This morning, Avi's girth is a little bit bigger. They had finally started her on my milk Tuesday evening, but had to stop while she had her blood transfusion yesterday (this is standard). They started her back up after the transfusion. They had an x-ray of her tummy taken today. Fortunately, it came back looking good, so they are continuing her on my milk. When they measured her girth in the afternoon, it was a littler smaller. She still has not had any bowel movement, so they're continuing with the suppository!
We saw Avi sneeze for the first time tonight. It feels like a big milestone in our eyes. Avi weighed a whopping 1 lb 13 oz tonight. Only 3 more ounces until she's 2 pounds! She's getting to be such a big girl!
Deacon had a follow-up echocardiogram this afternoon. We're THRILLED that it showed his PDA has closed. There is still a chance that it could re-open. He needs to be off the medication for 48 hours before they start him back on my milk. Hopefully they'll be able to start it back up sometime late tomorrow afternoon.
The respiratory therapists take him off his CPAP for breaks during his care times. Normally, he doesn't do well, but the nurse and respiratory therapist were pretty pleased with him (he didn't have too many desats). Slowly, we seem to be making some progress.
Deacon weighed in at 1 lb 8 oz.
Thursday, July 30, 2009
Wednesday, July 29, 2009
28 Weeks Gestation
Another blood transfusion is in progress for Avigail and Deacon. However, to our surprise, when showed up at the hospital for the evening visit we were very please to find out that we could hold Avi and Deacon. After three weeks, Tyler was finally able to hold his son (outside the incubator) for the first time. The couple of hours of cuddle time was priceless. After I put Avi back in her isolate, I peeked over at my boys to find them both completely passed out. I think it was some much needed snuggling and bonding time. It still amazes me how well they do when we're holding them. Their oxygen levels are really good and they don't really have any desats.
Mom and Avigail
Dad and Deacon
Deacon with Mom's ring
Deacon with Dad's ring
If the kids were still in my belly:
Let your spouse put an ear to your belly -- he might be able to pick up the babies heartbeat (no stethoscope required). Inside the womb, the formation of tiny capillaries is giving baby a healthy pink glow. Baby's also soaking up your antibodies, getting the immune system ready for life outside the womb. Eyes are forming, and baby will soon perfect the blink -- perfect for batting those freshly grown lashes.
Tuesday, July 28, 2009
3 Weeks Old
Avi and Deacon have made it to three weeks today. The neonatologists are telling us that they won't be going before my due date (October 21). So, we still have another 12+ weeks at the hospital.
Deacon had his echo cardiogram done this morning, and like his sister, his PDA has not closed completely either. Fortunately, it has gotten smaller (he's still on the CPAP). He continued to multiple apnea events throughout the day, so they started him on a second round of medication. They will give him up to 3 rounds of medication before they would do surgery to clamp the valve.
You can tell they're definitely twins! Not only did they both need medication for treatment of the PDA, but their oxygen levels are pretty similar. If one drops, the other does too (usually to the same number). The nurses chuckle because once they walk over to one of the alarms, the other starts to alarm! Avigail and Deacon are definitely making the nurses work for their paycheck!
Deacon had his echo cardiogram done this morning, and like his sister, his PDA has not closed completely either. Fortunately, it has gotten smaller (he's still on the CPAP). He continued to multiple apnea events throughout the day, so they started him on a second round of medication. They will give him up to 3 rounds of medication before they would do surgery to clamp the valve.
You can tell they're definitely twins! Not only did they both need medication for treatment of the PDA, but their oxygen levels are pretty similar. If one drops, the other does too (usually to the same number). The nurses chuckle because once they walk over to one of the alarms, the other starts to alarm! Avigail and Deacon are definitely making the nurses work for their paycheck!
Monday, July 27, 2009
We're Growing
Avigail had her echo cardiogram done this morning. The results showed that her PDA had not closed completely, but had gotten smaller. At this point, we'll just have to wait and see what the next steps are (she's still on the ventilator). If she isn't having apnea events, they probably won't address it.
They weigh the kids every night, however on Monday evenings, they also measure the kids length and head circumfrence.
Avigail - 1 lb 11.2 oz and 13.1" long
Deacon - 1 lb 7.3 oz and 13.2" long
They weigh the kids every night, however on Monday evenings, they also measure the kids length and head circumfrence.
Avigail - 1 lb 11.2 oz and 13.1" long
Deacon - 1 lb 7.3 oz and 13.2" long
Sunday, July 26, 2009
It's All About the PDA
Deacon had to take all the attention away from Avi today and start getting doses of indomethacin to treat his PDA as well. After doing another echo cardiogram on him this morning, the results showed that he still had a large opening. The doctor decided that his recent low blood pressure and a couple other minor factors were attributing to his PDA having not yet closed up. D started on the meds this afternoon and will have a follow up echo cardiogram on Tuesday to see if the meds worked.
Indomethacin is really tough on the gut, so they stopped any feedings during treatment. They typically keep them off food for 24-48 hours after he stops taking the medication.
The doctors are pleased with how Avigail reacted to the indomethacin. She had the last dose this morning at 11 a.m. She has been having less apnea events hopefully indicating closure of the PDA valve. She'll have another echo cardiogram tomorrow morning to see if her PDA has closed.
Indomethacin is really tough on the gut, so they stopped any feedings during treatment. They typically keep them off food for 24-48 hours after he stops taking the medication.
The doctors are pleased with how Avigail reacted to the indomethacin. She had the last dose this morning at 11 a.m. She has been having less apnea events hopefully indicating closure of the PDA valve. She'll have another echo cardiogram tomorrow morning to see if her PDA has closed.
Tyler's new tattoo's
Saturday, July 25, 2009
Precious Girl & Handsome Man
As I mentioned yesterday, Avi had an echo cardiogram done and it showed that the PDA has not yet closed. The doctor had hoped that by re-intubating her, she would not desat (apnea episodes). However, her desats continued throughout the day yesterday and throughout last night. Her blood pressure also began to drop. The doctor felt that the issues she was having were attributed to her PDA still being open. Therefore, they decided to start her on medication this morning which is supposed to help close the PDA. She will get three doses (began at 11 a.m. today) every twelve hours and then have another echo cardiogram done on Monday to see if it closed. The good news is that once she started the meds this morning, her desats stopped. She was wide awake tonight while I changed her, took her temp, weighed her and just sat by her bedside. She is such a precious little girl.
Deacon's has been having some minor episodes of puking. His milk amount had gone up from .9 ml/hour yesterday to 1.6 ml/hour today. The nurse put him on his tummy and once she did, he stopped the puking. Maybe this kid will love tummy time! They checked his tummy tonight to see if he was digesting the milk and they weren't able to pull much out. They're not sure where the puking episode came from. Hopefully it will resolve itself. His diaper was proof that he's been digesting it too:-). Deacon isn't a fan of his changing time, but he's still such a handsome little man!
Deacon's has been having some minor episodes of puking. His milk amount had gone up from .9 ml/hour yesterday to 1.6 ml/hour today. The nurse put him on his tummy and once she did, he stopped the puking. Maybe this kid will love tummy time! They checked his tummy tonight to see if he was digesting the milk and they weren't able to pull much out. They're not sure where the puking episode came from. Hopefully it will resolve itself. His diaper was proof that he's been digesting it too:-). Deacon isn't a fan of his changing time, but he's still such a handsome little man!
Friday, July 24, 2009
Avigail = Ventilator
Today was a bit of a rough day for Avigail as she was put back on the ventilator. While this wasn't a huge surprise to us, it is still a bit upsetting having to see her go through all of this. They then had to do an x-ray to make sure the endotracheal tube was placed appropriately. They also did an echocardiogram on her to see if her patent ductus arteriosus (PDA) had closed. It still has not closed, but her heart appears to look good so they don't believe that that is contributing to her increased work of breathing that she was doing the past few days. After being intubated this morning, her events decreased quite a bit. She did have one event of apnea while Tyler and I were there tonight. It's always so nerve racking to sit through. Avi weighed in at 1 lb 9 oz.
Deacon has been doing fairly well and is still on the CPAP. Their only concern for him for the time being is his weight as it has dropped down to 1 lb 6 oz. He's been on my milk for 5 full days now and is digesting it well. No one really seems to have any answers as to why he's lost weight. They'll monitor it over the next week or so before they get overly concerned.
Deacon has been doing fairly well and is still on the CPAP. Their only concern for him for the time being is his weight as it has dropped down to 1 lb 6 oz. He's been on my milk for 5 full days now and is digesting it well. No one really seems to have any answers as to why he's lost weight. They'll monitor it over the next week or so before they get overly concerned.
Thursday, July 23, 2009
Tyler's First Day Back To Work
Today is Tyler's first day back at work. We stayed up at the hospital last night so he could say good morning to Avi and Deacon before heading back to work. When we got to the NICU this morning, Deacon was waiting for him to change his nice BIG poopy diaper. As Tyler was changing him, he was still pooping, so he went through two diapers this morning! Tyler and I were both pleased because his digestive system seems to be digesting my milk just fine :-).
Avi was put back on the CPAP this morning. Since she's been back on the CPAP, her apnea events have stopped. The doctors are pretty amazed that she went 16 days off the ventilator. They will also be giving her her first blood transfusion this afternoon.
Avi's digestion seems to be doing well. We're waiting for the surgeon to review her this afternoon and then the neonatologist will make a decision as to whether or not to put her back on my milk.
Avi was put back on the CPAP this morning. Since she's been back on the CPAP, her apnea events have stopped. The doctors are pretty amazed that she went 16 days off the ventilator. They will also be giving her her first blood transfusion this afternoon.
Avi's digestion seems to be doing well. We're waiting for the surgeon to review her this afternoon and then the neonatologist will make a decision as to whether or not to put her back on my milk.
Avigail on CPAP
Deacon on CPAP
Wednesday, July 22, 2009
A Good Day
Today was another good day for both our kiddos. Avi passed some more meconium (poop) without having to get another enema. They still have her on suppositories, but I think the doctors are pleased with her digestive progress. She is having more apnea events, so they may put her back on the ventilator.
D-man was taken off the ventilator today. He's still working pretty hard on his breathing, but so far he's managing. They also took out his arterial line (they used for drawing blood) which is a good sign. Now that his lungs seemed to have healed (for the time being) and his gas levels have been good, they don't feel that they'll need to draw as much blood from him. He's definitely looking better now that he's not hooked up to so much "stuff".
D-man was taken off the ventilator today. He's still working pretty hard on his breathing, but so far he's managing. They also took out his arterial line (they used for drawing blood) which is a good sign. Now that his lungs seemed to have healed (for the time being) and his gas levels have been good, they don't feel that they'll need to draw as much blood from him. He's definitely looking better now that he's not hooked up to so much "stuff".
Tuesday, July 21, 2009
2 Weeks Old
Avi had a "contrast study" done this afternoon (similar to an enema) and later in the evening, she finally passed a little meconium (her first real stool). The hospital refers to this as a "smear". They did an x-ray of her tummy after the procedure and it looked better. It's so refreshing for her to finally have some movement. I never thought I'd say that about my daughter pooping.
They turned up her vapotherm today as she's been having more and more episodes of apnea. Turning up the vapotherm seemed to help as the number of events decreased. They won't become overly concerned about her apnea unless it starts occurring more than once an hour. However, during the evening rounds the doctor said not to be surprised if she had to go back on the ventilator. She's been working her little lungs quite a bit these past two weeks and so she's probably starting to get tired. For as early as she came, the fact that she's even gone this long without a ventilator is amazing.
The doc was able to drop Deacon's settings on the ventilator. His blood gas levels have been doing pretty well the last couple of days. They gave him a steroid this morning to help with the swelling he has had in his lungs and throat. They are hoping to give him another steroid tomorrow and then may try and take him off the ventilator. They had told us that they would be very conservative in taking him off, so we feel like progress is being made if they're even considering it.
Deacon has also been getting .4ml/hour of my breast milk. This is day two and it appears that he's digesting it well. Sounds like they'll double his serving portion tomorrow if all continues to go well!
After 14 days, I finally got to hold my son. He must have been pretty cozy curled up on my chest because he was sawing logs! Just like sister, he did really well. Since birth, I have been waiting for the moment when I finally get to hold my kids and just snuggle. I can't wait to be able to do this the rest of their life. Or at least until it's no longer "cool" to cuddle with your mom :-).
They both got swaddled last night for the first time. They use a little onesie to wrap around them. They only wrap their upper body and tuck in their arms because they still have the temperature probe on them and if they cover it up, it shows them being warmer than they really are.
Deacon continues to open his eyes and Avi looks like she's pretty close. They weren't still fused shut last night. Maybe she'll surprise us today! They both also love putting their hands in their mouth now. The nurse had told us that she had even seen Avi sucking her thumb!
PS A LAST MINUTE ADDITION FROM GRANDMA K! - The best part of the day was Janet and Rennie met Tami and Tyler for lunch. They both seemed good and then asked if we wanted to see the babies! Mmmmm....let us think! We got to go up for about an hour and just stare at these amazing little miracles! Neither of us had seen them for two weeks, and then just for a couple of minutes, so it was pretty incredible. Interesting how much their features have changed. You could see half of Avi's face (she was sleeping on her tummy) and although her hands are definitely VERY TINY, she has very long fingers. Her hands and fingers together are probably no more than 3/4 of an inch, if that...probably less than the size of 1/2 a postage stamp! They had taken Deacon off the respirator and are hoping that he will be able to stay off it and just be on CPAP, although there is a strong possibility he might eventually have to go back on. They want him to give his lungs a work out on his own as much as possible.
They turned up her vapotherm today as she's been having more and more episodes of apnea. Turning up the vapotherm seemed to help as the number of events decreased. They won't become overly concerned about her apnea unless it starts occurring more than once an hour. However, during the evening rounds the doctor said not to be surprised if she had to go back on the ventilator. She's been working her little lungs quite a bit these past two weeks and so she's probably starting to get tired. For as early as she came, the fact that she's even gone this long without a ventilator is amazing.
The doc was able to drop Deacon's settings on the ventilator. His blood gas levels have been doing pretty well the last couple of days. They gave him a steroid this morning to help with the swelling he has had in his lungs and throat. They are hoping to give him another steroid tomorrow and then may try and take him off the ventilator. They had told us that they would be very conservative in taking him off, so we feel like progress is being made if they're even considering it.
Deacon has also been getting .4ml/hour of my breast milk. This is day two and it appears that he's digesting it well. Sounds like they'll double his serving portion tomorrow if all continues to go well!
After 14 days, I finally got to hold my son. He must have been pretty cozy curled up on my chest because he was sawing logs! Just like sister, he did really well. Since birth, I have been waiting for the moment when I finally get to hold my kids and just snuggle. I can't wait to be able to do this the rest of their life. Or at least until it's no longer "cool" to cuddle with your mom :-).
They both got swaddled last night for the first time. They use a little onesie to wrap around them. They only wrap their upper body and tuck in their arms because they still have the temperature probe on them and if they cover it up, it shows them being warmer than they really are.
Deacon continues to open his eyes and Avi looks like she's pretty close. They weren't still fused shut last night. Maybe she'll surprise us today! They both also love putting their hands in their mouth now. The nurse had told us that she had even seen Avi sucking her thumb!
PS A LAST MINUTE ADDITION FROM GRANDMA K! - The best part of the day was Janet and Rennie met Tami and Tyler for lunch. They both seemed good and then asked if we wanted to see the babies! Mmmmm....let us think! We got to go up for about an hour and just stare at these amazing little miracles! Neither of us had seen them for two weeks, and then just for a couple of minutes, so it was pretty incredible. Interesting how much their features have changed. You could see half of Avi's face (she was sleeping on her tummy) and although her hands are definitely VERY TINY, she has very long fingers. Her hands and fingers together are probably no more than 3/4 of an inch, if that...probably less than the size of 1/2 a postage stamp! They had taken Deacon off the respirator and are hoping that he will be able to stay off it and just be on CPAP, although there is a strong possibility he might eventually have to go back on. They want him to give his lungs a work out on his own as much as possible.
Mom getting in her first kangaroo session with Deacon
Avigail resting peacefully
Monday, July 20, 2009
More Than Two Johnson's
Avi received a saline flush today to try and help with her bowel movement. Unfortunately, she hasn't had any movement since the other morning. Lets keep our fingers crossed that this girl has more movement!
Tyler finally got to hold his little girl for about 2 hours tonight. The look on his face was all it took to truely know how happy he was to have her in his arms! They made quite the team taking a nap together!
We were hoping to be able to hold Deacon as well, but they moved his PICC line from his arm to his leg. This is an arterial line that is used for measuring blood pressure and for drawing blood. It is also used to keep an eye on his levels of crucial substances like O2, CO2, and calcium. They typically only like to have one event a day occur as the babies use a lot of calories with movements. They want them to try and save as many calories as possible so they continue to grow.
They also started Deacon back on my breast milk this morning (via feeding tube). When they checked his stomach tonight, he had no residual of milk so he seems to be digesting it all. He weighed in at 1 lb 9 oz tonight. His gas levels continue to be good.
PS - An added note from Grandma K...to Tami and Tyler's credit, the nurses said they seem to be handling things extremely well. They said it is not unusual for couples to have issues with the nurses and care and they have to continually change around the nursing staff to accommodate the couple. Also, grandparents sometimes give them a lot of problems (can you imagine that). So it is nice to know that they have been able to stay on incredibly stable footing and devotion to each other and the babies with all they have been through and also know that the grandparents have not caused trouble yet :-).
Also, there are now two other Johnson babies in the NICU (two families, each with one baby), so it is more difficult when a technician comes in and wants to do something on "Johnson Baby Baby"! Lots of double checking going on!
Tyler finally got to hold his little girl for about 2 hours tonight. The look on his face was all it took to truely know how happy he was to have her in his arms! They made quite the team taking a nap together!
We were hoping to be able to hold Deacon as well, but they moved his PICC line from his arm to his leg. This is an arterial line that is used for measuring blood pressure and for drawing blood. It is also used to keep an eye on his levels of crucial substances like O2, CO2, and calcium. They typically only like to have one event a day occur as the babies use a lot of calories with movements. They want them to try and save as many calories as possible so they continue to grow.
They also started Deacon back on my breast milk this morning (via feeding tube). When they checked his stomach tonight, he had no residual of milk so he seems to be digesting it all. He weighed in at 1 lb 9 oz tonight. His gas levels continue to be good.
PS - An added note from Grandma K...to Tami and Tyler's credit, the nurses said they seem to be handling things extremely well. They said it is not unusual for couples to have issues with the nurses and care and they have to continually change around the nursing staff to accommodate the couple. Also, grandparents sometimes give them a lot of problems (can you imagine that). So it is nice to know that they have been able to stay on incredibly stable footing and devotion to each other and the babies with all they have been through and also know that the grandparents have not caused trouble yet :-).
Also, there are now two other Johnson babies in the NICU (two families, each with one baby), so it is more difficult when a technician comes in and wants to do something on "Johnson Baby Baby"! Lots of double checking going on!
One little princess
Dad and Avi's first bonding session!
Update From Grandma K.
Since I didn't get a written update from Tami today, I will give you the information she gave me when we talked last night.
Deacon had his chest tube removed yesterday and they were beginning to decrease the amount of oxygen provided to him by the respirator. If he continues to be stable over the next 24-48 hours, there was a possibility they might be able to hold him, even if he were still on the respirator! I think they were trying to be conservative about taking him off the respirator this time. His echocardiogram came back with a moderate-large opening in the patent ductus arteriosus (PDA). It is my understanding that they are not planning on doing anything at this point in time. I assume they are still hoping it will close on its own. If not, and it gives him problems, the next step would be medication to help it close. As a last resort, they would do surgery.
Avi continues to remain fairly stable. They were not able to hold her last night as they only like that to happen 2-3 times a week. It apparently burns a lot of calories and they like to put those toward growth. Hopefully Tyler will be able to hold her either tonight or tomorrow. She does have a heart murmur too, so they think she probably has PDA (which is not unusual for preemies), but feel it is probably smaller than Deacon's and they are not planning on doing an echocardiogram unless she runs into problems.
Tyler has decided not to go back to work now until Thursday. The two of them appear to be doing incredibly well. It is hard on the rest of us not being able to spend time with them or the babies, but we do understand that they are using all their energy and strength just taking care of themselves and spending time with their babies. Tami has been very good about updating us every night and e-mailing and texting during the day if necessary. They were able to go back home Saturday which I imagine felt wonderful and they are planning on staying there most nights now. They can stay at the hospital two nights a week, which they will probably continue to do as it makes it so much more convenient to spend time with the twins.
We appreciate all the wonderful notes, good wishes, and prayers we have received from so many. It has meant a lot to know what a strong support system there is for these two little babies and their family. Thank you to everyone!
~Grandma K.
Deacon had his chest tube removed yesterday and they were beginning to decrease the amount of oxygen provided to him by the respirator. If he continues to be stable over the next 24-48 hours, there was a possibility they might be able to hold him, even if he were still on the respirator! I think they were trying to be conservative about taking him off the respirator this time. His echocardiogram came back with a moderate-large opening in the patent ductus arteriosus (PDA). It is my understanding that they are not planning on doing anything at this point in time. I assume they are still hoping it will close on its own. If not, and it gives him problems, the next step would be medication to help it close. As a last resort, they would do surgery.
Avi continues to remain fairly stable. They were not able to hold her last night as they only like that to happen 2-3 times a week. It apparently burns a lot of calories and they like to put those toward growth. Hopefully Tyler will be able to hold her either tonight or tomorrow. She does have a heart murmur too, so they think she probably has PDA (which is not unusual for preemies), but feel it is probably smaller than Deacon's and they are not planning on doing an echocardiogram unless she runs into problems.
Tyler has decided not to go back to work now until Thursday. The two of them appear to be doing incredibly well. It is hard on the rest of us not being able to spend time with them or the babies, but we do understand that they are using all their energy and strength just taking care of themselves and spending time with their babies. Tami has been very good about updating us every night and e-mailing and texting during the day if necessary. They were able to go back home Saturday which I imagine felt wonderful and they are planning on staying there most nights now. They can stay at the hospital two nights a week, which they will probably continue to do as it makes it so much more convenient to spend time with the twins.
We appreciate all the wonderful notes, good wishes, and prayers we have received from so many. It has meant a lot to know what a strong support system there is for these two little babies and their family. Thank you to everyone!
~Grandma K.
Sunday, July 19, 2009
Never So Pleased To See Bowel Movement
Avigail finally has some bowel movement in the morning. The doctor is going to continue with the suppositories (instead of the enema) for the time being. It sounds like the doctor wants her to pass some gas before they put her back on my milk.
After a few rough days, Deacon finally had a good day. The doctor took out his chest tube this afternoon (Sunday) and his gas levels seem to be doing well. They also replaced his 2.0 breathing tube to a 2.5 breathing tube. The difference between these two tubes is the size. His throat had gotten pretty swollen and so when he was put back on a ventilator, they had to put a small tube in so it would fit. The problem with the smaller tube is that they often get kinks and can make it more difficult for them to breathe. Since they have put in the bigger tube, his breathing seems to have gotten better.
After a few rough days, Deacon finally had a good day. The doctor took out his chest tube this afternoon (Sunday) and his gas levels seem to be doing well. They also replaced his 2.0 breathing tube to a 2.5 breathing tube. The difference between these two tubes is the size. His throat had gotten pretty swollen and so when he was put back on a ventilator, they had to put a small tube in so it would fit. The problem with the smaller tube is that they often get kinks and can make it more difficult for them to breathe. Since they have put in the bigger tube, his breathing seems to have gotten better.
Saturday, July 18, 2009
They Call It Kangaroo Care
Deacon is still having issues with the leak in his lung. In a recent x-ray, the doctor found yet another pocket of air outside of his left lung. They had to reopen the tube between his lung and cavity wall (they had clamped this on Friday) as pockets of air are still accumulating. The tube that they had put in him did not reach to this pocket, so they had to go in with a needle to remove the air. After removing it, his blood pressure dropped significantly. Low blood pressure may signal that he is dehydrated or anemic and needs more fluid or blood. The doctor felt it was necessary for Deacon to have another blood transfusion, so this happened last night (Saturday). When we left the hospital last night (around 11 p.m.), his blood pressure was getting a little better. After three nights of not weighing him, he weighed in a 1 lb 7 oz last night, so he is increasing his weight from a low of 1 lb 5 oz.
And for the best news yet, 12 days after birth and I finally got to hold Miss Avigail (aka Peanut). They call this kangaroo care, holding your naked preemie (although she has a diaper on) against my warm naked chest. Research has shown that a baby up against the heat of their parents' bodies maintain their body temperature as well or better than in an incubator. They are less likely to cry, have less apnea, higher levels of oxygen saturation, and a more restful sleep. All of this seemed true when I was holding her. Typically, they like you to only have them out of the incubator for around an hour so. However, Avi was doing so well that I got to hold her for almost two hours! It was the most amazing feeling ever, words can't even describe it!
Avigail weighed 1 lb 8 oz, finally surpassed her birth weight!
And for the best news yet, 12 days after birth and I finally got to hold Miss Avigail (aka Peanut). They call this kangaroo care, holding your naked preemie (although she has a diaper on) against my warm naked chest. Research has shown that a baby up against the heat of their parents' bodies maintain their body temperature as well or better than in an incubator. They are less likely to cry, have less apnea, higher levels of oxygen saturation, and a more restful sleep. All of this seemed true when I was holding her. Typically, they like you to only have them out of the incubator for around an hour so. However, Avi was doing so well that I got to hold her for almost two hours! It was the most amazing feeling ever, words can't even describe it!
Avigail weighed 1 lb 8 oz, finally surpassed her birth weight!
Avi's little hand grabbing ahold of Mom's finger
Mom and Avi getting in our first bonding session
Friday, July 17, 2009
Bring On The Saline Flush
Avigail continues to have issues with her tummy and still has not had any bowel movements. The nurse spoke with us this evening about possibly doing an enema type procedure or saline flush to help. The last couple of times the nurses have listened to her stomach, they claim to hear rumbling noises which is a good thing. The surgeon monitors her daily and I'm sure it will be a last minute decision as to when they do the procedure.
She was back to her birth weight (1 lb 7 oz) tonight. She continues to suck on her pacifier and make many facial expressions! She still hasn't opened her eyes, but seems like she's close.
Deacon had his chest tube clamped today. They will monitor his breathing over the next day or two before they remove the tube. He seems fairly stable for today. His blood gas levels (ph, CO2, O2, and glucose) are getting better, although they are still not perfect. They are also going to be pretty conservative before they decide to take him off the respirator again since he's had so many problems with his breathing.
Deacon also had an echocardiogram (ultrasound of the heart) done today because he has a heart murmur. The echocardiogram was done to see if the ductus arteriosus, a fetal blood vessel near the heart, which is supposed to close in the first few days of birth, remains open. If it hasn't yet closed, this increases his risk of lung damage and puts strain on his heart. If it hasn't closed, this could also be a reason as to why he's having trouble breathing on his own. They typically try to use medication first to see if that will close it. If not, they will have to do surgery.
They haven't weighed Deacon the past three nights because of the tube in his chest. They want to try and move him as little as possible so they don't make him any more uncomfortable than he probably already is. He has been quite the trooper and fighter!
She was back to her birth weight (1 lb 7 oz) tonight. She continues to suck on her pacifier and make many facial expressions! She still hasn't opened her eyes, but seems like she's close.
Deacon had his chest tube clamped today. They will monitor his breathing over the next day or two before they remove the tube. He seems fairly stable for today. His blood gas levels (ph, CO2, O2, and glucose) are getting better, although they are still not perfect. They are also going to be pretty conservative before they decide to take him off the respirator again since he's had so many problems with his breathing.
Deacon also had an echocardiogram (ultrasound of the heart) done today because he has a heart murmur. The echocardiogram was done to see if the ductus arteriosus, a fetal blood vessel near the heart, which is supposed to close in the first few days of birth, remains open. If it hasn't yet closed, this increases his risk of lung damage and puts strain on his heart. If it hasn't closed, this could also be a reason as to why he's having trouble breathing on his own. They typically try to use medication first to see if that will close it. If not, they will have to do surgery.
They haven't weighed Deacon the past three nights because of the tube in his chest. They want to try and move him as little as possible so they don't make him any more uncomfortable than he probably already is. He has been quite the trooper and fighter!
Thursday, July 16, 2009
Ticking Time Bomb
Avi took a pacifier for the first time during the afternoon. I think it's the smallest pacifier I've ever seen (although it still looks a bit big for her!). She even seems to be sucking on it and when it's not in her mouth, she's been sucking on the feeding tube that's going down her throat! The nurses like giving them these early as it helps with her sucking as well as they prevent them from swallowing additional air. We even think we got a couple of smiles from her tonight!
Deacon's blood gas levels (specifically his carbon dioxide) were pretty stable. They like to try and leave him alone so he can get as much sleep as possible and save his energy. He continues to open his big brown eyes when we're by his bedside. It's still tough seeing him hooked up to so many tubes and IV's.
When we were in the NICU tonight, Deacon had a nurse that we hadn't yet met. She had told me that the NICU referred to me as the "ticking time bomb" when I was on bedrest in the antipartum unit. She said that the incubators had been waiting for both Avi and Deacon from the day I was admitted. For the first time since their birth, I felt like I did something for the kiddos. I was able to hold out 5 days from when my labor started! A big accomplishment since the doctors told us I would be delivering the night I was admitted.
Deacon's blood gas levels (specifically his carbon dioxide) were pretty stable. They like to try and leave him alone so he can get as much sleep as possible and save his energy. He continues to open his big brown eyes when we're by his bedside. It's still tough seeing him hooked up to so many tubes and IV's.
When we were in the NICU tonight, Deacon had a nurse that we hadn't yet met. She had told me that the NICU referred to me as the "ticking time bomb" when I was on bedrest in the antipartum unit. She said that the incubators had been waiting for both Avi and Deacon from the day I was admitted. For the first time since their birth, I felt like I did something for the kiddos. I was able to hold out 5 days from when my labor started! A big accomplishment since the doctors told us I would be delivering the night I was admitted.
Wednesday, July 15, 2009
Is That You Dad?
Deacon still has the leak in his left lung and air is still accumulating outside the lung. They went in yesterday (Tuesday) afternoon and inserted the chest tube. They will keep this tube in him until his lung heals.
They have been monitoring his blood gas levels, specifically the carbon dioxide. This is important because it indicates whether he needs help with his breathing. Typically they like this number to be between 35-45. This morning (Wednesday), Deacon's was 98. They had made a few changes to his respirator settings and the 4 p.m. reading had dropped back down to 51. The doctor seemed pleased with this number. The poor guy seems so worn out. He has so many tubes and IV's hooked up to him. They took his carbon dioxide levels around 10 p.m. and unfortunately, his levels had gone back into the 90's. They ordered another chest x-ray to be sure the chest tube is still in the right place.
Deacon also had to have a blood transfusion this evening. It runs over a 4 hour period. Many preemies, especially those on ventilators or receiving intravenous nutrition, have blood drawn frequently to monitor their blood chemistry's. All of these draws deplete the number of circulating blood cells. Because a premature baby's bone marrow, which is responsible for making more blood cells, is still immature, it usually can't replace them fast enough. Red blood cells deliver oxygen throughout the body, so without enough of them, his tissues won't get the oxygen they need to function and grow. He did great with the transfusion. D-man has been through quite a bit the past few days. It is so hard as we feel so helpless as parents. We're trying to be with the kids every waking minute. We just can't get enough of our little ones.
To end on a positive note, we did see Deacon open his eyes today and he stared at Tyler and knew exactly who he was. It was such a miraculous moment, one that I don't think I will ever forget.
As for Avigail, she's doing fairly well. She has yet to open her eyes, but she is yawning and when we took the blanket off her incubator she squinted her face. She is still having issues with her digestion, but they are continuing to give her suppositories to hopefully help.
They have been monitoring his blood gas levels, specifically the carbon dioxide. This is important because it indicates whether he needs help with his breathing. Typically they like this number to be between 35-45. This morning (Wednesday), Deacon's was 98. They had made a few changes to his respirator settings and the 4 p.m. reading had dropped back down to 51. The doctor seemed pleased with this number. The poor guy seems so worn out. He has so many tubes and IV's hooked up to him. They took his carbon dioxide levels around 10 p.m. and unfortunately, his levels had gone back into the 90's. They ordered another chest x-ray to be sure the chest tube is still in the right place.
Deacon also had to have a blood transfusion this evening. It runs over a 4 hour period. Many preemies, especially those on ventilators or receiving intravenous nutrition, have blood drawn frequently to monitor their blood chemistry's. All of these draws deplete the number of circulating blood cells. Because a premature baby's bone marrow, which is responsible for making more blood cells, is still immature, it usually can't replace them fast enough. Red blood cells deliver oxygen throughout the body, so without enough of them, his tissues won't get the oxygen they need to function and grow. He did great with the transfusion. D-man has been through quite a bit the past few days. It is so hard as we feel so helpless as parents. We're trying to be with the kids every waking minute. We just can't get enough of our little ones.
To end on a positive note, we did see Deacon open his eyes today and he stared at Tyler and knew exactly who he was. It was such a miraculous moment, one that I don't think I will ever forget.
As for Avigail, she's doing fairly well. She has yet to open her eyes, but she is yawning and when we took the blanket off her incubator she squinted her face. She is still having issues with her digestion, but they are continuing to give her suppositories to hopefully help.
Dad peaking on Avigail
Deacon holding Dad's hand while getting a blood transfusion
Were We On A Honeymoon?
Janet and Andrew just had lunch with Tami and Tyler. They seem to be doing pretty well and it was nice to be able to give them both big hugs. They even seemed to perk up a little more after eating:-) They had been up to the NICU to drop off some milk and say good morning to the twins and then they were going back up to spend a longer period of time with them after we left.
Avigail has stayed pretty constant for the past few days, for which we are thankful. She is still having some digestive issues, but they are hoping with the laxative it will improve on its own.
Deacon continues to be struggling more than Avi. They did end up putting in a chest tube yesterday and that will remain for 1-7 days, until the leak heals itself. Also, they were told that he would be given a blood transfusion. They had been told previously that it wouldn't be unusual for either of them to need one in the future, but obviously they were hoping neither would have to have one.
Tyler's sister has given them a book on Preemies. It gives them an over view of problems that can occur and also explanations of those problems. Tami said they have found it very helpful and nice to understand in layman's terms what is actually going on. I think the nurses have been impressed with their questions, interest in learning, and knowledge.
They were told the next two weeks will be extremely critical as that is when a lot of the problems begin to appear. Apparently, the first week was a "honeymoon period"...I would certainly hate to be on that honeymoon!
Although they have surpassed many hurdles already, I'm sure there are many more still to come. Please continue your prayers. They are felt and appreciated.
~Grandma K.
Avigail has stayed pretty constant for the past few days, for which we are thankful. She is still having some digestive issues, but they are hoping with the laxative it will improve on its own.
Deacon continues to be struggling more than Avi. They did end up putting in a chest tube yesterday and that will remain for 1-7 days, until the leak heals itself. Also, they were told that he would be given a blood transfusion. They had been told previously that it wouldn't be unusual for either of them to need one in the future, but obviously they were hoping neither would have to have one.
Tyler's sister has given them a book on Preemies. It gives them an over view of problems that can occur and also explanations of those problems. Tami said they have found it very helpful and nice to understand in layman's terms what is actually going on. I think the nurses have been impressed with their questions, interest in learning, and knowledge.
They were told the next two weeks will be extremely critical as that is when a lot of the problems begin to appear. Apparently, the first week was a "honeymoon period"...I would certainly hate to be on that honeymoon!
Although they have surpassed many hurdles already, I'm sure there are many more still to come. Please continue your prayers. They are felt and appreciated.
~Grandma K.
Tuesday, July 14, 2009
1 Week Old
Avi and Deacon both had a brain MRI done today. I'm extremely happy to report that they both came back normal. They had a 50% - 60% chance of having IVH (intraventricular hemorrhage). This is where tiny blood vessels in the brain can rupture causing bleeding into the brain. With such a high statistic, this was quite a relief to hear that their's came back normal.
Avigail continues to have issues with her stomach. They have started her on a suppository in hopes to see some bowel movement. For the time being, the doctors seem very impressed with her progress since she's so young. She has been off the ventilator since 18 hrs after birth, quite an accomplishment!! She's definitely a fighter.
Deacon continues to have issues with breathing so he had an x-ray of his lungs done. The x-ray indicated that he was accumulating air between his lungs and chest (also known as pneumothorax). This air was there due to a small leak in his left lung. The doctor was able to suck the air out with a needle and syringe. The doctor had to repeat this procedure in the middle of the last night as air was building up outside the lung again. They are getting another x-ray to see if the leak is still there. If this doesn't resolve on its own, they will have to put in a chest tube. The doctor makes a little incision in Deacon's chest, and inserts a plastic tube into the space between the lung and chest wall. With continuous suction, the tube will draw out the air that has collected, and prevent more from reaccumulating.
Kim (Tyler's sister) and her husband Brad were gracious enough to invite us to stay with them (12 minute commute to Swedish). It was definitely a nice break after spending 11 nights in the hospital and a nice break from the cafeteria food :-). We appreciate everyone's prayers and support. We will continue to keep you updated.
Avigail continues to have issues with her stomach. They have started her on a suppository in hopes to see some bowel movement. For the time being, the doctors seem very impressed with her progress since she's so young. She has been off the ventilator since 18 hrs after birth, quite an accomplishment!! She's definitely a fighter.
Deacon continues to have issues with breathing so he had an x-ray of his lungs done. The x-ray indicated that he was accumulating air between his lungs and chest (also known as pneumothorax). This air was there due to a small leak in his left lung. The doctor was able to suck the air out with a needle and syringe. The doctor had to repeat this procedure in the middle of the last night as air was building up outside the lung again. They are getting another x-ray to see if the leak is still there. If this doesn't resolve on its own, they will have to put in a chest tube. The doctor makes a little incision in Deacon's chest, and inserts a plastic tube into the space between the lung and chest wall. With continuous suction, the tube will draw out the air that has collected, and prevent more from reaccumulating.
Kim (Tyler's sister) and her husband Brad were gracious enough to invite us to stay with them (12 minute commute to Swedish). It was definitely a nice break after spending 11 nights in the hospital and a nice break from the cafeteria food :-). We appreciate everyone's prayers and support. We will continue to keep you updated.
Mom spending time with Deacon
Dad visiting with Avi
Monday, July 13, 2009
"Status Quo"
Things are pretty status quo with the twinners right now. They have their ups and downs and it is pretty draining mentally and physically. The NICU called us at 5:00 a.m. (we were staying in the parent room at Swedish) to tell us that Deacon had to go back on his ventilator (this is the third time). While it's not uncommon for him to have to be on the ventilator, they like to try and get preemies off the ventilators as soon as possible as they can cause damage to their lungs. This was the first phone call we had received from the NICU, so it was scary, but we were obviously happy that the news wasn't worse.
They introduced milk to the Twinners over the weekend. Deacon seemed to digest it pretty well, however Avigail was having some issues. Her stomach was really swollen so they sucked everything out of her tummy (using a syringe attached to the feeding tube), including the air. They are going to keep her on the sugar water/vitamins for now, given through her PICC line (peripherally inserted central catheter - intravenous access). They will try feeding her my milk again in a couple of days.
They have both had RDS (respiratory distress syndrome) In RDS, their immature lungs don't produce enough surfactant. Surfactant allows the inner surface of the lungs to expand properly when when they make the change from womb to breathing air after birth. They were both given artificial surfactant at birth.
On Friday, we were able to be "hands-on" with Avigail and Deacon. This involves taking their temperatures, diaper change, weighing and changing out their bedding. They each have set care times, so we try to make sure we're there for them. Otherwise, we feel pretty helpless as there's not much else we can do right now other than admire them.
We're hoping in the next week or two, we can get them out of their incubators and start "kangaroo care" (holding skin-to-skin).
Everyone at Swedish has been amazing. It is comforting to know that they are in such good care.
They introduced milk to the Twinners over the weekend. Deacon seemed to digest it pretty well, however Avigail was having some issues. Her stomach was really swollen so they sucked everything out of her tummy (using a syringe attached to the feeding tube), including the air. They are going to keep her on the sugar water/vitamins for now, given through her PICC line (peripherally inserted central catheter - intravenous access). They will try feeding her my milk again in a couple of days.
They have both had RDS (respiratory distress syndrome) In RDS, their immature lungs don't produce enough surfactant. Surfactant allows the inner surface of the lungs to expand properly when when they make the change from womb to breathing air after birth. They were both given artificial surfactant at birth.
On Friday, we were able to be "hands-on" with Avigail and Deacon. This involves taking their temperatures, diaper change, weighing and changing out their bedding. They each have set care times, so we try to make sure we're there for them. Otherwise, we feel pretty helpless as there's not much else we can do right now other than admire them.
We're hoping in the next week or two, we can get them out of their incubators and start "kangaroo care" (holding skin-to-skin).
Everyone at Swedish has been amazing. It is comforting to know that they are in such good care.
Avigail
Avigail already does the "Johnson thumb hold"
Deacon resting
Sunday, July 12, 2009
Making Progress
Spoke with Tami and she said Deacon is now off the respirator. He had also regained 1 ounce! Avigail started having some stomach issues, probably not being able to digest the colostrum from Tami's milk. They x-rayed her and everything seemed OK, so they emptied her stomach of the milk and air. They will try to introduce the milk again in a couple of days. Tami and Tyler will be able to stay up at the hospital again tonight. Tyler may not go back to work until Monday now.
~Grandma K.
~Grandma K.
Saturday, July 11, 2009
Got Milk?
Deacon is still on the ventilator and he will probably stay on it for another day or two. His sodium and potassium are a little off, although changes have been made to help with that. Tami got to help change them this AM. She was afraid to help last night as you have to stand for about 5 minutes in an awkward position and she wasn't sure she could. I think it has made them feel a little better as they can have a little hands on now, so they feel like they are doing something! The babies go through this routine at a set time 6X a day, so Tami and Tyler know the good times to be there now to be a part of their care. Avigail had lost 2 oz. and Deacon 3 oz. which is pretty typical and expected, although he had lost 20% of his birth weight which is a little more than they like to see. Tami's milk is coming in, so she is having to pump every 3 hours around the clock and is able to freeze the milk for the babies. They have started giving them the milk through their umbilical cords. After visiting the twins this AM, they went back home for most of the day. They were to go back up to the hospital to stay again tonight. Other than that, we are so thankful they have not run into major problems at this point in time. That is positive, although we know how quickly things can change. Your prayers are definitely felt.
Dad lifting Avi while they scales zero's out
Avigail's monitors
Dad lifting Deacon while the scale zero's out
Dad tucking Deacon in for the night
Friday, July 10, 2009
Leaving Empty Handed
Tami was discharged today and it was a very difficult and emotional time. Discharge always takes longer than anticipated, which was very tiring and of course the twins were not going home with them. They were definitely glad to be able to go home for the first time in over a week. They said their dogs appeared to sense something was "different". Tami and Tyler were able to shower and repack and they will spend the next two nights in the hospital in a special room for parents with babies in the hospital, at no charge. When they went back to the NICU tonight, the nurses were beginning to change the babies and take their temperatures. Tyler was allowed to hold both of them up and help take their temps and change their diapers. Deacon peed while Tyler was holding him and that made Tami's day. She said she never thought she would be so excited to see him pee on his father! Deacon appeared a little agitated, so Tyler held out his finger and Deacon grabbed on and it seemed to have a calming effect, so that was encouraging to them too. For the most part, things continue on a positive note. They have crossed another critical roadblock, the first 72 hours. Keep those prayers coming.
~Grandma K.
~Grandma K.
Thursday, July 9, 2009
Emotional Rollercoaster
Both babies seem to be continuing to hold their own. Deacon had to be put back on the respirator this evening, although we are told that is not unusual. Tami and Tyler continue to appear to be holding up well, although we can only imagine what an emotional rollercoaster ride this must be for them, watching their babies struggle and feeling so helpless. Tami is still expected to be discharged tomorrow and is continuing to regain her strength after being on complete bed rest for 5 days. During that time though, it allowed the babies to grow a little more and she was given steroids to help develop their lungs a little more rapidly. Hopefully that is helping. She is usually able to go to the NICU in the AM and again in the PM. Please continue your prayers.
~Grandma K.
~Grandma K.
Wednesday, July 8, 2009
Visitors
Grandparents, aunts, and uncles were able to get their first glimpse of the new, precious angels, Avigail and Deacon, today. They are both off their respirators and on CPAP (continuous positive airway pressure). Although they are definitely small, they appear to be bigger than we anticipated. Their hands and feet are fully formed with long fingers and toes. They even have hair on their heads, although we can't see their little faces with the CPAP machine and pads on their eyes. There are lots of tubes, but we are encouraged that each one has a purpose and they are functioning as expected. It is anticipated that Tami will stay in the hospital until Friday, when she should be discharged. Both Tyler and Tami are holding up amazingly well. Although Tyler loves to show off the babies, I think it is exhausting taking everyone up to the NICU (neonatal intensive care unit) see the twins. Only one person can go with him at a time and each trip takes about 15 minutes. With so much family, that can be brutal. They anticipate the babies to be hospitalized about 3-4 months. Please continue to keep them in your prayers.
Love, Grandma K.
Avigail Taylor
Deacon Ace
Deacon AceLove, Grandma K.
Tuesday, July 7, 2009
Our Little Miracles Have Arrived
Tami and Tyler welcomed into the world their two bundles of joy, Avigail Taylor at 6:30 p.m. and Deacon Ace joined the world at 6:31 p.m.
Tami had been taken to the hospital by ambulance on Thursday July 2, 2009, in premature labor. Although they were able to slow down her labor, and she appeared to be stabilizing a little more each day, she was fully dilated and had to be taken to the OR suddenly for an emergency C-section tonight. Avigail was born first and weighed in at 1 lb 7.3 oz and was 12.4" long. Deacon was 1 lb 10.5 oz and 12.6" long.
Although they both appear to be fighters, it is going to be a long haul! Both Tami and Tyler were able to see the babies tonight. Please keep them in your thoughts and prayers.
~Grandma K.
Tami had been taken to the hospital by ambulance on Thursday July 2, 2009, in premature labor. Although they were able to slow down her labor, and she appeared to be stabilizing a little more each day, she was fully dilated and had to be taken to the OR suddenly for an emergency C-section tonight. Avigail was born first and weighed in at 1 lb 7.3 oz and was 12.4" long. Deacon was 1 lb 10.5 oz and 12.6" long.
Although they both appear to be fighters, it is going to be a long haul! Both Tami and Tyler were able to see the babies tonight. Please keep them in your thoughts and prayers.
~Grandma K.
Wednesday, July 1, 2009
Week 24
Each babies skin is becoming more opaque as the fat starts to pack on. And, thanks to the formation of small capillaries, their newly thick skin is taking on a fresh pink glow.
Here's what's going on in my belly:
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