats to God's miracles. I love the Old Testament.
It is hard to believe, but ten come back with a bad report. They say, "We can't DO THIS! The enemies are giants, the kingdoms are too well fortified, and we will not be able to defeat them!" Remember this is right after they had witnessed the most incredible display of God's supernatural power that the world had ever seen. He had parted the Red Sea and sent the ten plagues to encourage Pharaoh to free His people. As soon as God sends a test, those same people doubt His power.
Now this is where the other two spies--Joshua and Caleb--come in. Numbers 13:30 tells us, "And Caleb stilled the people before Moses, and said, 'Let us go up at once, and possess it; for we are well able to overcome it.'" As a result, God tells Joshua and Caleb that they and the younger generation under 20 years of age would be the ones who would be able to go into the Promised Land because they had “wholeheartedly followed God.” They had full faith that God could defeat all of their enemies, regardless of big or scary or impossible they were. They believed God.
After all God has done for the quads, I am trying to keep a true perspective. I am thankful that Samantha is alive and doing as well as she is. I know that God has a plan for her life or she wouldn't be here in the first place. I know that God's will is what I would choose if I knew all the facts.
On the other hand, I want so much for Samantha to be well and come home. I shared that overwhelming desire with the resident, and it sounded almost as if I were pleading with her to do something. Instantly, I felt convicted. My granddaughter's life is in God's hands, and He is in control. He is working through these amazingly gifted people in the NICU, but He will direct the course of Samantha's life.
Afterward, I felt compelled to let the resident know this fact about us: "If things don't go the way we want them to, we will be okay. Our faith and God's love will see us through." It was hard to even speak the words, but they are true.
At the end of this battle, I want to be able to look back and know that I was like Caleb. I want to wholeheartedly serve the Lord all the time, not just when things are easy. Bring on those giants.
Thanks for praying.
Who shall ever separate us from Christ's love? Shall suffering and affliction and tribulation?
Even as it is written, For Thy sake we are put to death all the day long; we are regarded and counted as sheep for the slaughter.
Yet amid all these things we are more than conquerors and gain a surpassing victory through Him Who loved us.
For I am persuaded beyond doubt [I am sure]that neither
Things to come
Nor anything else in all creation will be able to separate us from the love of God which is in Christ Jesus our Lord.
Posted by Sondra at 2:00 PM
Friday, September 17, 2010
The nurses warned us that she is quite a diva, and they were right. She has discovered that she DOES have a mother. She wants Sarah to hold her all night long. Part of the problem may be that she has her days and nights mixed up. The NICU night shift is quite busy after dark--checking weights, changing clothes, baths, etc. Apparently, Baby C Bella is used to the nightlife.
We are amazed every time we remember how sick she actually was. It is a miracle to have her home at all, much less so soon.
Thanks for praying!
"This is the confidence we have in approaching God: that if we ask anything according to his will, he hears us. And if we know that he hears us - whatever we ask - we know that we have what we asked of him." (1 John 5:14-15)
Posted by Sondra at 1:13 AM
Wednesday, September 15, 2010
If Devon looks a little tired, it's because she is. No one sleeps at our house except the babies, and only two of them are here.
Sarah had a slight melt-down when the boys first came home, but she recovered quickly. We are all overwhelmed by their size. The babies are so tiny we are almost afraid to care for them. Then, there's the worry that they will get sick and end up back in the NICU or worse. I've washed and sanitized my hands so many times the skin is cracking off.
Although we prefer to feed babies on demand, we decided to follow the doctor's advice about keeping the quads on the same schedule they were on in the hospital. That means they eat every three hours at 12, 3, 6, and 9. Then it starts all over again. The routine goes like this:
1. Pick the loudest baby (Jackson).
2. Change his diaper quickly and hope he doesn't pee on Landon's head again.
3. Apply ointment to his circumcision is spite of his protests.
4. Re-sanitize hands.
5. Re-snap 50 to 100 snaps on his onesie and sleeper. Re-snap if lack of sleep makes them appear crooked.
6. Re-wrap him snugly in his receiving blanket so he will feel secure and stop
7. Put his hat on to keep his body temperature up.
8. Re-sanitize hands.
9. Make bottle--breast milk has to be warmed and fortified. Special Care Formula from the hospital can be served "as is." Re-sanitize after touching refrigerator handle.
10.Get a burp cloth and tuck it around his neck.
11.Turn him slightly away, hold the bottle at an angle, help him get a suction
around the nipple. Watch for rapid breathing breaks,dusky color, sleeping, and air bubbles.
12.Attempt to burp him. Try to get him to take his minimum and more before twenty minutes are up. After that, he needs to rest again.
13.Burp him again.
14.Take him back to his bed and change his clothes if he threw up.(Yes,re-snap.)
15.Re-wrap him with arms in so he will fell secure.
16. Place him on his side or back and cover him with his snoodle.
17. Give him his vanilla-scented pacifier.
18. Put the hat on his head again.
19. If he emits any offensive noises, go back and repeat numbers 2 through 8.
19. Re-sanitize hands.
20. Clean up/restock bottles, diapers,and burp cloths.
21. Celebrate quietly. Done with Baby One.
At first, we both got up to feed the boys around the clock. Once, when I rolled out of bed again at 3:00 AM, Tom sleepily observed, "You guys are going about this all wrong. You need to take turns." I wanted to throw a diaper at his head, but decided to try his unsolicited advice instead. I grudgingly admit that I function much better on 5 hours of sleep than I do on 3 or 4. I hate it when he is right.
If you are wondering how Tony has managed to avoid this routine, it is because he has a Get-Out-Of-Jail-Free Card. He was exposed to Chicken Pox and is not allowed to hold the babies for a couple of weeks. I choose to believe that it was not deliberate.
Yesterday, I changed Jackson three times during one feeding, and two of the diapers were poopy. Next, he loudly demanded to be held while I fed Landon, who was only wet while patiently waiting for his turn. Hmmm. Jackson THOMAS. Interesting. Makes one take pause.
Isabella might come home soon. We can't get over how BIG she is compared to the others. She is a whopping 5 lbs! She has a dimple in her cheek, just like Sarah.
One problem we have had with both of the girls is desaturation, or "desat." I don't understand much about it, but this is what we were told:
Oxygen saturation measures the amount of oxygen carrying hemoglobin in the blood. The blood of a full-term baby should be 95 to 100% saturated with oxygen. The blood of a premature baby receiving extra oxygen is usually maintained between about 88 and 95% saturation, not higher, to prevent retinopathy of prematurity, a serious eye condition that can result in blindness or very poor eyesight. (Jackson will be tested for that at Children's due to his small birth weight.) In the hospital, a little lighted instrument is strapped to each infant's foot to measure the amount of oxygen in his blood. When the blood does not have enough oxygen, it is called a desaturation. Desaturations can cause a bluish tint to the lips or skin and cause a baby to lose tone or become “floppy.”
Samantha looks dusky when she desats, which usually happens when she eats, cries, or gets picked up. Isabella desats when she eats or sleeps, but they think she just forgets to breathe. The girls are Desat Queens! It scares me to death, but the nurses do not seemed surprised by the alarms. They patiently remind me that the girls aren't supposed to be born yet. The girls need time to mature.
When the alarms go off, I feel like I am desating with them. I have to remember to breathe!
Samantha likes to be held under my chin. It is hard to hold her with all the tubes and wires, but I am getting better at it. It is amazing how quickly I have overcome my fear of dislodging something important in order to give her some much-needed snuggle time.
Samantha manages to take her pacifier even with the feeding tube in her mouth. They hope to move the tube to her nose when she moves from high-powered to regular oxygen.
After hearing the technical term for Samantha's bleed out after she became septic, I decided to break my own rule and research. What I learned increased my faith. We are blessed that Samantha survived that day. Apparently, the bleed out indicated that her organs were shutting down. God was with her the whole time, watching over the doctors and nurses who care for her. He was with us, too, helping us trust His love and plan.
During that critical time, many of Samantha's nurses made personal sacrifices to help. They stayed late, skipped meals and prayed. One nurse with a young baby of her own made the painful decision to skip pumping breast milk and her dinner in order to stay with Samantha. These incredibly gifted group of nurses, residents and doctors have become dear to us in so many ways. They treat our girls as if they were their own. How do we ever thank them for all they have done?
Sometimes, life is full of surprises, twists and turns. So much of what I experience is unexpected. Other times, God gently nudges and prepares us to get ready for the next assignment. When He does prepare me, I know that I am going to need that assurance to hang onto my faith because it's going to be rough. The NICU experience is one of those times.
While I prayed during Sarah's pregnancy, I kept feeling that God has many special people in the highly rated NICU unit who need to know how much He loves them. I didn't want the babies to be hospitalized. I knew there were multiples who had come home with their mothers shortly after delivery. I also knew that my grandchildren were not going to among those fortunate few. I was so sure that I warned Sarah, "Get ready, Honey. God is preparing us for a time in the NICU. He has work to do there."
The assurance that the girls are right where they need to be has made this ordeal bearable. However, I have to admit that I have driven home many late nights when I could barely see the road for my tears. Sometimes I am ashamed at my lack of faith when God has proven His love for me over and over again.
I have learned that I am weak when I am tired. I have also learned that things appear hopeless when the night falls, but they always look better in the morning.
God's Word reminds me that the Lord is the source of all light. He guides me and leads me. Darkness brings worry, trouble, and sorrow; light brings the opposite. Just as a sunbeam brightens a dark corner, God's light makes my troubles disappear. He delivers me. God is able to protect me, so I can confidently trust in Him. My best defense against fear or dread is the fact that God is my Protector. No one has power to take life away while He defends me. He has a plan. All of my surprises are not surprises to Him. We can do this together.
Sometimes, I find a warm sunbeam, close my eyes and stand in the middle of it. While the sun warms my face, I remember that God is my light and my salvation. With Him on my side, what on earth am I afraid of?
Thanks for praying.
The LORD is my light and my salvation--so why should I be afraid? The LORD is my fortress, protecting me from danger, so why should I tremble?
You, O LORD, keep my lamp burning; my God turns my darkness into light.Psalm 18:28
Posted by Sondra at 1:32 AM
Sunday, September 12, 2010
The boys were circumcised and were NOT happy about it. The doctor explained that the surgery goes much easier on full term babies. He said it is almost as if there is a natural anesthetic at that point, and the procedure doesn't seem to bother them as much. On the other hand, getting "circed" is very painful for preemies.
We got a big surprise from the doctor. The boys get to come home! We didn't expect Jackson to be released for a while due to his size, but we should have known. After all, he is the "rock star" of the NICU.
It took much of the day to work through the discharge checklist. We had to watch all kinds of videos: feeding/changing/bathing/sleeping/sickness instructions, infant CPR, car seat instructions,and "Never, EVER shake a baby!" We were given recipes for fortifying breast milk and formula. The babies will need extra vitamins, iron and calories in order to catch up.
Since the babies are so small and premature, they will need to be quarantined. The doctor reminded us that they shouldn't even be here until the middle of October. She explained that any illness--even a common cold-- can be life threatening to a preemie, so we need to be vigilant in keeping the quads away from people for a while. Since they were diagnosed with Respiratory Distress Syndrome,the babies should be confined through the flu season. Although the idea is depressing, the fact that a common infection almost killed Isabella and Samantha will make it easier to follow.
The boys were too small for their car seats, so the nurse improvised. She rolled blankets to put on each side of them, and a washcloth to put under the clip between their legs. They just don't make car seats small enough.
Callie was so excited to finally take her brothers home. She says she is going to give her pacifier to Jackson. I'll believe that when I see it.
Sarah has four hospital bracelets to claim her babies. If the bracelets are removed, the whole hospital shuts down until the baby is located. We saw the emergency plan in action when a mom decided to remove her bracelet without permission. The hospital came to a screeching halt until she was located.
Believe it or not, these car seats are small. The boys just make them look big.
The girls are co-bedding now! So glad. Samantha needs to be with her sister.
Isabella forgets to breath when she is tired or eating. Her heart rate drops, alarms go off, and nurses come running. She takes about half of her feeding by bottle and the rest by feeding tube.
Samantha starts breathing rapidly when she is picked up or bothered. I wonder if she is afraid that something painful is coming, or if she just isn't used to being held? Whatever the reason, her oxygen has to be adjusted often.
Samantha has not been offered a bottle up till now due to the oxygen. She also has a feeding tube in her mouth, which hinders the sucking process. The nurse decided to try it anyway. Samantha took her first bottle!
If Samantha learns to take her bottles quickly, she will most likely be coming home on oxygen. Sarah is very concerned about the possibility. I will just be glad to have her home, even if she isn't wireless.
We have gotten to know, love and appreciate so many of the gifted caregivers in the NICU. We are able to share the story of the quads over and over. The main thing we let people know is that God watches, listens, cares and knows. He answers prayer.
Once again, we were reminded of God at work. The nurse said, "I can't believe Sarah made it so long. I especially can't believe the boys are going home after only two weeks! I have never seen that before with quads, and I have been here fifteen years. It just doesn't happen." Fortunately, it does with God.
Although we hated to do it, we had to leave the girls behind when we took the boys home. We know the girls are in good hands. For now, they are where they need to be.
Thanks for praying.
“For my thoughts are not your thoughts, neither are your ways my ways, saith the LORD. For as the heavens are higher than the earth, so are my ways higher than your ways, and my thoughts than your thoughts. For as the rain cometh down, and the snow from heaven, and returneth not thither, but watereth the earth, and maketh it bring forth and bud, that it may give seed to the sower, and bread to the eater: So shall my word be that goeth forth out of my mouth: it shall not return unto me void, but it shall accomplish that which I please, and it shall prosper in the thing whereto I sent it. For ye shall go out with joy, and be led forth with peace: the mountains and the hills shall break forth before you into singing, and all the trees of the field shall clap their hands. Instead of the thorn shall come up the fir tree, and instead of the brier shall come up the myrtle tree: and it shall be to the LORD for a name, for an everlasting sign that shall not be cut off.” (Isaiah 55:8-13 KJV)
Posted by Sondra at 11:35 PM