1st picture with no tubes on his face May 11, 2011
2nd picture with nothing on face June 23, 2011 (he loves his paci and loves to be swaddled)
Thursday, June 23, 2011
June 23, 2011--Today was a good day
Today was a good day. Around 230 Ricky and I went down to get a drink and a snack in the cafeteria when we got back to the nicu around 3 Tripp was asleep and before he had went to sleep he had pulled (tape and all) the nasal canula completely off of his face. Since he had been doing good while he was asleep with it off we just decided to take it off and not put it back on. So today we got to take a picture of our little boy with no tubes on his face for the first time in 45 days :) He is continuing to do better each day, and today he weighed 11 lbs and 3.6 oz. The plastics resident also came by and gave us some very good maybe news that he will be talking with Tripps doctor about. If everyone could just please say a prayer that whatever decision they make will be the best for Tripp and our family.
1st picture with no tubes on his face May 11, 2011
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1st picture with no tubes on his face May 11, 2011
How God Picked
Even though this is for preemie moms, I think it also applies to moms of other children with special problems and needs.
How god picks preemie moms....
Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
"Armstrong, Beth, son. Patron saint, Matthew.
"Forest, Majorie, daughter. Patron saint, Ceceila.
"Rutledge, Carrie, twins. Patron saint... give her Gerard. He's used to profanity.
Finally, He passes a name to an angel and smiles, "Give her a premature baby."
The angel is curious. "Why this one, God? She's so happy."
"Exactly, " smiles God. "Could I give a premature baby a mother who does not know laughter? That would be cruel."
"But does she have patience?" asks the angel.
"I don't want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it.
"I watched her today. She has that sense of self and independence that are so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make it live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you."
God smiles, "No matter, I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child who comes in a less than perfect way. She doesn't realize it yet, but she is to be envied.
"She will never take for granted a spoken word. She will never consider a step ordinary. When her child says 'Mommy'' for the first time, she will be witness to a miracle and know it. When she describes a tree or a sunset to a blind child, she will see it as few people ever see my creations.
"I will permit her to see clearly the things I see - ignorance, cruelty, prejudice - and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."
"And what about her patron saint?" asks the angel, the pen poised in mid-air.
God smiles. "A mirror will suffice."
-Adapted from
Erma Bombeck
Motherhood The Second Oldest Profession
How god picks preemie moms....
Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
"Armstrong, Beth, son. Patron saint, Matthew.
"Forest, Majorie, daughter. Patron saint, Ceceila.
"Rutledge, Carrie, twins. Patron saint... give her Gerard. He's used to profanity.
Finally, He passes a name to an angel and smiles, "Give her a premature baby."
The angel is curious. "Why this one, God? She's so happy."
"Exactly, " smiles God. "Could I give a premature baby a mother who does not know laughter? That would be cruel."
"But does she have patience?" asks the angel.
"I don't want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it.
"I watched her today. She has that sense of self and independence that are so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make it live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you."
God smiles, "No matter, I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child who comes in a less than perfect way. She doesn't realize it yet, but she is to be envied.
"She will never take for granted a spoken word. She will never consider a step ordinary. When her child says 'Mommy'' for the first time, she will be witness to a miracle and know it. When she describes a tree or a sunset to a blind child, she will see it as few people ever see my creations.
"I will permit her to see clearly the things I see - ignorance, cruelty, prejudice - and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."
"And what about her patron saint?" asks the angel, the pen poised in mid-air.
God smiles. "A mirror will suffice."
-Adapted from
Erma Bombeck
Motherhood The Second Oldest Profession
Monday, June 20, 2011
June 20, 2011
Since extubation Tripp has been doing pretty well. Today we are at 6mm distraction, when doing this today the plastic surgeon told me that even though weve added 6 mm to the length of his jaw it has probably only made about half of that amount in the back of his throat where he needs the actual room. But this is going fine otherwise. It has made him more fussy, tylenol hasnt been helping so today he got a does of morphine by mouth this helped calm him down to where he could actually sleep. And his oxygen is now at 21% (which is room air) and 2 liters flow. He really is doing alot better than he was before and hopefully we will know some time frame of when he will get to come home by the end of next week. And today he weighed 11 lbs and 5 oz. Other than that were just hanging out playing a waiting game. If anyone is interested in seeing a picture of what his distractors look here it is. There is a piece of tubing that connects each side together. This was taken saturday June 18th.
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Friday, June 17, 2011
Extubated
Over the past couple of days Tripp has been intubated. Over the past couple of days I have been concerned that he would pull the breathing tube out because you could tell how much it really bothered him. Well I guess he just knew he didnt need it any more today because he pulled it out earlier in the day and has done fine with it out. He is currently on a nasal canula at 3 liters flow and 25% oxygen. His pain medication is now down to half of the dosage that he started out with after surgery on Tuesday. His plastic surgeon says he looks really good so now were just waiting for him to be distracted to a point where he doesnt block his airway anymore. He feels that we will do at least 15 mm and at that point he will evaluate him to see if he needs to do it further then. And Tripp is now up to 11 lbs and 9 oz.
God is good, all the time.
God is good, all the time.
Tuesday, June 14, 2011
Distraction
Last week wasnt very exciting, just basically working on getting Tripps feeds back up to the normal amount, which happened on friday, and just alot of waiting until he had his surgery today.
Todays surgery went pretty well. They took him back about 715 and were done around 11. They were able to get an iv and avoid a central line (which the nurses werent happy about bc hes a hard stick and the ivs in babies only last a couple of days, but I dont think that he should have something like that just to make their job easier either). And putting in the distractor went well. Because he is quite swollen at this point he came back up to the NICU on a vent, so they will keep him pretty sedated over the next few days until this is able to come out. The distractor itself moved the jaw forward about 1 mm today and then they will start turning the device tomorrow and continue over the next few weeks to get his jaw out far enough to where he can breathe on his own. Older kids have said that the only painful part of the process is the actual surgery so that is good for us to know that he wont be in alot of constant pain over the next few weeks, but he will probably have some tylenol prn in case he does show some signs of pain or discomfort. Hopefully the distraction is the last step we have to take before we all get to come home. (And just so everyone knows the pictures on the internet actually look alot worse than his actually does there is only one small flexible screw that comes out near each ear that they turn each day. We were so happy when we saw that :) ).
Todays surgery went pretty well. They took him back about 715 and were done around 11. They were able to get an iv and avoid a central line (which the nurses werent happy about bc hes a hard stick and the ivs in babies only last a couple of days, but I dont think that he should have something like that just to make their job easier either). And putting in the distractor went well. Because he is quite swollen at this point he came back up to the NICU on a vent, so they will keep him pretty sedated over the next few days until this is able to come out. The distractor itself moved the jaw forward about 1 mm today and then they will start turning the device tomorrow and continue over the next few weeks to get his jaw out far enough to where he can breathe on his own. Older kids have said that the only painful part of the process is the actual surgery so that is good for us to know that he wont be in alot of constant pain over the next few weeks, but he will probably have some tylenol prn in case he does show some signs of pain or discomfort. Hopefully the distraction is the last step we have to take before we all get to come home. (And just so everyone knows the pictures on the internet actually look alot worse than his actually does there is only one small flexible screw that comes out near each ear that they turn each day. We were so happy when we saw that :) ).
Saturday, June 4, 2011
June 2 & 3, 2011
6/2
Not a whole lot happened on Thursday. Mainly some preop lab work for his surgery on Friday. The ENT did come by, at the perfect time (during one of Tripp's episodes where he has trouble breathing and you can hear him rattling louder--these dont happen very often), and decided that as he was being put to sleep the next morning for his gtube surgery that he would do an endoscopy to look at if his airway is being cut off while he is asleep. This has been done while he has been awake in his bed, but everything changes while hes asleep and without anesthesia its impossible to keep him asleep while doing it. Tripp would also become NPO at midnight tonight.
6/3
They were unable to get an IV on him to give him any fluids, so they gave him pedialyte until 3am. His surgery was delayed because they were running late and they didn't take him back until 1245 to the OR. They were able to get him to sleep just fine so the ENT looked down his throat and determined that most of the time he is able to keep a small opening in the back of his throat but there are times where it is completely cut off by his tongue as well. He said hes not sure but hes probably just getting tired and letting his tongue go completely back. Because of this he is not safe to go home to sleep at home at the time and he recommeded that he either needs the trach, or the jaw distraction (sorry guys one of the residents had told me before it was extraction but thats wrong). We obviously do not want Tripp to have a trach put in, it was the reason we brought Tripp to this hospital. Other than this news his surgery went great, they were able to extubate him in recovery, which is always good since with alot of babies this is the hardest part for them. He came back up to his room and hes getting fluids and fentenyl (4 micrograms/hour) by IV. When they see signs that he isnt hurting as much they will start to wean the fentenyl and the fluids will start to be decreased when he gets to start to eat again. The Plastic Surgeon also came by and said that he had talked with the ENT and he has put Tripp on the schedule for the jaw distraction for the 14th (he is out of town next week) but he also said that if somehow he does open his airway enough to come home next week that he would just come home and be taken off of the schedule. I hope that he does just get better and gets to come home, but I guess we will wait and see because really theres only one person who knows what will happen and its none of us.
Not a whole lot happened on Thursday. Mainly some preop lab work for his surgery on Friday. The ENT did come by, at the perfect time (during one of Tripp's episodes where he has trouble breathing and you can hear him rattling louder--these dont happen very often), and decided that as he was being put to sleep the next morning for his gtube surgery that he would do an endoscopy to look at if his airway is being cut off while he is asleep. This has been done while he has been awake in his bed, but everything changes while hes asleep and without anesthesia its impossible to keep him asleep while doing it. Tripp would also become NPO at midnight tonight.
6/3
They were unable to get an IV on him to give him any fluids, so they gave him pedialyte until 3am. His surgery was delayed because they were running late and they didn't take him back until 1245 to the OR. They were able to get him to sleep just fine so the ENT looked down his throat and determined that most of the time he is able to keep a small opening in the back of his throat but there are times where it is completely cut off by his tongue as well. He said hes not sure but hes probably just getting tired and letting his tongue go completely back. Because of this he is not safe to go home to sleep at home at the time and he recommeded that he either needs the trach, or the jaw distraction (sorry guys one of the residents had told me before it was extraction but thats wrong). We obviously do not want Tripp to have a trach put in, it was the reason we brought Tripp to this hospital. Other than this news his surgery went great, they were able to extubate him in recovery, which is always good since with alot of babies this is the hardest part for them. He came back up to his room and hes getting fluids and fentenyl (4 micrograms/hour) by IV. When they see signs that he isnt hurting as much they will start to wean the fentenyl and the fluids will start to be decreased when he gets to start to eat again. The Plastic Surgeon also came by and said that he had talked with the ENT and he has put Tripp on the schedule for the jaw distraction for the 14th (he is out of town next week) but he also said that if somehow he does open his airway enough to come home next week that he would just come home and be taken off of the schedule. I hope that he does just get better and gets to come home, but I guess we will wait and see because really theres only one person who knows what will happen and its none of us.
Thursday, June 2, 2011
June 1, 2011
Today Tripp's surgery was scheduled for his gtube for friday, we wont know what time on friday until later Thursday. The surgery can be done laproscopically since he is a good size. The actual surgery will take around 2 hours not including the prep and recover time. After this surgery, if something is still wrong with his airway the neonatologist said they would go to ENT and Plastics and say look he needs to be evaluated more closely because this is the only thing that is keeping him from going home. Im hoping and praying that his airway will be better after the surgery because if it does come to him having the jaw extraction then he would be here for several months, so Im hoping and praying that this will not be the case. We also found out the results of his hearing test, it came back that Tripp has some mild to moderate hearing loss in both ears that is permanent because the damage was done to the nerve. He will need hearing aids the rest of his life for him to hear normally. The audiologist also said that she wanted to find us someone who he could see in Roanoke, because with us being out of state she wasn't positive if our insurance would pay for the hearing aids and they can be quite expensive, and that she would also like the test to be repeated in a month or so.
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