photos at https://barcaks.shutterfly.com/pictures/771
Sept 30 4:00 pm
Just returned from the pediatric neurologist. He said Elijah was the most improved kid he had ever seen. He also noted that with sweet baby's degree of hypoxic-ischemic encephalopathy (lack of oxygen to the brain) that there is ALWAYS some degree of brain damage. It is unescapable. However, he was not seeing any. Also said that he would expect to see seizures. He was not anticipating any for Elijah.
“Did I not tell you that if you believed you would see the glory of God?”
Sept 27 6:00 pm
Happy 2 month birthday Elijah! Sweet baby is doing fabulous at home and has arms aplenty in which to rest. He will continue to follow-up with 10 specialists. For the medically inclined, Elijah's diagnoses included acute renal failure (healed), cholestatic jaundice (healed), disseminated intravascular coagulation (healed), hypoglycemia (healed), hypotension shock (healed), congenital infection (healed), meconium aspiration syndrome (healed), pneumonia (healed), respiratory failure (healed), portal vein thrombus (healed), respiratory insufficiency (healed), persistent pulmonary hypertension (healed), hypoxic-ischemic encephalopathy, congenital hypothyroidism, and trisomy 21.
We anticipate a beautiful future for Elijah. We cannot adequately express our humble thanks to you who have prayed for us, provided notes of encouragement, delicious meals, and love. We will never forget the tears, the prayers and the fellow saints God surrounded us with as we fully trusted Him through this chapter.
He put a new song in my mouth, a song of praise to our God.
Many will see and fear, and put their trust in the LORD.
Sept 22. 5:00 pm
Sept 21. 9:00 pm
Happy 8 week birthday Elijah! Sweet baby is still off oxygen and the decision will be made tomorrow whether to leave it off or put it back on, depending on how his saturation trends look. He failed part of the hearing test, so we will follow up next month. The MRI showed enlarged fluid spaces in the brain so we will follow up later. He is so cuddly, even if he does stay awake until 3 am at night! Not much more keeping him at the hospital.
fear not, for I am with you; be not dismayed, for I am your God;
I will strengthen you, I will help you, I will uphold you with my righteous right hand.
Sept 19. 2:00 pm
God continues to amaze us at the awesome healing He has granted Elijah. Everything looked good in the swallow study, hopefully it's just a matter of time before sweet baby is eating like a champ. I am sure Josiah can give him some tips! The cardiologist was in today for the echocardiogram. Elijah still has the open heart valve (PDA) and the doc will continue to watch it. If it does not close within 6-18 months, they will close it for him. However, they are beginning a slow month-long wean off his heart medication as he saw no signs of pulmonary hypertension today! (That nasty beast! The medical director of the NICU said that was the worst case of PPHN she has ever seen.) Another day for happy dancing! The day is drawing near that I never imagined would come...homecoming!
For this child I prayed, and the Lord has granted me my petition that I made to Him.
Sept 17. 11:00 pm
God has healed the portal vein thrombosis that afflicted Elijah! Sweet baby no longer has a liver blood clot! We are doing the happy dance at the Lord's work! No more twice daily shots of blood thinner. Today Elijah had an eye exam and all looked normal. He had an MRI to check his brain. He got very upset about 3/4 way through (being very hot and sweaty). Hopefully they got enough images, if not, he will go back for more. He has been off oxygen since 4:30 pm and they will continue to watch him, so far, he is doing well. They brought in the list of specialists that he will being seeing after he goes home and it is mind-boggling! Sweet baby's challenge now will focus on eating. He goes for a swallow study this week to see what therapies may help him. He relaxed in a swing last night so mommy could get some sleep, as he has become quite the night owl!
And the LORD, He is the One who goes before you. He will be with you, He will not leave you nor forsake you; do not fear nor be dismayed.
Sept 14. 2:00 pm
Happy 7 week birthday Elijah! Sweet baby is off the morphine drip, and should be off oral morphine in a few days. His phenobarb was discontinued today and surgery ivs removed. Next week will be a busy one as he will get another liver ultrasound, an echocardiogram, and oxygen lowered. His gtube site is healing nicely, he removed the two stitches all by himself. He also tries to pull off his nasal cannula, which when he succeeds really makes him made as it is taped down to his cheeks and he rips the tape off. Silly baby!
I will say of the Lord, He is my Refuge and my Fortress: my God; in Him will I trust.
Sept 13. 8:30 pm
Elijah has been resting comfortably today, mostly sleeping and recovering from surgery. He has no interest in the bottle and is happiest sleeping in mommy or sister's arms. Sweet baby is back up to full feeds. Such a tremendous blessing from the Lord to care for this precious soul.
He who dwells in the secret place of the Most High shall abide under the shadow of the Almighty.
Sept 11. 9:30 pm
Sweet baby had surgery to insert the gtube today. He is resting well for the most part, but uncomfortable when he is awake due to the incisions and hunger, as he has not been fed since 2 am this morning, and will not get food until tomorrow. So he spends alot of time in Mommy's arms. Hopefully by next week sometime he will be off a couple more meds.
My help comes from the Lord who made Heaven and earth.
Sept 10 7:00 pm
Tomorrow afternoon Elijah will have surgery to insert the gtube. He is taking small amounts from the bottle and we will continue to work on the oral feedings. All other weanings are waiting until after surgery.
But I will hope continually, and will yet praise Thee more and more.
Sept 9. 6:00 pm
Elijah continues to bring joy into lives. His hair is pretty amazing in that it usually sticks straight up. He has taken some nutrition by mouth over the past 2 days, but not nearly enough. He is scheduled for gtube surgery later this week. The nurses assure me learning to eat will be much better at home and this gtube is a positive thing, for feeds and meds. He started a new med today, epo given by injection as his hematocrit is low. Doc says it will help his bone marrow produce more cells. He also starts vitamins and iron to help with anemia. Sweet baby was scheduled to be off morphine by the end of the week, but with surgery, they use morphine. Still at .2 oxygen. They are sending blood to the Mayo clinic to see why he has the liver clot. Docs won't give an estimated date he may get out of hospital. Thankful he has a room with a window so we can watch the first snowfall.
Heal me, o Lord, and I shall be healed; save me, and I shall be saved, for You are my praise.
Sept 7. 1:30 pm
Happy 6 week birthday Elijah! Sarah is making the official celebration cookies today. Yesterday sweet baby was taken off oxygen. After 15 minutes it was apparent that he was not ready. Will try again next week, right now he stays at .2 liters, as they also tried .1 to no avail. Doc is planning on surgery next week to put gtube in as sweet baby is not taking from a bottle. He sucks on pacifier, and on bottle, but when milk comes out he is overwhelmed at having to swallow and breathe. Praying he learns to coordinate it all. Elijah continues to gain weight and is at 5315 g.
Remember His marvelous works that He hath done, His wonders, and the judgements of His mouth.
Sept 5. 3:00 pm
Sweet baby is now on .2 liters oxygen. Morphine is being weaned again as vomitting is subsiding. Elijah is now on a lactose-free formula to see if that helps. The OT brought in a floor mat for some tummy play time in the near future. Waiting for cardiologist to see if heart med can be weaned.
Seek the Lord and His strength, seek His face continually.
Sept 4. 5:30 pm
Elijah has his days and nights turned around. He has been sleeping most of the day after having been awake most of the night. He has finished cortisone so we are down to 5 meds. Today's heart ultrasound will tell if he can go down on another. Sweet baby has started throwing up and they believe it may be due to morphine withdrawls, so that dose is staying as is for now. In the meantime he had been gaining weight but now started losing, so they are decreasing the volume of his feeds and increasing the calories. Oxygen flow is still at
.3 while we work on these other issues. Sweet baby still not interested in breast or bottle. Hoping that turns around soon.
Glory in His holy name; let the heart of them rejoice that seek the Lord.
Sept 1. 11:00 pm
Both brothers got to hold sweet baby for the first time today. Josiah must have told me 10 times, "He is so cute!" Then, surprised and questioning, "He has no teeth!?!?" Oxygen flow was reduced to .3 liters this evening. Elijah not interested in the bottle today. A new nurse got tired of putting his feeding tube back in and went in through the nose. So far, he has not worked that out.
Sing to Him, sing praises to Him; tell of all His wonderous works!
Aug 31. 7:30 pm
Happy 5 week birthday Elijah! Sweet baby spent most of the day sleeping. He really wasn't interested in a bottle. Due to his decreasing edema, he has lost almost 4 lbs and 4 inches of girth around his torso. His little body was so swollen he could hardly move his little limbs or even fingers. He is just so squishy and cuddly now. But still probably a little more fluids to lose. For the first weeks we were here, sweet baby had a dedicated nurse or 2 in the room with him at all times. Now, his nurse has 3 babies and only comes in as needed. The night shift decided to take a different (from the day shift) approach to his respirator as he is on .5 liter flow and 100% oxygen, which is more like what he will be on if he goes home on oxygen. One of the children commented that sweet baby had never been outside. Soon, hopefully soon.
Oh give thanks to the Lord; call upon His name; make known His deeds among the people!
Aug 30. 4:00 pm
Elijah is off another machine and is now on 'wall air'. His flow rate was decreased to 1 liter per minute which allows him to get it from the wall instead of a flow machine. His oxygen is at 70% so he still has a way to go before he is done with it. Yesterday Elijah took 15 ml of his 105 ml feeding from a bottle. Today he took 28. The doc last week said babies intubated as he was usually need a g-tube surgically inserted as they are not able to suck and swallow well. Praying this is another healing God is providing for sweet baby.
Our God, You reign forever. Our Hope, Our Strong Deliverer.
You are the Everlasting God. You do not faint. You won't grow weary.
Aug 29. 9:30 pm
Elijah got his first bath yesterday and loved it! There was warm water in a small tub with some towels to lay on and Rebecca was giving him the spa treatment. The nurse said most babies sit for baths, but not sweet baby, he was laid out relaxing. Now when we kiss his sweet self there is not a nasty after-taste. He also tried breast feeding yesterday and today. He is not real sure about that. He did take a small amount of his feed from a bottle today so we will continue to work on that. He is an expert at wiggling his feeding tube out and gets pretty mad when they put it back in. The nurse put a larger one in today thinking that would help, but he wiggled it out in less than 5 minutes. The occupational therapist would like to see him tracking more with his eyes. Not sure if it's neurological or he just gets overwhelmed. His oxygen is at 3 liters per minute and 40%. When he is awake, he wants to be held. His bilirubin is down meaning the liver clot is shrinking. Still on meds for heart, lungs, thyroid, clotting, anti-seizure, and morphine. Since we have been able to hold him more and more, he has not needed the anxiety med. Weight is 4940 g and he is losing "puffiness" from the edema. I never get tired of the docs or nurses telling us he is a miracle. A true miracle.
And this is eternal life, that they know You the only true God, and Jesus Christ whom you have sent.
Aug 27. 7:00 pm
Happy one month birthday Elijah! You are an awesome testimony of God's handiwork and healing power. You draw us closer to God and our hearts overflow with gratitude for your life. For sweet baby's birthday, his picc line was removed, sisters got to hold him, and he was moved to a big boy crib. All meds are either oral or injections now, there are at least 5 different ones a day. He is still on oxygen to breathe and has a feeding tube, which he delightfully wiggled out with his tongue today. He was very proud of himself, until he got hungry!
Fear not, for I am with you; be not dismayed for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.
Aug 26. 11:00 pm
Sweet baby has been extubated for about 6 hours now and is doing well. He is getting 6 liters of 45% oxygen every minute. Only one more medication to move to oral then the picc can come out. Going to come down on morphine a bit as he is really relaxed. In God's mercy, Elijah has made quite the progress this week. Looking forward to the entire family being able to cuddle him soon. They have already planted lots of kisses on baby brother. Josiah was able to come in last night for a bit when I was holding sweet baby. You should have seen the precious smiles exchanged.
I will praise the Lord as long as I live; I will sing praises to my God while I have my being.
Aug 26. 3:00 pm
Elijah is moving to oral meds today in hopes of removing picc line soon. Will try extubation in a few hours. Sweet baby was in my arms 6 hours last night. He is always happier after being in Mommy's arms.
You keep him in perfect peace whose mind is stayed on You, because he trusts in You.
Aug 25. 11:00 am
Elijah is spending the day resting and occasionally waking and looking around. Sweet baby gave a few smiles today. He does not seem to be having as many agitated times today. Tomorrow we try extubation again. We pray each of you have a glorious Sunday and worship the Lord with your all!
Praise to the Lord, O let all that is in me adore Him
All that hath life and breath come now with praises before Him.
Let the 'amen' sound from His people again. Gladly for aye we adore Him.
Aug 24. 10:30 am
Happy 4 week birthday Elijah! You are one incredible child! Just sat in on a pow-wow with the big-wigs. They are going to try to extubate (go from trachea tube to nasal) again in a couple of days, depending on sweet baby. They will probably increase Elijah's sedation until then to keep him calm and restful, as when he is upset and moving around he is probably irritating those airways by rubbing the tube against them. Praying his little airways will be ready for the switch this time.
Trust in the Lord forever, for the Lord God is an everlasting rock.
Aug 23. 10:00 am
After a busy day yesterday, Elijah had a quiet night and is still resting. His oxygen is at 46 on the ventilator. The I.v. was removed from his foot, so sweet baby just has the picc line in his arm. The other monitoring devices are sensors on the skin. Still producing quite a bit of mucus in the lungs. Elijah likes to hold your finger and have his head rubbed, most of the time.
May the God of all hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope.
Aug 22. 3:00 pm
These past few hours have been spent trying to get Elijah off intubation (tube into lungs through mouth) to a nasal cannula (tubes in his nose). It would be a step forward, however, sweet baby is not quite ready. Maybe next week. Because of the pphn, he is still having trouble oxygenating. However, while the tube was out of his throat, I did get to hear his hoarse little cry. So sweet!
He has made everything beautiful in its time.
Aug 21. 11:30 pm
The nitric has left the building. Well, at least sweet baby's room. Elijah is off nitric!
that all the peoples of the earth may know that the hand of the Lord is mighty, that you may fear the LORD your God forever.
Aug 21. 4:00 pm
Elijah was in my arms for 2 hours today. Nitric is down to 5, oxygen back up to 60. Took him off the 'squishy' bed today and trying without it, as he tends to over-arch his back. All else slow and steady. Starting to smile more today, those had disappeared for a few days. Glad to see them return!
Oh let Your will be done in me; In Your love I will abide
Oh I long for nothing else as long as You are glorified.
Aug 20. 10:00 pm
Got to hold sweet baby twice today for 3 hours each time. Sweet bliss! Elijah had a good day today. Oxygen is down to 45 when resting, nitric down to 15. Dr. today talked of trying to move meds to oral instead of iv and said it will take "weeks and weeks" to wean. Biggest surprise today: after dinner Elijah was moved to his belly. Last time they tried it, 12 days ago, he absolutely hated it. Tonight he is testing well. Edema is slowly subsiding, still lots in his head and chest. Up to size 4 diapers. Off antibiotics.
the LORD takes pleasure in those who fear him, in those who hope in his steadfast love.
Aug 20. 3:00 am
It took 3 nurses 30 minutes to get everything ready, and I got to hold sweet baby!! It was a very sweet time indeed!
My mouth will speak the praise of the LORD, and let all flesh bless his holy name forever and ever.
Aug 19. 3:30 pm
Elijah has had alot going on. His heart ultrasound looked about the same, slightly better than when he was born. Cardiologist says he will be on the respirator for awhile. EEG showed no seizures although brain activity is not "completely normal." Liver ultrasound showed improvement, which doc said will be slow, clot is still present. Said Elijah will be on the anti-coag for a "long time." Oxygen was lowered to 60 but is raised back up when he gets agitated with CARES. Still very edemic, esp head and chest. Weight is 6050 grams. Best news today: occupational therapist came in and is working towards us getting to hold him soon! Woohoo!
Let everything that has breath praise the LORD! Praise the LORD!
Aug 18. 6:00 pm
Sweet baby has been resting most of the day. He does not get as agitated with CARES and tolerates them well. His oxygen is down to 70 and he is off the dopamine. Started getting milk again. The EEG lasted about 45 minutes, much shorter than anticipated as the tech did not detect seizure activity, but waiting on final word from neurologist (there is only 1 in Alaska!). Will do another heart x-Ray and liver ultrasound in the next day or so.
But let all who take refuge in you rejoice; let them ever sing for joy, and spread your protection over them, that those who love your name may exult in you.
Aug 18. 10:00 am
Elijah is at 80% oxygen. I believe the extra blood really helped him out. His blood gases looked good this morning. Should be able to start getting milk again later this afternoon. Waiting for the EEG person to come in, they say the test can last 4-24 hours. Chest x-Ray looked the same, still hazy in the lungs. Sweet baby is not as agitated and not requiring as much relaxation med. We pray each of you have a restful and worship Sunday.
Praise to the Lord, the Almighty, The King of creation
O my soul, praise Him, For He is thy health and salvation
All ye who hear, now to His temple draw near
Praise Him in glad adoration
Aug 17. 10:30 pm
Happy 3 week birthday Elijah! Dr. said Elijah has made remarkable progress these past 3 days, although she is not ready to say 100% that he will survive this. From about 2 am till 9 pm tonight sweet baby has been highly agitated: crying, screaming, kicking, sweating. However, his oxygen levels stayed up. When they gave him some med to relax, his oxygen level not so good. Just opposite what he has been doing, go figure. His irritation could have something to do with not being fed all day, in prep for a blood transfusion this evening. He does like his food. But it could be a myriad of other things or a combination thereof. Sweet baby will get an EEG in the morning, as well as another chest x-Ray. He got a new type of feeding tube today, one that works in conjunction with the respirator. God has shown His tender mercies and healing power in this sweet child. Let us praise and glorify His name.
Oh worship the King, all glorious above. Oh gratefully sing His wonderful love.
Aug 17. 8:00 am
Sweet baby had a rough night. He is not able to maintain his oxygen saturation levels when he gets upset, and most of the evening he was upset. The med they were giving him would wear off too soon to be given again. As he was getting it every 4 hours, he is needing it every hour, and it can only be given every 2. They increased his morphine in hopes to help him relax and be able to stay on the conventional respirator.
When the cares of my heart are many, your consolations cheer my soul.
Aug 17. 12:00 am
Sweet baby is tolerating the conventional ventilator so far. However, he is having trouble oxygenating when he stresses. And he stresses if he has a dirty diaper, if people are messing with him, if he is hungry, etc. But while he is resting, he does well. He usually requires a relaxing medication after CARES and he gets CARES every 3 hours. In CARES they take his temp, change his diaper, suction out his lungs, put some oral gel in his mouth, re-position him, feed him and draw labs, if needed. His oxygen is now at 90 while resting, and needs to be turned up to 100% when he stresses. His little lungs are slowly healing, he is still a very sick baby who needs lots of support. Diaper changing time is fun, as he usually likes to dirty several at changing time. Just when you think he is done...
Now to Him who is able to do far more abundantly than all that we ask or think, according to the power at work within us, to Him be glory in the church and in Christ Jesus throughout all generations, forever and ever, Amen.
Aug 16. 2:30 pm
Elijah is trying the conventional ventilator again today. The Dr. says we are not 'trying' it, we are 'doing' it. Glad to see some optimism (but he also said he has been wrong before!). Sweet baby has 2 meds now down to minimal doses. Weight down to 6100 (from 6240) means some swelling has gone down. Brain scan showed no bleeding, but enlarged ventricles. At this point, I am not sure what that means. Nurse said chest x-Ray looked better. Clotting study came back good, shows they are giving him the correct amount of anti-coagulants. Still has some bugs in his trachea. There is a white board in the room that lists goal for the week. Lily wrote "breathe on his own." Amen! We would love to see him breathing on his own.
You are my hiding place and my shield; I hope in Your word.
Aug 15. 3:00 pm
Sweet baby had his iv line repositioned today, looks like it's going right in his finger. He does not like nurses messing with him, changing diaper, repositioning, poking him with needles and his stats show it, they go down. Dr. is weaning blood pressure med and oxygen today (going down to 80). Said the next couple of days will be crucial in the direction he goes.
I am trusting Thee Lord Jesus, trusting only Thee.
Aug 14. 10:00 pm
Sweet baby did pretty well at 90% oxygen today, going to turn it down a little more this evening. Some meds are now being given orally, only a couple more to go then an iv can come out. He will still have his picc and an art line, but one less is great! A nurse that worked with Elijah the first week came in today and said it was "incredible" to see him responding to stimuli as he was. Will be interesting to see the brain scan when it gets done, as his was basically nothing the first week they had the monitor on. Still did not get his art line back in. Hopefully soon. Sarah today just realized how miraculous it was that her brother was "raised from the dead" and has been sharing that fact.
Rejoice in hope, be patient in tribulation, be constant in prayer.
Aug 14. 10:30 am
Today Elijah is having his oxygen turned down. Overnight they took it from 100 to 90. He seems to be doing well with it. He arterial line from where they were drawing blood for labs clotted yesterday and they have not been able to get a new one in yet. It's an important line as they need to be able to draw blood for various labs. Sticking him all over repeatedly isn't much fun at all, and not as accurate results. He is on viagra for his heart (yes, i know what you are thinking viagra is for, but it was originally a heart medication and THAT result is a side effect). He is awake more during the day, usually waking up waiting on his feedings. He is like his brother Josiah in that he really likes his food! We have been truly blessed by God's children as y'all have provided us with meals, love, support, encouragement, and most importantly, prayers.
I have derived much joy and comfort from your love, my brother, because the hearts of the saints have been refreshed through you.
Aug 13. 6:00 pm
Pretty quiet day. Elijah is mainly resting today, besides trying to pull out his picc line and freaking out the nurses. They are not changing any doses or weaning today, just letting his little body rest and recouperate from changing ventilators yesterday. Today's nurse is ok with me massaging sweet baby to see if that helps his edema. Have to keep a close eye on the monitors as to not overstimulate him. His blood pressure, heart rate, and oxygen saturation levels are pretty sensitive to what's going on in his world. Yesterday's nurse was too loud and he let her know. Sweet baby likes today's nurse. Granny goes back to Texas tomorrow, so thankful she was here, the littles were well cared for, as was our house!
He will tend his flock like a shepherd; he will gather the lambs in his arms; he will carry them in his bosom, and gently lead those that are with young.
Aug 12. 11:30 pm
Elijah is resting comfortably. It's been a rather quiet day. After switching him back to the oscillating ventilator around 5 am this morning, the day has been spent quietly waiting for his blood gases to improve. They are not improving yet so the nurses continue to tweak settings on the ventilator. His nitric is back up to 20. They are weaning some dopamine as his blood pressures have been better. He is pretty calm when he wakes up, so he must be feeling a little better today. The heart scan today showed no changes, he still has the moderate Patent Ductus Arteriosus, a heart valve failed to close after birth, a heart murmur. His weight is 13 lbs. 12 oz. His swelling remains. The troubles breathing all stem from severe pulmonary hypertension, caused by meconium aspiration and the fact that he wasn't breathing for so long after birth. Rest well, sweet baby, the same God who knit you together holds your future in His mighty hands.
Aug 12. 7:00 am
Sweet baby did not do well on the traditional ventilator so we are back on the oscillator. He oxygenates his blood better on this machine. It would be a step forward if he were to stay on the regular machine, but sweet baby is not ready.
And he said, "O man greatly loved, fear not, peace be with you; be strong and of good courage." And as he spoke to me, I was strengthened and said, "Let my lord speak, for you have strengthened me."
Aug 11. 1:00 pm
Weaning the nitric from 20 down to 15, his blood gases are not great. Going to try and switch his ventilator again, the past 2 times he did not like the change, so we shall see. He is now in size 3 diapers. Sweet baby Elijah continues to bring unspeakable joy and show God's tender mercies.
Aug 10. 7:00 pm
Happy 2 week birthday Elijah! Sweet baby is resting comfortably this evening, his 14th day. Lily made mini-cheesecakes and brought them to the hospital to celebrate. Our favorite doc was in today (Dr. J) and said it will take at least a week to know if the meds they are giving him for the liver clot are working. Dr. is going to "minusculy" "lower his nitric to see how his blood gases react. So far, so good. His umbilical cord, or what was left of it, fell off today. Elijah now weighs 6120 grams and still has edema. He does not seem to get as upset when they mess with him now, and he seems to like mommy singing to him. And he definately responded when Josiah was in the room today! Finally tonight, he remains ever oh-so-adorable.
Taste and see that the Lord is good.
Aug 10. Midnight
Sweet baby is resting. Started another med today for thyroid. Nurse said we will start to see bruising on him as the anti-coag med usually causes bruises, and he gets a shot twice a day. Blood pressure was low today so he got more iv fluids, and he is still edemic, maybe a little more so today. His poor little ears are curling up again and his belly looks so taunt from all the swelling. His favorite respiratory therapist, we call his girlfriend, has not been here for a few nights, and his favorite nurse has been gone also. He is getting fabulous care, but there are definately some favorite caregivers.
Trust in the Lord with all your heart; lean not on your own understanding. In all your ways acknowledge Him, and He will make your paths straight.
Aug 9. 2:00 pm
Ultrasound of liver shows that a large vein going from bowels into the liver is blocked. They will start sweet baby on anti-coagulant to try and unclog. Of course, that comes with risks of bleeding. New dr. said he should be coming down on all his meds right now as he is 13 days old, but is unable to. Said, "It is incomprehensible to see him survive all this, but here he is." So thankful we serve a God of miracles.
"I believe; help my unbelief!"
Aug 9. 9:00 am
First diaper change by mommy? Epic fail. I had just woke and nurse asked if I wanted to change his diaper. "Be careful as I just changed all his linens. Put his new diaper under him first before you take off the old one." ( Elijah gets new bedding twice a day and it takes a couple of people to do it as they must lift him up and watch all his tubes and wires.) Well, sweet baby decided to let go of everything at just the right moment, getting his old diaper, new diaper, bedding, me, and the nurse. I don't think I will be getting that offer again anytime soon. He already seems to have a sense of humor!
Aug 8. 9:00 pm
Sweet baby is resting this evening. They lowered his nitric so we will see how he does with that. The nurse today called him "a pooping champ." Apparently, his bowels are in good order. He will have a whole mess of labs drawn in the morning as well as more chest xrays and a liver ultrasound. Down to only one antibiotic, trying to kick the e. coli that's in his trachea. He loves the taste of mommy's milk on a swab in his mouth.
Rejoicing in hope; patient in tribulation; continuing instant in prayer.
Aug 8. 9:30 am
Elijah is resting peacefully. He is doing that a lot now and it is good. A few days ago they tried weaning him of respirator numbers and he did not like that at all, kinda went into a downward spiral. So next time they try and reduce his numbers, they will go v e r y s l o w l y. Tried reducing blood pressure med yesterday, but he didn't like it, so it went back up. As of now, the only time he gets upset is when he is going poo or when they mess with him, such as feeding, suctioning or trying to change his position. He definitely does not like laying on his belly. He screams (no sounds) and cries (a tear or two) and tries flailing his little arms and legs. If he were't so cute I might take him seriously! Dr. said the chest x-Ray this morning shows a little improvement. His platelets continue to slowly go down and they give him more every few days. Nurse said that is pretty normal for kids like him. He is still pretty swollen with fluids, but that should slowly go down as he continues to pee more.
In Christ alone my hope is found; He is my light, my strength, my song.
Aug 7. 4:30 pm
Dr. came to check on Elijah and said he was "an impressive kid with all that he has been through." I think we serve a pretty impressive God!
Aug 7. 2:30 pm
Because of Elijah's elevated bilirubin levels, they were concerned he may have a nasty infection of CMV. After 3 days waiting for test results to comes back, he does not have it! Prob just elevated due to extended resuscitation time. Yeah! One less hurdle!
Hope thou in God; For I shall yet praise Him for the help of His countenance.
Aug 7. Noon
Elijah is resting comfortably. Everything remains calm and stable at the moment.
Rest in the Lord, and wait patiently for Him.
Aug 6. 9:00 pm
Sweet baby is resting peacefully. He has times when he wakes and is rather agitated that he cannot move around much as they are trying to keep him still to keep all the I.v.s in place. One I.v. in his foot blew out a vein today. After trying twice to find another vein, the nurse quit and is going to let another nurse try. My poor little pin cushion. His blood gases continue to look good. The Dr. today said he was happy with the status quo. We are not going backward today. Praise the Lord! The nurses were very lenient with the rules for us but have tightened down now as Elijah is more stable. He continues on the oscillator to help him breathe. He is now up to an ounce of milk every 4 hours and his lungs continue to secrete lots of goo. The ceiling started leaking some type of cooling fluid so we were moved to a private room with a window. Blessings come in all sorts of packages!
Taste and see that the Lord is good.
Aug 6 3:00 am
And we have some poo!
Aug 5. 11:00 pm
Fever and red blotches are gone, they think it was due to the picc line irritating a vein. His blood gas levels are good, they did have to raise some numbers they had lowered. Looks like he could not take so many changes so quickly. Xray showed no digestive tract blockage, still waiting on him to 'go'. The amount of milk he gets is steadily increasing and he really likes it when they put a little milk on a swab and let him taste it. His weight is at 12 lbs 8 oz., but he stll has alot of edema in his abdomen/chest region. He seems alot more restful this evening. They tried to turn him to his tummy or his side today, but that just made him mad. If those tubes were not down his throat, there would have been alot of screaming going on. He did manage a couple of tears and ended up happily on his back. :)
I will praise you, O Lord, with my whole heart; I will tell of all Your marvelous works.
Aug 5 3:00 pm
Heart u/s and chest x-Ray look same. Still has a valve in his heart that is not closing, probably due to stress. Elijah has developed a fever and red blotches on his chest and face that nurse is unsure about. Getting an abdomen x Ray now to see why no poop.
The Lord hears when I call to Him.
Aug 5. 1:00 pm
Sweet baby Elijah is struggling today with his breathing. Trying to keep his blood oxygenated is a challenge. God designed and formed his lungs, He is the Great Physician. Bacterial infection and pneumonia in the lungs makes the fight even more challenging. May get another heart ultrasound today. Dr. says kidneys are improving, but lungs either took a beating or need a beating. :) Trying to get my milk supply up so he will have enough. Need him to poop now or he will get an abdominal xray to check for blockage. The hospital and staff are amazing. We have the most awesomest friends and family.
Praise Him for His mighty acts; praise Him according to His excellent greatness.
Aug 4. 11:00 pm
Another comfortable time of resting for the sweet baby Elijah. He continues to have wakeful times, looking around and smiling. Today his blood gases looked good so they are weaning him off nitrogen but he is still on oxygen. He continues to have some edema but hopefully that will go down. His head is now less swollen and they could do a brain scan, but they are waiting as the ventilator he is on keeps his little body shaking pretty good. They found some 'bugs' in his trachea so new antibiotics were started. He remains on morphine to keep him calm. The remaining two umbilical lines came out today and he now has i.v.s in his foot and arm, along with the picc line in his other arm. Lily was the first to feed him, then Sarah (tube feeding every 3 hours). Looking back over the past 8 days, he has made amazing progress, although still on life-support. God continues to heal this precious child.
Blessed is he whose help is the God of Jacob, whose hope is in the Lord his God.
Aug 4. 12:30 am
Elijah is resting comfortably tonight, even after his first earthquake. We were moved to a private room today as there was a leak in the ceiling of our shared room. Blessings come in many ways! His blood gas levels are looking good and he is awake and looking around more each day, even though he is still on a pretty good dose of morphine. God is continuing to physically heal him, although he is still on a life-supporting ventilator and a host of meds. Sleep well, child of the Most High God.
Oh, magnify the LORD with me, and let us exalt his name together!
Aug 3, 8:30 am
Happy 1 week birthday sweet Elijah! You are a true blessing! Elijah had a restful night and his blood gases were good. However, this morning they are off. Overall the doc says he is doing well and he certainly is looking better as the swelling continues to go down. And this sweet baby smiles more than any I have ever seen. What precious gifts from God as we travel this road!
Praise God from whom all blessings flow!
Aug 2. 9:00 pm
Still trying to get Elijah's blood gas levels where they are stable. If they get one straight, another goes bonkers. Still on life support machines and having troubles with blood pressure. He is opening his eyes more today and he has eyelashes! They are so cute! (His eyes have been so swollen shut I had not seen eyelashes.) He got his first feeding food today with milk into a feeding tube. Slow progress, but he is moving forward, with God's healing balm.
I will bless the Lord at all times; his praise shall continually be in my mouth.
Aug 1. 8:00 pm
Struggled all day with trying to get his blood gas levels up. Praying for a restful night for Elijah and God's healing on his lungs. His priority struggles right now are with his heart and lungs, as he needs support for both of them. Morphine was increased to make him more comfortable and help him to rest.
I sought the Lord, and he answered me and delivered me from all my fears.
I sought the Lord, and he answered me and delivered me from all my fears.
Aug 1. noon
Pulmonary hypertension is nasty. That's the major issue now. The lungs are are not exhanging the gases as they should. Meconium was in the lungs. Nasty stuff. But God made these lungs. Intricately knit together. Thank you Lord that you are over all Your creation.
Aug 1. 7:00 am
Elijah's blood gasses are low. We are praying they improve and the correct setting on the ventilator can be found. His morphine was increased as he was becoming restless. God knew before time began what this child needs. Praise God!
July 31. 5:00 pm
Dr. was happy with Elijah's progress today. The cooling cap is off and a brain scan is planned when some head swelling goes down. His catheter was removed and he is wetting his diapers (yeah). A picc line is planned to be inserted to give direct longer term access for his meds. Stll on respirator. He got to be turned on hiis tummy today and he seems very comfortable. The dr. is encouraged that Elijah is moving a little (fingers, hands, and feet). But the most exciting for us today was that every now and then, Elijah will peek open his left eye and take a look at us. We are praising God for the healing He has provided Elijah and the grace and mercy He has shown us. We are humbled once again by the prayers being lifted for our family.
July 31. 4:00 am
The cooling cap is off and he opened his eyes for a few seconds!!! :D
July 30. 5:00 pm
Not much has changed. His cooling cap will come off tonight, so we expect changes overnight as he warms up. Thank you for praying.
July 29 11:30 pm
He is starting to produce some urine - yipee! Also, he oxygen was lowered a little which means his lungs are doing a little better on gas exchange. Brain activity still very low.
July 29 5:00 pm
Elijah update - Most pressing issues are heart and lungs. Brain activity is very low. Blood pressure is low and his lungs need to extract oxygen from the air he is taking in. They are giving him oxygen at around 450 breathes per minute. He is on lots of meds including blood pressure, morphine, dopamine, and a list of others. He has on a 'cooling' cap to keep his brain around 93 degrees for 72 hours to decrease swelling and help his body focus on his heart and lungs. His kidneys are not working, and his liver is damaged. A lot of damage occurred due to him not having a heart beat or breathing for at least 20 minutes after he was born. He was born with apgar scores at 0 for the first four times they took them, which basically means he was dead. Isn't our God awesome that He brought this little child back from death? For how long, only He knows. Thank you for your prayers, they sustain us and our family.
July 27. 4:55 pm
Elijah Josef Wayne Barcak is born weighing 9 lbs. 6 oz. and is 21.5 inches long.